Please let me know if you get any responces. I too have suffered for years with Hemiplegic migraines, since my twenties, I am now 48. Since Nov of last year my physical health has gone down hill very quickly. Doc's are looking but haven't come up with any answers yet and I want my life back very badly! My heart goes out to you! I have total left side involvement. I even have to be very careful eating as I have started biting my cheeks when chewing. Walking backwards when I want to go forwards. Seeing double, blurry, prisms, or nothing out of my left eye, my left arm responds weird, I drop things, can't pick them up, just really weird crap. My face droops like I have had a stroke when I have a headache. All I want is life a bit more like it was before Nov 2010. So please let me know if anyone contact you. Or if you have more info please pass it on.
OMG! This is me exactly! I have HM since I was 17; now 35. I feel like no one understands this and the doctors just don't seem to get it. My life is rapidly going downhill. I need answers as to if this will be my destiny. I give myself INtermuscilar injections of toradol and take percocets for pain. Also have been diagnosed with fibromyalgia and take amrix and savella. Stil in pain and feel weird.
Wow. I've been out of the loop, sorry. Skadeedtin, here. Unfortunately, this illness is so rare and misunderstood that it is exceedingly difficult to find good medical care, doctors that listen and trust, and good education and advice with regard to one's condition. I have since February recovered a great deal of my ability to walk. I no longer use a crutch or a wheelchair. My attacks have quieted a great deal. I still have in excess of 40 episodes of HM per month. My record of being aura-free is 36 hours. Yes, there is a veritable mountain of symptoms that are strange indeed. Most of them are just the thing required to get you diagnosed with some physchological disorder. I am lucky, I have a neurologist that trusts me but I have been there with some physicians. I wanted to share with you what I do for wellness. I have had good results, but, like I said, I am not even a shadow of my former self:
1. I take Verapamil (calcium channel blocker) 80mg 3x a day. I've heard of people taking as much as 420mg a day. The more you take, the better you will be. Unfortunately, when I try to take more, the side effects (mainly intense dizziness) become too much for me.
2. I take 300-800mg of Magnesium Citrate in a solution. This is simply over the counter magnesium that I picked up at my local health food store. There is a HUGE amount of info on magnesium and migraine on the internet so I invite you to check it out for yourselves. Magnesium has mad as much a difference in my wellness as any prescription drug. Check with your docs, but if you get the okay, I would definately add this to your regimine.
3. I take 400mg of Riboflavin (vitamin B2) at 200mg twice a day with meals. Again, there is much, much info on this on the internet. This is a great way to reduce HM attacks with zero side effects. It's just a vitamin but for HMers it can be a godsend.
4. I stay on a low sodium (less than 1500mg per day) and low sugar diet. I only allow myself sugar that naturally occurs in fruits, etc. No processed sugars or sweets. Also, no caffiene, not even decaf. No caffinated teas like green tea. No chocolate of course. That would be sugar and caffiene. I try to eat at the same time every day and watch my calorie count as I am predominently sedentary now.
5. I have a mountain of visual problems. I have had dramatically abnormal VEP and AEP tests (they are visual and auditory evoked potential tests that measure nerve response). I have been given a script for precision tinted lenses as indicated by a colorimeter. They will also have what's called a binasal occlusion. I have not recieved my glasses yet. Please feel free to research these things.
Lastly, I have seen in excess of 6 neurologists before i settled on one. I have been seen and hospitalized by Mayo Clinic. I want to say that at NO point in time did ANY physician take even the briefest of moments to educate me about my illness, to discuss with me diet or exercise, or discuss with me alternative treatments. For me, doctors have solely been drug pushers, most of which with horrific side effects and only a slim chance of helpfulness. No physician suggested magnesium or B2 to me. I researched it and suggested it myself and got the go ahead. You truly MUST be an advocate of your own health care.
Look for information on PubMed, the NIH (national institute of health), and the Headache Society. If some website says this or that is a good idea, research it! Get the facts. Run it by the ole doc and check it out.
All of my best,
You're right. It is hard to find the right information on HM, treatments, care, and trigger identification and management. Then the information you do find may be out-of-date due to new research, inaccurate, incomplete, confusing, or hard to understand.
Wishing each of us with HM a pain-free day,
P.S. I've had HM since 1998 and migraine with aura since 1997.
Has anyone ever had this occur after an injury to spine or head? My wife was in a serious accident in 2009 last year began having all the signs described above. headaches, right side weakness to outright paralysis, numbness and tingling right side of body. Headaches are completely debilitating light and sound are extremely difficult to deal with. She never experienced these before accident.
My daughter was just diagnosed with Hemiplegic Migraine. She had occasional migraines before the age of 12 but nothing that couldn't be managed with Advil, dark and sleep. But a few months before her 12th birthday she fell backwards from running onto concrete and bounced her head. While the concussion seemed minor, within 3 month her symptoms went off the chart! It took 3 years to find a neurologist who didn't jump to "stressed teenage girl" after a 5 minute evaluation. Genetic tests confirmed the HM diagnosis.
While it doesn't appear that a brain injury could trigger an HM diagnosis (genetic condition), it appears in our case that the brain injury sent the symptoms off the chart!
Her mother appears to be the genetic donor as my family has no migraine history. She had migraine a couple days a month during her high school years and thought they were just cycle related. We know more now.