Night after night without sleep or light sleep.

[CallieAndToby]

So I haven't had real sleep in daysssss. And then I'll have a good night then it goes back to horrible. Sleep was one of the first things to go when I got sick as a teenager. This constant feeling of running on adrenaline doesn't help. The guanfacine I was prescribed is making the insomnia worse. Something that actually helps is saline iv's. I'm on a lot of sleep meds/downers and still doesn't help. When I did my sleep study at least a decade ago it showed extremely fragmented sleep and my mean HR was 90 at times in my sleep reached 120, this lead to me seeking a dysautonomic specialist and the beta blockers Bystolic does help but not enough. Having IC and being in constant pain certainly doesn't help. For me it definitely has something to do with the adrenaline. Does anybody have sleep problems? 

 

[TorturedSoul]

@CallieAndToby22you and I seem very similar. I actually tried to do my second sleep study last week and could not fall asleep. It happened the first time too. I just couldn't fall asleep and it's so frustrating because I NEEDED that study done. I have torturous sleep. For the longest time my biggest issue was that every time I drifted to sleep I woke up feeling like my heart stopped. And BAM then my heart would go crazy fast I would feel weak and start hyperventilation. This happens only in the transition phase. Sometimes every time I drift or sometimes just the first time. Terrible terrible. Years ago when this started they caught the episode. I was relieved thinking I would get help. They said it wasn't related to a drop in oxygen. They were bewildered. Still can't figure with why it happens but magnesium glycinate before bed seemed to control the horrific episodes. I also would wake up feeling faint or weak   Like fainting in my sleep. Throw in nightmares and my hands falling asleep every night too. Overall acetyl-l-carnitine and alpha lipoid acid (one supplement) have helped me tremendously. It has calmed something down where my lightheadedness is better. My feeling like blood rushing to abdomen and weakness is better. My sleep is a little better. I wonder if you would be willing to try it as we seem similar. I actually hosted an Easter party yesterday for my kids and felt pretty good. I'm not there yet but much better than I was and this so far has been the only supplement that I have noticed a big change with. 

[CallieAndToby]

2 hours ago, TorturedSoul said:

@CallieAndToby22you and I seem very similar. I actually tried to do my second sleep study last week and could not fall asleep. It happened the first time too. I just couldn't fall asleep and it's so frustrating because I NEEDED that study done. I have torturous sleep. For the longest time my biggest issue was that every time I drifted to sleep I woke up feeling like my heart stopped. And BAM then my heart would go crazy fast I would feel weak and start hyperventilation. This happens only in the transition phase. Sometimes every time I drift or sometimes just the first time. Terrible terrible. Years ago when this started they caught the episode. I was relieved thinking I would get help. They said it wasn't related to a drop in oxygen. They were bewildered. Still can't figure with why it happens but magnesium glycinate before bed seemed to control the horrific episodes. I also would wake up feeling faint or weak   Like fainting in my sleep. Throw in nightmares and my hands falling asleep every night too. Overall acetyl-l-carnitine and alpha lipoid acid (one supplement) have helped me tremendously. It has calmed something down where my lightheadedness is better. My feeling like blood rushing to abdomen and weakness is better. My sleep is a little better. I wonder if you would be willing to try it as we seem similar. I actually hosted an Easter party yesterday for my kids and felt pretty good. I'm not there yet but much better than I was and this so far has been the only supplement that I have noticed a big change with. 

