Waking Up All Through Nite With Ne Surges, Hot And Clammy...

[kitt]

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[sue1234]

Getting moody and angry-ish with a surge and clamminess sounds like a classic hypoglycemia episode to me. I have a looooong history of having them, and that is exactly what happens to me. I am never an angry person, ever, under normal circumstances, but if my glucose drops I become another person. You know those Snicker commercials where one of the characters is "not acting like himself" until he eats a Snickers bar? I can so relate to that commercial, as I am not myself until I eat something.

Do you have a way to check your glucose levels when you feel like that?

[kitt]

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[TCP]

I always wake up suddenly with a pounding heart, abdominal muscles clenching and sweating. No 100% sure what causes it but it's horrid!

[arizona girl]

One thing to check when this happens is your bp/hr, without getting up or moving to much. It may be that the blood pressure and heart rate are dropping really low and your body is trying to bring it up by doing these things.

I was waking up rigid with low bp and hr. That is was when it became apparent that the atenonol I was on was staying too long in my system and further lowering my bp/hr when I was supine even further.

Switching to labetalol to help with the postural swinging has helped with this. I'm on the short acting form and now only take it when I rise during activity. Though I can still get up there and laying down always brings it down as well, it has been better. I still have the night sweats at times but they appear to be associated with infection or hormonal cycle.

[Guest Alex]

I've experienced similar episodes but without flushing or sweating. I had my glucose checked - normal, I had my blood catecholamines checked (not during an episode though) - normal. My HR is usually elevated, and so is my BP. My legs hurt, my abdominal and intercostal muscles hurt but usually after I relax. Sometimes my teeth are clenched as well and I always shake like a leaf. Also, at times I get some bad chest pain with this.

The only thing i can do is breathe deeply and wait for it to go away. I went to the ER in the past and have been told these are panic attacks and that I should increase my benzodiazepine intake (no thank you, I'm trying to come off them).

Sorry to hear you're suffering like this as well.

Alex

edited to add:

I realized i forgot to mention, according to my dr I have hypovolemic POTS, not hyper POTS. Also, I'm having most of these surges in the early morning hours ...but I have a hard time falling asleep before 1-2 AM

[Ashelton80]

Yes, when I've pushed myself too hard I get these. They are terrible. I use the breathing I was taught at the biofeedback center in TX and it helps to shorten these episodes. A few years ago I would keep a sliver of Xanax on my nightstand and when I woke up doing that I would take it. It doesn't happen very often now, especially when I'm consistent with my exercise. That seems to keep them under control some.

[SeattleRain]

When I saw my GP the other day he asked if this happened to me, and said patients with panic disorder and other autonomic dysfunctions will wake up in the middle of the night sweating and in the middle of a panic attack.

When you say NE - does that mean Norepinephrine? I think that's what he called it - but it might have been just "adrenaline" surges - I can't remember.

If I remember right, he said that the brain will produce the adrenaline/NE in the middle of the night for no apparent reason - and that he treats these patients with a low dose SSRI. Not to treat depression - but because an SSRI directly effects some fancy schmancy nerve or node in the brain I can't remember the name of - that effects how your brain releases the NE/Adrenaline.

Ugh, I do a bad job at explaining things. I should start recording my doctor visits!

[corina]

But you try Seattle Rain and that's highly appreciated!

[Guest Alex]

SeatleRain,

I tried citalopram- an SSRI - some months ago, but it actually made the problem worse for me. I went from occasional surges a couple of times per month to almost constant surges 24/7. My dr explained to me the paradoxical reaction, but I forgot what it was - I posted about it a while back... The good thing is that it stopped being a constant problem shortly after I stopped the SSRI. I should start recording stuff too .

I still have mornings when the surges wake me up, but I wouldn't try an SSRI's again.

Alex

[Angela]

When this happens to me benzo's makes it go away. In fact, I hardly have surges any more.....hopefully that stays People seem to have such strong opinions on benzos and how bad they are but I don't care what people think if it helps me:).

Also, you could try coherent breathing which works similar to biofeedback in a sense. I think its 5 inhale/exhales per minute. But it is challenging to do in the middle of an attack, you kind of have to practice

[E Soskis]

I don't know what causes it but, I wake up multiple times in the night with my skin so hot, it burns to touch. When I place my hand where I've just been sleeping, the sheets are very hot. I don't sweat very much at all due to the AAG but, I sure can turn red and feel like I am about to burn up! -

[Loulou]

Kitt,

Hi, I have the same things going on at night. My doctor, (Dr. Randy Thompson) said I also have hyperpots. I am not currently taking any meds. I did not have any improvements with the many meds that I was taking. I have recently started to get clammy hands throughout the day with flushing and become very hot at times. You are not alone.

Lisa

[kitt]

Thanks all for the great feedback.

People have made good observations on this thread.

Arizona girl, Interesting because during the short periods when I took BB's my bp was especially low in the middle of the night. 70's over 50's. Can no longer take BB's due to the cardiologist believing I have hyper pots with MCA. Flushing, vomiting...

