Migraine

So? Has anyone ever heard of a "calcium channelopathy"? This is what my doc said is causing my migraines. What the heck is this?

When I google it, I get lots of technical mumbo jumbo papers. It sounds like some type of genetic issue. Maybe this is just a fancy name for a regular migraine?

I keep asking my doc to explain it better, but she tells me it's rare, and there isn't any documentation on it. I don't even understand how she knows I have it!!!! (Other than she says it has to do with my symptoms)

I've learned that fellow sufferers often know more than the docs. So does anyone out there know anything?

First off, welcome to the forum family!

I've never heard of it, either. I think out of all of us, if anyone has, it would be Teri. I don't think I blame you for being a bit skeptical, since the doc says there isn't documentation. I'd love to be able to shed some light on this for you, but I'm clueless on this one.

I googled "calcium channelopathy" & got 27,400 hits. The first one concerned "calcium channelopathy" in CFS & also talked about it WRT migraines.
Basically, it's a malfunction of the calcium ion channels in the body. Why in the dickens that neurologist couldn't come right out & say that is beyond me. Reminds me of the days when the doctors spoke Latin so us commoners wouldn't know what they were talking about.
Rebecca

Counting sheep...I know alot about calcium channelopathies, especially Episodic ataxia 2, my Daughter has it...It is genetic and if you have it you have a 50-50 chance of your kids getting it. It's a defect in your dna which stops proteins from being processed properly, this can result in cell death...especially in the brain...which then will cause movement problems over time...

Attacks can be triggered by heat, exrcise, exertion, hormones and emotional stress. Diamox is only treatment...treats symptoms but not the defect...this disease can cause progressive ataxia over decades, there is sometimes slowly progressive atrophy of the cerebellum...it is very important you know if this is what you have. It is very rare, and from your posts I have read, it appears this is what your Doctor thinks you have...OR FHM, that's another Calcium channelopathy....again, genetic, and can have lasting effects...

For the info of all...the spells involve headache, bad vision, dizziness, fatigue...nausea and vomiting if allowed to progress...sleep usually resolves them...they are episodic, lasting hours to days...my Daughter gets them 3-4 times a week...she cannot overexert herself, get too hot, not eat right, all of these things can bring on attacks...more suseptable to attacks during regular illnesses, as well...

This is a very rare genetic disease, my Daughter was just diagnosed after 14 years of trying...they now have gentic testing, and everyone who thinks they MAY have this disease, should have their brain (vermis) MRI'ed for atrophy...

Welcome pennysue,


I'd love to learn more about this condition. Any place you can point me in to begin?

Let us know if we can help you in any way?

Hi Pennysue, I just wanted to stop by and say Welcome to the forum!

quote:

Originally posted by Nancy Bonk:
Welcome pennysue,


I'd love to learn more about this condition. Any place you can point me in to begin?

Let us know if we can help you in any way?

HI Nancy and all!

There are three sites, that I am aware of w/ helpful info and folks who have lived it...There are many causes for Ataxia, some genetic, some sporatic, and all very varied...even within families, for some. It has been a fourteen year journey for me to finally find my Daughter has a rare genetic disease, but now we know what we are dealing with, and for hers, there is possible help for symptoms, we are blessed, hers has progressed very slowly...some are way worse off...I am simply looking to spread the word...I would hate to think, there are many others out there, suffering, with no idea as to the true cause, and how to bring ease...especially, the Children...the word needs to be spread...treatments can improve quality of life, in some.

I am still learning so much about these disorders...we'll see where it all goes...

here are some links...

http://www.ataxia.org/forum/toast.asp

http://rarediseases.info.nih.gov/

http://members.aol.com/mark24609/ataxia/

Thanks for the warm welcomes......

Penny

Thanks for the link for ataxia website. I was diagnosed with "ataxia" when I was a small child, but my mother refuses to talk about it beyond saying my problem is just "structural" (I would ask her about it when my teachers would bring it up).

My epileptologist said my gait is normal, just fine. I'm pretty self conscious about my gait, especially running. I'm glad 12 years of physical/orthopedic therapy & shoes finally paid off... I used to be horribly teased about my walking throughout my schooling, even in high school.

I've always wondered if it was connected to my neurological stuff & eye conditions, but there is very little info on it, especially in regards how it affects adults.

It's amazing that an entire year has passed, and someone FINALLY responded with all of this. Again, thank you... I plan to talk to my doc about the DNA tests. As you have mentioned, Diamox has been the only drug to help my migraines. However, I had to stop due to side effects :-(... Perhaps a brain transplant?!

My migraines (and ataxia) have been getting progressively worse throughout my life. I had a nasty viral infection almost six years ago that sent my headaches spiraling out of control. I also have a crazy list of other symptoms. My doc thinks it was a form of encephalitis (called Bickerstaff Brainstem encephalitis), as I really fit the bill well: partially paralyzed throat nerve and vestibular nerve, unpredictable drops in blood pressure, narcolepsy, breathing problems, and LOTs of ataxia. I could go on, but why bother ;-) ). I use a walker now at the ripe old age of 39. When the headaches hit, I sometimes can't walk at all.

