Coping with Occipital Neuralgia Without Medication

Surviving migraine without medication is difficult. Treating occipital neuralgia without medication seems downright close to impossible. Now, it looks like I’ll have to do both.

A headache specialist finally serves my area. I typically prefer female doctors, but every headache specialist I’ve ever encountered has been male. This one was no different. What was different, however, was I didn’t have to drive over three hours to see him. And, he came up with a treatment plan (that didn’t involve a million medications I’ve already tried) within the first visit.

Unfortunately, it was a treatment plan I can’t commit to following.

Dr. G. believes I may have occipital neuralgia, which is complicating my migraines and triggering them more often than they would otherwise be triggered. However, the only way to diagnosis the problem is to treat it, and see if the treatment works.

I’ve actually been down this path before. In 2008, a pain management doctor believed the same, and gave me a single occipital nerve block. It didn’t help, and so we didn’t repeat it. Dr. G. believes we may have given up too early or that my migraine (which lasted from mid-2007 to mid-2009) was too entrenched to shake. A nerve block now might provide some relief.

But, I can’t take it, at least not without putting efforts to conceive on hold for at least two months. The nerve block includes a steroid, which is contraindicated in pregnant women. The steroid remains active in the body for up to two weeks. If I need two, they’d be given at least three weeks apart. Therefore, Dr. G. won’t do it unless I agree not to get pregnant for at least two cycles.

I’ve decided I’m not going to do that. So, I’ve been digging for natural treatment options that could relax the neck muscles and perhaps provide some relief. I’ve also been trying not to spend hours and hours at a time reading or typing with my head at a downward tilt. (Apparently, that aggravates the nerve.)

So far, I’ve read that massage, heating pads, and meditation may help relax the area and calm the nerve. I’m interested to hear if any of you suffer from occipital neuralgia, or migraines triggered by occipital neuralgia. Do you have any tricks for relieving the pain? What works for you?

126 thoughts on “Coping with Occipital Neuralgia Without Medication

  1. Hmmm. I’ve not heard this condition before. Have you been to a massage therapist or doctor who can address tight neck muscles, if that is the case? It took a long time for me to find, but I have awesome care from very knowledgable and skilled massage therapist/cranial sacral therapist, acupuncture and pain psychologist. I have chronic headaches and the likely reason is the muscle spasms in my shoulder and neck. The suboccipitals are in a spasm. My massage therapist tells me the tight muscles can cause pressure on the nerves and tightness in other tissues in the neck and head and can cause headaches. For tight muscles, they tell me to apply heat, do stretching exercises (designed for me), take epsom salt baths, relaxation techniques, meditation, mind/body work, etc. I go to massage and cranial sacral therapy weekly, and acupuncture about monthly. They tell me ice or cold will tighten the muscles more, which is not good. They also warn that patience is required. Loosening tight muscles can take a very long time if they are in a spasm. I don’t know if this is pertinent to you, but at least it’s more information.

    • Thanks for the extra info, Fergiemoto. I don’t think tight muscles are a problem in my case most of the time, but when I feel sore I make sure to apply heat and do some extra stretching. (I also have to remind myself not to sit with my head tilted down toward the computer and/or a book all day!)

      • I do not know if I have occipital neuralgia but a month or so ago out of the blue I suddenly got the most painful headache ever. It was unreal. It felt like needles were pricking my face. I went to ER and they said my MRI was totally normal. They diagnosed me with migraine. Since then my migraines have been much milder. Initially feverfew was working for me. I do not know what has happened, if something else is causing me head pain or if some supplement is not interacting well. I am taking b2, feverfew, krill omega, coq10 and 5 htp. I do not want to say it is not working because I am not in unbearable pain. But I get these occasional very brief throbs throughout the day. I also have some essential oils and migraine homeopathics. I put my head over a steam bowl a few times a day with acv.

        None of these are shutting off the signal but there is a chance that it could be reducing pain and frequency that I might otherwise experience if I were not taking such great care of myself.

        I also try to use my treadmill every day.

        So I am thinking now to try a few things….one is basil. Two, I am going to switch the type of magnesium I take to magnesium glycinate to see if I can take that kind at a higher dosage without diarrhea. Three, I am going to get ubiquinol which is ten times more bioavailable than coq10 itself.
        Needless to say I do not want to be on medicine.

        Oh I might also try fresh feverfew leaves or dried as tea to see if it is more bioavailable than the supplements.
        I have capsaicin but it burns like crazy.

    • I have it all as everyone has stated. I finally got into Johns hopkins dr but he gave me toradol nasal spray,,maxalt. dhe nasal spray . Cream for neck,and blood pressure meds to take everyday. Cannot get return calls from the office. I am scheduled in a month for botex. if ins.will paid and nerve block. Nothing is working. Ive tried every spray , cream except blood pressure meds.
      As I wait I am trying acupuncture. How many times should I try? How do I find cranial sacral therapist and what do they do. I am in pain so I can’t right anymore.

      • Hinihave suffered with his for 15 years and I currently have cryotherapy once a year where hey go inside ur head and freeze ur nerve it gives me pain relief for 1 year I also take lamatrogine to try and stop the pain and codeine for the pain. It is now starting to come back as I had my last cryotherapy in September last year when I was pregnant the pain is so bad no one understands

      • I’ve been dealing with occipital neuralgia for almost 3 years now. I’ve found relief with a combination of physical therapy, traction and occipital nerve blocks. If I let one of those lapse the pain returns, although it hasn’t been as bad as it was when I first was diagnosed. I feel fortunate that I found something that works for me. So many people suffer for years without relief. Mine is believed to be caused by deconditioning of muscle in the neck. This surprised me because I’ve always be so active, it’s a pretty involved explanation. Short version is we just don’t exercise those muscles like we do are arms, legs & abs. It’s not the same for everyone but I hope it helps someone else out there

      • For any of you out there, do the headaches come intermittently? I’m sure I have ON and it was caused by an accident. Other than the normal chiropractors, physical therapist, acupuncturist, nerve injections (3), and nerve inhibitors which amounted to very little pain reduction, what else is there? I’m having a Botox injection in late January and a brain MRI in the next couple of weeks. What else is there to to? Cryotherapy? Would it be worth it if my headaches occur every 2 out of three days? I’m approaching the end of my second year and im frustrated.

      • Should have been more clear. Headaches are pretty severe every 2 of 3 days. Light headaches the rest of the time.

  2. I have occipital neuralgia and my neurologist has occasionally used only lidocaine w/o the depomedrol (steriod) and though it did not last as long as when I had it with the steroid it provided much needed relief for about 2-3 weeks as opposed to 6-8 with the steroid.

  3. I currently am in physical therapy for occipital neuralgia. Most days, it has been better. I have had several prescriptions for pain meds but I’ve had severe allergic reactions to all of them and ended up stopping them. I’ve also had the nerve block – didn’t do much for me, either. And to have a doctor that doesn’t want to work with me certainly isn’t helping any. (Their mentality is that I should just take the prescription, no matter what; and it will work itself out. I just don’t believe that.) So, I am also looking for an alternative treatment.

    • Deb,

      That’s tough. I’m sorry you’re having to deal with a doctor who doesn’t believe in alternative treatments, but I hope you find something – and someone – that helps soon.

      • I have also began researching alternative therapies. So far: I’ve heard about vitamin b12, fish/flaxseed oils, guided imagery meditation, biofeedback, warm bath, exercise, and capsaicin cream.

    • I have been diagnosed with Trigeminal Neuralgia but everything I read points more to Occipital Neuralgia. My symptoms don’t match Trigeminal at all. My doctor also believes I should just take the medication I’ve been given, but they make me too drowsy to work or drive (not an option working full time with 2 kids) so I’m currently seeing a fantastic Acupuncturist.

      The gaps between my headaches are getting longer but I’ve had a particularly bad week this week. Not sure what the trigger has been but have just come back from my acupuncturist and am feeling a bit better.

      I also find that exercise helps (even though it’s the last thing I feel like when it’s bad).

      Good luck with your search.

  4. I am also in so much pain.I went to the hosp. Last night and am picking up some kind of med. Today I feel for all of you because I do not believe people realize how painful this is.its turning me into a alcoholic because it goes away if I have about 4 drinks until they wear off.I am ready to rip my head off.:(

    • Dawn,

      I’m so sorry to hear you’re suffering so badly. Alcohol was always a good treatment for me, too, but I’ve had to find other ways to cope since I became pregnant. I hope the medication the hospital gives you helps. Remember – you’re not alone! Here’s wishing you migraine-free days in the near future.

  5. Hi there! This is my first time to post anything, and not to make too much light of it all but, hi my name is Paul and I have a headache. I can completely, whole heartedly, understand the feeling of wanting to rip my head off. I have asked for a guillotine, real exploding bubblegum, and just the silent pillow over my head. Thankfully I am loved, as I am sure you all are too. I have had a year long affair with a terrible pain in the back of my head. Coupled with random ice picks or lightning strikes. I am on tramodol and neurontin, have had 5 nerve blocks in my neck and now one radio frequency neurotomy. I have been told it will take 2-4-6 weeks for the procedure to be affective. It has taken my ability to work, and left me with a faded memory of a pain free life. The hardest thing any more is the looks of sympathy. I am hopeful and reading about people dealing with the same troubles is comforting.

    Please rest easy, Paul

    • Neurontin has terrible side effects. For me & others I know, the pain actually increased with neurontin. The side effects of neurontin: coughing, sneezing, flushed dry skin, body aches, congestion, dizziness, prinkling feeling, and nausea.

      I have also experienced bad side effects with tramodol: disorientation, dizziness, sweating, vision changes, and fever.

      Just look out for yourself, as many prescriptions actually make matters worse. I suggest you keep a journal of when you start something new & the changes that take place (good or bad). Then stop the prescription if the side effects make matters worse.

      I actually have found that: meditation, massage, hot showers/bath, and physical therapy all provide temporary relief.

      I caution everyone to think: are you losing your life to the disease or to the prescriptions used to treat the disease? Sometimes: it is the prescription.

