Posted 3/5/2014 1:20 AM (GMT -6)
Hi, This message is also for JuliaMarie... I found this post quite by accident. Here's my story. I'm 57 years old. My migraines started at the age of 16. I began having tremors at the age of 23, always on the right side of my body. (mainly in my right leg.) At the age of around 30 I started having this rapid heart rate that would come on for no apparent reason. (My heart rate can go up to 200 beat per minute) I'd find myself in the ER over and over again. I was always told the same thing. I have a healthy heart.
I've tried the " no white" diet...which is basically what it sounds like, nothing white. No sugar or white flour. I was so careful, eating extremely healthy for one year. I became a vegetarian, I still am... however, that hasn't helped the migraines at all. Not only do I have migraines but I get this deep pain to the core of my bones, it''s always on the right side. The best way to describe it is like having a migraine on one whole side of your body, this horrific deep pain and no relief.
I've been quite the puzzle to the medical profession. This is why I think my situation may help you. I have a younger sister with all my same symptoms. (We compare notes.) As time went on, I began having seizures and this flickering in my right eye. ( not like a strobe light, much slower, like lights being turned off and on. I eventually lost the coordination in my right leg and right hand and found myself in a wheelchair when I was 35. My 3 kids were very young and it was hard on them, It was so hard on all of us. I would remain unable to walk for around 6 months and slowly be able to walk again. I started to notice a pattern, from no coordination to being absolutely healthy and hiking mountains. Literally... Still no one knew what was wrong with me. During the migraines, my right eye tears up and tears flow down my cheek, I get this pain across the right side of my head, eye and face and the pain runs around to the back of my neck. I know our symptoms are not the same but the good news is as severe as my case became, I found someone to help me.
I was finally diagnosed this year, 2014 with a rare migraine disorder called "Hemiplegic Migraines" Hemi, because the symptoms are only on one side of my body. It's also familial, there's a genetic test for it. Not too many doctors seem to even think about testing for it. Thank goodness my sisters doctor did, and then my doctor followed suit.I found that a low dose of Effexor 75 mg helps. It also helps my sister. It's used to prevent the migraines and doesn't effect your sex life, there's also this powder called Cambia that's amazing! you only use it during a migraine. My understanding is it reduces the inflammation that occurs during a migraine. Simple enough I guess. The Cambia powder is expensive, about $22.00 a packet. A prescription comes with 9 packets. You mix the Cambia in 3 oz of water and drink it. It taste like mint and licorice, not too bad of a flavor. If you have good insurance it helps offset the cost.
I can't even count all the hospitals I've been in because no one knew what was wrong with me. I been on every imaginable Migraine medication possible, as well as numerous antidepressants, anti-nausea meds. What has been successful for me, with the least possible side effects Is what I mentioned above, the Effexor, the Cambia plus Phenergan 25mg for nausea if you need it. I'm on the least possible medication and improving. Not 100% but functioning much better, plus I'm happy! I'm out of the wheelchair again and with the migraines controlled, maybe not completely, but lets say 70% better :) the seizures have stopped and my heart rate is back to normal. I'm still working on controlling the tremor and getting into physical therapy. I really hope I helped you or maybe someone who may be reading this. Please feel free to ask any questions if I wasn't clear about something. One more really odd as in interesting thing I started drinking was "organic turmeric." I put 1 teaspoon of turmeric and a pinch of pepper in 6 oz of cool water and stir it really well and I drink it down...( The pepper is suppose to help your body absorb the turmeric.) I did research and it's one of the only spices to cross the blood brain barrier. Its worth a shot. I like it. I notice this relaxed feeling about 15 minutes after I drink it Just thought I"d share... There is help out there, it's just a matter of finding what works for you. I had to wait almost half of my lifetime. Hopefully you find something soon. I wish you all the best, you are so young and have your whole life ahead of you, good luck! Aunie