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Struggling to sleep - advice?


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Hello, everyone! I'm new here. I just got diagnosed with POTS back in January, but I've probably been dealing with it since at least 2019. Things took a turn for the worst when I finally got my diagnosis, and I've been barely able to walk around my house and occasionally run errands. I'm already on a beta blocker (propranolol), and it's definitely helping. Without it, I would be bedridden. However, I can definitely tell when it wears off. I've tried my best to integrate other changes to manage my symptoms, but I was already dealing with other disabilities before my POTS got 1000x worse. So, it's been hard.

Now, it's been making it impossible for me to sleep. Seriously, I'm writing this on less than a full hour of sleep in the last 36 hours. I feel exhausted, but it doesn't matter. I either can't fall asleep, or I can't stay asleep. I get woken up by an elevated heartrate or some other POTS symptom. I've always had issues falling asleep (though not nearly to this extent). But ever since I was a kid, I was capable of sleeping through the apocalypse after I actually fell asleep...until now, obviously. So this is completely abnormal for me.

As you can imagine, the lack of rest is exacerbating my already pretty severe symptoms, so I would greatly appreciate any advice that y'all might have!

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Hello @starshine - welcome to this forum! - Yes, insomnia is unfortunately a common problem in untreated POTS. It seems to happen due to adrenaline levels not dropping to accommodate REM sleep, as it normally should happen. That is why you wake up with racing heart etc. For me this was a problem for years, and I did not find relief until I had to become disabled and also had found proper medication regimen. What sets insomnia off for me is overdoing things and becoming too stimulated, whether this is by exercise or mental or emotional stimulation. I find that every time I push myself to do more than I know my body can take I pay with insomnia and bedrest. So finding a healthy balance of what you can do ( rest and activity carefully balanced to your personal abilities ) and trying to find a healthy routine were a necessity for me. Only once I had to stop working and was able learn what that looks like for me did I find relief. 

For me this involves a lot of rest but also exercise ( rowing machine and mild aerobic exercises as well as household chores ), having the same daily routine ( up at 5, to bed at 9 ) and - MOST IMPORTANT!!!! - stopping any activity as soon as I find it is getting too much. This may seem unrealistic to you but it is what needs to be done for me in order to be able to stay on top of my symptoms. 

When I am overstimulated and normally would not be able to sleep I take a low dose of Lorazepam, this helps me to go to sleep on those nights. But due to it's addictive properties this is only for really bad days, I use it maybe twice a week. 

Many members on this forum are suffering from insomnia and try different methods like no electronics in the evening, no heavy meals after 6pm, light and noise cancelling devices etc. Some people take melatonin or herbal teas before bed. You might search the forum for some posts about this subject, there have been many posts that might be helpful to you. I am so sorry you are having this very difficult to live with symptoms, but know that it can be overcome. And talk to your doctor about it. When we don;t sleep our symptoms get much worse, b/c we are in constant stress mode. 

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3 hours ago, starshine said:

Hello, everyone! I'm new here. I just got diagnosed with POTS back in January, but I've probably been dealing with it since at least 2019. Things took a turn for the worst when I finally got my diagnosis, and I've been barely able to walk around my house and occasionally run errands. I'm already on a beta blocker (propranolol), and it's definitely helping. Without it, I would be bedridden. However, I can definitely tell when it wears off. I've tried my best to integrate other changes to manage my symptoms, but I was already dealing with other disabilities before my POTS got 1000x worse. So, it's been hard.

Now, it's been making it impossible for me to sleep. Seriously, I'm writing this on less than a full hour of sleep in the last 36 hours. I feel exhausted, but it doesn't matter. I either can't fall asleep, or I can't stay asleep. I get woken up by an elevated heartrate or some other POTS symptom. I've always had issues falling asleep (though not nearly to this extent). But ever since I was a kid, I was capable of sleeping through the apocalypse after I actually fell asleep...until now, obviously. So this is completely abnormal for me.

As you can imagine, the lack of rest is exacerbating my already pretty severe symptoms, so I would greatly appreciate any advice that y'all might have!