    • HI Paul. I too have thought of a bullet to the head. But I am a Christian and have a loving family. I have tried it all; 5+ chiropractors (who all told me it was my atlas or first vertebrae-they were RIGHT!), 3 Neurologist who where the MOST worthless and cost the most, and a Physical therapist who has helped the most. Still not completely pain free but I’m doing a lot of exercises-you HAVE to do them. Find a good physical therapist-call your MD and request one-Question them on the phone and ask if they know ALL about Occipital pain!
      God bless and good luck.
      Jean

  6. I just discovered tonight by accident that I have suffered for 32 years with what I think is Occipital Neuralgia instead of Migraine headaches although after reading I can see where migraines have been included. I can only tell you what I have experienced in all these years. I now have stage 3 kidney disease from taking too much over the counter pain medicine for the headaches. My kidney Dr. said he understands how I wouldn’t know that and that I shouldn’t feel guilty because most people don’t realize by taking over the counter meds that they can do so much damage. I now take 75mgs. of Topamax to ward off headaches which seems to help as I don’t have nearly as many as I use to. And the only pain pill that I found through the years that has worked is RELPAX 40mg. It is extremely expensive and my insurance will only allow me 6 a month but I keep them with me always. I can now say that I can go sometimes 9-l0 months without a headache which is unbelievable since there was a time when I suffered usually every 10 days with 3-4 days of headaches. Once I had one that lasted for 23 days. I have told many a Dr. and my husband if someone would have given me a gun during some of these times during a headache I would have put it to my head. I’m sure I’m not alone in this thought either. I have two friends that suffer with headaches as well and they agree.
    32 years is a long time to have had these but now that I know what the cause might be that is some relief and I can work on how to fix them now. Because up until now I could never put my finger on what exactly was causing the headaches. Now I understand.
    I hope I have been of some help to you and my heart goes out to all of you that have suffered from these terrible headaches. They rob you of your freedom and your life and you find yourself not making plans because you never know when one will strike. I got so I hated traveling because I always ended up in bed for 3-4 days after we arrived somewhere. Now I know why. Carrying a carry-on bag that weighs too much on your shoulder through an airport or in an out of a hotel will bring on one of those headaches quicker than anything. Oh, Gosh!!!!!

    • Linda,

      I’m glad to hear the triptan medications work for you. They’re miracle drugs for those they help. I’m also glad to hear you’re experiencing relief from the Topamax. I wish you continued good health and as many pain-free days as possible.

    • Just wanted to give you a little warning about Topamax. I was on it for seizures and these occipital headaches. Worked very well for both! But alas, the worst side effect, mostly for women, is hair loss. I didn’t notice it at first, but within 6 months I had lost approximately half my hair. Once I stopped taking it, it took two months for the hair to stop falling out, and another two before I started seeing regrowth. Keep an eye out ๐Ÿ˜‰

    • I’m glad you have found some relief, but be careful with the Topamax. My daughter was on it for about 8 months when she was 16 yrs. old. Her headaches were under control and all of us decided it was best to try to go without it. Life was fine until 3 days before college graduation when she ended up in the emergency room with kidney stones! She had never had a problem with stones, don’t run in the family, etc. but 2 years later I read that one of the side effects of Topamax is kidney stones after 5-6 years.

  7. Hi, I’m Jen, I was diagnosed last year, but I’ve had occipital neuralgia for 6 years, undiagnosed. For me, I use a combination of ice and heat. First I ice the pain away, and then I use a heating pad to loosen the muscles.
    Nerve blocks didn’t work; neither did gabapentin and amitryptilyne. I’m on topiramate and tramadol now, but topiramate isn’t doing anything, so I’m going to switch the next time I see my neurologist. Finding the right medicine is key. I hope that you find a cocktail that works for you!

  8. Hi, I have had occipital neuralgia and migraines for the past four years. My pain comes every night while I sleep, if I can sleep. When I wake up my headache is fairly severe, and it feels like my scalp has fallen asleep and hurts to touch. The headaches seemed to have started when I had two wisdom teeth extracted, which traumatized my already problematic TMJ, and triggered tinnitus. I very rarely had headaches before that. My neurologist has done nerve blocks in the back of my head with lidocaine and/or novacaine, which worked very well for a few months. He prescribed Keppra 250mg/day, which worked great but it makes me very irritable, so I take it on and off as needed. Last week he asked me to try Topiramate, which I tried for two days but it really made me sick so I stopped that. He says he is giving me baby doses but that I am very sensitive to the medication. I may try a quarter tab of Topiramate next week and see if I can tolerate that. He recommended staying away from caffeine and chocolate, and getting tested for Sleep Apnea, which can also cause the headaches.

    I find my pain is worse if I sit at my computer at home with my arms extended out too far and my neck unsupported, so I try to find the best position. My pain usually subsides during the day and I am thankful for that, but I dread going to bed each night while I hope for the best.

    I do go to the chiropractor, massage, and use two pillows to keep my neck and spine in line because laying on one flat pillow was causing more pain. I occasionally take an NSAID if I really need it. I prefer natural alternatives to medication so I also try homeopathic remedies when I’m not taking the meds. Still looking for the right one.

    Thank you for this forum. It really helps to see how others are handling the problem.

    • Pat,

      That sounds awful! But, at least you have a neurologist who seems interested in really working with you to come up with a treatment solution. That’s invaluable. I hope that you find something that works soon.

      • Thank you Skhackley. As an update, the Topiramate 25mg, 1/4 tab in am and pm has helped tremendously. I am now almost pain free during the night. I will continue on this for the forseeable future and pray that it remains under control. Hope someone else can find some help with this.

  9. I have suffered from Migraines since I was 22. In the fall of 2009 my migraines turned into something I had never experienced before in my life. I thought I had a brain tumor, it felt like someone was shocking my head 24 hours a day 7 days a week. I went to bed with this horrible pain, woke up with, went to work with it, it NEVER went away and never got better no matter what I did. I was scared to death, as the days, weeks and months passed it got so bad that I ended up in the emergency room several times and the favorite cocktail did not work. I was loosing hope that this was never going to go away. I was a work and it got so bad that I couldn’t walk, they took me from my desk to a room up in the front office and called my husband, he came and got me and immediately took me to a different hospital in a larger town nearby. I was diagnosed with Occipital Neuralgia, went to several neurologists with no luck in the beginning, finally went to one that specialized in nothing but migraines. He did several medication treatments and those did not work, with no where else to turn he referred me to a pain management specialist. My first thought was great here we go again just pawning me off on another doctor. I wasn’t going to go but my husband said “What is it going to hurt”? So I went and on the first appointment he did a nerve block and it worked finally I was pain free for the first time in Months, after a few of those, he scheduled me for a surgery where they went in and severed the occipital nerve on the left side of my head. This surgery was done on an outpatient basis and is supposed to last up to 2 yrs. My first was done in March 2010, and then, I had it done again in September of 2011. It is now October 2012 and I have been seeing a Chiropractor since February of 2012 trying to avoid having it done again. So far it has been good, but the last couple of months have been horrible and so stepping up my visits with the Chiropractor to see if it calms them down. I have found that ICE PACKS do help. Hope anyone that has this condition finds relief it is a horrible thing to have and experience. Feeling like you have a Cattle Prod going off in your head 24/7 isn’t fun at all. Good Luck!

  10. Ive been suffering from occipital neuralgia for four ir five years now. Im undiagnosed however its quite clear it is what it is. Im currently pregnant and its gotten so much worse. Ive had bouts in the past where my headaches woukd last for up to 13 days without pause. I was always uninsured so i couldnt see a doctor or get any real treatment. I would see a chiropractor three days a week and it helped but i could only afford to go for a few weeks then i would stop. When i first started dealing with the pain i took way too much o.t.c medications and now i also suffer from kidney pain consistently. Its frustrating to say the least. Ive found that soft ice packs on the back of my neck work well or on my temples/ forehead. Massage helps a lot too. But it doesnt cure it and its expensive.

  11. Hi, I’m late to this discussion. I had a bike accident and two car accidents as an adult and received jolts to my head and neck. I had terrible headaches and electrical heart problems for which no doctor in my area put two and two together. I ended up going to the Cleveland Clinic. I was diagnosed with Occipital Neuralgia in 2009. I’ve had several nerve blocks, physical therapy & icing, and put on Cymbalta and added 500 mg of magnesium oxide supplement. The nerve blocks, if delivered in the right area of your pain, will work but will gradually loose their effectivemess. Repeatedly ones, don’t work as long as the first time. I’ve been through multiple massage sessions and several times to an accupunturist. Nothing but the Cymbalta and physical therapy seem to help. I went through one pregnancy and stayed on Cymbalta until my 3rd trimester. The hormones took over at that point and kept the pain and headaches at bay. Carrying a growing baby around and breastfeeding brought back the symptoms. Now I’m having another child and they took me off the Cymbalta at 10 weeks and the pain has been unbearable lately. I can still take the magnesium oxide and it helps. I’ve heard that being vitamin D3 deficiency can make this condition worse so I’m probably going to ask for a test for it. I’d love to have my nerve severed at this point, but even the Cleveland Clinic advised against it. If you can get a memory form pill that can contour to your neck, get a rope ice pack, and try the magenesium oxide. If you can find someone that can do massage trigger points, (it hurts like heck), to reduce the muscle tension in your shoulders and lower neck, you won’t believe the difference. Btw, some of the other medications listed above by others are used migraines and depression, not actuall nerve blocking properties. I tried to go to local doctors that prescribed some of these, they didn’t work and made me feel crazy. When you talk to you doctor, specifically ask for nerve blockers. Good luck! I can’t say it gets better or easier but if you research ways to deal with it and recognize the difference between the pain and symptoms you feel, you can manage it.

  12. If you haven’t been diagnosed, its actually pretty simple tests to diagnose. I’d been through $25,000 in medical tests, just to have him use a safety pin to check nerves. The neurologist at the Cleveland clinic did several simple tests but the most notable one was putting a vibrating back massager to the area of my neck just below my skull. For normal people the vibration just feels like vibration but for person with occipital nerve damage, the vibration can cause you instant pain, dizziness, confusion, and out of body type of experience. If you try it have someone help you. If you can’t get help from a local doctor or can even find one that will take you when you say you have occipital neuralgia, go to one of the big hospitals that take on weird cases. Many of them are like the Cleveland Clinic and have self referral pages. They took my symptoms of the electrical heart problems and headaches and sent me to one of the best neurologist in the country, who happened to be at the CC.

    Also, I’ve tried several chiropractors. Manual manipluation and those that use a vibrating tool seem to make things worse, but if they use an activator tool it helps. However, too many visits causes more inflamation around the C1-C2 where the nerve comes out of. So it aggrevates the nerve rather than the muscles. I’ve had electrical simulation on the area and also used Tens unit and it works on lower settings on my shoulders but sends pain across my head if I use it on my neck.

    Again, good luck to all who suffer from this. If you guys ever hear of a cure or some miracle medicine, please let others know.

  13. I have suffered from severe debilitating headaches for over 30 years. They would occur almost daily with varying intensities. I have seen many different doctors and neurologists and been on many different medications with no real relief. Finally one neurologist diagnosed me as having occipital neuralgia. He took me off of all medications and tried trigger point injections. I actually felt like I was living my life again. I normally have these injections every 2 1/2 months. Due to staff changes at the doctors and a change in my employment I had to go over 6 months without getting the injections. I found a massage therapist that was very interested in working with my condition. He does trigger point therapy along with myofascial release. He was a godsend during the delay in injections. I still see the massage therapist every 4 to 6 weeks and have resumed the trigger point injections. I strongly recommend finding a massage therapist trained in trigger point therapy. It is painful for several days but it has really helped with my condition. I am able to do things with my life that I never would have dreamed possible.