Alex, I agree that breathing techniques are incredibly helpful for both pots and many other issues. I learned years ago 'how' to meditate and 'do' visualization and it's very helpful. You tube has videos with simple techniques. Deepok Chopra has a free newsletter with good techniques, and many places offer CD’s for sale. I find the simplest meditations (which include breathing techniques) work best for me. I can simply turn it 'on' in my mind and it becomes an automatic soothing technique for relaxing and falling back asleep. (Expect lately with the NE surges in the middle of the night.)

Flushing though is different animal. If my recollection is correct Dr. Grubb's list of symptoms for hyper pots mca, flushing is the only symptom that is in 100% of people with hyper mca pots. (sign of mca)

Thank you Alex for the kind thoughts. Hope you're doing well?

Seattle rain...Your comment makes sense that NE surges happen in the middle of the night, and anti-depressents can help. Am so sensitive to drugs that I avoid taking any more than absolutely necessarey. Tend to be overwhelmed by side affects. But would certainly take them for this if I could tolerate them. Is anyone taking SSRI’s to help with NE surges? Which ones have you found to be helpful?

Angela, I'm with you on the breathing. This does not feel like a panic attack to me though. I just suddenly and abruptly wake up about every 2-3 hours during the night, and think 'really? this %&!* again? and again and again. I do take a benzo, (klonopin) before sleep, and have for many years for CFS, and it's been incredibly helpful for CFS issues. Its a well documented treatment for neuro immune issues, but I have no knowledge of how it's used for pots.

E Soskis, you gave an interesting description. You said your skin feels so hot it burns. I've tried to describe it and it feels hot and cold at the same time. Like fire and ice… that’s the best description I can give.

Lisa, thank you for telling me I'm not alone. Like you I'm not taking meds either. (Yet.) I see my cardiologist next week. Have you talked with Dr. Thompson about meds for hyperpots? (I didn't know he was practicing.) As for my experience since first posting, this waking with the sweating clamminess seems to 'cycle' but the wide awake wakening is every single night. Becoming tedious. Do other people with hyper pots have any ideas for this? Do you take H1 and H2 blockers before sleeping?

I would just like to sleep at night and have some energy during the day. The not sleeping is wearing me down.

[TCP]

I never used to have these surges until the neuropathy/POTS started although I suffered from anxiety before that. I don't think the anxiety causes it, I think it's part and parcel of the whole condition.

[issie]

Kitt, I do have this and yes there can be a mast cell connection to it. Especially for us that have this flushing thing going on. The body does a mast cell release in the night. I had a girl explain this all to me and it makes sense. I do take my antihistamines before bed and not in the day. Although, most people have to take them several times a day. It depends on how much an issue it is with you. Since adding the GastroCrom ---I'm better. I have to take less then what was RX'd and have to leave it off a few days - for some reason --I'll start having heart type pains. So, that's my clue to leave the GastroCrom off for a few days and then add it back. It seems I have to rotate and cycle almost everything I take. I'm super sensitive to meds and my liver and kidneys don't detox me properly and things re-circulate. If you try the H1 and H2's at night - let us know what happens --if that helps the waking up.

I've also found that motherwort helps with surges as does black strap molasses (unsulphered).

Issie

[RichGotsPots]

Interesting you had to stop taking BB due to MCA. Some ppl do better on different types of BB, it pays to find the right one since it will help keep your BP low at night. But have you taken your BP right after you wake up from one of these episodes. I've gotten them a few times, they are so bad because you have slowly calm yourself down from a subconscious dream.. Do you use any hyperadrenic meds like clonidine? Possible other BP lower meds might help, for example antihistamines would help with MCA and they lower BP.. Good luck, keep us posted if you find something along the way..

[E246]

hi Kitt,

you are not alone.

I have this - I wake several times a night with a flush, feeling unwell, sometimes like I have restless leg syndrome all over my body, sometimes just not quite right, then i go to the loo - moving sometimes can throw the feeling off.

I have seen a sleep doctor who think POTS is innocuous and that this is indigestion.

I think the reason for it changes - like the symptoms of POTS. It's a pain but until pots is better understood not sure any doctor will have a solution.

Lots of good advise here though.

[kitt]

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[roxie]

There is a video online (it's not supposed to be on forums or I'd post it, lol, you have to google yourself) by Dr Alan Pocinicki about autonomic sleep disturbance in EDS patients. He describes it kinda like Seattlerain did with the adrenaline circuits running and running at it.

I don't sleep well and when I do I wake up real sweaty, dizzy, & my heart racing

I did a sleep study and saw the my HR was consistently going over 190. My cardio out me on propranalol in aug & it started to help but I didn't feel like it was helping enough. I did another sleep study nov 1 & my hr is slightly better but still frequently shooting up. It explains the sweating.

My cardio was shocked that I was actually on 30 mg propranalol during that study. It shows my body is always running & has no ability to repair itself.

This week I am adding the clonidine patch to my propranalol to see if it helps.