I'm having the same problem. Haven't slept much in 2 weeks and feel like I'm constantly running on adrenaline. I have to go to a mayo in Jax appt in 10 days guys and I'm not sleeping or resting and I crashed today after filling out one form. Any suggestions? They don't feel like they can reschedule. My biggest issue is I don't feel sleepy at night but I've taken melatonin and a slew of medications for years. 

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I have had insomnia during flare ups, and also I generally have insomnia from time to time that has worsened into my 40s.

I found that regular bed time, especially regular time of getting up/out of bed, is essential.  I can sleep in one day until 830 AM and the next evening I am wide awake and cannot sleep.  

I have also found the method of sleep restriction (which extends beyond just getting out of bed at the same time each AM) helps when I get stuck in a rut of poor sleep.  You can find information about this elsewhere, but basically the idea is that you purposely stay up and out of bed and slowly increase the amount of time in bed (still getting up at same time each AM).  It has worked very well for me to get me back on track to more normal sleep.

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7 hours ago, Pistol said:

Hello @starshine - welcome to this forum! - Yes, insomnia is unfortunately a common problem in untreated POTS. It seems to happen due to adrenaline levels not dropping to accommodate REM sleep, as it normally should happen. That is why you wake up with racing heart etc. For me this was a problem for years, and I did not find relief until I had to become disabled and also had found proper medication regimen. What sets insomnia off for me is overdoing things and becoming too stimulated, whether this is by exercise or mental or emotional stimulation. I find that every time I push myself to do more than I know my body can take I pay with insomnia and bedrest. So finding a healthy balance of what you can do ( rest and activity carefully balanced to your personal abilities ) and trying to find a healthy routine were a necessity for me. Only once I had to stop working and was able learn what that looks like for me did I find relief. 

For me this involves a lot of rest but also exercise ( rowing machine and mild aerobic exercises as well as household chores ), having the same daily routine ( up at 5, to bed at 9 ) and - MOST IMPORTANT!!!! - stopping any activity as soon as I find it is getting too much. This may seem unrealistic to you but it is what needs to be done for me in order to be able to stay on top of my symptoms. 

When I am overstimulated and normally would not be able to sleep I take a low dose of Lorazepam, this helps me to go to sleep on those nights. But due to it's addictive properties this is only for really bad days, I use it maybe twice a week. 

Many members on this forum are suffering from insomnia and try different methods like no electronics in the evening, no heavy meals after 6pm, light and noise cancelling devices etc. Some people take melatonin or herbal teas before bed. You might search the forum for some posts about this subject, there have been many posts that might be helpful to you. I am so sorry you are having this very difficult to live with symptoms, but know that it can be overcome. And talk to your doctor about it. When we don;t sleep our symptoms get much worse, b/c we are in constant stress mode. 

This is great advice, thanks. And it does explain why I'm in a bad rut. There have been some major emotional challenges in my life and situations where I've been pushing myself to the brink which leads to more and more adrenaline and I think you're right that that in itself prevents sleep. I went to the dentist a week ago and they didn't even have reclining chairs and the feet didn't lift and it was like 2 hours of being upright and near syncope and I crashed bad after that. Sigh. 

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2 hours ago, starshine said:

Thankfully I did finally get some sleep last night, at least.

👍!!

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May I ask if it’s safe to wear compression garments at night, or does that depend on the individual? I’ve considered trying this because I often wake up with leg pain but I don’t know if it would be of any use for other symptoms (or safe).
 

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@Bobannon your should check with your Dr about wearing compression hose at night but I was told not to. 
 

The things that help me sleep and I didn’t sleep for more than a few hours per night for the first 18 months after I got sick are mitrazipine, 1/4 15mg tablet and LDN. I tried literally every sleep aide there is and an extended release alpha blocker helps to stop adrenaline surges. Recently I have had success with listening to bedtime story podcasts. It seems that I am like one of Pavlov’s dogs, I turn it on and out I go. 
 

All I know is that I feel so much better on nights I get a good nights sleep. I still have a couple of days a week where I don’t and it’s worse with a flare. 

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