Expectations Too High?

Last Friday, I finally saw a headache specialist. Instead of the results, optimism, and high spirits I expected to carry out hand-in-hand with new advice, I left the office disappointed and discouraged. 

After driving three hours across Texas to meet with a $300/hr specialist, I had anticipated some treatment, some new information, something. Perhaps my expectations were too high.

Acting upon the advice of my specialist, I am now off Topamax and onto Bystolic: a blood pressure medication also used as a preventative. While I feel better mentally (no more Topamax personality takeovers,) my migraines have not changed in spite of the new preventative or the 6 bottles of Migranal I was told to use every 8 hours for 3 days in hopes of breaking the increasingly persistent Migraine cycle. In fact, the Migranal seemed to make things worse. After every administration, intense nausea set in and I almost blacked out – weaving to and fro, grasping desperately for something to cling to as my vision disappeared into black spots. 

Other than new medications, he did advise I see an Ear, Nose, and Throat doctor in order to have an inner-ear balance test as I have such extreme vertigo and lightheadedness. His last word of advice? A hospital stay for intensive IV treatment lasting an undetermined amount of time. As I was given no guarantee it would work, slim chances that even if it did work the relief would be temporary, and my insurance deductible of $5K is no where close to being met – I’m having to ponder this a bit.

13 thoughts on “Expectations Too High?

  1. Kate, did you by chance see a specialist on this list? http://www.healthcentral.com/migraine/headache-specialists.html

    If you’re in Texas, you should really consider seeing Dr Krusz. He’s the guru of headache and migraine medicine. He’s been able to help many patients who couldn’t find help elsewhere. He also does in-office IV treatments – he doesn’t believe in inpatient treatment – and has great success with them.

    Good luck to you.

    Be well,
    MJ

  2. HI HAVE YOUR DR’S EVER SPOKE TO YOU ABOUT CHIARI 1 MALFORMATION MY WIFE SUFFERS AS WELL YOU WILL NEED AN MRI OF YOUR BRAIN AND SPINE USUALY THE CERVICAL AND LUMBAR . IN THE SPINE YOU WILL BE LOOKING FOR A NARROWED AREA CALLED A SPHRINX THIS IS A TELL TAIL SINE OF CHAIRI 1 AT THE BASE OF THE BRAIN IN THE SKULL IS A HOLE THAT THE SPINAL CORD PASSES THROUGH IF THE TONSILS OF THE BRAIN HAVE SETTELED IN THIS AREA AND HAVE PINCHED OFF THE SPINAL CORD AND BLOCKED FLOW OF CFS THIS COULD BE WHERE THE PROBLEM LIES.TAKE CARE

  3. Hi Kate,
    Sorry to hear the specialist visit didn’t turn out as you expected. I hope you find some answers and relief soon – my mom has had migraines for 20 years and we’re still searching for a solution for her. I actually just started a website to bring together people who have migraines to share resources and help each other. If you’re not in too much pain I’d love your feedback on it.
    Good luck and best wishes for a pain-free day.
    Alexandra
    http://www.curetogether.com

  4. Hello. I’m new to your blog, and I just wanted to comment and say how sorry I am your appointment didn’t go as you’d expected. I hope things improve for you.

    Diana

  5. MJ, I did see a specialist on the list. He seems to have run out of options for me. I will try Dr. K when (and if) I can find the money for the consultation: he does not take insurance and funds are tight with my migraines and my daughter’s seizures.

    John, I am terribly sorry to hear about your wife. I understand that’s a painful condition. I have had an MRI, and, luckily, mine was clean.

    Alexandra, thank you for reading. I will check out your website soon.

    Diana, thank you for your thoughts. I appreciate them.

  6. Hi!

    Yes, I second what MJ said about Dr. Krusz! I am in the process of saving my pennies now to go see him! I met him in Boston at the American Headache Society conference this past June, and let me tell you, he is one of the best!!!

    Good luck to you my dear! I know how horrible it is to be in pain all the time!

  7. I hope by now you are pain free or nearly so. But just in case: I’ve had migraines for over 20 years. I get pretty good results from Verapamil and Depakote to prevent and Imitrex to abort pain. But, the biggest help actually came from a book (Heal Your Headache by David Buchholz, M.D.), which helped me understand what food triggers to avoid. I thought I could avoid cheese, or chocolate, or wine or whatever. But now I understand you have to avoid ALL the trigger foods at once. This book probably did more to help me than anything else and I wish everyone with migraines would read it and apply it for a couple months to see if it would help them. I know how it is: you think you’ve tried everything and don’t want to get set up for disappointment one more time, but you’ll never know unless you do try.

  8. I’m sorry when I see doctors push out migranal this way. My doctor checked me in for a week and said the first week of migranal will feel like he’ll but once your body gets used to it it works. She was right. It took 2 kinds of anti nausea with every dose and I still piled my guts out for a week but it broke the cycle. You have to crawl in bed, lower the air conditioner, get some phenergram prescribed with it and take that an hour before each dose, shut off the lights and get your family to help you unplug from life for a week, no triggers allowed! It will break the cycle if you give migranol a chance. I had been in bed for 9 months, couldn’t drive, wasn’t talking right, thought I had a tia and was tested several times. Migranol saved my life and 10 years later it still is a great rescue drug when I need it 2 or 3 times a year. That and topomax and elavil keep me almost migraine free

    • Thank you for that info. My doctors never told me that. Perhaps, if I decide to give medication another chance, I will have different results. (Or, at least, I’ll know what to expect.) I’m glad to hear it worked for you.

  9. I often find myself wondering – how much pain can someone take? The actual pain or the duration of the pain or both – must come with a limit. I am shocked that I ever accomplished anything because I was in pain, recovering from pain or being in fear of the next bout of pain.
    We bargain too, when it hits the 48th hour, we start to beg with any unseen power to please stop it. End the pain or end the life – just please stop it. Thank you for the data you are posting. I don’t feel alone so much.

    • Susan-Jillian,

      I’m always amazed at how much pain we can take and still push through. Here’s to you for your courage to strive in spite of it. I’m glad to hear my blog helps you feel less alone, feel free to reach out if you need to chat. Have you checked out the Chronic Babe website yet? You’ll find a wonderfully warm and inviting group of ladies on there.

  10. Following “The Paleo Solution Diet” by Robb Wolf (in addition be sure all meat is very fresh and never processed or aged or sitting in the fridge too long) has really helped me. You should read the part about why this is a good diet (based on evolution) as well as following the menu plans. It makes sense and it works for me. I still take meds to prevent and sometimes to abort migraine, but this diet makes a huge, huge difference in how frequently I get migraines. In addition, it balances blood sugar had helps me lose any excess weight. Give it a couple weeks at least, and you may be very pleasantly surprised. Good luck!

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