Chuske Posted September 9, 2015 Report Share Posted September 9, 2015 Hi,I was formally diagnosed with POTS via tilt in January but suspected I had POTS for 5 years now. In the last year I've started having a lot of scary and extremem symptoms just as I'm about to fall asleep which neither my GP nor my specialist have been much help with.Currently when I first go to sleep at night I can get just at the point of falling asleep a variety of sudden severe but brief symptoms that wake me up again. Some nights this can keep hapening over and over preventing sleep.The sensations I get are sometimes a severe chest pain or chest pressure or can be and electric jolt sensation, this can be located either in centre of the chest or in the solar plexus. The sensation is very brief but very severe and often so bad I awaken with a brief scream or jolt. The only thing that can stop this on the bad night is sleep medication (half of a 3.75mg Zopiclone tablet will do it). I've tried every relaxing therapy under the sun from meditation before bed, breathing exercises to warm baths and have tried TRE, EFT etc in cse it was an emotional issue and none have helped.I'm wondering what I can do about this and whether it is a dysautonomic thing or whether I have some other problem such as a sleep disorder, neurological problem etcHas anyone else had anything even remotely like this? If so do did anything help you?ThanksJon Quote Link to comment Share on other sites More sharing options...
angelloz Posted September 9, 2015 Report Share Posted September 9, 2015 Hello,Sorry you are having such a difficult time. I haven't had this in awhile but I would have a similar problem..just as my body would finally relax I would experience a JOLT.I did not have chest pain at that time..just other times. It felt like my body couldn't take over the things it does automatically when you fall asleep...breathing etc..,so it would jolt me so I could consciously do so. I know that sounds odd but even during the day I felt like I had lost the ability to breathe automatically. Falling asleep is much better now, 6 years in. It seems the body has to almost relearn so many things. Hang in there and keep bugging the doctors!!! Quote Link to comment Share on other sites More sharing options...
kellygirl Posted September 9, 2015 Report Share Posted September 9, 2015 Hello,I also experience symptoms when I am falling out into sleep at night, especially cardiac. It is usually during this time that I will feel palpitations or like my heart speeds up. I have had my loop recorder in for under a week and the doctor has already called to tell me that I am experiencing PSVT during sleep. For right now I cannot do anything about it unless I go into irregular rhythym because my bp is too low to take beta blockers. I also experience not knowing how to breathe. It feels like my body forgets how to breathe and I have to consciously take over by deep breathing.. I have also experienced the JOLT or release of adrenaline while drifting off. I have mentioned these things to my cardiologist and she has brushed them off, but when I meet with the EP next week I will bring these symptoms up to him. I definately think they are related to autonomic dysfunction.... what else could they be? Quote Link to comment Share on other sites More sharing options...
statesof Posted September 10, 2015 Report Share Posted September 10, 2015 When I overdo it physically I would notice that when sleeping at night I could wake up and just feel that generalized "bad" feeling in my body/ chest, kinda felt like I was dying or was just going to stop breathing, but that never happened. And when I go to fall asleep I've noticed I can get this quick onset of suddenly feeling vertigo which jolts me awake. Quote Link to comment Share on other sites More sharing options...
Katybug Posted September 10, 2015 Report Share Posted September 10, 2015 Part of what you are describing may be sleep myoclonus which my neuro tells me is a common complaint he gets from POTSies:http://www.ninds.nih.gov/disorders/myoclonus/detail_myoclonus.htm Quote Link to comment Share on other sites More sharing options...
valiz Posted September 11, 2015 Report Share Posted September 11, 2015 I too, had many nights of jerks/jolts when relaxing and trying to go to sleep. Besides the jerks I would make an involuntary loud groan like noise. I would startle my husband and my mini dachshund. It was so hard to sleep anyway and with this going on it made sleep almost impossible. I haven't been on this site for some time because I have been doing so much better. I started on Northera (Droxadopa) in June. It has completely stopped the jerks along with helping many more symptoms. I started out with a diagnosis from Johns Hopkins of POTS and NMH. It has now progressed to Pure Autonomic Failure. I believe 15% or more POTS patients do progress to PAF, is what I have read in articles written by autonomic specialists. Praying all of you with this symptom will find something to help. liz Quote Link to comment Share on other sites More sharing options...
