Waking During The Night

[imre]

I have been jolted awake by pots symptoms at 5:30-6 am every day for no apparent reason. Sometimes this is fine as I try to get to bed by ten. But, If I get to bed any later and wake up it leaves me feeling extremely tired the next day. Anybody experience this type of symptom?

[Dustbunni]

Oh sweet sleep. Ever since my first symptom started over a decade ago I've had issues with insomnia. Then a few years ago as I got worse things changed. Sometimes it was insomnia, then for a few months I'd wake at 2-3 AM each day and not be able to go back to sleep for at least an hour or two, but I eventually would and could then sleep in late to make up for it. Then things changed again and in the last 2-3 years I haven't slept past 7:00 AM but a few times total. I don't think I've reached 8:00 but maybe twice. Beyond that has never happened. I don't know why. Usually I wake between 5 and 6 AM (sometimes as early as 4). Every morning. No matter how tired I am. No matter how much I just want to snuggle back into my blankets and sleep. It doesn't happen. It's like my body wakes up, my heart speeds up, and there is no way to physically get back to sleep. I've tried staying up later, going to bed sooner, taking naps, not taking naps, sleep aids...nothing has changed this.

Sorry, I really wish I could suggest something to help, but at least I can tell you you're not alone.

[gjensen]

If you figure it out. Let me know.

I cant get to sleep to wake up. If I do, I wake up not breathing and my heart is playing ping pong. Takes me a bit to get my lungs filled back up, and then . . .well, I try to go back to sleep.

I slept one hour last night.

[kitt]

Hi,

Have you both had your catecholamines checked? They should be tested supine and then again after standing for 10-15 minutes. It measures your Noriphrinepine and Dopamine and other neurotransmitters and proteins...

If your Noriphrinepine (NE) standing is 600 or higher you are hyperadrenergic.

I mention this because those with hyper pots have particular problems with sleep. My NE is over 1400 and sleep is my biggest problem. I can't fall asleep at night and when I do can't sleep for more than 2 or 3 hours at a time. I too am "jolted' awake, (that's the exact right word that you used, thanks because I'd been searching for the right word to describe it)...

It's just a suggestion. I think a lot of people with dysautonomia have problems with sleep, so I'm not suggesting you're hyperadrenergic because you're having sleep issues, but it's definitely worth checking into if you've not already!

Best,

K

[Katybug]

I'm on my phone so have no idea how to link it, but try a search here on the forum for Alpha-Delta Sleep Syndrome. There was a paper written about it in Feb 2013 and with the help of one of our great research members, we got it posted in a thread. It specifically talks about sleep issues for pots patients.

[Dustbunni]

This is definitely why I signed up for this forum. What interesting and helpful information!

I don't believe I've had my catecholamines checked. I will definitely ask to have this test at my next doctor appointment though as I am curious. First I want to double check the endocrinologist didn't run them earlier this year, because I did have a test done there where they had to take blood multiple times after timed intervals, but I didn't have to stand. Of course, at that time standing wasn't working very well for me so maybe they didn't think I could do it. I barely managed to remain upright in my wheelchair at the time.

As for seeing doctors about my sleep issues, I admit I stopped trying a while ago. I went through a period where I was trying one after another new medication for sleep. I had very unusual reactions to many of them (such as not sleeping at all for days), and my doctor at the time was getting frustrated and started treating me like I was doing it on purpose or something. Since then I've learned I'm just VERY sensitive to drug side effects. Eventually, I found Melatonin (if it's the right brand and a small enough dose) is most helpful to get to sleep with minimum side effects, but not enough so that I take it regularly any longer. Meditation can be useful to get to sleep, but it does not help me return to sleep when I wake up early. I've basically just accepted the sleep issues, try to get as much sleep as I can, and try not to stress myself over it (we all know what extra stress does to us). That said, a better understanding of what is happening when I try to sleep could certainly open new possibilities I haven't tried yet. Thank you!

gjensen, I'm so sorry. I have an issue with my breathing as well and it just plain *****. It is one of the most difficult symptoms to deal with. My chest gets heavy feeling and each inhale/exhale feels difficult I become aware of each breath as though I'm not getting enough air. My heart will speed up, and my thinking can get foggy. The current theory is it's from weakened chest muscles causing a build up of CO2. The symptoms definitely correlate to my general strength level, as well as worsen if I do anything that specifically uses my chest/abdominal muscles more than usual (including speaking or especially singing). I find sleeping on my right side usually more helpful than sleeping sitting up like the doctors recommend - unless I'm at my worst. Sleeping flat is a complete no-no. Keeping my body temperature in check also helps. If I overheat with too many blankets over my chest/abdominal area this can increase weakness and the symptoms can worsen. In fact, my husband teases me about the tangle I get my sheet and blanket into as I usually cover my legs and then twist the sheet/blanket to cover my arms, while leaving my core area more open to the air. Hey, it works for me! LOL

Ugh, if there are any weird groupings of extra letters or anything in the above I missed, sorry. My kitten keeps dancing across my keyboard. She's super hyper at the moment.