Does seem like we have some things in common, which is not good for either of us. So my sleep study experience was a nightmare, I was lucky to fall asleep at all. I have horrible Interstitial cystitis and bladder problems related to dysautonomia and my routine at that time was go to the bathroom over and over and over till I wasn't in pain and could fall asleep, now that creates a huge problem in a sleep study. I knew one of the girls working there and she showed me how to unhook myself b/c they were tired of coming in and out!!!!!! So I finally fell asleep for 3 hours and they said there was constant fragmentation and unbelievably high heart rate during my sleep! I'd already told everyone I was running on adrenaline all the time and now they believed me so Bystolic did help. Lately though, I'm getting into a restful state but opening my eyes up at 4 am and realizing I've never fallen asleep! What in the world is going on? I will look into that supplement, I have a bunch of supplements around the house so thanks for that suggestion. I'm sorry you couldn't fall asleep, they need to do this stuff at our homes b/c there are so many variables! My uncle (who has since passed) did a sleep study and he told them he can't sleep unless the television is on so they put it on, he fell asleep, then they came in and turned it OFF and he woke up wide awake and he was mad! He's like, "why did you turn it off???" But he was diagnosed with sleep apnea, I don't have sleep apnea or restless legs and the sleep physicians here are pulmonologists not neurologists so nobody can pin point what is going on.................. I think the extreme decrease in cerebral blood flow is a massive contributor to the sleep problem, this doesn't seem to be an issue with all dysautonomia patients, maybe I'm wrong, but I actually have proof of it. When I was just 27 years old I went and saw a top neurologist at NYU (I actually read about him in a book and sent a letter I wrote) and we did a PET brain scan with contrast dye and the radiologist whom happened to be in a horrible mood paged my doctor and said, "what is wrong with this girl? her scan looks like an 85 year old with alzheimer's." Not only that I had an allergic reaction to the contrast dye and had to be put in the hospital for a day or two just to recover, never ending. So the results were hypoperfusion all over my brain and the doctors didn't know what it meant but I did get an accidental trial of ivig and daily saline iv's b/c of it which really helped but that was for 6 months and the insurance didn't want to pay any more b/c it's unbelievably expensive, which btw with your diagnosis of small fiber neuropathy you could get ivig but you need to do a lot of research as with everything, there are side effects and I think b/c it's made from human blood donors and the covid it's in very short supply and your doctor will have to fight insurance, but for me a life saver that is unattainable. So now I know what the results mean based off an ME website: "Cerebral hypoperfusion is inadequate blood flow to the brain. Chronic cerebral hypoperfusion is linked to neurocognitive disorders." 

 

[TorturedSoul]

That's exactly what I think is happening. This past year I've had horrific feeling of lightheadedness. A very constricting feeling like someone is squeezing the vessels in my neck and blood isn't flowing. I know I have chronic issues with that and I think I always have. I think those episodes as I drift to sleep happen Bc blood flow isn't getting to my brain and my body wakes in a panic. I never did a test like that but they did MRA of head and neck and didn't find anything. I definitely have problems with blood flow to my brain. I think I always have but now it's just getting progressively worse. The acetyl l carnitine plus alpha lipoic acid supplement is the only thing that has given me some type of relief. Actually some days I really feel like it's a HUGE help. Other days I feel a slight feeling of being woozy but overall nothing like the torture I experienced. I also want to try arginine as it increases blood flow as well. Did you feel like the IVIG made you feel somewhat normal? My neurologist is very slow in getting back to me about how to move forward with the small fiber neuropathy diagnosis. It's very frustrating. Are they alarmed by the extreme hypoperfusion in your brain? What other suggestions were made? Isn't something that will shorten our lifespan? Can people live a long life with chronic hypoperfusion? Do you have relief when you lay down? Ironically the extreme lightheadedness would get better after an hour or so of laying down but then why would I wake up with those attacks as if something was going on with the blood flow? Shouldn't laying down bring more blood the brain?  This is all so confusing and really just depressing honestly. I wish I was normal. My daughter and son are showing some signs and that's what kills me the most. Genetic? Yet I'm the only one in my family that is struggling so much. Some members have some minor symptoms but NOTHING like me 

[TorturedSoul]

https://www.lifeextension.com/magazine/2014/1/outwitting-our-aging-brain
 

interesting article on ways to increase cerebral profusion naturally 

[RecipeForDisaster]

I have awful sleep, sleep apnea (CPAP has helped but not nearly enough), and cerebral hypoperfusion on Doppler. Lots of other crap too, but sleep is one of my worst problems and also gives me a horribly miserable and sick day afterwards if I get less than 6 hours or so. That’s pretty rare. IV fluids help with this too. I think I’ll do it tomorrow.

[merkat30]

What Is sleep 😭😭 I have hyper pots mast cell activation syndrome seizures and not fully diagnosed erthymilagia nightvtimes are horridous I also have the palpitations heart jump on falling to sleep it scare me it horrible .pain on night is horrible .

[yogini]

Perhaps a doctor could work with you to figure out why your heart rate is so high. 90-120 lying down seems quite high.  I have had this very rarely but can’t imagine every day..If you are diagnosed with dysautonomia I am not sure adrenaline is the cause of it.  For example if your blood pressure is low your heart might be beating faster to try and maintain it. I suspect you will sleep much better when that is sorted out.

