Nighttime/sleep Episodes Increasing

[Anoj]

hello, i have hyper POTS. it had been a long time - nearly 2 years - since i had nighttime episodes. now that has changed. it is almost nightly, or every other night now, where i wake up in the middle of the night feeling like either a ) i am having a heart attack or b ) like i am about to have a seizure. this has been going on for about 2-3 months now.

i don't know how to describe these episodes or what exactly they are. doc says they are just POTS episodes and prescribed levsin to regulate my "vagal control" but i haven't taken it yet. something that causes constipation/drowsiness/dizziness does not appeal to me.

when i wake up, i feel shaky, but it's a shakiness coming from the inside, almost like, a current of electricity coursing through my veins. my limbs or body doesn't shake, it just feels like an internal tremor. it feels like my body is out of control.

here's the part i don't understand. when these episodes happen, i take my BP and pulse, and they are completely NORMAL! i don't understand what these episodes are when the BP and heart rate are normal?? is it possible to have a hyper POTS episode in the middle of the night with normal vitals? this makes no sense to me. i've begun to wonder whether i am having seizures of some sort?

i have already had a sleep study and 48-hr holter monitor. the sleep study showed alpha wave disturbance, and the heart monitor didn't show much, tbh. i don't think my doctors are going to want to repeat any of those tests, and i'm not sure if they're even necessary.

i am just wondering if anyone on here with POTS, specifically hyper POTS, might have any experience with these middle-of-the-night episodes and/or have any ideas as to what this might be. i already know what a hyper episode feels like, but usually those episodes always showed some sort of elevated BP, and now i can't seem to document anything.

[kayjay]

I have hyper and yes- what you describe has happened to me. I have no explanation for it. Having very low blood pressure will set of adrenalin. Sadly I cannot correlate my numbers to symtoms. Both high and low feel horrible. It is possible that your Bp is dropping at night, adrenalin kicks in and brings it up to normal. You still will feel all of the effects. I had a 24 hour blood pressure cuff at Mayo and my nighttime BP drops drastically.

I didn't want a sleep study but I do take meds to sleep.

[looneymom]

My son has POTS and has had sleep problems since January of this year. He would fall asleep but could not stay a sleep. He would wake up drenched in sweat and would wake up every other hour. He is 13, so hormones could be part of the problem. About 2 months ago, he was put on extended release clonidine. He is now sleeping through the night. In fact so good, that he was having a hard time getting awake in the morning. So this last week his dosage of 3mg was dropped down to 2mg. He is still sleeping through night and is more alert through the day. Our neurologist prescribed this medication for this sleeping condition.

Rachel

[Sunshine88]

Is it around 2 or 3 am regularly? I get the same feeling at 3 am (like clockwork), which I've been told is related to hiatame release being at its highest at that time. My HR is normal, but I wake up with a jolt feeling "charged" inside.

[kayjay]

My son has POTS and has had sleep problems since January of this year. He would fall asleep but could not stay a sleep. He would wake up drenched in sweat and would wake up every other hour. He is 13, so hormones could be part of the problem. About 2 months ago, he was put on extended release clonidine. He is now sleeping through the night. In fact so good, that he was having a hard time getting awake in the morning. So this last week his dosage of 3mg was dropped down to 2mg. He is still sleeping through night and is more alert through the day. Our neurologist prescribed this medication for this sleeping condition.

Rachel

I actually am no longer soaking the sheets. From 25 to almost 39 I had this problem. I do take medication to seep but I think my beta blocker has helped as well.

I'm so glad that your son is able to get some sleep. Not sleeping is horrible- I can't imagine growing and not sleeping. His body may "reset" a little bit now.

[AllAboutPeace]

I was thinking along the same lines as Kayjay. I'm not diagnosed hyper, but my symptoms were very much hyper in presentation in the beginning with tons of surges, etc. I have had the same thing you describe and I do believe, at least in my case that its due to dropping BP. It often happens when I'm feeling extra fatigued/symptomatic going to sleep (along with my typical low hr and BP).