  14. Hi,
    I was involved in a car wreck 5 years ago and ever since have suffered from occipital neuralgia as a result of the air bag smashing into my face. The force was so hard from the device that it actually bent my eyeglass frame. The pain is not as severe as many of you but I do have an additional complication of epilepsy so my brain gets squeezed on the inside from anti-seizure meds and on the outside from the neuralgia. The accident contributed to a seizure a while later, so my meds dose was increased substantially. Some days I have trouble functioning as my head just throbs and I am incoherent with a fuzzy head and cannot concentrate well. It’s not the severity of pain as with a migraine, which I used to have as a child and both my wife and daughter suffer from, so I do understand and symphathize with those who have them.
    I tried physical therapy for months and regularly see a Chiropractor for back and neck. But to relieve the tightness and pain around the back of the skull from the occipital neuralgia the only true relief I have found comes from injections of lidocaine. At first we did so every few weeks (2 in the head and 2 in the upper shoulders). Later I could go several months. Probably it s/b done no less than every 6 months and better to do every 3-4. I tried a nerve block and it proved useless. I also got some relief from voltarin, but do not want to take 2 pills every day for the rest of my life and most of the effect was with the shoulders.

    izure drugs and nmy skull feels compressed and trhbs on the outside form

  15. Hi, I have had nueralgia in my toes for the last 6 years and I recently started using Nerve Pain Management by Forces of nature. I tried nerve blocks too, didn’t help. For anyone looking for alternative medicine this is a good option. Its a topical remedy consisting on homeopathic herbs and aromatherapy oils. It has helped me enormous. I still get twinges of pain but they are a lot more bearable than the intense burning pain I used to experience. posting the link below.
    http://www.forcesofnatureusa.com/Nerve-Pain-Management-11ml-p/117-11.htm

    Its available at Ebay, amazon. Or local Whole Foods Market, and a lot of other online sources. And they give you a 1 yr price back guaranty if it doesn’t help. Hope someone benefits from it.

  16. Hello, I’m a 15 year old in school and i believe i have occipital neuralgia since the beginning of this school year in october. I’ve self diagnosed myself with neck arthritis in 4th grade because parents didn’t understand me and family doctor refused my claim as i was so young. Before i had occipital neuralgia, I’d wake up with headaches in the morning and it gradually died down as the day went on. Blurred vision occurred daily and i thought it was because of my latent tuberculosis. After being cured of tuberculosis i thought my health problems would go away, but as soon as it did a new one sprung. I’ve always carried my backpack everywhere I go and never used my locker which may be the cause of my pain. Joining the running club tensed up my neck because of how hard the coach pushed me and i think it has accelerated my neck pain into occipital neuralgia. Every doctor I’ve went to so far said its not medical. The first one didn’t even know what occipital neuralgia was and told me not to stress(i am the most laid back and care free person I’ve met until now). Then the next doctor called me a liar and thought I was moving my head on my own but then redirected me to a neurologist i will see on April this year. I just hope i can get a doctor who knows how to help me so i can focus on my education.

  17. I believe that we have to speak the word and the word only when it comes to your body. Clam your healing.. You are healed… Stop thinking. About the diagnosis and meditate Jude 20 … We have to trust in God in everything even health.. Ask him for healing .. Lets trust him.. Please man will tell you anything but the word of God is life… I will not claim it.. I am healed amen.

  18. Tried every drug going, prescription or non prescription, nothing worked. Using caspian cream now and hoping for the best. Waiting for german camomile oil to come in at the natural store to see if that might work. Willing to try anything natural. No more drugs, too many bad side effects!!

  19. I’ve had Occipital Neuralgia since Dec 7, 2007 following a car accident. It took over a year for proper diagnosis, which came from a properly placed nerve block. I have been on Gabepentin, Amytriptaline, Topamax, Tramadol and many others, including Cymbalta. I recently quit all medications due to their side-effects and the the physical toll they were wreaking on my body. I have been implanted with a occipital nerve stimulator, which worked WONDERFULLY at first, but had to have that one removed due to infection; then the re-implant wasn’t placed correctly, so I was subjected to even more pain from the muscle tension it caused. Finally, last December I had the lead placed deeper along the scalp, which made the stimulation feel better, but the effects of the stimulation haven’t been nearly as good as the original.

    Heat causes more pain. Cold directly on the nerve works for short term. Looking into a nerve freezing therapy, currently in a trial phase. My doctor has pretty much given up on treating me. He has directed me to an opioid treatment program because I have been on those for over 4 years, not abusing, just using as needed. Currently at my whits-ends, unsure of what to do not. Been researching a lot lately as to alternative treatments. Physical therapy and massage make it worse for me. I have never thought about ending things as much as I have in the past two months…I don’t want to continue living with this kind of pain. I can’t be the spouse, nor the parent I want to be when I hurt this much.

    If you have tried the Cryo-genic treatment, please let me know how it turned out for you. That seems to be my last hope…but waiting is torturous.

    • God help you .. I just said a prayer that God will come to you and present you with a healing for your chronic pain. I pray this in Jesus’s name by the power of the Holy Spirit. I pray for a miracle for you! My husband is having pain as a result of spinal fracture surgical repair. It is so hard to witness pain in someone else but not as hard as living it. I am so sorry that you too are struggling.. God bless you and may He bring you relief soon! ((((hugs))))

  20. All –

    I was infected with the West Nile Virus in September 2012 and suffered meningoencephalitis (is a medical condition that simultaneously resembles both meningitis, which is an infection or inflammation of the meninges). Then two months later I was rear ended at 75 mph and had a horrible whiplash. I have been suffering with massive headaches for months. A friend of mine who has neck arthritis recommended this product. It is fantastic… have tried a lot of different medications, treatments, occipital nerve blocks, PT, etc. Nothing has helped. Though I have found a lot of relief with this product and doing Yoga.

    It is the Neck Comforter by Dr. Ho. The reviews are endless of people claiming long term relief from using this product. I bought mine from Walmart Online for $35.00 http://www.drhonow.com/product/neck-comforter-treatable-conditions.php

    Lizbeth
    Austin, TX

  21. rI have migraines and occipital neuralgia caused by advanced degenerative disc disease-swan neck deformity. I had helpful occipital blocks followed by a not so helpful cervical epidural-seemed to increase the headaches. I take Cymbalta and Topomax which have been overall helpful for pain. I have Gabapentin – I only take on rare days and when I do, I dump out half of the pill as suggested by my pain management Dr.

    I can’t do tasks where my neck is bent down and sleep carefully. I have had success with a good multivitamin, b and calcium, magnesium, zinc supplements. Ginger and peppermint tea help as does peppermint and lavender oil. I like to use a frozen bandana and tie around my head where the nerve goes into the head. Heat can help too. Acupuncture, stretching, meditation and yoga are helpful. No magic answers here.
    I am curious if anyone experiences memory issues during flares- this is a major issue for me.

  22. I have this also. It is very unerving. It is unbearable at times especially when combined with migraines. My doctor figured it out amd sent me right to a chiropractor. It is a wonderful thing. And I felt relief right away. It is somethimg to check into

  23. Original neck injury from being hit from behind by truck. A burning hot feeling occured 10 minutes after the hit my Lower back/bottom skull baseline burned all across. Muscles spasmed across both occipital nerves. This triggers pain worse than getting shot cleanly through and through the calf. Worst part was I somehow got Lyme too. It became infect in the blood brain area. My first real drop in pain was several weeks into receiving antibiotics via PICC line. My eyes did not require sunglasses to walk in well lit areas.
    Short story LYME still around controlled by Z packs & ceftin combo using diazepam and cholorozone for relax & Dilaudid with Oxy CR to control spasms Fecet injections helped when the were done fairly close in time eg, 3 in one month. RF worked but noticed less feeling in hands. Pain still haunting with no relief known.

  24. I have been suffering with occipital neuralgia – from poor posture, stress, and a lot of computer work. When at a hair salon and extended time at the shampoo bowl – it was exasperated. Nerve blocks seem to have confirmed ON. I tried chiro, massage, but for me – a year of therapy – including massage, ice, and acupressure finally helped. Unfortunately after a year it seems to be back and now I am trying acupuncture but looks like I ‘m headed back to the neuro for another shot. Good luck to all you suffering – I would highly suggest not giving up – and seek out ALL alternative methods, would love to hear more on cryo – genetic.

  25. I have been on all the pain meds that people have mentioned above, that donโ€™t do too much, had this monster for 2 ยฝ years now. Two things which have helped me cope are, (1) Bikram heat yoga, do it in the evenings because I am in so much pain afterwards, but not too much pain in the class. Gives me more energy, helps me mentally, and I donโ€™t feel so hope less. (2) I smoke or vaporise cannabis in the evenings because thatโ€™s when i am in the most pain. The cannabis softens the pain a bit, puts me in a in a better mood and I more easy to be around, takes away the negative vibes. Otherwise I find myself being, angry, tired, bitter, sad, donโ€™t want to talk to know one, and I want be left alone. These 2 things have stopped me going mad, they may help some poor person out there to. This condition is such a mental struggle, stay strong!

    • I love Bikram Yoga! Unfortunately, I can’t practice it when I’m in the midst of a bad migraine cycle. The heat and the 90-minute class are too much for my body. But, when I’m feeling well enough to practice, I find it to be an amazing preventative.

  26. I have no clue if my headaches are related to occipital neuralgia or not. I have seen doctors, had MRIs, etc and no one has had any answers. I think I had one of these headaches around 21 years old and then I didn’t have it again until I was around 33 after getting bucked off my horse. After that I would get the headaches on and off for years with some months worse than others.

    I get them with/without periods, with/without weight gain, etc. The pain is random. This last Christmas I noticed that weather below 32 degrees makes the pain go away. Then I realized the is a hotspot on the top part of head just left of the crown where my pain radiates from. The pain is located above my left eye to the back of my head near the hotspot.

    I started noticing that my cheek would numb after an episode, which sometimes last 4 to 6 hours on average. Then today I noticed if I squeeze a part of my ear the pain goes away. According to a reflexology chart and also an accupuncture site this is where the occipital nerve is located and makes occipital neuralgia pain go away if poked, prodded, massaged, whatever. And, it works. What also works is an ice pack directly on the hotspot, but that isn’t conventional.

    What I do is use a clothespin on my ear right where the nerve is and just wear it for awhile until I can’t stand it any longer and repeat the process for 4 hours until its gone. Will it work for you? I have no clue, but it works for me.

