Seizures

[potsgirl]

Hello All~

I've recently had an increase in epileptic-like seizures, and am wondering if anyone else has dealt with these. I've had a couple where I'm standing and it feels like a lightning-bolt goes through my head to my feet, and my arms fly out and the rest of my body shakes. Quite frequently, when I'm trying to get up from taking my laying BP/HR it causes quite a severe seizure, and I've started passing out towards the end of them now. They're only 5-30 seconds, but my body really flays out and I don't remember the seizure and I can hardly speak or know where I'm at when I "come to".

I see my neurologist at Mayo on July 11th, since he's away for the month of June. Please share your stories or info with me if you have any. Thanks!

Cheers,

Jana

[kclynn]

My son had many of these multible times during the day during the winter. They slowly tapered and I think the florinef and midodrine helped also because he has had only the most minor occasional jerks (probably not very noticable to other people except me and him). I don't know how, maybe getting his body more stabilized. But once in awhile he will have a huge jerk, more so lately. Sometimes he is standing and talking and it will literally lift his feet off the floor. The stormy weather this week brought a short episode of these which we hadn't seen for quite awhile

[Csmith3]

I haven't had anything like the seizures you are describing, though I appreciate there are lots of different kinds of epilepsy. I wonder whether yours are something else because they seem to occur when you are standing after having been lying down and I can't think why position would affect the probability of having an epileptic seizure.

I get epileptic seizures and find the feelings afterwards of poor brain function, poor concentration and needing to sleep more aren't unlike day-to-day POTS. I would say the distinguishing features of the seizures for me are that afterwards I feel sick and I can sense that my brain might freak out again (more of a sensation of an electric shock/confusion in the brain rather than developing elsewhere in the body).

I would ask an eye witness to let you know whether your eyes are open or shut when these seizures happen. Eyes generally remain open during epileptic seizures so there is no sensation of waking up after a seizure; it is only external cues that enable me to realise that I have "lost some time". If you can provoke one of these seizures, you could always ask for an EEG to check what is happening.

I hope you can get this resolved because whatever it is, it sounds very unpleasant and distressing. Best wishes x

[pat57]

I have, but am told they are properly called convulsions. They take a certain form, and this is the confirmed clinical presentation of cerebral hypoxia.

http://www.amazon.com/Syncope-Mechanisms-M...mp;qid=12313790

The presentation is throwing head back, arching back eyes roll back,and extended then retracted limbs (tonic clonic- I think). I have confirmed bradycardia before and confirmed tachycardia, after, with no confirmed HR or BP during. I believe I have been alert at times and unresponsive , I know I have been on the floor- still- eyes open. (seen by husband- plus as I remember it) It is impossible for me to know if I was alert because I cannot know whatever I don't remember and I cannot know if I've remembered everything. However during those type of episodes there has been no conflict of what I recall and what others report.

I cannot remember which is which but with one (either autonomic or epileptic) frequency and force of seizing diminishes gradually, with the other the seizing is just over.

During the "seizure" I think I am conscious albeit dimmed but onlookers report a whole lot more then I recall. My memory would be of 5 - 10 seconds where as others report it lasting 3 minutes . I know my head is moving and my arms and legs but I never feel any impact from the floor or whatever. It causes me much less fear then it causes the onlookers. Actually I don't have any fear, its a neutral reality.

It might be important to note that my Bradycardia can be very brief. I would describe it as being unplugged. This was very true before my diagnosis, the meds I'm on give me minutes of warning. Which is plenty. If I lay down I abort an event. I do not throw up . I have no incontinence, don't know about the pupils of my eyes, have no fever, or hypersalivation. I recover in less then 30 minutes. No "postictal".

I have neurocardiogenic syncope.

Wishing you all the best.......

[Csmith3]

Thanks for that information Pat. I have looked up convulsive syncope and suspect I can also relate to that in some instances, and they would correspond with bradycardia. Jana - maybe you need to see the cardiologist instead!

This is all of interest to me since I seem to be getting fainting, general POTS symptoms and (non-convulsive) epileptic seizures and, frankly, even after 20 years of this, it can be difficult to distinguish between them. It makes it hard to work out whether any one particular drug is working because I am not sure what I am expecting it to fix! Anyway, sorry for the thread hijack Jana and good luck.

[potsgirl]

Thanks to everyone who answered. My boyfriend has been here for all of the seizures, so I know they don't last too long and I would assume they result from my BP dropping too low. Pat57, I can't get onto that site you mentioned, but I'm going to look at cerebral hypoxia and check it out.

Thanks again and cheers!

[pat57]

It was a page from Syncope: Mechanisms and Management by Dr. Grubb. If you go to amazon you can look inside the book.

I don't remember the page number.

goo0d luck

[Chrissy]

I started with more of a tic (head jerking and a sniff sniff) in September 2010 and it rapidly progressed since. My worst episode lasted 45 minutes with 2 minute breaks throughout. Managed to get some video during that episode. I'm fully alert through the whole event and can talk, but very slowly. I find they happen when I'm in crowded noisy environments, during insomnia periods, or anywhere with a lot of stimulation. I get major head tingling, but not full convulsions, during physical exams at doctor offices. I told one doctor how every night when I first lay down to sleep my eyes move very rapidly and I get very dizzy then I start to move uncontrollably for about 5 minutes. He did a reverse orthostatic and said the blood racing back to my brain maybe whats causing the nightime episodes. I have an appointment at an epilepsy center in September so maybe they will have some answers.

[icesktr189]

Chrissy

I get the exact same thing. My eyes move back and forth very quickly and I see flashes of light. I usually get dizziness and vertigo along with it and my body jerks a bit for like ten mins. I have been checked for seizures and it came back normal

[Neshema1]

I have pots & celiac. I have the nasty seizures that can last 2-4 hours. It is awful, I know. I was dxd with celiac at abt age 13 mos. I was on gluten free diet for years as a child. Then the docs decided it was something else, which I now know is another symptom of celiac. But, I have been off the diet for years. Every doc sees all my dxs & deficiencies (I can share if u want) and thinks I have celiac, except my GI doc. So I kept telling them I don't have it, although I am a textbook case. I now know what led my false neg test results my GI found. I recently had DNA testing & sure enough I DO have celiac & gluten sensitivity genes. Celiac or gluten sensitivity can affect all kinds of things in your body. I read some people don't even have GI issues but the other symptoms. I have GI issues AND other stuff & even gastroparesis from the dysautonomia. So, I'm going back on the glutenfree diet & hope it helps me. Gluten can be in medicine and toothpaste. It's hard to escape. But I'm determined to help myself, so I'm really going to try to follow it 100%. U can look up meds online. Most of mine are ok but a couple I need brand not generic. Incidentally, I'm waiting a mitochondrial disease workup. I noticed in a link above it mentioned mitochondrial disease. From what I understand gluten intolerance can be associated with it & many of the other autonomic disorders, like PD, Huntington's, diabetes, etc. Celiacs often report neuro symptoms like migraine, restless legs, brainfog, fatigue. Many with mito also have secondary pots. You might be interested in articles by Bruce Cohen Md. And dr boles in calif (I think) who both are interested in dysautonomia & mito. Boles only sees children but he talks about mitochondrial dysautonomia & focus a lot on GI issues. Hope this info helps. Feel free to PM me. You are not alone.