Has anyone been worked up at the Mayo Clinic?
I've been diagnosed with migraine disorder but I'm having a hard time wrapping my head around that. I'm having 1-3 month long flare ups of neurological symptoms, most of which are not migraine symptoms (I have no head pain, nausea, etc). My Dr put me on memantine, which put me in the hospital to rule out stroke, it made my symptoms so much worse. Now he wants to try the CGRP meds, which sound like they are expensive, don't work for many people, and have a long half life so if it makes me worse, like the memantine, I'm stuck like that for weeks/months.
I'm considering going to the Mayo Clinic, both to confirm the diagnosis of migraine and to get better advice on treatment options. However, it's an expensive pain in the butt, so now I'm second guessing myself. I've already lost a couple years of my life to this illness so I don't want to misstep, I need effective treatment asap.
Has anyone gone to Mayo for migraine? How was your experience? Any info would be very helpful, thank you!
HI Charis4,
Thank you for sharing your journey with us. I am sorry to hear you are having a difficult time.
Migraine is a genetic, neurological disease with flare ups or attacks.You may want to think of it like asthma - we always have the disease, but have episodic or chronic migraine attacks. Episodic means 14 or fewer migraine attack days a month, and chronic is 15 or more days a month. The thing about migraine disease is can impact our entire body, and not just with head pain and nausea. Some people experience a migraine attack without either, but do have cognitive dysfunction, sensitivity to light, sound and odors and more. There are four phases of a migraine attack; prodrome, aura, headache and postdrome, but not everyone will experience every phase. When you get a chance, take a look at these articles that explain what migraine disease is and how it can impact our body; https://migraine.com/infographic/the-four-phases-graphic/ and https://migraine.com/migraine-basics/.
My thoughts on finding another doctor, which is a great idea, is that seeing a doctor who is board certified in headache medicine is the way to go, rather than going to a big name clinic. There is nothing wrong with big name clinics, but, make sure the doctor you will be seeing is a board certified expert in headache medicine. Neurologists may be fine doctors, but have a hard time being experts in one area because they treat so many conditions such as stroke, multiple sclerosis, epilepsy, Parkinson's and more. Here is information on how these doctors are different and how to find one; https://migraine.com/blog/looking-for-a-migraine-specialist/ and also a list of doctors who have board certification in headache medicine; https://www.ucns.org/globals/axon/assets/12884.pdf.
I've given you a lot of information so I'm going to stop for now!!
Let me know what you think,
NancyThanks for your reply, Nancy. I already see a headache specialist. I'm having so many other issues that I think migraine is probably only a part of what's going on with me, one of the many symptoms, not the total cause of my symptoms. That's why I'm interested in going to Mayo, I think my Dr is only looking at the migraine symptoms and putting blinders on to the rest of it. I'd like someone (or a team of someones) who will look at it from other angles as well.