  27. I am wondering if I have ON as I have started to have very sharp, piercing pains at the top right side of my head that come and go during day and night for the last week, but I don’t have a huge overall headache with it just small a little tension and I don’t have a bad neck either but my neck does become painful when I sit at my computer at work all day. My doctor doesn’t know……. I’m trying to work it out myself! Thank you

  28. Hello to all my occipital nerve sufferers. I see this is pretty old and not sure any one will get this or not. I too suffer from O.N. and have for many many years undiagnoised. I have suffered from what I thought was migraines since I was in high school (I’m now 43) until last yr I found it I had 2-3 herniated disk in my neck which is causing the ON problem. Dr of course wants to do surgery but I will not do that on my neck or back, heard to many stories. So I go to physical therapy which is myofacial release, it has been ahhhh-mazzzing and helped so much. I got this cradle kind of thing from them when one starts I can lay in it and it really helps. Putting 2 tennis balls in a sock and tieing it and then put at base of skull will kinda do the same trick. Just got home from a trip a couple days ago and I forgot my cradle thingy but I had a mixed bottle I had bought from Walmart lol. I was there for meetings all weekend and didn’t have time for all this, looking around my hotel room and saw that mixer bottle and laid it at the base of my skull for abt 30-45 mins, you kind have to roll you head on it but it worked wonders. Lol, sometimes you gotta improvise to get thru ๐Ÿ™‚

    Another thing that helps me a lot is putting heat on shoulders and ice pack on the back of head/neck.
    My daughter sells AdvoCare and onetime I had a traditional migrain (cus I knew the difference at that point) and she gave me a Spark to drink and literal 30 mins later it was complete gone, being the skeptic I am lol, still unsure. A day or 2 later same thing head going to explode she gave me another one gone! So I was sold, started drinking one every morning helped not only eith my cluster migraines it also helped with my chronic fatigue too. Awesome stuff, now I sell AdvoCare as well, lol. ๐Ÿ™‚ Spark doesn’t help with the Occipital nerve headaches but often i will have both headaches at the same time so it does give some relief. But usually I have I have to lay down and ice and use my cradle thing. Do some stretches and use my oils.

    I prefer natural things myself, I do take meds but if I can find another more natural way I will. Young Living essential oils are a huge help too. I use the Valor (nick named chiropractor in a bottle) Stress Away, Peace and Calm, Panaway, and Peppermint. Actually I have tons of these oils and they truly do do what they say. So maybe it will help you guys as well. I apply to shoulder and neck area and any where else I hurt, lol ๐Ÿ™‚

    I will keep you all in my prayers, chronic pain is no fun at all. Keep pressing in and on and never give up!! ๐Ÿ™‚

    • hello, I have had occipital neuralgia for 1 1/2 years, as far as I know anyway. My doctor does not have a clue but I have found a great physiotherapist who believes that is my problem. She believes this nerve is stuck or compressed by surrounding tissue due to 2 motor vechicle accidents I have had with whiplash. She has been successfully been treating me for the last 2 months by manually trying to free up tissue in the upper cervical area of my neck. Other than her I have found good relief in chiropractic care, but try a NUCCA type chiropractor which is very gentle type of chiro. Also somethings that have helped me a great deal is a herbal pain relief pill called curamin which main ingredient is the active ingredient in the spice Tumeric. A Nutrisionist put me onto it and it really has helped with the pain, in order for it to work you must take at least 10 a day not 3 as suggested on the bottle.. Try it . Give it a week and you will see results , I did anyway. The only other thing that has been great is wet heat . I bought a hot tub and I go in there 2 times a day and helps. If you do not have a hot tub try a normal tub or long hot show with the nozzle on your neck for a extended period.
      Sorry one more thing if you can find a goon massage therapist try deep tissue massage to neck and ahoulder area
      best wishes,

      John

  29. I also get this. Mainly appears after running of if I pick up anything heavy and awkward and hold it infront of me. For years I thought it was my neck as that’s where it hurts! But my Physio (sports therapist) has pinpointed it to my shoulder. Hence picking things up and running sets it off. Sports therapy is great BUT sometimes it can trigger the headache, but that means there was a knot or trigger point in my trapezius. Regular weight lifting (controlled and smooth lifting helped) and I’ve noticed a recurrence of symptoms now I’m not lifting so often due to work/free time! My advise is regular exercise and STAND UP STRAIGHT!! Very important as when you slouch, all the upper trapezius muscles are pulled. Shoulders back and head high stop this.

    I still get the headaches. I just need to religiously exercise and not stop. It’s when I stop exercising for a few days that I seize up and that’s when the problem starts again.

  30. I currently have occipital nerve damage and have gone 22 years in diagnosed until this 3 years ago I have currently home through nerve blocks I jetted in to my head. Ketamine injected in to head and have just recently had cryotherapy to the nerve which is now wearing of and pain is coming back. I am on lamotrogine to stop the pain but as wanting to get pregnant I am coming of all drugs. My next operation will be like a pace maker to send waves to stop pain altogether as my neurologist won’t cut the nerve as he says it can grow back deformed and cause more pain in the long run. This pain is horrible and I hate suffering I am trying to find methods to manage the pain without medication so I currently have oxygen for 12 minutes at home and that sometimes stops the pain I find I’ve works it stops the stabbing burning aching pain. I feel for all those who currently are undiagnosed as I knownt took me to end up in accident and emergency 3 times before they started doing anything as I felt like I had a tumour in my head since I was 11 I can go a few weeks without pain but when it comes it comes back with a vengeance across my eye and everything. They have cut scar tissue of the nerve hoping this would also stop the pain but as I can feel the pain coming back I doubt it very much

    • Hi Tammy rose
      I sympathise with your story and had also had to come off medication when I became pregnant in 2012. However, I continued to keep fit, kept a close check on my weight gain and much to my amazement (and with the help of all those pregnancy hormones relaxing all those muscles) I was actually pain-free by about week 20. Unfortunately, post-pregnancy the pain is back (and breastfeeding a challenge at times ), but those 9 months were heaven! So here’s praying the same for you.

  31. I’m 34 and have been dealing with burning like headaches since the end of July. After the burning stops my scalp is sensative. Even if its not hurting if you run your nails down it then it will slightly burn. Around that time my child hit me hard under my chin and we think that’s what started all of this. I also carry stress around in my neck and shoulders and look down all day at my job.The ache started at the back of my neck then the burning went to the top of my head. I was in the er and they gave me a medrol dose pack (low dose) and that really helped. I have had a head ct, and an EEG of my head as well as a ct of my neck. I am now working with a Nero and he says is a occipital nerve inflammation. He said that’s why the medrol pack helped. He gave me a nerve block 5 days ago and it hasn’t helped yet. It seems worse! Anyone else had that?
    The only other issues I’m having I think are from the topamax mild blurring off and on of vision, weight loss, upset tummy from not eating. Stuff like that.

    I did have about three weeks where the pain went down to almost nothing but then I got very stressed one night and all my neck muscles tightened. I felt them do it. By the next day the burning started back. ๐Ÿ˜ฆ

    I’m on topamax now (I hate it) and they put me on gabapentin yesterday. I’m tired and stressed. I asked them to do an MRI just to be sure. I am praying a lot and scared to death about all of this!

    • Yes! My pain has increased since my nerve block. It’s been seven days since my injection and the pain has woken me the last two nights. Prior to the injection it rarely woke me. Don’t believe I’ll be doing that again. I’ve recently been diagnosed but have been having symptoms for two years. I’m pretty sure my pcp thought I was crazy finally traded her in for a doctor who actually heard what I was saying instead of what she thought I was trying to say. I’m hopeful that now that I know what’s going on I’ll be able to manage the pain. Unfortunately my decision to do the block didn’t work as I expected, not off to a great start but only one way to go…right?

  32. My brother (age 53) has had occipital neuralgia since 2006, and has tried everything to get relief, unsuccessfully. He is going to have same-day occipital nerve surgery performed at Georgetown University Hospital in DC in January. His surgeon, Dr. Ducic, has a very informative website which explains O.N. and his procedure for treating it. If nerve decompression doesn’t work, he will cut the involved nerves and bury the ends in tissue so that they can’t grow back together and cause more trouble. The scars will be hidden by hair. There may be some numbness after the surgery but, as the doctor said, most people prefer that to pain. Dr. Ducic claims that about 75 % of the patients he’s performed this operation on (about 1,000, I think) have either greatly reduced or eliminated their pain.
    If you Google Dr. Ducic in Washington DC, you’ll be able to read all about the various peripheral nerve surgeries he performs, the studies he’s published, and patient testimonials. Incidentally, my brother also saw a neurosurgeon at Johns Hopkins this month, who said that there isn’t enough evidence that O.N. surgery works, and pain management is the best one can do. My brother would prefer to try the surgery – it’s not very complicated or dangerous, and no motor functioning is involved – just the risk of numbness in the back of his head. I’ll up date this in a few months after his surgery is done.
    There are other MDs in other parts of the US who often, like Dr. Ducic, were originally plastic surgeons, who are beginning to do more O.N. surgery. One of the morning TV news shows had a segment on it, too, and Dr. Timothy Johnson was enthusiastic about this new hope for chronic headache sufferers.
    Hope this helps.

  33. Hi
    I’ve suffered with occipital neuralgia for about 6 years following a whiplash injury and have gone through similar experiences to you guys. The most effective short-term relief I found on an Oprah Winfrey website. I lift two 3lb dumbells above my head (one each hand) and bring them down slowly (ensuring my shoulders are kept back) to shoulder height. I repeat this process until the pain goes (for me normally 35 lifts). It helps to breath in deeply before you lift and force the air out of your lungs as you push the weights up.

    I’m breastfeeding my son at the moment and the pain can be excruciating, but stopping and doing my weights helps me through the difficult nights.

    I hope this is helpful to someone.

  34. Hiya,
    I’ve been dealing with occipital neuralgia now for about 7 years. I regularly see a massage therapist who uses reflexology techniques to soothe and get rid of the headaches. I have had acupuncture done in Korea and that seemed to help a lot-now that I am back in the states, I boil smooth river stones in water for 10 minutes and have him rub the stones along the base of my skull (this helps greatly) Also if you can handle the heat-try a small amount of cinnamon of clove oil on the skull base.

    Just a few things I’ve used to manage the pain! Feel better and rest easy!

  35. Weekly acupuncture has been most effective for me. My acupuncturist typically uses between 30-40 needles and I have to rest with them in for 40 minutes to an hour. Previous forms of acupuncture were not effective. Ice, followed by heat typically breaks bad cycles of pain. I also use a foam roller called a “rumble roller” to prevent attacks. Walking during good days also helps prevent attacks (irritates if done on a bad day). While I still have pain daily, it’s more bearable with these treatments and all these are safe to use during pregnancy! ๐Ÿ™‚ I’ve been fearful of getting pregnant with this condition, not knowing if I could handle it. Any reports on how pregnancy affects the condition?

    • Hi Kelly
      Everyone has different experiences, of course, but weirdly I was pain-free during pregnancy. Something to do with your hormones relaxing everything. It was heaven and I was gutted that the pain returned a month after my son was born.