[looneymom]

Your body needs sleep. My son has had this problem for a long time and it became very severe this last year. We tried taking calcuim, vitamin D, and a magnesium combination before bed time. This helped my oldest son but my pots son it did not help at all. Tyler was finally put on regular clonidine back in May. He fell asleep but would still wake up 3-4 times at night. Clonidine is supposed to calm norephrine levels down. Finally he was put on the extended release clonidine in August. After about 2 weeks on, he is sleeping through the night. When he had the double ear infection, he stopped sleeping through the nights for about 4 weeks. After it cleared up, he is sleeping through the nights again. I know this medication helps with pain and it was perscribed to him by a neurologist. My son also has low serotinon and dopamine levels. This medication could possibly be helping regulate these levels at night.

Rachel

[gjensen]

DustBunni, I can relate.

I cannot sleep on either side. Frustrating because that is how I want to sleep. First it was one side then both.

Most of my issues are at the sleep transition. For whatever reason I struggle starting the automatic breathing. Along with that it seams I get an esophagus spasm. I wake up not breathing, heart racing, and I cannot get relief until I can manage a swallow.

For whatever reason I cannot swallow when I wake up like this. Like something locks up. It takes me some real effort to get my lungs filled up, after the swallow. Might sound weird, but . . . . All I can do is describe how it feels.

I do wake up with these issues at other times, but most of the problem is at the beginning. My teeth chattering is also part of this. My teeth chatter when I get relaxed enough. I can have the breathing problems from being tired and relaxing as well.

I would love to get back on a reasonable sleep schedule. That would be a big step back towards some normalcy. I hate waking up and the boys are gone for the day.Some nights I just give up and stay awake so that I can see them off. I have went a few days with just a few hours of sleep.

[Dustbunni]

Gjensen, that must be a rather frightening experience to wake up to. How horrible for you! I know we don't know each other but I'm going to hug you anyway. *Big hug*

[gjensen]

Thank you very much DustBunni. I will gladly accept the hug.

I will admit that it is scary. If I understood the process better, it would not bother me as much as it does.

[imre]

So, is there anything you can do if your catacholmines are high? Also, I read just the abstract of the alpha delta sleep syndrome for CFS, and it is possible that my problem is anxiety/stress related. I've been under a lot of stress the past couple months when this all began. Thanks for the help so far guys.

[castronovo112587]

Gjensen are you on a beta blocker? If so that could be part of the problem. I was on propranolol and the same thing was happening to me in the middle of the night. I was prescribed it for headaches by a neurologist and for high bp originally before they found out it was pots. A pulmonologist told me beta blockers are known for causing breathing difficulties and my cardiologist said the propranolol is one of the older beta blockers and has more side effects. Not sure if your on beta blockers but if you are maybe its contributing to to your breathing problems at night and you may need to lower the dose or try a different one. Also I believe they are known to cause insomnia at least I know propranolol can as I could not sleep and be up for days on it.

[gjensen]

Gjensen are you on a beta blocker? If so that could be part of the problem. I was on propranolol and the same thing was happening to me in the middle of the night. I was prescribed it for headaches by a neurologist and for high bp originally before they found out it was pots. A pulmonologist told me beta blockers are known for causing breathing difficulties and my cardiologist said the propranolol is one of the older beta blockers and has more side effects. Not sure if your on beta blockers but if you are maybe its contributing to to your breathing problems at night and you may need to lower the dose or try a different one. Also I believe they are known to cause insomnia at least I know propranolol can as I could not sleep and be up for days on it.

I started on a beta blocker, and it did exaggerate my breathing problems. I dropped it. This started before the beta blocker, and has continued after. This breathing problem that I am describing here is something wrong with my system kicking in on rising CO2 levels. That is my theory anyways. I can't think of an explanation of the stuff that comes along with it. I wish it could be explained that easily. It would be easy to eliminate it.