I have BP drops and had one a few weeks ago after cooking and being in the kitchen for a long time. Luckily (and perhaps oddly) it will happen once i sit down and stop moving. As I was having dinner I felt the internal tremor starting along with the weakness and fatigue. It feels like you're shaking so much that others should be able to see it, but they couldn't when I held my hand out. I would normally head for the couch or floor at this point, but really didn't have the energy to move, so I picked up my fork lightly and it started bouncing around - even though my hand appeared quite stable. My son thought it was a little freaky, but for me it was confirmation that 'ya, something IS definitely going on here'.

[Anoj]

yes, i was also contemplating the theory of HR dropping in sleep and body jump-starting back to life. is this dangerous? many of the things you all described above happen to me as well. it usually happens when i'm extra tired or have pushed myself harder than normal (which for most people would be living a normal life). the internal nature of this is hard to describe and/or document. i was becoming paranoid that i was about to have a seizure, altho i have no idea what that would even feel like.

if this theory is correct, i don't believe taking more beta blocker would make sense. that is one of the things my doc recommended - increasing the beta dose. if low HR is actually causing these adrenaline episodes, how would taking more beta help this situation? wouldn't it make it worse? doc wants me to take levsin every day. i haven't gotten much feedback on my questions about that here. probably becs his treatment option isn't very conventional or common. i don't really trust this form of treatment and haven't even done it, altho i did fill the prescription.

one of my night episodes was so bad that i went to the hospital. when i arrived my BP was 140/something, which means it had to be way higher before i left to go there. lately, though, my BP has been normal during the episodes. one other thing was, my arm went completely red. (mast cell?) i have always wondered about mast cell issues. i take an antihistamine every day because if i don't, i break out in hives all over my body. the only thing doctors said was people with thyroid issues can get hives. i also have hashimoto's.

[Katybug]

There was just a paper published in Feb that showed that POTS patients experience a high rate of alpha wave disturbance in their sleep. They were not able to determine why. So, that confirms par tof what's happening to you.

Also, when you say your vitals are "normal" does that mean normal for your waking vitals because your vitals should actually be somewhat suppressed when you are asleep so waking with "normal" vitals may mean that you had something (like maybe alpha waves) that were kicking up your sympathetic nervous system while you were asleep and dumping adrenaline into your blood stream. Hope that theory makes sense.

BTW, I get the internal tremor feeling and I HATE it. It's awful!

[Anoj]

yeah, that totally makes sense. you are right, when i said normal it was higher than "sleep normal" in most cases, except for a few. and yes, the feeling of internal tremors *****. especially when it wakes you up and you have no idea where you are, what day it is, and it's dark, etc. i always panic, even though i have a good idea of what it is, and wake my husband up. the only thing i try to do is deep breathing to calm myself down and take my BP. it has been passing quickly, and i've been getting back to sleep pretty fast. except for the hospital trip a few months ago.

i would love to see the research paper! thanks for mentioning that. i didn't know that. wow, POTS + alpha wave disturbance. interesting!

[Katybug]

The paper was posted on here by Alex on a thread that looneymom started but I can't find the name of the thread this evening.

[cberau]

I'm hyper-pots as well, and my sleep is only getting worse with time. it's never been good. Palpitations, tremors, hot flashes, sweating, itching, nausea, shortness of breath, dizziness all keep me from getting to sleep. If I do actually get into a real sleep, I sleep completely uncontrolled and would sleep through getting hit by an atom bomb, usually for 24-30 hours straight after 3 days of no sleep, then upon waking I am completely exhausted and can't move for literally at least 12 hours, and start the whole cycle again.

[kayjay]

Beta blockers won't simply lower Bp- mine did at first but it has a "blocking" action on the adrenal hormones. Sorry I'm getting ready to leave my house but betas might be helpful.

[cberau]

Unfortunately I haven't had too much luck on them. No negative side effects from propranolol, however I wasn't on it long enough and Dr. Goodman instructed me to stop all meds possible in order to complete the autonomic and blood testing. I'm just awaiting his word, hopefully monday, then maybe he will have me start on Propranolol again, or whatever. Good to hear you have some improvement on a BB.

[Agreeky]

This is a very helpful thread! I was wondering this myself. I wake up with head rushes and other rather odd events. I never put it together my bp could be dipping. I know when I lay down my bp drops to 90/58 so I cannot imagine when I sleep.

