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  1. Today
  2. Ever since I became ill with dysautonomia (ME/CFS?) in 2012, I cannot sleep lying flat or I'll awaken panicked at sometime during the night feeling a great need to sit up and breath deep for a large intake of air. I feel my heart is racing although I don't know if it really is. A sleep study showed I have only mild OSA (AHI 11) and the percent time below 90% SpO2 is .2% . Minimum SpO2 : 87.3%. I've researched and found that OSA can make a person need to sleep upright but I think that's to avoid the heartburn pain, not so much b/c of lack of Oxygen (but maybe I'm mistaken) Regardless, my numbers aren't that bad so I don't understand why I can't lay flat to sleep. I feel like I'm hypoxic but the sleep study shows I'm not. I now wear a custom made OSA dental appliance which may have helped my OSA somewhat but has made no difference to the lying supine issue ( I've tried MANY masks and Cpap machines thinking maybe I've got worse apnea than the study showed but all of them cause air to go into my stomach (likely due to weak lower esophageal sphincter (GERD) ) so am now thinking maybe I should try O2 machine but again, do my numbers warrant it? I now have an adjustable bed which is a God send but unfortunately, my husband and I must now sleep separately b/c he's not interested in the bed going up and down like a yo-yo throughout the night.(if its up too long, my low back hurts). My night symptoms are similar to Congestive Heart Failure but when I'm not in a flare up (POTS/ PEM), I'm quite active so I don't have CHF. Does anyone else have trouble lying flat and if so, what do you about it? And how is it related to the dysautonomia?
  3. Yesterday
  4. Yup. Here too. Also seems to depend more on what I eat. The drier it is and harder to swallow I might get some skips. More likely if I try to move around shortly after or while chewing. The heart rate increase more often seems to occur when eating something I probably shouldn't (gluten, sugar).
  5. This happens to me every single time I eat. It was actually one of my first symptoms I noticed. Its really frustrating and annoying. It even occurs when I start chewing without swallowing. One of the weird things that I notice however is that my breathing becomes really slow and irregular to the point where it feels like I'm not getting enough air if I continue to eat. I will have to stop to let everything normalize. My hr gets well over 100 sometimes and immediately when stopping from eating it slowly goes back down to resting hr. I'm almost positive it has something to do with the vagus nerve as well.
  6. The odd thing about this is I can break out into drenching sweats just having simple conversations initiated on the phone or if someone comes to the door. Lots of seemingly simple stuff like that. However, in actual stress situations or emergencies...I'm generally fine, actually better than my usual physical state, at least temporarily. For example, almost being sideswiped by another car, having to rush my dog to the ER after a deep cut last year, a few days ago he charged out the door and scared the h*** out of the Amazon delivery guy who started screaming at the top of his lungs. All of those things, it seems I momentarily forget my condition and am able to get through. Having to talk to someone I don't know on the phone or a slight argument with a family member....catastrophic physical disaster. I have no idea why, but would dare suggest the anticipation of a disastrous event might be worse for our brains than an actual emergency itself. That's the only way I can comprehend it, but it's not like I've been able to do anything about it.
  7. Gastroparesis causes nausea. Gastroparesis often also causes pernicious anemia because of absorption issues. Pernicious anemia will make you sleep 22 hours a day and spend the other 2 in a fog. Have they checked your B12 in your blood? The worst time in my life was before I was treated for both of those conditions. I only have vague memories of those years.
  8. for the past 3 weeks i’ve been exhausted no matter how much i sleep (sleeping for 8 hours, and still taking 6 hour naps), for the past week i’ve had a migraine and have been feeling very nauseous anytime i eat anything. my body is also very achy. i was diagnosed with gastroparesis in the spring and pots 2 years ago. i went to my pediatrician today and she thinks it’s a sinus infection. i’m just not sure what to do about the nausea from eating. i’m away at college and i have finals coming up soon, so i’m trying to feel better for them if anyone has any advice. thanks
  9. Last week
  10. I can definitely relate to this. Situations that used to be mildly upsetting now immediately throw my body into crisis mode. I can no longer indulge in a lot of things I used to enjoy either, because they overwhelm me completely (physically and mentally).
