Migraine help

I have had, near daily, migraines for the last 7 years. They began approx. a month after my first craniotomy for a meningioma brain tumor. The migraines have changed how they present several times over the years. I have pretty much tried every medication and have gone thru Botox twice, all to no avail. Initially, fluorescent lights brought on the migraine. Felt like someone was shooting a later into my head. I would also be sitting in a chair and feel a crawling sensation going up my body, tingling along my face, light headed, out of body kind of experience. Then they changed again and I would a have a migraines that would last 10 sec to a couple of hours, multiple times a day. They have recently changed again. I am nauseous and/or vomiting nearly each time I get a migraine. They start at 2 and can jump to an 8 or 9 within minutes. Sound and light now bother me more than they used to. No auras though. I did have to have a second craniotomy in 2014 when the tumor regrow. The migraines are across the front of my forehead, with pulsing on the left, top side of my head (where part of the surgery was). My right eye droops and can droop completely closed, pain in my right eye. I can have tingling alongside my nose and ears. I do also have seizures (although I do not feel them). I have multiple other health issues as a result, but really need help with the migraines. I have tried baclofen, norityrptiline, gabapebtin, zonisimide, maxalt, topamax, fioricet, Imtrex, and many more. Nothing really works and if it does, it’s hit or miss. I have seen 8-10 neurologist and 3 neurosurgeons. They have sent me to pain management but I have a problem with being put on narcotics and told if I become addicted, we will deal with that later ( dad was an alcoholic and sister drug addict) not willing to take the chance, plus I hate feeling like I’m in a cloud all the time. So any suggestions I would really appreciate. Currently reside in Mississippi but will be moving back to DFW in about 6 months. Thanks in advance!


Community Answers
  • baderwoman007 author
    11 months ago

    Thank you so much for your response! I requested that my current neurologist send me to someplace like John Hopkins or the university of michigan in particular because of their migraine programs. He wasn’t very helpful to say the least.
    I will definately read up on the links you provided and I really appreciate that you took the time to look up headache/migraine specialists for me here in MS.
    I don’t think I was clear on the Botox. In Florida I had 5 rounds of Botox and when I tried it again in Mississippi, I had 4 rounds. All with the 31 injections. In Florida it worked the second round to some degree. After that, nothing.

    Again, thank you so very much. I’m happy that I found this site!

  • Nancy Harris Bonk moderator
    11 months ago

    Hi baderwoman007,

    Thank you for sharing your detailed story with us. It’s not uncommon for our migraine attacks patterns and symptoms to change over time, mine sure have. Glad you’ve spoken with a doctor, but it may be time to see an expert who treats migraine disease. Let me explain.

    Neurologists and neurosurgeons for that matter, may be fine doctors but have difficult time being experts in one area. This is because they treat so many different conditions like multiple sclerosis, stroke, epilepsy, Parkinson’s and others. Migraine/headache disorder specialists are just that, experts in one area – migraine and headache – and are board certified in headache medicine which is different from being certified in neurology. It’s also important to note that all neurologists are NOT migraine/headache disorder specialists even though they may claim to be and all migraine/headache disorder specialists are not neurologists. When you get a chance take a look at these articles on how these doctors are different and how to find one;
    http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/looking-for-a-migraine-specialist/.
    This link will give you all the doctors in the US who are board certified in headache medicine; http://www.ucns.org/globals/axon/assets/12423.pdf I found two in MS.

    Pain management isn’t always the best option for treating migraine disease, I’m sorry to say. It may feel like you’ve tried everything out there for migraine prevention, but that may not really be true. Here’s why; there are over 100 medications and supplements that can be used to treat migraine disease and if we add up the combinations that number goes up dramatically. Take a look at this information when you get a chance; https://migraine.com/blog/migraine-preventives-start/.

    It may take up to three rounds of Botox before we see a reduction in migraine frequency and severity. AND it’s really important to have an experienced doctor administer the 31 injection protocol – mine is.

    I hope this helps, keep us posted on how you are doing,
    Nancy

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