[Quandry]

Many of my family members have neurological problems and I'm wondering if there is any link to MG and FHM (Familial Hemiplegic Migraines). My brother has seizures because of his migraines, one of my grand daughters faints with hers, another grand daughter has visual disturbances and one side of her body goes numb and she loses muscles strength on that side, she then gets the headache and nausea. My mom has the visual auras and I have them too. I have seen arches of color from both eyes followed by total blindness which didn't last long. The next day my left arm felt as though a blood pressure cuff was squeezing my arm. Another time I saw geometrical patterns in a swirl that blocked my vision for most of a day. I've had several scans of my brain for stroke, but there is no evidence of a stroke. My daughter gets bad headaches and she's now starting to get the visual disturbances. I have a sister who also gets the auras and she has seizures also and so does her daughter. I've read on some sites that MG may be considered a channelopathy. I've also read that Familial Hemiplegic Migraines are a channelopathy. Nobody in my family has been diagnosed with FHM but when I go to the doctors I'm going to mention this. I have also had Malignant Hyperthermia during an operation which is also a channelopathy. I'm hoping some of you might have some more insight into this. I want to help my family find some answers.

[cait24]

I only have one child and she gets severe migraines that are proceeded by a visual aura (vision is severely affected) followed by extreme abdominal pain and nausea. As far as it relating to MG or a channelopathy, I would not know. I get a lot of headache but I attributed them to eyestrain trying to get the double vision back in focus.

Pleases let us know if the doctors attributed it to a channelopathy.
thanks
kathie

[AnnieB3]

Quandry, I did some research awhile back for a friend of mine who has chronic migraines. A newer treatment for some is acetylcholine. And, yes, there is a channelopathy component to some.

Google "migraine acetylcholine" and you'll find more info.

There are also autoimmune encephalopathies that can cause seizures and migraines.

Have you thought about seeing a geneticist?

Some people have triggers for their migraines such as MSG and other additives, tomatoes (which naturally have MSG), bright or flashing lights, changes in air pressure, being on a plane, changes in hydration and so many other things! It might be good for your family members and you to keep a journal of what you've eaten or been doing before migraines.

I no longer have them unless I eat tomatoes. They run in my family too.

Annie

[Quandry]

Thank you for your comments.

Kathie, I'll let you know what the doctor says.

Annie, I'm not sure if my insurance or if anyone in my family has insurance that would cover a geneticist. I'm not sure what my triggers are, but I do have some issues with potatoes and bananas, they make me swell. I think also chocolate at times and coffee too may be a cause. However, caffeinated tea is OK. The one Grand daughter that is really bad has migraines after she eats peaches. If I give her jalapenos and some tea with caffeine her symptoms vanish. I think it's the capsaicin in the peppers and maybe the caffeine too. She literally crawls when her migraines are bad and she can't tolerate light at all. I've had to pick her up from school several times because she can't function. We took her to the ER before and were told she was suffering from migraines.

I too have issues with flashing light. If I'm in a car driving past a forest with flickering light in the background I get nauseous. It's also happened when walking by a chain link fence with the sun behind it. Even a fan with light attached can cause the nausea. Some movies will cause me to be nauseous when the screen flickers too fast.

Tomatoes don't seem to bother me but milk products do hormonally. Lately MSG is causing some problems and that's a bummer because I love Chinese food. I don't know if any of this is related to migraines or not.

I do have a problem with altitudes. I can't think straight and was told by a doctor when I was a child that I have altitude sickness when I lived for a brief time in Denver Colorado. I remember being very nauseous back then. So maybe it's related more to migraines than to altitude sickness. I even get similar symptoms when going to a lower altitude.

I live in the same house as my grand daughter that has that major problems and I've been watching what she eats. She is thirteen and a lot of this is probably hormonal. I used to get a lot of visual auras before my time of the month came. I worry so much about her because I've seen how much my brother has suffered with the seizures. He spends most of his time in the dark. He can't even go outside during the day unless his eyes are totally covered. He's had so many seizures that he's losing part of his thinking ability and he's constantly getting injured from the seizures.

I did look up the relationship between acetlycholine and migraines. It would seem that mestinon would help people with migraines by keeping the acetylcholine in the body longer.

[AnnieB3]

Quandry, It sounds like you are having trouble with potassium. PLEASE go get your electrolytes and kidney function checked out with your primary doctor. "Swelling" is not normal (do you mean edema?) and should be thoroughly assessed. At least have a conversation with your PCP.

Citric acid foods can cause migraines too in some people.

If you get referred to a geneticist from a neuro, the costs might be paid for. There are other tests a neuro can do to check this family connection out.

It sounds like some solid thinking by a neuro would be a very good idea.

Take care,
Annie

[Quandry]

Annie, I'm not sure what kind of swelling it is but for some reason if I have salt with the bananas or with the potatoes I don't swell as much, but if I use too much salt I'll swell too. Sometimes salt acts like a diuretic and sometimes not. So I don't know if this is caused by a channelopathy or not or if it is an electrolyte imbalance. I've had a metabollic panel done and it showed up normal. I'm not sure if that's the test to take or not.

I'm being sent to a Neuropsych doctor next month and wonder if his realm of knowledge is more towards Neurology or Psychology. The Rhuematologist who referred me is the one who diagnosed me with Myasthenia Gravis, and he gave me a note to give to the Neuropsych doctor explaining his diagnosis. I'm afraid that I'll have to start all over again...I want to tell this new doctor everything that's going on but I've found that when I do I'm dismissed more easily. I'm going to try and mention that I'd like to be checked for channelopathies and mention my family history. I just hope it isn't swept under the rug.

To me, it's fairly obvious that there is some kind of problem in my family in relation to acetylcholine and with some kind of channelopathy or channelopathies.