  36. Hi everyone,

    I’ve recently been diagnosed with occipital neuralgia. It’s so horrible and taking over my life. I developed it in august 2013 and it went away after about a month on its own. It came back again in November and hasn’t gone away. I’ve been through numerous tests to rule out other issues and my dr has diagnosed me with this. It’s debilitating. Does anyone have the constant irritation? Mine seems to never lessen unless I’ve had some drinks which I see some you also agree with! Im 22 working part time and going to college full time it’s making getting up everyday so hard. I’ve been doing massage therapy, heat and ice whenever I can but therapy is expensive. My dr just prescribed me with amytriptiline. I’m scared to take it because last time I took ativan I had really bad side effects. My dr said at this dosage it is purely used to treat nerve issues not depression or anxiety but I’m still a little concerned but I’m also at the end of my rope. I seem to be crying almost everyday because of it. It’s so uncomfortable and part of me is always scared that it’s something else. I’ve had ct scans blood tests and seen by many drs but I’m still worried. I just want to feel normal again. I don’t know how to cope with this anymore.

    • Clemmie, I am in the same boat as you. 21, college full time, working part time. I was just diagnosed with occipital neuralgia and I have tried everything. No amount of heat or massage can even dull my pain and I have it 24/7. The only things that helps me is having a few drinks, which I obviously cannot use as a method of treatment. I can’t rightly have a few beers before my morning shifts at the cafe or before I go to class five days a week. However, the pain is 100% unbearable. I scheduled a nerve block for this week and it was canceled and pushed back another week. Just the thought of having to wait another week and a half for relief is really excruciating as I cannot function. Now I just have to pray to the gods that the nerve block actually works. I’ve missed numerous classes and rehearsals, neglected homework and stayed home because I literally can’t get out of the house because the pain is so bad. I don’t know how to explain to my professors how hard it is for me to get by. My doctor gave me nortryptoline to treat the nerve pain but not only did it have no pain relieving affects even after sticking with it for a few weeks, I noticed it started giving me anxiety and palpitations. I stopped the medication and can only hope that the nerve block will help. I can’t sleep at night, sometimes I will go three days without sleep because the act of laying my head on a pillow causes such sensitivity I can’t fall asleep and I can’t wear my hair up anymore. It has literally taken over my life. I did find one thing that helped me. Over the summer I was in Singapore and I tried a combination of acupuncture/cupping. After one 15 minute session I was 90% better for months. It was a total miracle. But now, back in Boston I have tried acupuncture and cupping here and it doesn’t work at all, it’s just a different method I guess and is not helping like it did in Singapore. I am not having the same results even going to weekly appointments and I cannot afford it either as insurance does not cover acupuncture. I’m so sorry that you have to deal with this like I do, I know how debilitating it is and how it affects our life and education and work. I truly hope we can find something that works for us and I am wishing you the best of luck.

      • Thanks for your response I’m so sort you are experiencing this too ๐Ÿ˜ฆ it’s so horrible. How would you describe your symptoms? My head and neck feel like they’re going to explode – it seems to be going into my jaw too. Sometimes it’s tingly and then sometimes I get shooting pain. Right now it just feels so weird that I’m so scared. I’ve seen so many drs and they seem certain it’s that. I tried amitriptaline but it too made my anxiety worse and made my heart race. I definitely have health anxiety so this is making it so much worse. I don’t feel myself and just want it to go away. Acupuncture and other therapies are so expensive and we can only afford so much. I’ve read about the nerve block – that seems like the only option at this point. I hope you get that soon and get some relief.

    • My pain varies a lot like yours. Sometimes it is a painful tingling and other times it’s like sharp shooting pains or pressure and I feel like my head is going to slip open. It starts at the base of my head and spreads all over, more so on the left side of my head. I do get shooting pains all over at times though and I also have a lot of pain in and behind my left eye. When I lie down it’s even worse as my whole head is so sensitive no matter how I lay. I know what you’re feeling though. I also worry all the time, it’s giving me anxiety and I’m always questioning if it might me something else especially when the pain is so unbearable. I just try to trust what the doctors all tell me and hope that I will find a treatment that works. It’s hard because this isn’t a life threatening condition and it’s not harmful, only incredible painful. Every time I miss class I try to tell my professors that what I have is more than just a headache and that it’s totally debilitating. But I just can’t warrant taking a semester off and not graduating on time. It’s so frustrating that there is no way to alleviate the pain. We can’t just take a Tylenol and feel any better, it’s just something we have to deal with. I hope I can have success with the nerve block because I also cannot afford the acupuncture and as it stands right now I am missing school and rehearsal too much and am suffering at work.
      My best wishes to you Clemmie!

  37. Hi girls,

    I’m 23 from the UK and in my final year of university/college. Had these headaches a year ago and they’ve come back just as I’m doing finals and coursework deadlines. Excruciating pain feels like someone is hacking my head open with an axe and then squeezing my head and crushing it inside. I also have major health anxiety, my doctors given me amitriptyline but I’m too scared to take it as I’ve tried valium in the past but ironically made me more anxious than calm because my mind was whirring whilst my body felt numb, and that made me anxious!

    I’ve seen a physio and Thats provided months of relief but now it’s back I’m seeing an oesteopath so will see if he helps. Can’t afford regular massages, feel completely hopeless and like tutors/friends don’t understand just how bad it is. Sometimes it’s fine I get up go to class then it strikes and I come home and all I can do is get in bed and cry which makes it worse. Feeling so hopeless at the minute, it’s half one in the morning and I have to be up at seven. Aaarrrgghhhgg. Feel sick I’m in so much pain.

    Love and comfort to you all x

    • Hi Katie
      I real feel for and the part about ‘friends not understanding’ is particular resonant. Im unable to drive for more than 20 minutes or sit chatting for too long as being in one position causes everything to stiffen up and then the pain starts. This is hard on your social life. I hope the osteopath helps. When I went I found his gentle massage easy enough to copy myself and I now use it as one (of the many!) means of relief. I haven’t found any drugs that work at all, but trying some of the methods to break the cycle of pain mentioned on here is probably your best bet. I imagine you’re sat in one position a lot in class? You could try holding your arms above your head for and/or or out sideways (for about a minute at a time) throughout the day may help a little – make sure to keep your shoulders back and chin tucked in gently as you do it. How helpful is your GP? Mine has no understanding of the condition at all. Hope you’re coping okay – sending hugs and understanding. X

  38. Hey guys,
    I am a 28 year old who lives with Chronic migraines. I am currently receiving occipital nerve blocks and trigger point injections for chronic migraines. Before I go in I don’t take any NSAIDs to reduce the bleeding. The procedure is painful but not at all unbearable, just breathe thru it. I had 15 injections today which will give me relief for 5 days. I can drive immediately afterward and I still go to work (however I’m a glutton for punishment lol) I also receive botox injections every 3 months, and take maxalt as an abortive when I get my migraines. (the trick is to take it before they hit for it doesn’t help) I also take a low dose of zanflex which is a muscle relaxer which helps prevent the muscle spasms in my neck. They make me very sleepy so I try never to take them while at work, even though I am prescribed to take them every 8 hours. I live in constant pain, so you have all of my sympathy. Nothing really helps as much as the nerve block, but you can only get it every 6 months, I’m told. Eventually my doctor would like to deaded my occipital nerves as he believes this directly corresponds with my migraines. So my advice…..breathe, relax as much as possible, and enjoy being pain free for 5 days!! You are amongst friends here…..so I know we all understand how bad a migraine is……Good luck with all of your therapy!!

    • I also forgot to mention I have tried over 15 medicinal treatments and physical therapy to no avail. Does anyone know of anything else that helps?? I’ve tried steroids, Pamalure (sp?), Topamax, NSAIDs, tordol injections, PT, imatrex (makes me super sick) and many others. My pain is on the top of my head it shoots thru my head like an icepick. I’m sensitive to light, sound, and smells. I vomit, miss work constantly, and take phenagrin (sp?) for the nausea. I also have periodic complex migraines where I slur my speech and speak jibberish. My MRI CT scan and CAT scans are all clear.

  39. I was recently diagnosed with ON. Not sure it’s accurate though. My scalp isn’t sensitive & my pain typically stops when I lay down (knock-on-wood). Thank goodness I at least have that time without the head pain. It’s not a sharp stabbing pain either. I had migraines in my youth. The pain doesn’t compare to that. Back story – A drunk driver pulled out in front of me on Oct. 4th, 2010 (I was driving on main highway, 60 MPH) — After that crash — I had headaches & severe neck pain for one month afterward. Also, terrible stabbing pains in my sternum & left breast daily for 2 1/2 years. In April 2013, neck & right shoulder started flaring up again. I’ve done Massage Therapy, Chiropractors, Heat, Ice, Oils, etc. & things were looking up. Then, Sept. 25th 2013 — my neck started hurting again & I couldn’t shake the feeling of it needing popped. Fascia was crunchy to touch & horendous burning pain & pressure at base of skull. Sometimes the pain radiates into left temple & occasionally it crawls up the back of my head & my left ear gets a tingly, crawly sensation. Back to frequent massages, chiro’s, ice, etc. Had an MRI, sent results to Laser Spine Institute & they claim surgery will fix me (even though nothing of urgency showing…). My Chiropractor & Nuerologist feel surgery won’t help the symptoms I’m having. What to do? What to do? For the pain at base of skull – I’ve tried Reflexology, Acupuncture – both seem to help ease the pain – but, nothing is stopping it. I have an appointment for injections next week. Before that though – I have an appt scheduled with a Certified MyoKinesthetic Practitioner. I pray it helps. Also praying for all of you, for peace and comfort from the dibilitating pain.

    • Hi Denise,
      I know this thread is old, so I am not sure if you will even see this. I am having the exact same issues you described. I wanted to know if you ever found relief and how?

  40. I have had ON for over a year. Only diagnosed 6 months ago after a trip to a neurologist. I have had nerve blocks, heat ablation and will be having a chryo ablation next week. The only thing that helps is Vicodin, muscle relaxers and alcohol. I have tried Lyrica and I gained 30 lbs. I have stopped taking all pain meds because my family thinks I’m addicted. NOT. Been off the meds for 3 months and trying to struggle through without the meds. I’m hoping the chryo works. There is a surgery that takes the nerve completely out and pain is said to be completely gone. Anyone else heard of this?

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  42. Hi! I was hit by a car as a pedestrian a little over 6 months ago and after seeing a chiropractor and a pain management facility they have finally said that its quite possible my (almost daily) migraines are O.N. So far i’ve had one steroid injection in my occipital nerve but i’ve had many lidociane injections in my back and neck regions. I’m only 19 and i’m afraid my body can’t and won’t take all these medications you are all saying you’ve been given or have tried. I don’t want to damage anything, i want to live a normal life and not jeopardize anything. I’m scared and I can’t handle living the way i do. My schooling and working has slowed down and my joys in life are limited from this consuming pain. If any of you have found any natural or great encouraging articles i would love to read them.
    Thank you for taking the time to read this.
    emilymckenzie39@gmail.com

  43. Emily,

    I’m sorry you’re suffering. I understand the desire to find a natural solution to your pain. Have you taken a look at my book, “Finding Happiness with Migraines: A Do It Yourself Guide”? It is available as an e-book on Amazon.com and BN.com and as a PDF from the publisher, http://www.absolutelovepublishing.com. In it, I discuss several ways to live well without medication. It’s a very short read and may be worth a look. (It’s also only $2.99.)