[imre]

Rosey, I am on a beta blocker, nadalol. Did your problem go away after you dropped the beta blocker?

[lynnie22]

Well I can certainly relate to the insomnia problems! When I was on a 24 hour beta blocker, I couldn't sleep at all. It seemed to worsen my insomnia but I also know it can interfere with breathing for some people. I've had insomnia for a long time. I also have these sudden awakenings, often after two hours and have to get up, watching some television in another room and go back to bed. The doctor at Mayo thought a sedating type anti anxiety drug might be helpful but must find a 'sleep specialist' to help me with that. I do wake up at times early in AM with heart pounding, if that's what you mean, Katie. I am able to go back to sleep though. The best helps for my insomnia at least as far as falling asleep is listening to soothing music or a sleep hypnosis cd. The awakenings I haven't figured out yet.

By the way I have a high stress hormone level, just tested at 1200. Maybe the sudden awakenings are related to surges. Are you ever able to go back to sleep, Katie?

Thanks for the Alpha Delta Sleep info.

[Psalm 23]

It might be worth seeing a sleep specialist and undergoing an evaluation. I had surgery a few weeks ago which resulted in a post op referral for a sleep apnea study. I have struggled with significant sleep issues for a number of years now. While at Mayo two years ago I had a basic overnight pulse ox study done which was normal. Seeing an actual sleep specialist (pulmonologist) and having a more detailed evaluation provides much more specific information then just an overnight pulse ox though. My appointment is tomorrow. While I am certainly not wishing for another diagnosis I would like something helpful to come of this. Many with dysautonomia seem to have an associated sleep disorder for any number of reasons. It can be so frustrating, frightening and exhausting I know.

Janet

[castronovo112587]

Sir Digby , yes it did after stopping the beta blocker I haven't been short of breath unless I really exert myself due to the high hr from exerting myself and have not waken up in the middle of the night short of breath with my heart racing once. I was only on it for 6 weeks and it took a month to wean off just cut the pill in half took for a week then quarter for a week and then half of the quarter lol amazing I was able to cut it that small. I never had those issues till I started the beta blocker and then they stopped after I got off. My lungs were tested for asthma and other lung problems as well and all was fine it was from the beta blocker.

[castronovo112587]

I also sleep better now could not sleep on it

[Psalm 23]

I thought this Mayo sleep apnea link was interesting particularly as it described abrupt awakenings as a sleep apnea symptom.

http://www.mayoclinic.com/health/sleep-apnea/DS00148/DSECTION=symptoms

Of course medications such as beta blockers can cause many side effects such as sleeping issues.

Janet

[castronovo112587]

Yes sir digby my breathing problems and waking in the middle of the night catching my breath with my heart racing did stop after I stopped the beta bloker and I also sleep better too. My lungs have been checked for asthma and other problems as well and I had none.this started after I started the beta blocker and stopped after I got off. Sorry sir digby you are also who I meant to ask if you were on a betablocker.

[imre]

Thanks for the advice Rosey. I am on a beta blocker and it is long acting. My doctor has told me I could stop taking it if I wanted to. I might give weaning off a shot. Do you know what exactly it is that makes the beta blocker do this, did your doctor give you any reason?

[gjensen]

If I could actually get to sleep, I would get a sleep test. I can't get passed the transition.

Sir Digby, good luck. I know how precious sleep is.

[looneymom]

If you can have a sleep study done, it would probably be worth your time. Tyler had one done last March. He does not have sleep apnea but it did show that he was having leg tremors at night and that he was waking up almost every hour on the hour. This was helpful to know because it let his doctors know that he was not sleeping through the night. The extended release clonidine is the only thing that has brought any relief to this situation.

Rachel

[castronovo112587]

Sir digby,the Dr told me that there are selective and non selective beta blockers and that selective only block b1 receptors while non selective block both b1 and b2 receptors

receptors. B1 receptors are specific to cardiovascular while b2 are not. I was on a non selective beta blocker which is the older class of bets blockers so they have more side effects and block b2 receptors which causes vasoconstriction to the blood vessels including in your lungs and this can make it harder to breath especially if you already have somthinf like cipd or asthma(which I don't) It would be worth it to see what kind of beta blocker you are on. If its non selective see if they can switch you to selective that only does b1 blocker or try to wean off it altogether and see if it helps you. It certainly helped me I don't wake up anymore with my heart racing short of breath.

[castronovo112587]

Copd*