Does Anyone Here Have Seizure Activity With Pots?

[LBUQUOI]

Do any of you have seizure activity with POTS or adrenal insufficiency? My son has a small type of seizure when he passes out.

One of his friends from school, a girl, has been having seizures now for about a year. She has both POTS and adrenal insufficiency.

Both kids are 17.

My best friend has seizures when she gets the least little bit hot. I don't think she has POTS, but maybe adrenal insufficiency with very low blood pressure. She began having seizures from a case of meningitis.

Any comments?

Thanks!

[misstraci]

Sorry about your son and his friend and your friend too. I have what I call "seizurey" head feeling, a lot. I was also diagnosed from an EEG as having seizure/migraine activity but it's not bad episodes thank goodness. I had an episode one time however where I smelt really strong burning and I went to the ER (never helpful). I hope you all get answers and feel better!

[Dizzysillyak]

I'm sorry to hear your son has this.

I have a petite mal and sob when I've been up too long or do the pmttt. I have pots so my heart starts racing.

I've been dx with adrenal fatigue via the 2 - 4 days ? saliva test.

So far I've found that caffeine and gluten trigger me to do this more often. That and not eating. I'm

hypoglycemic and need to eat something to keep my blood glucose up every 30 - 60 minutes when doing any kind of physical

activity, walking, laundry marathon, etc, and every 2 hours when resting.

I'm a celiac who wasn't gf until I was 50 so that probably explains this. Has your son been tested for gluten

sensitivity ? In my experience, A stool test for gluten antibodies is more accurate than other tests. But

eliminating all common food intolerances might help you get to the root cause of these too. An

integrative dr, both an md and holistic, should be able to help too.

I just started down the mast cell protocal route and it's helping my oi. Info on this is on this site.

Tc .. D

[LBUQUOI]

Wow! Thank you for the info. I will definitely look into testing my son. I seriously think that adrenal insufficiency is making their seizures worse. My friend can't even do simple housework. If she gets the least little bit hot, she's out with a seizure. She's controlled by numerous medications, but she still has some where she just loses consciousness. No jerking and such, thank the good Lord.

If anyone else can shed some light on seizure activity, I sure welcome anything that will point me to a path to research. Thanks everyone!

[DADofPotsSon]

My son#2 has had some seizure activity with his NCS/POTS since age 16-17ish and he is now 26. He has always had these when he is hot or in a really warm room and his BP always is very low along with being dehydrated. Sometimes he will get these at night sleeping usually 3 am or later and as all monitoring shows his BP drops to a low level and then he can just pass out or at times he will go into a seizure. These type of seizures are not epileptic in nature but are more related to an anoxic condition and do appear to be different and sometimes the doctors call them convulsive in nature. He has had a lot of testing at various hospitals and Universities and all have concluded it is blood pressure/flow related.

His meds are florinef, midodrene, salt loading with fluids and when they are frequent, dylantin is added. If he has too many of these convulsions in a immediate time frame they will usually crossover to a grandmal, so usually IV's are immediately applied to stop the convulsions to prevent the crossover to full grandmal seizures.

The key to preventing the syncope/seizures are to keep the fluids up, the BP up and keeping him cool.

DADofPotsSon

[Kellysavedbygrace]

Sorry to hear about your son. That must be so frustrating for you. I also get "seizure like" episodes- smell burning, out of body experience, pronounced , occasional tremors followed by crippling fatigue (most common) and although I have had an EEG suspicious for seizure, my local neurologist (who is a epilepsy specialist) and my hematologist, (Mast Cell Dr) individually think I'm not having real seizures. Although to prove it we would need to do an inpatient EEG which I'm not planning to do.

Seizure type symptoms can be caused by mast cell activation- so that is what I suspect is happening to me.

[LBUQUOI]

Oh my goodness! You both (last two posts), have helped SO much! Thank you! My son's friend's symptoms sound exactly like 2nd son's. All her tests for seizure activity are normal, but yet she has grand mal seizures, or maybe like Kelly said, they are actually convulsions. I think my best friend actually has epilepsy, but heat is THE main trigger. Also, when her blood pressure is low because she isn't staying hydrated. I can't wait to share. I know that my son's friend is just so frustrated. Her adult life is just beginning. She is about to go to college and she and her dad are so worried. The only trigger she knows of is heat. I bet that dehydration is also a culprit. I didn't think about that one. I told them about the clinic at Vanderbilt. I hope they can go. My son hasn't had a syncope spell in quite some time. Last year, I think. He postures when he has one. His feet and hands turn down like when an animal is dying. His eyes roll back. It scares me so much. My oldest just goes white and his eyes roll back. His syncope is pretty normal, sort of, no seizure activity. Weird. Just weird.

Thank you all so much for shedding some light on things. They are beginning to make sense now.

[NeverGiveUpOnLife]

I've had seizures since I was 3 years old, I have absent seizures and had 1 grandmal seizure (thank god I don't have any more of those!) I'm on seizure medications and now I only have 1-4 seizures a month hopefully I can stop having them forever

[LBUQUOI]

NeverGiveUp, I hope you can be cured too! I hope everyone can. I'm thankful for all your responses.

[Jacquie802]

I have what are thought to be simple partial seizures. I have autonomic symptoms and am going to the hospital for long term EEG/EKG monitoring because my symptoms have gotten a lot worse, increasing my anxiety.

[Gerrik1]

Sorry to hear about your son. I had a 24 hour EEG and it shows slight seizure/migraine activity. I am on anti-seizure medication that helps with my migraines and no seizures

[jknh9]

I have POTS and NCS/NMS and I seize when I faint. When I started having serious episodes, people asked if I was epileptic. During the TTT I fainted within 3 minutes of being upright and seized while unconscious. I don't know what causes mine; I haven't been tested for adrenal issues or mast cell disorder.

My sympathy goes out to your son. It's bad enough to feel crappy so much and faint but then seizing on top of it too! I really empathize.