    Here’s hoping you find relief soon.

    Warm regards,

    SArah

  44. Getting married on Saturday and don’t know how I’m going to get through the day. Been sat here in agony for 6 hours unable to sleep because of it. It’s going to be a challenge to sit through hairdressing, make-up, the service and reception ๐Ÿ˜ฆ

  45. i have been suffering from occipital neuralgia, or so that is what I have been diagnosed with, for 6 months now and it is really getting me down. I am 23 years old and its so hard to function with everyday life. I am in my 3rd year at university while trying to work full time to support myself. I have had ct scans on my head and neck which showed nothing. The pain in my neck is tremendous, and my head just feels odd most of the time. For the most part it feels like someone is pulling my hair or my hair is burning. Sometimes it feels like water trickling down, or even spiders crawling on my head. My scalp is quite sensitive as well. I feel so alone and tonight I am having a really bad evening. I thought to myself how long it has been and i’m just so scared its never going to go away. I have had what is considered to be a nerve block but it only made it more painful from the injection site. My DR referred me internal medicine at my local hospital, so my current DR is not even a specialist. He said he had never administered a nerve block, but basically gave it a shot anyway. I have tried amytriptaline which I only had bad side effects for. I am trying topamate for the first time this evening. I was prescribed it two months ago but avoid taking it as I am scared of the side effects. I have had a lot of massage therapy which feels great at the time but it’s not like I can have a massage therapist glued to my shoulders while I go about my day. My heart goes out to everyone on this forum suffering from this debilitating condition. The problem is the condition is so unrecognized, even most DRs are not familiar with, let alone your average joe; trying to explain to people what you are going through is tough. I get mixed reactions some seemed so freaked out and think I am going to drop dead any second, which really does not make me feel better, and others just brush it off and don’t realize how bad it is. I have developed such bad anxiety from the whole thing because I am so scared its something else. I am in tears writing this. Has anyone had success with topimate?

    • Clemmie,

      My person experiences with Topamax weren’t good, BUT I know many people have had great success with that drug. Sometimes it takes a combination of treatments to work as well. Do you have a solid rescue treatment plan in addition to your preventative? I’ve found that taking a Torodal nasal spray plus a pain reliever like Prodrin or Fioricet can offer some good relief for 6 hours or so. I hope you find relief soon. Just know: You aren’t alone, and it WILL get better. Warm regards, Sarah

  46. I am experiencing terrible pain in my occipital region that radiates over the right side of my head and neck. I was diagnosed with atypical migraines on 2001. My injury was caused from a fall in 1996. I have been prescribed so many different types of medications and nothing has worked. I have received steroid injections and recently received Botox. They both work but only temporary. I have started having more frequent headaches and am now having one and I am on day 7. I have been in so much pain that I cannot sleep or stay in one position more than a few minutes. Again, nothing I take is relieving this pain. I have an appointment with a Neurologist in next 3 weeks so I have to somehow deal with this pain until I see him. I have not yet been diagnosed with Occipital Neuralgia but I truly think this is what I have. Any suggestions of relief or comfort until I can see this new doctor?

    • Susan,

      I’m sorry to hear you’re in so much pain and that you don’t have an appointment for another three weeks. Some people have commented on this thread saying certain home remedies helped them. I would look back through the comments to see if there’s anything you haven’t tried. Here’s hoping you find some relief soon. Warm regards, Sarah

  47. I am 72 year of age and being healthy, Thanks God, all of my life. Have suffered from TMJD in my left jaw for 48 years, since 1966 that was controlled by wearing a mouth retainer at night. In September 2013 I had what I thought was a known TMJD attack. That was not the case. This time the pain was debilitating and like most of you and I couldn’t lead a regular life any more. I thought here goes my retirement. I was prescribed all kind of drugs by my regular doctor. From October 2013, I was prescribed and took: Baclofen; Oxycodone/Acetominophen; Cyclobenzaprine; Temazepan; Methylprednisolone; Tramadol; Vicodin; Carbamazepine; in March 2014, was Diagnosed by a Neurologist with Occipital Neuralgia and prescribed Gabapentin that I took for 3 months but only worked at high dosage that made me a zombie; In April 23, 2014 was prescribed Lyrica 75mg-2 Capsules Per Day And Cymbalta 60mg — 1 Capsule Per Day and what a miracle. SUDDENLY I AM ABLE TO FUNCTION NORMALLY AGAIN, WITH A MINIMUM OF PAIN. I wear a neck brace when sitting down, wear Carpal Tunnel Syndrome globes in both hands when I am reading or sleeping (so I don’t press the back of my head), go to sleep with one globed hand in the back of my head, walk 3 miles, 3 day per week, swim for 25 minutes, 3 times per week, see an Acupuncturist every 2 months. I took a lot of points from the site that I am going to try because I would prefer not to have to take any drugs at all. Hope this post helps someone because this pain really can destruct your life. Fortunately I have my Faith and I was able to recover a life with minimum pain. Warm regards, Hugo

  48. I had surgery for a Chiari Malformation almost for years ago, after a year of no pain, the pain came back. After a few years of being passed around from almost every doctor I can think of a great neurologist put me on topiramate. This has helped with my nausea, vertigo and dizziness, but not the severe pain in the back of my head. I did try trigger point steroid injections which helped amazingly at first but stopped working after close to a year.I tried ice, massages, physical therapy, muscle relaxers, even a Chiari specialist to make sure I didn’t need surgery again. I found out there thatI have Occipital Neuralgia, a common side effect from the Chiari surgery. I do not do pain meds and will not,but I did try Gabapentin… hated how I felt and didn’t work at all! I am going tomorrow to get Cryotherapy done and hopefully this will help. I believe that everything happens for a reason and maybe that I have this struggle to learn something from it. It could also be a lot worse! I push through the pain every day because I have 2 little boys who I don’t want them to remember their childhood as mommy also being in pain or laying down….. my husband helps a lot, but there is only so much he can do. The rest I believe is in God’s hands ๐Ÿ™‚ I will let everyone know how the procedure goes, it is one of the last options, but with faith and prayers everything will work out how it is supposed to ๐Ÿ™‚

    • I too have Chiari and suffer with occipital neuralgia. I haven’t had any sort of treatment for neuralgia yet because my insurance finally just kicked in. Surgery for Chiari was over 2 years ago. I kept waiting for the nerve to repair but just hasn’t gotten better. I am curious if you have found any relief yet. Mine is strictly on my left side with pins and needles, numbness and pain in face, neck and shoulders. It literally starts right at my incision and only left side hurts. Right side is completely fine. I also have TMJ, again mainly on left side. No headaches though, thank goodness.

  49. I’ve found my occipital neuralgia is triggered by a dilation of my blood vessels which also causes my migraines. I’ve started taking 5HTP, which is precursor to a neurotransmitter in the brain that regulates vasodilation and in turn helps to constrict my blood vessels to a normal width. I find this lessens the pressure on my occipital nerve, also it improves serotonin and therefore improves my mood.

  50. I too was bump past and past and bump to different doctors. I was taken to the hospital by ambulance cause the pain was so bad I could not stop crying. Again I was past and sent home. Two days later I was back at the emergency .X ray showed c6 and c7 were bad. Still past as just migraine. Two days later back to the emergency room just before they were going to release me a long comes a neurologists and BOOM . She said ON .I went from not able to walk or even getting out of bed with out passing out to now I’m about 60% walking . I have been getting shot for the past year. A month ago they added steroids for the first time. I’ve been on all kinds of medication now I’m on hydrocortisone Zolfo and diazepam. I have tried ice pack heat pads cream. Last month I read about the TENS UNIT . WOW It does work it does not take the pain 100% away but it does bring it down to a 2 of pain leave. One thing good came out of all this . When they did the MR I they found an ayresiam or how ever u spell it . I’m about 75% better shots and the tens has keep me stable headache every day but durable. Next month 10/29/14 I go back to pain management. I’m going to ask for them to cut them off. My prayers to all who suffer from ON cause there are day I look for a bullet. I stared complain 9 years ago . If they would have caught it back then I may not have suffer as I do . God bless all

  51. Wow can’t believe how many of you suffer the same as I do. I’ve had migraines for 20 years now but they were under control until June of 2013. Stated getting neck and shoulder pain which would come and go. I have been a Pharmacy Tech for 23 years. Lots of computer work was holding phone with shoulder while typing; till I finally got a headset and sometimes filing prescriptions. Everything always needs to be done very fast so can be stressful. Started getting headaches in the back of my head that started at my neck last summer. First I went to a chiropractor who did an ex ray and said I had degenerative neck discs. He treated me for 2 months but the headaches actually got worse. My primary Dr referred me to a spinal pain dr who did 3 neck epidurals which didn’t help my headaches at all. Then he did 3 shots in my head the lidocaine helped but wore off in 12 hours and the steroid didn’t help. Said I have the occipital neuralgia. These daily headaches started to trigger my migraines and I started getting 18 a month so he referred me to a neurologist. I’ve had to take as many Imitrexes per month as my headaches which is way too many. She recommend Botox but first in addition to amitriptyline that I’ve taken for 20 years she added topamax as a preventative which hasn’t helped. Got my first shot in June and it lasted almost 3 months had maybe 8 migraines instead of 18 but still daily occipital headaches. Have had to wait an extra week for next shot cause Dr went out of town and have had 18 migraines in the last 21 days. Hope this next Botox can help with my occipital headaches also has anyone had any success with this? Some days it really gets you down. Keep on going and keep on working cause if I don’t work then I don’t have insurance,ouch. Thank you everyone that has written. Don’t feel so alone

  52. I am 38 years old and also have Occipital Neuralgia for the past 4 months. I truly know the definition of the stabbing, shooting pain described. I have had stabbing pain through the ear and top left side of the head lasting 2 weeks. When I’m not being stabbed, I have a constant nerve pain top left of head which feels like a bad sunburn. I did not have any pain in the back of the head until I decided to get a nerve block done. 3 weeks later, and the pain from the injections has not gone away. It hurts to lay on the back of the head. I am taking carbamazapine, gabepentin, and baclofan. I also spray my head with Solarcaine (used for sunburn). Will be looking into cryotherapy, botox, accupuncture. I have pretty much spent most of the last 4 months in bed, and unable to work. If it weren’t for my husband’s income and insurance, I do not know what I would do. I too was looking to conceive, and am anxious for the day when I can get off all these medications. However I wonder how on earth I could do a good job caring for a child being this sick. If anyone has had the cryotherapy, could you please report back on its success as the cost is $1200-1500 and relief only lasts 2-3 months.