  11. I no longer consider it normal. And yes, there is some pain in my hands at it's most pronounced. I don't think I've ever been able to tie it to a blood pressure issue though. I'm kind of the opposite of most POTS types anyway, where my blood pressure often increases the more upright I am and drops when lying down.
  12. Thank you. Everything is a battle here. I have jotted down the details of the few that are in the UK and will look into them. Many health authorities deny out of area referrals which is why we scratch around for private consultants. Ive been privately on 2 occasions and its not good at all. spasms of your coronary vessels must be terrifying. I dont know if thats what I’m getting but it sounds similar. Very best wishes. C x
  13. From what many of us here have experienced - yes, it is definitely worth pushing for a diagnosis if you suspect dysautonomia. But for most of us this is a long, frustrating and sometimes infuriating process and you should definitely see a specialist in the field. On our physicians listing ( you can find it under the physicians tab ) has specialists in the UK listed, maybe there is someone you would feel comfortable seeing.
  14. @Jwarrior77 - have you brought this up to your doctor? He may want to do some blood tests, and there are medications that help. I believe that excessive vasodilation could cause inadequate circulation to your organs due to low BP and if this happens often could be damaging. Your doctor should be able to determine if you need to be treated.
  15. I can’t work out how to reply to you individually but thank you for your replies. It seems that Dysautonomia is a definite possible explanation for this horrible process that I keep experiencing. From what I have gleaned, there is little in the way of treatment - it’s awareness and timely self-management. I worry mostly about my heart because there’s no doubt it struggles during these events and hypothermia is reputed to put it in a very delicate state. I keep meaning to take my temperature but am generally too ill to be able to think coherently - I literally crawl into a hot bath (I know, probably not a good idea) then in to bed. I’m trialling fluoxetine for the Raynauds and I’d hoped it would work for these OTT cold episodes but it appears not. Given the NHS constraints and poor private medicine in this country, is there anything to be gained by pushing for a diagnosis? I’m u dear rheumatology (a dept that is nationally splitting at the seams), respiratory for my chronic small airways disease and ENT for laryngospasm. many thanks, Clare.x
  16. @MTRJ75 I would have considered it normal only that my veins have never popped out this dramatically before and I never had my arm veins pop out at all before. It came on so suddenly just like all the other symptoms. When it happens my hands become extremely warm and mottled because of all the excess blood flowing to it. Back in the summer they would actually hurt slightly because of all the excess pressure. It's almost as if my body shunts all my blood to my peripheries even if I'm laying down. @Pistol Sometimes I do and sometimes I don't which is the odd thing. I would say my heart rate is pretty stable only if I don't stand up when it occurs and my blood pressure is usually low.
  17. Yes to the yawning and yes again to the cold feet and hands. The yawning is weird. I also get quite tired/sleepy after.
  18. @Jwarrior77 - do you feel faint when this happens? Does your HR go up or your BP drop?
  19. @Clareb67 - I have hyperadrenergic POTS, Raynaud's and Prinz-metal angina, all caused by excessive vasoconstriction. When I am in a bad flare I start to shiver terribly, my teeth chatter, I start to yawn ( an attempt of the body to increase oxygen intake ) and my hands and feet become very cold. I also often have severe chest pain caused by spasms of the coronary vessels. I am not sure if this is what you are experiencing but in my case it is from dysautonomia.
  20. I've had similar experiences, particularly "simultaneously shivering with cold whilst also having hot flashes". They are unnerving, to say the least. A medical grade heating pad on my chest or belly generally helps limit both the duration and intensity of the episodes. I only experience heat issues when higher temps are accompanied by higher (on average greater than 50%) humidity levels. Curiously, I quite enjoy and do not react badly at all to higher temps when the relative humidity is 40% or lower. Btw, I have been diagnosed with (and am highly symptomatic of) both POTS and a second, still mysterious form of Dysautonomia (that I shall not elaborate on here as how it affects me is not related to what you've experienced).
  21. Uhm...that's exactly what mine have looked like forever. Veins popping out and very pronounced all over backs of my hands, up my arms, sometimes can even see them in the feet. When taking blood, I was always told "you have great veins". Come to think of it, only one doctor (a chiropractor/homeopath) ever really mentioned it, but didn't say it meant anything. I do feel my hands tighten up often and the veins are often more pronounced when that happens. Never knew it was a dysautonomia thing. What can you really do about it though?
