GeneChat

Familial or Non-Familial (Sporadic) Hemiplegic Migraines


#1

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.

Cheers
Marci in Australia


#2

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.


#3

Thanks so much. I’ll be more diligent in getting more opinions!


#4

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.


#5

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.


#6

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.

If you go to nih.gov and look up https://www.ncbi.nlm.nih.gov/pubmed/22426836 this could be one aspect to All Migraines, not just specific ones.

Another really great source of information would be DrCarolyndean.com she has helped many specific individual cases, she may have a suggestion for yours.


#7

I think I hit something on here by mistake trying to type a reply


#8

There is a recently reported form of atypical periodic paralysis that I believe is associated with atp1a2. I have a pathological mutation in ampd1 as well. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5791790/


#9

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.


#10

I have periodic paralysis.