little_blue_jay Posted September 11, 2015 Report Share Posted September 11, 2015 kinda felt like I was dying or was just going to stop breathing, but that never happened. And when I go to fall asleep I've noticed I can get this quick onset of suddenly feeling vertigo which jolts me awake.I've had both of those sensations and it always scared the blazes outta me! I hate them! Especially the feeling like I'm gonna stop breathing, I hate to be afraid to fall asleep! Some nights I'm just so tired but I can kinda sense when I'm going to have one of those nights where my breathing feels on the verge of stopping just as I'm falling asleep and then it takes me hours to fall asleep from it! It never wakes me up from sleep so I don't think it's sleep apnea (tried to do sleep studies twice but couldn't sleep in a strange room) but it is so scary!!! I hate the vertigo feeling too. But then again I do have something called peripheral vestibulopathy which affects my balance so at least I have a good explanation for that one! I too, had many nights of jerks/jolts when relaxing and trying to go to sleep. Besides the jerks I would make an involuntary loud groan like noise. I would startle my husband and my mini dachshund. Same here! I had read about something called a "hypnic jerk" a long time ago, and thought it was a normal thing when you're about to fall asleep? It does freak me out though. I too do the loud groan noise as well! I've woken myself up with it just as I was on the verge of sleep. I'd have thought I only imagined making a groaning noise except both of my cats lifted up their heads and were looking at me all startled out of their sleep Quote Link to comment Share on other sites More sharing options...
Ckitz Posted September 21, 2015 Report Share Posted September 21, 2015 I deal with Miclonic jerks also. They can be quite violent at times. It can be in my chest, shoulders, neck and sometimes in my throat causing me to make a verbal noise. Sometimes it is just a couple jerks...other times, on and off all night. I find that strength exercising can cause it to be worse. Swimming is the best thing for me. Quote Link to comment Share on other sites More sharing options...
Lindz Posted October 15, 2015 Report Share Posted October 15, 2015 Me too Chuske - they are called repetitive sleep onset centrals. You described then perfectly. They can be found in healthy persons too. They are killing me. I had two nights this week of entirely sleepless nights. Very scary. Going to go to sleep neuro at end of month. I also have a lot of other nerve symptoms so something is totally amiss with me. Quote Link to comment Share on other sites More sharing options...
gjensen Posted October 15, 2015 Report Share Posted October 15, 2015 If it is any comfort, I had many of these issues earlier in my illness. I do not now. This has gotten better. Rarely will I get a mild relapse, briefly. Quote Link to comment Share on other sites More sharing options...
Chuske Posted October 23, 2015 Author Report Share Posted October 23, 2015 Thank you everyone for posting here and sorry it took me a long time to reply. I recetly lost my Gran and had to manage my energy for the 4 hour journey up to mums for the funeral and then spent a bit of time up there helping out and then travelling back, hence my absence from this thread.gjenson any idea what helped with this or did it resolve by itself?Lindz I don't notice any breathing issues at all, is that still consist with repetitive sleep onset centrals?valiz interesting your doctor found a different diagnosis and treatment that workedI find there is both a stress and physical activity link with this but its not totally consistent Quote Link to comment Share on other sites More sharing options...
jared Posted October 24, 2015 Report Share Posted October 24, 2015 Like gjensen I had this intensely for about a year or so, but increasingly it is becoming less frequent. For me at least what seems to help is learning how to pace myself during the day and make sure I get 30-45 minutes lying down in the middle of the day. And (and this was the hardest as I was a night owl for many years) learning to go to sleep for the night before I was exhausted. In my case, at least, I have learned that a recurrence of the electric shocks and cardiac symptoms while falling asleep means I did not expend my spoons efficiently during the day and I try and make adjustments the following day. Quote Link to comment Share on other sites More sharing options...
Ah93 Posted January 9, 2019 Report Share Posted January 9, 2019 I'm suffering from exactly the same thing Previously diagnosed with POTS syndrome and all these symptoms exactly the way you've described it have started happening to me ever since I had an electrophysiology study done. Not sure if it was the invasive procedure that has caused this or the synthetic adrenaline they inject to increase the heart rate during the test.. just hope this stops but it's been 3 months and no sign of it stopping. I'm also taking zoploclone which is the only thing that seems to work but it's given me digestive problems ontop of what I already had 😕 Quote Link to comment Share on other sites More sharing options...
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