[Guest Alex]

Katie, and everyone else

I bumped the thread with the article on the alpha-delta sleep prevalence in POTS. It's called "Newish POTS Information".

Also, if you search the forum for "alpha delta sleep" you'll get a bunch of other hits.

I hope this helps.

Alex

[Anoj]

well, last night's reading during my episode (almost nightly, i tell ya!) was 112/67 with HR of 57.

again, i do not understand this! what is waking me up? why do i feel tremors? everything seems normal!

[Guest Hanice]

That is really freaky, but at least its kinda comforting that your stats are normal! Do you wake up breathless?

[Sunshine88]

again, i do not understand this! what is waking me up? why do i feel tremors? everything seems normal!

Did you get my reply re: histamine? Do you have mcas symptoms?

[Katybug]

Cbakl,

Have you looked in mast cell activation disorder? What you describe as symptoms on this thread and also the thread about exercise and stamina are some of the symptoms of mcad. If you should have this in addition to pots/dysautonomia,beta blockers would be contraindicated. The itching, flushing, and dermatitis, especially in response to exercise are suspect.

[kayjay]

Unfortunately I haven't had too much luck on them. No negative side effects from propranolol, however I wasn't on it long enough and Dr. Goodman instructed me to stop all meds possible in order to complete the autonomic and blood testing. I'm just awaiting his word, hopefully monday, then maybe he will have me start on Propranolol again, or whatever. Good to hear you have some improvement on a BB.

It was long coming and I mean long. I'm not sure if it tools months or years for the beta to work. I'm on nadolol but I cut pills. It seems like often we need a small dose.

I just wanted to mention that betas made me feel worse for a long time. I'm glad I stuck it out. They aren't a fix but with my high Bp episodes I'm convinced that its a good idea to take them.

[looneymom]

Kayjay

Are you on a long acting or short acting beta blocker? I have heard about the short acting one but just can't remember the name. Does your beta blocker help with tremors? I was going to ask our cardiologist about trying this with my son to see if it would help with the tremors. I am a little confused because I thought beta blockers made hyperpots worse.

Obakl

I would get the MCAS checked out. Alex has posted some really good articles about this. Sorry about the sleep problems. You need your sleep. Have you had a sleep study? If your body becomes sleep deprived, this causes many more symptoms. My son's doctor's are wondering if being sleep deprived has caused his tremors. However, I also wonder about MCAS with my son and will be discussing it with his cardiologist on our visit in October. Hopefully you have a good doctor that's open minded and willing to look at the research. I will bump the articles on MCAS up if they cannot be found on the first page.

[kayjay]

Long acting beta- I'm not sure that they are a recommended choice for pre-pubescent boys.

My understanding is that betas are ideal for hyper pots. Some people take them for high anxiety situations such as public speaking.

[Anoj]

again, i do not understand this! what is waking me up? why do i feel tremors? everything seems normal!

Did you get my reply re: histamine? Do you have mcas symptoms?

i do have some symptoms, which i mentioned earlier - hives all over, if i don't take an antihistamine. i am not willing to part with my beta blocker, however. i talked to my doc about switching to clonidine and he said it was harder to take than a beta and would require more midodrine. i'm settling with the beta + antihistamine. i don't know of any docs in my area that dx or treat mast cell disorders.

[Anoj]

That is really freaky, but at least its kinda comforting that your stats are normal! Do you wake up breathless?

no, it is just like i am jolted out of sleep, feeling like my body is out of control, with internal tremors.

[cberau]

Cbakl,

Have you looked in mast cell activation disorder? What you describe as symptoms on this thread and also the thread about exercise and stamina are some of the symptoms of mcad. If you should have this in addition to pots/dysautonomia,beta blockers would be contraindicated. The itching, flushing, and dermatitis, especially in response to exercise are suspect.

Dr. Barboi in Chicago highly suspects I have MCAS. I think I could, I'm not sure. I have had two plasma tryptase blood tests, one at 3.4 ion 5/21, most recent on 9/11 last week at 3.1. I'm not sure it's an easy one to find. I definitely get the extreme itchiness all over in the shower after about 2 minutes, then after scratching every single place on my body it goes away enough to shower myself.