The genes associated with hemiplegic migraine are
CACNA1A,
ATP1A2, and
SCN1A
I had over 75 episodes last year and the doctors are no wiser as to what to do to prevent them. They last from 7 minutes with speech disturbances but paralysis lasts longer, to one the other night that lasted one and one-half hours with paralysis longer. The longest I’ve had is 3 hours speech and about 5 hours paralysis. I’ve had MRI, CAT scan, caratoid arterial scan etc. All seem clear.
Looking to get in touch with others and discuss treatment options.
I was diagnosed with this. Turns out I had a brain tumor. Get multiple opinions. I took me 10 opinions toget the correct answer. H had CyberKnife radiation, and it fixed me right up.
Check into Todd’s Paralysis as well. I am a Geologist, and not a Doctor, but there may be a possibility of a brain lesion causing this type of problem. Mine was a big, fat, messy brain tumor that somhow got ignored, but there could be a small calcifcation from a bleed, or some other structural abnormality. If you have MRI’s, or CAT scans, you can send them off to fancy places like Hopkins, MC Anderson, UCLA, Cleveland Clinic, Yale for cheap to free. They then take the films to a Tumor Board, where all of the Fancy Pants neurologists, radiation oncologists and Radiologists look at the films together. It is a priceless service. No travel, minimal cost or free. I am prejudiced against all of the Bonehead hospitals in Boston that told me I had migraines, but maybe they are better now. Dana Farber, Brigham, Mass General, Beth Israel, Boston Medical Center. You can send them CD of the films.
Mine seem to be associated with Addies Disease which sometimes involves a blown pupil or a contricted pupil. I recommend taking Omega 3s. Also mine can be triggered by exposure to light but more from Radio Frequency Radiation from all forms of wireless…ei wifi, cell phones, cell towers, cordless land lines, wireless computer, keyboard, mouse, monitors,etc. Flourescent lights are a problem.
With the current research regarding wireless radiation I would check out ehtrust.org for information on how to reduce your exposure to radio frequency radiation.
I know this is a specific migraine you are targeting, but I have suspect that Elemental Magnesium (Glycinate) could help in this situation along with getting checked for any existing tumors.
Another really great source of information would be DrCarolyndean.com she has helped many specific individual cases, she may have a suggestion for yours.
I have been diagnosed with Andersen Tawil syndrome type 2 one of the forms of primary periodic paralysis. My major joints are lax but I also have muscle stiffness at times. IT is beginning to look like mitochondrial issues are at play versus a known mutation for Andersen tawil syndrome. I also have many calcium channel mutations not yet identified as pathological.
There’s something to that! I noticed when visiting a place with no internet and out in the wilderness, my headaches greatly decline. I also recently moved from prior location to one with new developments and farm land nearby and once again, my chronic headaches and migraines have lessened though I suppose with the new construction, that will likely change for me soon.
When I wrote this in April 2018 I was ONLY having 75 episodes a year. That gradually increased to about 6 or 7 A DAY in 2020. I was constantly in the hospital for major pain relief and on stroke watch. In about June of 2018 I found a newspaper article about a genetic study being carried out by the Genomics Department of Queensland Institute of Technology here in Australia. I wrote a long email and they phoned the next day. They tested my blood, then that of my family in Texas, USA. Long story short, 4 years later I have the answers!!! I have two more FHM gene mutations that produce (or don’t) energy production in the cells! They suggested I start with CoQ-10 supplementation at a rate UP TO 50mg per kilogram of weight. Right now I’m taking 1400 mg a day and still having occasional speech difficulties, hardly any migraines and virtually no paralysis. The geneticists think I should increase the dosage until it stops altogether, but more than 1400 is kinda nauseating and I’m just so relieved for what it’s doing that I’m happy. For now.
I’m not suggesting AT ALL that CoQ-10 in high doses is the right solution for everyone. But I thought you would like to know how much it has helped me, with my exact genetic make-up.