Jolted Awake

[gnnmi]

I am diagnosed with POTS and have neuropathy in my legs, trunk and arms. . Every time I start to fall asleep at night, I am jolted awake with an adrenaline surge. This also happens again around 1 and 4 a.m., accompanied by severe sweating that can go on for up to half an hour. I have to get up and change my nightgown twice a night at least. The adrenaline is like kerosene on the neuropathy, which then starts pulsating all over. This in turn is followed by feeling extremely cold, with crawling feelings in all the places I have neuropathy. I am desperate to sleep. I often give up at the 4 o'clock episode and try to get through the day, then it starts all over. 

I often doze off during the day because of this, and am jolted awake after just a few minutes. Now I am starting to sweat during the day also. 

I tried Florinef which increased the nerve pain. My doctor then prescribed Midrodine thinking my blood pressure is going too low, but I am afraid to take it since it causes creepy crawly feelings.

Can anyone explain what is going on and how to deal with this? Thank you.

[RecipeForDisaster]

I wish I could help, but I can only tell you I have similar problems... and the side effects from midodrine keep me at a 2.5mg dose every 2-3 hours, which works okay for me... no side effects and some good effects. At 5mg I get chills and crawling skin too severe to manage. At 10mg (recommended by my cardiologist because my BP runs so low) I got horrible cold chest pain and pressure. I depend on it, though, because it does bump the BP up.

 

I wake up at 2-3am although this does seem better when I take the higher dose of metoprolol (37.5) . Pounding heart, sweating, hot, for absolutely no reason. It's nearly impossible to get back to sleep. I'm usually up for the day. Oddly, if I take the higher dose of metoprolol, I tend to get bad nightmares lately. Those will wake me up and I am often upset about the content. It's a rock and a hard place. If you can take a beta blocker, it might help.

[KaciCrochets]

Welcome! I joined this forum last week to post about about the same adrenaline surge issues. Wish I had definite answers for you, but you are not alone. 

[Random-Symptom Man]

Have any of you done a sleep study, with eeg?

 

I don't know if what you experience is at all like what happens to me. Either way, yours seems much more frequent and frustrating. I'm sorry. I hope you can get some insight here ir elsewhere. 

My doctors and I are trying to schedule a 24 hour sleep/wake observation. We are concerned with central sleep apnea- another form of dysautonomia that I dont really understand. From my understanding, the docs think I just stop breathing during the night (and also during the day sometimes).

I often wake up with the sweats, heart pounding. My pulse ox is often low than my usual low of 90-92. Other times I wake with my limbs asleep. When I look at my HR data on nights that I wake up like this, my HR often jumps up massively before. 

Many times I'm amped for hours when I wake up like this. Then its hopeless to try to go back to sleep.

The doctors say they need the eeg to really see central sleep apnea. From my extremely crude understanding, lots of meds can cause central sleep apnea.

Good luck.

[RecipeForDisaster]

I've did have a home sleep study which did show mixed sleep apnea (no EEG), and I use an APAP every night. I think it reduced these episodes, which used to be pretty much continuous. Without a beta blocker, they'd be once a night, at least, and the "smoldering" would keep me from sleeping most of the night anyway. I'm not on anything that would exacerbate central apnea and I have no risk factors for obstructive. It's just there.

[KaciCrochets]

Despite insomnia being my primary complaint for years, no one ever suggested a sleep study for me. My sleep is so weird, last week I slept okay with no surges, and then yesterday I was fighting random anxiety all day and I was up all night except for maybe half an hour around 2 am. I am so full of catecholamines I feel really sick and like I want to run fifty miles but I'm so tired. Everything hurts and I spent a half hour crying into my husband's shoulder. My spine hurts and I'm shaky and super hot. This sucks, I don't know why I slept great one night and didn't sleep at all the next, but CBT was not helpful in calming my system at all so my doctor and her suggestions that I see a therapist can bite me.

[MomtoGiuliana]

Because you mention neuropathy I wanted to mention that you may want to have your B12 level tested.  I was found to be low in B12, which was causing mild neurological symptoms along with a severe POTS relapse, last year.  After 6 months on high dose of B12 the symptoms resolved nearly completely.

