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Can/is There A Genetic Componet To Paralysis Spellls?


dizzygirl
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I was wondering over the weekend i saw my family...and my brother was telling me about something that happened to him the other day.. he experienced his first paralasis episode.. and my mom stated that she has experienced some of the same kind of episodes of paralysis..

i was floored! i was like holy moly!!! and that got me wondering if there is some kind of genetic componet involved in not only dysautonomia.(in me and my case/family). but the paraysis as well?

anybody known of anything like this?

my mom has alot of symptoms of pots..my brother has some as well...

im wondering if there is an adrenaline thing going on too.. but that is a whole nother post!

i get the worst of my paralysis episodes when im going thru my really bad adrenaline surges.. that is why im wondering if there is an adrenaline thing going on.. verses it being a potassium problem..(i do have low potassium levels sporatically.)

I have 2 seperate paraylis epeisodes going on.. i have the ones that are related to low potassium.. but t hose are few and far between.. and are horrible to go thru..But the paralysis episodes that i have on a regular basis I believe are related to something other then potassium b/c the symptoms and I guess presentation of the spells are different from the other ones..

I hope ive made sense.. my mind is kind of not function properly today.. and i think i may have repeated myself and got thing a bit jumbles! sory

thanks a bunch folks

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hi dizzy,

i think there are only a few people around here that suffer from the paralysis. i really am sorry that you guys suffer from this because i am sure this must be SOOOO scary. hope you and the others (like morgan) can find some answers to help you out!

meanwhile: take very good care of yourself,

corina :(

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thank you morgan.that was helpful.. began doing some reading... and thanks corina your a sweetie... ;)

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I think there are only three or 4 of us that actually paralyze. Ernie and me for sure, but darned if I can remember who else, I am so sorry...fog city ;)

I am the hypokalemic type..I have to take 70 meq of potassium a day, just to stay at the low end of normal. I am being seen in a Muscular Dystrophy clinic the end of May.

I tell the doctors here, it doesn't matter what my K+ is, it matters WHERE it is. If you want to have it checked out, you can contact the closest MD facility near you and explain your symptoms. I just emailed the one in my town, and the director wrote me back personally. And they made an appointment.

A neuro told me I was a major attention seeker with lots of psychogenic illnesses and even though I didn't do it on purpose on a conscious level, I was on a subconscious level. I believed him for a long time and was really devastated. he said I did it with my POTS symptoms, my bp, my potassium, all of it.

An independent psychiatrist said the paralysis could be conversion disorder (the neuro told me he diagnoses a minimum of three cases a week...odd when true conversion is so rare it only happens in 1 in 200,000 people, which would mean 1/2 my town has it) but NONE of the physical aspects could be explained as psychological. The neuro gently explained that the psychiatrist didn't know as much as him and was wrong. His ego is the size of Manhattan at least.

Anyway, once I was on K+, it improved, but I have had to increase the dosage on a pretty regular basis. A social worker that works for DVR came to see my son, and was asking me about stuff, and she actually came up with PP and MD. She knew all kinds of stuff about it and told me just about everyone got the diagnoses i did, before they got the correct one. So we will see. The director said there is no good genetic testing, but that is not what the literature says. However, there is no doubt it is genetic.

Hope that helps, I found out there are 47 types of MD, and many can start in adulthood. good luck sweetie! morgan

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Morgan.. you have been thur the ringer when it comes to getting proper treatment that is for sure..

I have talked alto with my home cardio/pcp/neuro.. and my pots specilaist doc.. about my paraylsis stuff.. my cardio here after i told him about what i was experiencing and about wht i found online about PP and sleep paralysis.. he agree's that he thinks I have 2 seperate paralysis issues going on.. He told me that I was going to have to travel outside thearea.. more likely outside the state to get a doc to treat me.. b/c you dont see PP in everyday treating of Pt. he had never had a case till he met that is..

my docs here are not comfortable treating me...

im fortunate that my doc believe me and they havent pulled that psycho babble crudd with me.. the problem is they like i said arent comfortable treating it.. its not there are of specialty

I have an appointment at the cleveland clinic next month and im going to ask for a referal.. all i know is my body seems to keep going into over load.. as the paralysis spells like to come in droves..and some times all you can do is cry..once i can move and speak that is..they really drop me for a loop..

my POTS specialist (he is the only one who "tried" to treat this).. well he put me on diamox back in cotber to treat my paralysis spells as well as brain swelling.. well the medication did not react well with me.. and no further meds have been given to me.. so i try to eat potassium rich foods to keep my levels normal...I still have PPspells even when my levels on blood draws are normal... have to experienced this?

any way morgan i wish you luck next month at the clinic.. i do hope that they can come up with a concret answers for you.. and something that can help you feel better

hugs

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Dizzy, yes you can have paralysis, even if your labs are normal. Serum potassium levels are notoriously off for this. No doctors I have met so far have seen anyone else with it either.

The labs actually only have to CHANGE, not neccessarily drop. The meds do not work for everyone and you need to know what type you have. They test you during an attack and check your K+ and Lactic acid levels.

I always cry afterwards too, but I'm never sure why, i just do. It's just seems to be part of the process for me. Diamox and dyrenium are about the only med treatments. I have had dyrenium and did horribly on it. It was for my inner ear disease at the time i took it. Really, it's more about limiting activity and massive diet changes. Low carbs and salt.

I hope you have good luck at Cleveland. I feel lucky we have a clinic here. morgan

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I don't know about genetic but I get paralysed during times of extreme stress or no sleep and when I'm not asleep by a certain time then I get other horrible weird symptoms too.

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It can be triggered by extreme stress, which is why it's so easy for doctors to blow it off as psychiatric. People can have lots of episodes during sleep at waking, so it wouldn't surprise me.

You might try decreasing your carb and salt intake (although MANY of you are very dependent on sodium, it is a real trigger for people with PP) Of course unless you are diagnosed with PP by an expert, don't do anything...but that is the typical treatment.

When I was at my very worst, I discovered I was living on high simple carb type foods, like rice, cream of rice cereal, toast, etc. The real problem is so many overlapping things, so you treat one thing and it disturbs something else...very frustrating...

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It can be triggered by extreme stress, which is why it's so easy for doctors to blow it off as psychiatric. People can have lots of episodes during sleep at waking, so it wouldn't surprise me.

You might try decreasing your carb and salt intake (although MANY of you are very dependent on sodium, it is a real trigger for people with PP) Of course unless you are diagnosed with PP by an expert, don't do anything...but that is the typical treatment.

When I was at my very worst, I discovered I was living on high simple carb type foods, like rice, cream of rice cereal, toast, etc. The real problem is so many overlapping things, so you treat one thing and it disturbs something else...very frustrating...

Interesting about the carbs. My whole diet is mainly carbs! I don't eat much meat and I have to be careful what I eat due to stomach probs (don't we all!) and so I mainly eat bland carbs! Things like porridge, white bread (bad, I know) etc.

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