  53. I just found this thread and am amazed at how many other people have had similar experiences to mine. I have suffered a lot of physical trauma in my 58 years. I’ve had 33 broken bones and at least 13 head/neck injuries that I can remember. There were two bad car accidents, one of which took a month from my memory. I am still an active outdoor athlete, a ski mountaineer and ultramarathon runner. My pain threshold is abnormally high but I have nevertheless been effectively disabled by the effects of Occipital and Trigeminal (Type II) Neuralgias over the last 13 years. My mother had TM and temporal arteritis and the cocktail of medications doctors gave her eventually caused her death. So I refuse to submit to the medical establishment’s drug and surgical treatments for this. I have migraines too, but they are nowhere near as painful as occipital neuralgia.

    I have found relief, but not by any means a cure, in the work a cranio-sacral therapist does for me. She is a master of seemingly every form of physical therapy and body work, so it is not solely the cranio-sacral that is responsible for controlling the pain. What she does is very gentle massage. She tells me she can locate the nerves and the bundles of muscle tissue and fascia that impinge the nerves and she describes them as crunchy or crispy when I am having an episode. I’ve been going to her for about two years and she has never failed to turn the searing hot knife pain in my head off using her fingers very patiently and with very light pressure.

    I still have ON/TN but they are generally less frequent and less severe. I no longer writhe and moan through the night wishing I could tear my head off to stop the pain. But they do continue to recur. And my sleep is still very disrupted. I went to the sleep lab for a study and was in there for 10 hours, slept for 4 hours. In that 4 hours I had 44 awakenings and the total REM, Stage 3 and Stage 4 sleep was 17 minutes. I do not have sleep apnea. When I got home the next morning I said to my wife that it was the best night’s sleep I’d had in years. I average less than 4 hours per night and like someone reported above, I am often afraid to go to bed because the pain will be so bad. I have spent thousands of dollars on beds and pillows but nothing helps even a little bit for more than two or three nights. After that I have to make a change that may or may not help. Because of the lack of sleep, my cognitive skills and ability to focus is terrible. And the stress of any job will trigger the ON to return. The trigger points are so sensitive I will only allow my cranio-sacral therapist to touch the back of my head. Pillows, hats, visors, helmets, and glasses all hit the trigger points from time to time but I will not quit backcountry skiing and running. Those activities are my life and the only things that keep my depression and anxiety at bay. Physical therapy has been the biggest difference maker for me and I can truly say that it has saved me from taking my own life–for ten years that seemed like the only possible way to end the pain. My heart goes out to all the other ON sufferers on this forum. People who have never experienced this can not really understand how painful and hopeless it can make one feel.

  54. So, I am 32 weeks pregnant and having ON symptoms yet again. I was diagnosed with it 7 years ago. The best thing that helps me is using a heating pad or hot hot massaging shower on m neck and shoulders. My Neuro also showed me how to do a ON acupressure release. I would suggest watching your BP if you are trying to conceive. My ON is causing my bp to be all over the place and causing dizzy spells. Good Luck!

  55. I’m 41, have had severe headaches most of my life. Diagnosed with ON a couple of years ago. Neurologist put me on Topomax which has cut down my migraines from 3-4x a week to maybe 3-4x a month. However, ON pain is still present and is worst when I first wake up. Tramadol helps but finding I need a larger dosage as time goes by. Had my first nerve block 3 months ago which lasted a whopping 10 or so days but n pain at all during that time. I had a second one yestarday and neurologist thinks this one should be more effective. Fingers crossed.
    This condition has truly knocked the wind out of my sails. Went from doing crossfit several times a week and brisk walking 6 miles 4-5x a week to nothing because of the pain. I’m tired and lethargic and in constant pain.

  56. I have suffered from occipital neuralgia for over 20 years and have tried everything to try to live a pain free life with as little medication as possible (that’s not to say I haven’t tried every one I’ve been prescribed over the years!). I’ve had the best results by rotating an hour long head, neck, shoulder and scalp massage one week and an acupuncture and gua sha (google it if you are not familiar; i promise its not as scary as the pics might look!) session. Personally after 5 or so rotations of these treatments I have had nearly no headaches! I just maintain with either the occasional massage or acupuncture session. It has been a life saving miracle to say the least!

  57. I am new to this pain, having had only a few days of it. It started as a pain. In my right ear both stabbing and achy at the same time , them went behind the ear and down and then spread to neck and shoulder as well as head and eye. Even my hair hurt! NSAIDS helped but I do not like to take medicine. A hot washcloth helped. But what helped me the most was a trip to the gym. I decided not to let the pain stop me and, as I was lifting weights, the pain literally disappeared. It returned about five hours later but those five hours were totally pain free. I intend to do more research on this. I feel this may help relieve the pressure for some. I also read Vitamin B complex is helpful for some. I had migraines earlier in my life and found B Complex to be very helpful. Also a gentle yoga really helped at that time. Migraines disappeared for years. I feel for all of you in so much pain for so long. I pray that you find your answers.

  58. I’ll not bother you all with my story which is so much like every one else’s on this site. The best treatment I’ve found is Ketoprofene, 200mg, which you should try not to take any more than every 48h, and Relpax which treats migraines. My doctor hates me for taking so much, but it’s the only thing that works – any they do work, especially taken in combination.

  59. I’ve been dealing with this for 10 years now… chronic occipital pain and 3-day migraines every 5-8 days. I don’t use medication anymore. I heat my neck with a heating pad almost everynight and then massage my neck for about 30 minutes (spending a lot of time on the occipital trigger points) and I also use therapeutic grade essential oils to help me with the pain. Native American Nutritionals and Young Living Essential oils have some great oils to help with the pain. I also avoid a lot of positions especially leaning forward and looking down. That’s what helps me! It helps the pain but doesn’t stop the migraines. I have just learned to accept them…that in itself can be very healing.

    • About two months ago I started physical therapy for my occipital neuralgia, the most beneficial exercise they gave me was the supine head nod. I do this twice a day & it has given me a great deal of relief. So far it been the only thing that’s really work and best of all no side effects.

  60. Your blog is very helpful. I am happy to find this post very useful for me, as it contains lot of information. I always prefer to read the quality content and this thing I found in you post. Thanks for sharing.

  61. In addition to my previous post I should also mention that I’ve been taking a magnesium supplement and soaking in Epsom salt bath. Laying down so just my face is out of the water. Taking a tub can de a hassle sometimes but I swear it works.

  62. I take around 8 ibuprofen per day, and roll on 2 tennis balls on either side of my spine and also on the back of my skull to losen and relax the muscles once they are loose I self ajust my spine and neck. This is a very risky, difficult, and posibly a bad way to deal with it but it is the only thing I have found that works for me and give me alot of relief. But only works after alot of rest when I have bad flare ups.

  63. I feel for you all. I started with migraines at age 6, eventually treated for TMJ disorder for much of my childhood. I believe this diagnosis was “close but no cigar”, and that my cervical spine was the main culprit. I just turned 38, and most recent MRI’s of my neck show 3 herniated discs from C4 down through C7. I’ve gone through a gamut of doctors (mainly neurologists and pain specialists) up here in good old Massachusetts, where if you have a pain disorder and you’re female, you’re just “DEPRESSED”. That’s right – “The herniated discs shouldn’t really bother you”; “Humans weren’t meant to walk upright”; “You’re getting old” – these are all actual explanations I’ve received from doctors at the top hospitals in BOSTON! Seriously???? blah, blah, blah… “Yeah, I went to med school, but I’m a sadist/idiot” – and you’re getting paid $500 an hour for that bullsh*t???? Pardon my negativity, but it is RIDICULOUS that my medical charts actually state the diagnoses of cervical radiculopathy, cervical spondylosis, and BILATERAL occipital neuralgia, but I get passed from doctor to doctor only to get another door slammed in my face – and I am sure, even as spiritual as I am, Jesus has not been there to open a G*d-damned window for me. And now, the ON has progressed and morphed over the past 4 or so years to the point that the pain is located centrally and on both sides of my head, radiating through my neck, shoulders, and face. My eyelids are always drooped, and often just using my jaw causes so much pain that I am unable to speak – not to mention the marvelous sensation of nerve pain throughout my top front teeth, as though they are being rubbed with tinfoil – always a treat….. mmmmm. I don’t know how the laws are in other states, but in Mass., the laws against prescribing opiates are SO strict “because there’s an epidemic!!!!” – f*cking please!! As a sufferer of DAILY INTRACTABLE PAIN, I should not be further punished just because OTHER people abuse narcotics. My quality of life is ZERO, and I know that even if I walk into the ER, crying and unable to speak, the most they will offer me is a shot of Toradol – a frickin’ NSAID. Really? Excuse me, but I need to take a moment to reflect on that ……………………………….. OKAY. And so now the only pain med I have now to rely on is Neurontin, one of the most evil drugs to grace this planet… I am a walking cadaver, completely disconnected from my self and my reality. And, yes, I’ve tried everything else as well, from physical therapy to massage to inversion table, etc., etc. I have no fear or shame anymore of what I say to doctors, as the majority of them seem more eager to interrogate me and invalidate me than to help me. I asked the last neurologist I saw, “How do you think you would feel if I took a steel pipe and broke both of your kneecaps, and you went to thirty different doctors, and they all said they saw no problem, go home and take some Tylenol?” And yes, that moron stood there speechless, with his mouth agape, and I turned and left. FAIL.
    My faith now holds on by a damn thread, but it is a golden thread, and I have endured enough pain to know that no one can sever it.
    To all – Go with God, but know your rights.
    -Marie Francesca

  64. I was in a car accident and suffered whiplash which also resulted in occipital neuralgia and terrible neck and head pain. After two and a half years of Botox injections my doctor suggested an IV ketamine infusion. My infusion was nine months ago. The pain did not go away completely but significantly decreased. If it is truly nerve pain, find a pain management clinic or neurologist…its worth a shot.

  65. I am always surprised to see how may suffer from the same daily issues as I do. I have suffered from ON/migraines for over 25 years. I read each post above and saw nothing that I had not tried. I have done all types of medication: heart meds, seizure meds, depression meds – not to mention nerve blocks, chiropractor 3x per week, physical therapy, botox, exercise vs no exercise – really most anything mentioned above. I learned the hard way that many of the meds to get rid of the headache can also cause a rebound headache that reappears about the same time each day. With the help of a dear friend who has experienced exactly the same, I found two INCREDIBLE doctors in Houston, TX. I was originally connected with the neurologist (I have seen at least 10 different ones previously), but this one was able to confirm ON and then connect you with a surgeon who has done over 700 ON Decompression surgeries. I am now 3 weeks post-op and have had 2 headaches (down from one daily). The surgery was not difficult. It can take several months to get the full benefit from the surgery (after the nerves recover) but my friend who is about 2 years post-op is described by her children as “having their mom back”. I will keep you posted on my progress, but the results of previous surgeries have been excellent. Many of us with this issue have the nerves growing THROUGH the muscles in the back of the head/neck – making you more prone to ON. Good luck!

