[Marciab]

Hi All,

I was hoping I could get some help here ...

Neuro problems are nothing new to me. I've had gluten ataxia, myoclonus, petite mals, insomnia, TIAs, buzzing, brain zaps, etc etc which are under control as long as I avoid gluten and watch my glucose. But now I have a new scarey symptom.

I was at my docs thinking that I was just going to show her what my TIAs looked like but it turned into a major seizure of some sort. And that's why I'm here ... I have no idea what happened and was hoping you could help.

It started out with me feeling a little off like my blood glucose was too low. But drinking some oj and eating a bit of lunch didn't help. I layed down and rested like I do when I'm having a TIA but the internal shakey feelings didn't go away this time ...

After a few minutes, I asked if I could lay down on a recliner and shortly afterwards, I found myself unable to breath without taking huge gulps of air one after the other. My lungs couldn't function any other way ... and that's when all the jerking started. I didn't breath like the the whole time but the feeling like my lungs were shutting down kept coming back.

My whole body was moving at times. I remember that my arms, shoulders and head would all move at one time ... my head would bob up and down or start going side ways ... and my arms would move up and down especially if I was holding them in.

There wasn't any way to stop this ... my brain didn't connect to my body parts anymore ...

Several times, EMTs and nurses told me to stop breathing like I was but it was uncontrollable if I wanted to get oxygen into my lungs ...

sorry for the long story ... does anyone else do this ? and what's it called ?

thanks ... Marcia

[Rrae]

How terribly frightened you must have been! I'm so sorry to hear this!
I'm glad you weren't alone when this happened!

I just wanted to welcome you here at NT......there are so many caring people here - you've come to a great place for support....and there is MUCH information here as well!

There will be others to join in on your post.....you aren't alone.
Please take comfort in knowing this ok?

Glad you've come aboard!

Truly Caring
Rae

[Marciab]

Originally Posted by Rrae

How terribly frightened you must have been! I'm so sorry to hear this!
I'm glad you weren't alone when this happened!

I just wanted to welcome you here at NT......there are so many caring people here - you've come to a great place for support....and there is MUCH information here as well!

There will be others to join in on your post.....you aren't alone.
Please take comfort in knowing this ok?

Glad you've come aboard!

Truly Caring
Rae

Thanks ... your response makes me feel a lot better. I'm looking forward to hearing from people who've had similar experiences.

I was at my favorite docs when this happened so that certainly helped too. Having people who understand what you're going through and actually care makes all the difference ...

I'm scheduled to see a nuerologist in a couple of weeks but am on the cancellation list as well ... the sooner the better of course ...

thanks ... hugs ... Marcia

PS. I was actually surprised based on my medical history that they didn't keep me so that they could take a closer look. I had a PFT and chemical stress test lined up because I've had increased SOB, They want to look at my heart / LBB and lung scarring so it's not like I can have the "normal" outpatient testing for those now. It's just too risky ...

[Darlene]

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help. I have epilepsy also, check into the epilepsy forum, there a good number of dear ones to assist you.

http://neurotalk.psychcentral.com/forum11.html

There are great number and caring fellow members here to assist you. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[Marciab]

thanks Darlene,

Thanks for the link ... I'm too fuzzy headed to understand it all right now. I know it's weird but because of all my other nuero problems, ataxia, myoclonus, etc ... I can accept this ... it's just scarey ...

thanks again for the link .. I'll be pouring over that or at least trying to ... I have Klonopin head ...

[Marciab]

I have a name for this now .. I've known about the nocturnal myoclonus and ataxia connection to gluten for 5 years now. It looks like I had a full blown myoclonic seizure ...

ok, I tried to post a link but this site won't let me ... duh !!! so ... if you google progressive-myoclonic-ataxia-associated-with-celiac-disease you'll find this ...

and this would explain why I'm running into things again / aka ataxia ... I thought the Klonopin was doing this to me ...

bummer ...

[MelodyL]

Originally Posted by Marciab

I have a name for this now .. I've known about the nocturnal myoclonus and ataxia connection to gluten for 5 years now. It looks like I had a full blown myoclonic seizure ...

ok, I tried to post a link but this site won't let me ... duh !!! so ... if you google progressive-myoclonic-ataxia-associated-with-celiac-disease you'll find this ...

and this would explain why I'm running into things again / aka ataxia ... I thought the Klonopin was doing this to me ...

bummer ...

Hi Marciab

I just wanted to welcome you and I am so so sorry that you are going through all of his. Others will come along and guide you. We are a nifty bunch of people here. Many know a great deal about their conditions.

Hopefully one of them will post here and you'll get some help.

Take care,

Melody

[Marciab]

Originally Posted by MelodyL

Hi Marciab

I just wanted to welcome you and I am so so sorry that you are going through all of his. Others will come along and guide you. We are a nifty bunch of people here. Many know a great deal about their conditions.

Hopefully one of them will post here and you'll get some help.

Take care,

Melody

Thanks Melody,

I just posted a thread on the epilepsy board. It's " Seizure triggers ? MCS ? Klonopin ?" and thread number 754391#754391 ... Links aren't allowed yet for me ... ...

I'm still confused and really appreciate the kindness here ... Marcia

[Marciab]

Caffeine may have played a role in this. I'd drunk 2 cups that morning when normally I'd only have had 1/2 a cup. Granted, I was playing with fire too .. I was eating a few of those GF goodies ...

IMHO, this is very important info for anyone with neurological problems.
FYI. If you decide to eliminate caffeine from your diet, be sure to go very very very very slowly. It's a drug and should be treated like one ...

HTH ... Marcia

http://health.howstuffworks.com/well...l/caffeine.htm

PS. The Paleo / low carb / low oxalate diet helped me tremendously but caffeine may have been causing my orthostatic intolerance and some, if not all of my CFS fatigue. I've been caffeine free since April 10, 2011 and have already noticed some improvements but only time will tell ...

[Dmom3005]

Hello Marcia

I am so glad you found us. I hope that you can get some help from the epilepsy room. We can be of help. I also know that you can get help at other places.

Donna