Topamax & Botox still losing my mind in pain

My story is complicated as so many here have been. I had my first migraine my second year in college. I assumed it was another symptom of my newly diagnosed hyperthyroidism. Nope.

My doctor was keenly aware of these swiggly lines that I described seeing and the sensitivity to the light like I had just became a vampire as classic migraine. The excruciating pain in my head lasted for hours into days. I missed more than half a semester of college with the thyroid and migraine issues. To top that off, my weight had plummeted to 98 pounds and I started having raynaud’s syndrome. My hands would turn pale white/ colorless & then a horrible dawn of the dead purple / black on a regular basis, especially after I ate. I have later found out through a lot of research online, books, medical journals, etc. that all of these things were not so uncommon to have at once when one has had a major stress trigger like moving out on one’s own, taking a full course load, & trying to hold a job to pay the bills.

Long story short, I have a stable thyroid currently after several years of medication, the raynaud’s is manageable, but the migraines are out of control. I have developed a sleep disorder and most recently TMJ. My late 30’s are plagued with chronic migraine along with the incredibly debilitating side effects of long term Topamax use. I have serious memory loss, confusion, & have worsening vision that I corrected less than two years ago with Lasix. I have to wear glasses when my eyes are tired, which seems like all the time now. I am irritable and frustrated more days than not due to pain and lack of understanding by those around me. I keep pushing through, going to work, but getting less done because of my daily torment. I have an intermittent FMLA leave of absence filed with my company, but I work most days. If I can do a half day or more by driving in late, I will.

I think I have a high pain tolerance because if what was in my head was unleashed, I’m certain my family, friends, & co-workers would not have a clue what to do I have been on as many meds as the docs can throw at me. I’ve decreased the Topamax by half when I started Botox therapy two years ago. However, the side effects have not lessened except I can enjoy an occasional soda without it tasting like metal. Of course, that isn’t good for me, but I do crave sugar before the pain intensifies.

The Botox has been able to take the severe migraines (>7 on the pain scale) down from 18 per month to 12 per month. Now more of them are in the 4-6 range and I can hold the line with my arsenal of abortive meds including relpax in tablets& imitrix in injection form depending on severity & if I must drive. I have given up the opioids for pain relief because of the rebounding. I have been trying to be very tight on my other meds also for the same reasoning, but alas I am still in daily pain. If anyone knows what it is like to change insurance companies & doctors, you know the added burden of stress that puts on a migraine patient. I went through that this last year & again this spring back to my old doctor on a different insurance. Pre-authorizations are needed for both of my preventative daily meds & the Botox treatment. I’m waiting. One month overdue. I’m surprised I was able to get this typed without more errors. Thanks for letting me ramble on.

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