  22. Hello everyone. I’m new here, I’m 52, I live in the uk and I have a long history of moderate lupus/UCTD and Raynauds. In August this year, I had an episode of my body temperature falling very low during a family barbecue. My body made no attempt at shivering but instead went into the most agonising spasm which lasted hours. I struggled to breathe during all of this as my chest was rigid and my heart rate was extreme fast. I felt ill enough to feel that I needed a doctor but managed to recover unaided although it took several hours and then days afterwards until I felt normal again. This happened twice more during a fortnight then nothing since. . . . Until last weekend when, despite keeping active and walking the dog whilst well wrapped up, the cold took over and the same thing happened again. I noticed that, during the latter part of the thawing out process (hours later), I was simultaneously shivering with cold whilst also having hot flashes. Once again, my heart was going beserk. I’ve had suggestions of Dysautonomia from friends but I don’t get heat intolerance. This isn’t simple chilling, it’s causing widespread systemic problems which are not dissimilar to hypothermia as suggested by rheumatology. I’m pretty scared, can anyone relate or advise? many thanks, Clare
  23. During the middle of summer a couple of months after getting sick I started getting abnormal vein dilation particularly in my arms, hands, and feet. This would mainly occur if I stood up and walked around as the blood would pool in my extremeties. It would come and go during that time. However now it seems to happen all the time even without standing up. If I get too warm or hot they will dilate. If I get emotional about something they will dilate. If I get anxious it will do it sometimes. And of course it will happen and I don't even know what triggered it. I'm at a loss as to what's causing it. Is it just my ANS malfunctioning and causing the vessels not to constrict properly? Is there some sort of chemical or hormone in my blood stream causing the veins to dilate? Have my veins suddenly for no reason become too overly stretchy? If I raise my hand up you can see the vessels collapse and the blood fall back due to the force of gravity. I know people have problems with this but in my case it seems too excessive. I'll attach pictures that I took earlier back in the summer. Warning as they are pretty gross to look at.
  24. Same from the exhaust in my car. Then a water heater in a work location. Currently working on recovery options, nothing fully successful yet but... Have had a few intermittent mornings where Pots symptoms are completely gone. Lying HR is high 60's and 83 upon standing. Tested over and over again, different HR monitors too cause I couldn't believe it. I'd be lucky to have a HR under the 90's before. Research is limited into low dose CO poisoning but most research shows it takes a long time to recover. I'm not patient so, tried IV vitamins from the homeopath to no avail, rented an altitude simulation tent, no results. Latest trial is spin classes, just starting but the PEM isn't there like it used to be. I figure since the CO was starving my body of oxygen I'll force my body to do the opposite. Will update if I can get into a full recovery.
  25. Dear @tmrj21706 - does he have anxiety or is it adrenaline related? I have hyperPOTS and when my adrenaline spikes and I go into fight-or-flight response it looks like anxiety but is actually caused by POTS. I do have a prescription for Ativan to use when needed but it has never been helpful in those flares. In my case rest and withdrawing from all stimulation can help for these episodes. However - I have found that preventing them is better than trying to stop them, meaning I try not to become overstimulated in the first place. And - of course - my POTS is somewhat improved with medications and other treatments. -- Do you have a specialist that treats your son? Have you asked him/her what else to try? The following link deals with teens, POTS and anxiety. You may find it helpful. I wish you both the very best - hang in there!!!! https://www.potsuk.org/managing_anxiety
  26. Yes, they have in me. I used to get tons of PVC's and if they came in bunches or every other beat and this lastet for a long time I would get dizzy and lightheaded. Fortunately mine are controlled with medication and I rarely get them anymore.
  27. @jeff_jefferson2 - IMO yes it can. As a former nurse I have witnessed many episodes like that in others and none of them were diagnosed with POTS. The combination of fear or excitement and getting up from lying flat for a long time can cause the orthostatic process to take longer and cause syncope. I have POTS and NCS, the latter causing syncopal episodes just as you described but it can happen to normal people as well.
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