[DizzyPopcorn]

2 hours ago, MomtoGiuliana said:

Because you mention neuropathy I wanted to mention that you may want to have your B12 level tested.  I was found to be low in B12, which was causing mild neurological symptoms along with a severe POTS relapse, last year.  After 6 months on high dose of B12 the symptoms resolved nearly completely.

Maybe a random question, but why is the general population not tracked on a yearly basis for vitamins and whatnot? Wouldn't that prevent many ailments that depends on these vitamins to be balanced? 

[RecipeForDisaster]

I also had extremely low B12 and neuropathy from that, plus low vitamin D and iron. None were found early... 

 

My mood is usually pretty good, but when I have really poor sleep, I'm a mess emotionally the next day. I think that's pretty natural.

[Pistol]

@RecipeForDisaster - yes. I believe it is. Who would not b cranky after a bad nights of sleep?

[DizzyPopcorn]

14 hours ago, Pistol said:

@RecipeForDisaster - yes. I believe it is. Who would not b cranky after a bad nights of sleep?

I don't know. I used to be sleep deprived in college sometimes when i had deadlines (classic college student) and even then, my days were ok. Not great, but i was still human and not yelling at ppl etc. 

Now? Thats a different story

[MomtoGiuliana]

23 hours ago, DizzyPopcorn said:

Maybe a random question, but why is the general population not tracked on a yearly basis for vitamins and whatnot? Wouldn't that prevent many ailments that depends on these vitamins to be balanced? 

I think basically in the US anyway it is unusual to have a vitamin deficiency.  Or anyway that is the general view.  There has been controversy over the issue of Vitamin D.  Iron can be low for many women and a CBC can assess this which would be part of a periodic exam.

It is becoming more recognized I believe that low B12 is not that uncommon.  Especially in people over 50.  But even younger people who are vegan or vegetarian or develop difficulty absorbing it for one of many reasons including taking certain medications.  Probably if someone is experiencing neuropathy most doctors would think to check B12--hopefully.

[KaciCrochets]

People with hEDS are prone to malabsorption, which leads to vitamin deficiencies in spite of eating healthy, but most doctors don't know that. Most doctors don't even know what hEDS is. And since POTS can affect the GI tract, I imagine there can be malabsorption from that, too. I get tested for vitamin D and iron sometimes, but I've only had my ferritin tested once and my vitamin B levels tested once. Some things, like magnesium, are carefully controlled in the bloodstream but your stores (in fat or bones or muscle) can be dangerously low, and the only way to tell is with a biopsy. So nutrient level testing can be tricky.

[gnnmi]

Thanks to everyone. It's nice to know I am not alone. I am already being treated for B12 so will keep looking and post if anything helps. Meditation takes the edge off and 

I will look into nutritional deficiencies. Good point.

[Kerry Sue]

On 9/16/2019 at 7:50 AM, MomtoGiuliana said:

Because you mention neuropathy I wanted to mention that you may want to have your B12 level tested.  I was found to be low in B12, which was causing mild neurological symptoms along with a severe POTS relapse, last year.  After 6 months on high dose of B12 the symptoms resolved nearly completely.

Are you saying that POTS symptoms nearly resolved for you after addressing the low B12? I got my lab results back last weak and I am low in vitamin D.  I was low in iron and ferritin but those are slowly coming up with time.  I had a hair analysis that shows I am low in minerals as well.  I had severe low potassium in June and borderline low sodium.  I have a few hormones that are unbalanced also.  My DHEA is high and my DHT is high.   I am working to get all of this balanced out... just hanging in there the best I can in the mean time.  I pray everyone is doing well. 

[MomtoGiuliana]

3 hours ago, Kerry Sue said:

Are you saying that POTS symptoms nearly resolved for you after addressing the low B12? 

Yes.  I had severe POTS during pregnancy and post partum which eventually pretty much resolved to mild symptoms--my child is now 16.  However last year I suddenly developed severe POTS for a 2nd time.  My B12 was found to be low.  After several months of supplementation my symptoms resolved again to mild symptoms.  There are published articles that link low B12 to autonomic dysfunction (I think the one study I remember found that teens with autonomic dysfunction improved with B12 treatment).  There has also been a published article linking low Vit D to autonomic dysfunction.

Many patients with POTS have borderline low potassium, from what I have seen here on the forum.  I have it at times.

Hopefully resolving these imbalances you mention will bring about improvement in symptoms for you.