Hi. I'm new to this. I'm posting because I want people to know my story and I want to know theirs and see if we can help each other out. Also, I don't really have anyone that understands what I'm going through. They're empathetic, but they just don't understand. This is my story:
10 years ago I got a very severe migraine (I had already been getting them for 5 years, but never so severe). I took the medicine my neurologist at the time had me on, Zomig, and took a nap. When I woke up, I had stroke symptoms. I couldn't move the left side of my body. I went to the hospital. My MRI was negative for a stroke. They did a TEE and found that I had a small hole in my heart (PFO). I was sent home in a wheelchair, told to follow up with a neurologist, cardiologist and do physical therapy. I was finally able to walk properly again 6 months later. (I still have a section of my arm that has no sensation.) Ever since that incident I have had excruciating headaches/migraines. They started a couple of times a week and progressed to almost daily. After about a year I was finally told I had complicated and hemiplegic migraines. 2 years after my first incident, I was told I had Lyme's disease. Then I started getting blood clots in my arms and legs. I saw 2 hematologists and they couldn't explain why I was getting blood clots. I saw 3 different neurologists and none could help me with my migraines (Ms). The last neurologist sent me to pain management. That was the worst mistake ever. After trying some nerve blocks he put me on strong narcotics. The last thing I was on was Fentanyl, 100 micrograms/hour. Because I was a zombie I tried stopping the medicine, but I couldn't. I finally realized that my body was dependent on the narcotics, or as most people who haven't gone through this say: an addict. I was so upset. I've never done any illegal drugs. I never took more than what I was prescribed. This added to my depression. I was 25 yrs old, on permanent disability, unable to live a normal life with my husband due to the pain, had gained 40 lbs in just a couple of years because of meds (like Depakote and Seroquel) & lack of activity and now I was dependent on narcotics. I dumped the doctors and started detoxing with Suboxone. After 2 years of blood clots and terrible Ms, I found out about research being done in Brussels where they found that patients that had their PFOs closed got less headaches. I finally found a doctor in the US 2 years later that would do it. Ever since I had the closure, my blood clots have improved and so have my old Ms, to a degree. But, since then my Ms have changed drastically. I get cluster HA now. (I definitely understand why they call them suicide headaches. I can't help but bang my head against the wall when I get them. I'll do anything to make it stop.) I get hemiplegic Ms less often, but the complicated ones are getting worse. I feel like I haven't been diagnosed correctly. This last neurologist I started seeing in June just gave up on me. He did Botox. It helped a little with the pain I get on my eyebrows, but that's about it. After that, he just gave up. He said he doesn't know what to do because I've tried every preventative he can think of. He's sending me to a headache institute. This will be my 3rd institute. I have previously gone to MHNI and Mayo Clinic. I'm just very frustrated. I don't know what else to do. The pain is horrific.
One thing that my doctors don't understand is that I don't get an aura. What I do get is extremely sleepy before a bad migraine. For example: 2 weeks ago I woke up in the morning, had breakfast and took a 4 hr nap. In total, I slept 20 of 24hrs. The next day the M hit me. It was a mix of cluster and hemiplegic. It lasted 10 days. 5 of those days I did not sleep at all. (I get very bad insomnia. Sometimes it's due to the pain, other times I don't know why.) I ended up having to go to the ER to get fluids and Dilaudid.
And just because my body hates me: I just found out I have Raynaud's phenomena. I'm getting an extensive immunological and rheumatological workup. I'm wondering if that can be part of the cause of my Ms. Does anyone have this or know about any relation to it and Ms?
I know this was very long but I hope if there's someone out there that understand or is going through this we can talk. Even if it's just to get through one more day. THANKS!