[cmep37]

I take Trazodone for sleep issues (I take 150mg every evening) and it has helped me a lot.  Pre-Trazodone I wouldn't sleep until 3 or 4 am and then wake every 30-60 minutes with my heart racing and it would take me another 30-60 minutes to get back to sleep.  Now if I take Trazodone by 7pm, I get to sleep around 1am, wake up each hour for the first couple of hours but get back to sleep within 15 minutes and then actually sleep for 3-4 hours without interruption!  

[CallieAndToby]

On 4/2/2021 at 2:23 PM, merkat30 said:

What Is sleep 😭😭 I have hyper pots mast cell activation syndrome seizures and not fully diagnosed erthymilagia nightvtimes are horridous I also have the palpitations heart jump on falling to sleep it scare me it horrible .pain on night is horrible .

I'm so sorry, I definitely can't tell you what sleep is, I think I remember but I'm not sure!!?? 

On 4/2/2021 at 9:27 PM, yogini said:

Perhaps a doctor could work with you to figure out why your heart rate is so high. 90-120 lying down seems quite high.  I have had this very rarely but can’t imagine every day..If you are diagnosed with dysautonomia I am not sure adrenaline is the cause of it.  For example if your blood pressure is low your heart might be beating faster to try and maintain it. I suspect you will sleep much better when that is sorted out.

Thanks. Yea this was pre dysautonomia diagnosis but it lead me to seeing cardiologists. The beta blocker has helped with this but like you said, I need a lot more help which I'm working on attaining, and I think the proper help will lead to sleep. I wish my bladder would disappear though, the constant pain and feelings of urgency are very disruptive. 

 

On 4/5/2021 at 8:16 AM, cmep37 said:

I take Trazodone for sleep issues (I take 150mg every evening) and it has helped me a lot.  Pre-Trazodone I wouldn't sleep until 3 or 4 am and then wake every 30-60 minutes with my heart racing and it would take me another 30-60 minutes to get back to sleep.  Now if I take Trazodone by 7pm, I get to sleep around 1am, wake up each hour for the first couple of hours but get back to sleep within 15 minutes and then actually sleep for 3-4 hours without interruption!  

Trazodone is a good medication for sleep, I take some at night. 

[Pistol]

19 minutes ago, CallieAndToby22 said:

I wish my bladder would disappear though, the constant pain and feelings of urgency are very disruptive. 

 

@CallieAndToby22 - has your urologist ever considered an indwelling  urinary catheter to help with your symptoms?

[CallieAndToby]

8 hours ago, Pistol said:

@CallieAndToby22 - has your urologist ever considered an indwelling  urinary catheter to help with your symptoms?

I'm going to look it up. He kind of just went through all the different treatments like botox and interstim...etc. Edit: Ah I have seen different people at the urology place with that but it was never discussed as an option for me. Thanks, something to bring up. 

Edited April 6, 2021 by CallieAndToby22
mistaken text

[yogini]

On 4/6/2021 at 6:37 AM, CallieAndToby22 said:

I'm so sorry, I definitely can't tell you what sleep is, I think I remember but I'm not sure!!?? 

Thanks. Yea this was pre dysautonomia diagnosis but it lead me to seeing cardiologists. The beta blocker has helped with this but like you said, I need a lot more help which I'm working on attaining, and I think the proper help will lead to sleep. I wish my bladder would disappear though, the constant pain and feelings of urgency are very disruptive. 

 

Trazodone is a good medication for sleep, I take some at night. 

You may want to discuss with your doctor the time of day you take the beta blocker. For example if you take in am, maybe take it at night (your HR will be lower)  or if you take at night maybe it's lowering your BP too much - switch to day. 

[CDNPortGrl]

Oh boy, this is disheartening to read. I haven’t slept in a month since POTS kicked in. I usually sleep every third day ‘ok’ and the other nights are a broken 3 maybe 4 hours if I’m lucky. I assumed this would pass but it’s not looking so hot judging by what you wrote. 
 

Getting to sleep is not too hard as I wear the Cefaly device to calm my brain, I listen to guided meditation and do the breathing thing. Unfortunately I wake on the dot at 2 am and it’s unlikely I sleep again until 6 am. I have to figure that we need to get the meds figured out to control the erratic heart...,  

Btw, in my last hospital visit I expressed concern about peeing 9 times in an hour and a half. It turns out I had a UTI. Perhaps at times it’s a dysautonomia issue but perhaps not always.