I had always been a bit of a clutz, but not anything too apparent. When I was a child, the only obvious symptom was the headaches. My 6-year-old son was recently diagnosed with migraines also. If I have this channelopathy, I will feel so badly if I passed it to my baby. FYI, he is no king of coordination either.

Has your daughter started the diamox? Any luck yet?

Oh boy, you sound like us! Katherines problems started in childhood, too. A clutz is the exact term we used..."stumbleina", is what some kids called her. She first complained of headaches...but it was more her eyes, I think causing the headaches...

Did you start on a low dosage of diamox? We did, 125 twice daily, and side effects have been nil.

My Daughter had strep once...it made her episodes unbearable, she was in bed for a month...it seems too, infections worsen symptoms...also hormones and HEAT...watch out for HEAT...and don't get too tired, that worsens it...exercise and exertion, too. My Daughters first episode was at Halloween at the age of 5. She came in, dropped to the floor, and vomited. She never had GREAT communication skills, but seemed normal to all. That's why it took 14 years for a diagnosis.

The thing with DNA is it is WHO we are. My Daughter would not be HERSELF if her DNA was different, and neither would your Son. So, we see it like, she is exactly as God made her. I have a friend I've made from the web, she has EA2 and has 3 kids w/ it as well. They, too, are on diamox. The important thing is getting diagnosed. The MRI of the vermis is crucial, especially w/ your torso problem, and DNA testing of the calcium gene is needed.

I hope you check this out, it's not as bad when you know what it is, I've found. Measures can be taken to minimize episodes once you figure out your triggers. My Daughter has a very good life. Regular school, good marks, friends, but she needs rest and sleep...and NO HEAT! And not too cold either...emotional stress, they say is also a trigger. That can be VERY hard w/ a teenager. But, so far, so good. Alcohol is another no, no. It affects the vermis.

A few more thoughts...

I replied to your diamox question on the other posting...

My immune system seems to have gone to pot, and my symptoms are exacerbated when I get an infection. Plus, I've definitely noticed a correlation with hormones, heat, exhaustion, and stress. My mother-in-law just passed away a couple weeks ago. The associated stress sent me off the deep-end for about a week. Oh, and one glass of wine... I either get a migraine, or I am on the floor from my blood pressure dropping too low.

But, I thought all of these symptoms could be normal migraine stuff... even the ataxia... I still don't really understand what makes the doc suspect a calcium channelopathy? What makes my symptoms different than a typical migraneur? I guess I'll have to ask the doctor that one.

I'd say the fact that there is brain stem damage, lack of torso strength, Nystagmus, and your Son is showing the same symptoms? That would lead me in the direction of a channelopathy...

But please don't worry. It won't make anything better and may actually make you ill. It could be way worse, as I see it...A calcium channelopathy is WAY better than some of the alternatives! I have done a WHACK of reading, and the SCA's are REALLY sad......and Friedrich's Ataxia, that hits kids and they die very young, you KNOW it's not that...

I am speaking w/ a Woman who had EA2 since infancy...10 months or so...and she is now 44, still mobile, sharp, and a joy to talk to...she is also raising 4 kids, 3 w/EA2...she does it all...so, it's far from hopeless...and there are great strides being made right now in Genetics research...we Calcium gene folks, are lucky cause the epilepsy and migraine "markers" (I'm not sure of the word) are on the calcium gene. That means lots of money is being spent on research because, to be honest, there is money in curing/helping those two illnesses. Many have them. This is all new, like all found within the last 15 years or so...

So, knowledge is power. Bring the info and questions to your Doctor. And take it from there...do some reading on the net, I google night and day...lol...and ask lots of questions, we learn from each other. I find folks on the net now more than the Doctors. My Daughter is the FIRST child to be diagnosed w/ this disease at Childrens Hospital of Eastern Ontario...that's a BIG Hospital...I went to Doctors for 14 years saying something was wrong, they began to think I was nuts! Until the MRI and scoliosis...and then the genetics....but I never pieced it all together till she was 12 or so...So, there is lots to be learned from each other.

Scoloisis, hormone issues, hm migraines, exercise exeretion fatigue, heat fatigue, stress craziness, clutzy kid, can't recover from other ilnesses that's me!!

How bout ADD and autistic tendencies, learning disablities? Was your DD dxed with Chronic Fatigue Syndrome, or fibromylgia?

PennySue123 please share more info. about how this presented for your daughter. I think I speak for more than one member of this forum that is searching for answers to life long struggles that can learn from your experience. Don't worry about long posts being annoying or boring--- you bring valuable info to this forum so please continue to share.

Mary in NM