  66. Hello,
    I have had ON for 3 months. It came on due to trauma caused by an esthatician pulling on my neck during a massage. The pain from the “migraine” is debilitating. The neurologist I saw didn’t help. I also got a nerve block and the pain was worse!
    Thankfully, I have a great chiropractor that helped me and my friend referred me to an orthomolecular doctor in Los Angeles, who got rid of the pain and meds in 3 short months. I agree, withdrawals from the pain meds is terrible.
    I am off meds and have had 0 “migraines” since the first onset 3 months ago. My neck and head do feel a bit sore when I am more active than normal but adding a little heat always helps. I am also taking vitamins and minerals(magnesium, Vitamin B, vitamin D) on a special diet(dr’s orders), and drinking a gallon of water a day.
    Hopefully, I will continue this way as I have been off work the past 3 months due to pain and meds and plan to return to work soon.

  67. Hello ,
    I was diagnosed with Atypical Trigeminal nueralgia and Occipital Nueralgia both on the right side. I request each and everyone of you to check your vitamin ‘B12’ and folate levels checked. as it is highly essential for nerve regeneration/repair along with folate and Omega-3 fatty acids.When i got it checked it was critically low and have been taking B12 injections weekly once. There has been research litearauture that before tegretol , Nueralgia was treated by adminstering B12 injections and soon the pharma companies threw the reasearch on vitamin B12 into a bin and promoted TEGRETOL,which has too many side effects atleast for me .

    Please read the below link carefully
    http://tnaaustralia.org.au/2015/12/18/vitamin-b12-in-trigeminal-neuralgia-management/

    Hoping for a better world.

  68. Amitriptyline worked excellent for me….Literally can’t feel a thing on amitriptyline….however it made me a complete space cadet, and could not concentrate…..I am like a totally diff person on that medication……it made me want to eat sugar all the time and I would forget to hydrate and drink water because you are so spaced out….so that really doesn’t help anything when you are in such terrible pain you need to keep as good of a diet as possible……I got myself off the amitriptyline which was severe torture in itself….thought I was dying for two months, because it was the normal neuralgia pain but times 10……..I have looked into natural remedies instead, because all of the medications do more damage to your body then the Occipital Neuralgia….they cause dehydration and I believe screw up the internal organs……however the pain is so bad off the meds that, that is dangerous as well…….I have found some things that help……first off I take two teaspoons of hemp oil every morning and within a few hours I feel much better, almost no pain, or at least much more bearable pain level……then I do Bikram Yoga in the evenings and it completely eliminates the pain for the rest of the evening………I have been doing Bikram every other day, but I may start to do it every day and I think that will help tremendously….on the days I don’t do Bikram the pain returns later in the day but I thought maybe when pain returns I could take two more teaspoons of the hemp oil (you can buy this on amazon and it is completely legal) Hemp oil is terrific for your body and eliminates cancer cells as well…..it does not make you high, because it does not have THC and it tastes actually good……the next thing I may do is try to get a medical marijuana card, because believe it or not, I smoked with my friend and took a couple hits of marijuana some months back and it helped tremendously….you feel great…….Marijuana is a plant grown from the earth and is all natural….this is SOOOOOOO much better for your body then all of these evil pharmaceuticals…..but they want us all to be drug addicts….this condition is absolutely horrible……I wish they had a support group for it so we could all give each other hugs……I may have to start one, because it is very needed……..I hope this helps…..

  69. I have suffered from occipital neuralgia and migraines for 17 years I have been on ever medication possible I have done every treatment possible I just had a cervical stimulator put in this past January and it has cut down my migraines tremendously I have had one serious migraine since than! I still take topamax as a preventive! But I am glad I put the stimulator in!

  70. Look into NUCCA (National Upper Cervical Chiropractic Association). It seems a little hokey when you see it, but it works! I was in a bad car accident 3 years ago and have been to so many doctors and therapists for various versions of back and neck pain. Finally, my massage therapist told me to check out a NUCCA doctor since she had been so helped by one. The theory behind it is that if your upper two vertebrae are not aligned correctly, they put pressure on your nervous system (since the whole thing flows from your brain through those vertebrae). They take VERY specific x-rays to see where exactly your vertebrae are sitting, then calculate by degree what kind of correction you need, then they re-do the x-rays to make sure the correction is right for you and did its job. The first visit is very expensive and long for that reason, but the appointments/adjustments after that are usually much cheaper and only about 15 mins long. The adjustments are also extremely gentle – it hardly feels like they’re touching you, you don’t feel a pop, and you think “there’s no way they’re doing anything to me right now.” But then you suddenly get sore around the adjusted area and you can see that parts of your body that weren’t symmetrical before the adjustment suddenly are. It took me almost 3 months of it before I could start to hold the correction for more than a few days, but when I finally did hold it for two weeks, I was almost completely headache free! It was amazing! Now, I can tell when I’m not in alignment because the headaches come back, it’s hard to sleep comfortably, my shoulders aren’t level, etc. Maybe this isn’t for everyone, but after so many doctors with minimal pain relief over 3 years, I was willing to try anything. And I’m SO glad I did.

    One thing to note – not everyone who claims NUCCA is really as good as the next guy. You’ll want to find someone who does NUCCA and almost solely NUCCA. There are some chiropractors who say they do NUCCA and have done some workshops for it or whatever, but they really only do it a little on the side. You’ll want someone who almost exclusively does NUCCA and really puts their focus on doing it right. It’s so detailed that I personally don’t believe that someone who does it on the side could really be doing it as well as they should be.

    Anyway, I hope this helps! Best of luck!

  71. Hi, My name is Jackie. I have been dealing with this pain for 7 years and not a single Dr would believe me thinking I just wanted pain meds. no would would offer relief. I am now seeing a pain management specialist at KU Med in Kansas City Kansas. He gave me the lidocaine shot and something else in the base of my neck Monday and it helped for a few days. The pain is back today and is so intense that I can’t work. He claims that my Occipital nerve is damaged. He is planning on doing X-rays and MRI’s in another week and checking for arthritis. I have tried everything. Nothing eases it up. They often land me in the ER from throwing up because the pain is so intense. I have a PRN of anti-nausea meds and tordial to try and stop them before they start from a neurologist. Once I take them I can’t function. So either way I am screwed. Good luck to all of you women/men on here. I hope you all find some relief.

  72. the amino acid gaba amino burtaic acid or something close will help you. I get mine off ebay just search gaba I buy it by the kilo. it is not a fix but if you are going natural it helps

  73. I recently began using Copaiba Oil – it instantly lessons the pain and is superb as an anti-inflammatory. Not a resolution to the disorder-but the best method of mediating pain i’ve found in several years.

  74. Please try this method to get instant relief

    Turn you face up and Stare at the ceiling, stay still in this position, do this for atleast 15 to 20 min.

    This will ease up the nerves on the back of your head and the occipital nerve.

    do try and let me know if it works for you

  75. I have been diagnosed with occipital neuralgia too.I have been taking Omegas and Q10 too. I try to take a vitamin B12(In the form of the energy drink called XS) in the morning and that gives me good 6-8 hours of painless workday. I read that vitamin B12 is anti inflammatory and hence it helps. It comes in multiple flavors, this one helps the most because of the additional Essentra extract. Let me know how it goes if someone tries out. You can try the caffeine free alternatives too, but they don’t work as good for me.
    http://www.amway.com/ourProducts/Shop/Product/Product.aspx/XS-Energy-Burn-Strawberry-12-Cans?itemno=745955
    Disclaimer: I will benefit from the purchase, but I share cuz I know how horrible the headaches are and want to share whatever helps!

  76. Good information here! I blew a disc at C5-6 in August. Had numbness and tingling down my left arm and horrible pain into the trigger point above the shoulder blade. Muscles in arm were spasming and grip strength on the left side was diminished. Went to a neurosurgeon and he sent a request for an MRI to the insurance company. They denied it even though I had all the signs/symptoms of nerve compression. Two weeks later the doctor was able to convince the insurance company that the MRI was needed. Had the MRI – waited another week to see the neurosurgeon and another week before surgery was scheduled. Total of 26 days of nerve compression. Neurosurgeon went through the front of my neck and put a plate and 4 screws in. Sent me home the same day. Thought I was going to die the evening after surgery. Was out of work for 3 months. As soon as I returned to work (stressful job with lots of reading, unreasonable deadlines and computer work), my neck muscles stiffened up and I began having what they are now calling occipital migraines. The longer I sat at work, the worse the pain. On most days, I was worthless by lunchtime as I could hardly think straight. My boss was totally unsympathetic. I walked out two weeks ago as I had a total meltdown from the pain. The neurosurgeon dismissed me since I was not a candidate for more surgery and sent me to a neurologist (pass the buck). I saw the neurologist last week (pain management specialist) and he did steroid injections into two facets on either side of my neck. I had a total of 4 hours of relief before the excruciating headache was back. I’ve tried PT (aggravated the muscles even more), chiropractic (no relief) and massage (she was too rough and left me feeling worse). Am looking into acupuncture now as I am desperate for relief. My other half asks me what he can do for me and I tell him to just shoot me. I cannot imagine living like this the rest of my life (I’m 56). I still have no feeling in my index finger on the left hand and random muscle spasms from the nerve damage (thanks to the insurance company for making me wait). I have constant pain in the occipital region which feels like someone has smacked me in the back of the head with a baseball bat.

    I was placed on Hydrocodone (started with 5-325 and went up to 10-325) before the surgery and Gabapentin following the surgery. The neurologist added a muscle relaxer (Tizanidine) which I don’t think has done any good. I hate being on pills and have managed to get off the Hydrocodone except on rare occasions when I just can’t take it anymore. I don’t like taking the Gabapentin and tried to wean myself off of it and was not successful. I felt like I was losing my mind and all I could think about was suicide. I went back on it and am not petrified not to take it. I have never had constant pain anywhere and it certainly takes a toll of you, mentally and physically. I have lost 25+ pounds since the surgery, my hairdresser tells me my hair is falling out and I look 10 years older than I am since all of this happened. I know I am depressed (who wouldn’t be?) as I cannot do hardly any of the things I used to be able to. Driving is extremely painful, especially when you forget and turn your neck to check your blind spot. The longer I sit upright, the worse the pain. Right now, I am reclining with my Norco ice neck wrap around the back of my head. I find that heat aggravates things and ice does provide a little relief. Also, when the weather changes, the headaches are significantly worse. That’s just great when you live in the South and the hot/humid weather is setting in already.

    A friend of mine suggested Divalproex Sod Er. 2 tablets 250 mg each at night along with Cambia (these helped him after he broke his neck at C5-6) and he was plagued with migraines. Anyone else tried either of these drugs? I am open to anything at this point. Thanks for listening to me whine and complain – I hate to know that there are so many others out there, like me, who are searching for relief and a better quality of life.

    Thanks!

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