**update**Oct 2024 I recently have been looking g up certain symptoms and getting more clues. I have yet to talk to a doctor. I hope I can make an appointment tomorrow. I think I might have this pots also known as dysautonomia. I encourage anyone with some of these symptoms to look it up. It can affect stress, fibromyalgia, anxiety attacks. I'm not trying to alarm anyone and I'm not a doctor, but I may have this and I will be seeing a doctor as soon as possible and I'll update on what they said. Please don't freak out over this post. I'm just trying to give a heads up, because I think this swimming pool incident might be a symptom.
July 2024 Mine mostly happens when I lay down, but I feel I can no longer carry my body around. It's all very strange, because I run, but I swam a couple days ago, well waded, and was motion sick and my legs almost buckled when getting out. I'm afraid they will tell me I can't go anymore, because I'm a liability.
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swimming is the only exercise I can do as I also have postural hypotension making in a five minute walk a liability, but yes even though I am a good and regular swimmer (5x a week) I sometimes get that odd feeling like I am suddenly in a very heavy wavy sea! One of the areas I often get fibro pain in is my sternum like an elephant, ok a small one, is sitting on it, sometimes between the ribs too… fortunately I can tell it’s the muscles etc and not heart. I am a great believer in trying to exercise, and keep convincing myself it must be doing me some good!
I wonder sometimes if it's something I've eaten, like greasy food. Last night I decided to take some Claritin and that helped and I've been taking a pump of oxygen from one of those canisters you buy at a sports store.Do you ever think about sleeping in a chair or something that doesn't lay all the way down?
It's a scary feeling. Sometimes I think I'm gonna die in my sleep. My chest gets heavy and so hard to breathe. I think sometimes I stop breathing a long time when I sleep and then gasp.
My father had that and then he got dementia. I wonder if that will happen to me. For him it started in his 50s. I'm 46.
What kind of doctor do I see. So far no one believes me. It's been more than a decade.
Have you thought about getting a test for sleep apnoea…the thinking you have stopped breathing might be a link. During Covid, when GPs doing very little I arranged a private 2 day test thru the charity Hope 2 Sleep, so did it within a month or two of applying, but you could get your Gp to refer you too. I have mild, therefore non treatable, SA. No I need to lie down, if I slept propped up I’d never get to sleep I’d get too distracted, as it is I normally don’t get to sleep till 2am ish.
possible sleep apnea not sure of spelling should see your gp mention your symptoms and family history . best wishes. did not see the post below /now above this one.
I figured out the harder I exercise the better I feel. I also found that when I heard the most is when I don't exercise. I've had episodes in the past where I can't sit down and I pace for 4 hours. Tramadol works for me so I just have some old ones left over that I save just in case. I also found that certain vibrations release my muscles. I've put my speaker on the floor and sat on the floor before.
ok, referring to the update you put at the top of your post, my postural hypotension is a form of dysautonomia. I thought I had POTS too as seemed to meet the criteria having done the NASA lean test at home with rising HR, and my BP has been high the last 4 1/2 years with Long Covid. But got a specialist Falls consultant with tilt table to test me who saw BP drop to 61/40 after 8 mins standing and the low BP is what drove up the HR to 130+. From my experience in NHS few GPs, or cardiologists, seem to understand dysautonomia …if you haven’t already get an oximeter and BP monitor I’d buy them ( will last for decades) and keep a diary of what you were doing, eating, cleaning your teeth/ brushing your teeth, filing the washing machine..etc when you felt odd and what your BP/HR was even lying down, sitting up, exercise…for me the thing that sets me off is standing cooking a cheese sauce ie using my hands quite aggressively…makes me have to sit down breathing like I have done a 4 min mile!
Not sure how dysautonomia relates to your comment to me re hard exercise/ vibrations…have you looked up vagus nerve?
I like the others have suggested with the sleep apnea, Would it be paid for with your insurance? I was having very similar problems like yours, It turns out at night I only use 80% of my oxygen, Now they say I don't need any further treatment,
This makes it a tadge worrying, I try not to think too much about it,
I don't know too much about your countries system when it comes to your health, I hope you get some answers soon
I've been having a lot of problems over the last couple years with my blood pressure or blood sugar dropping way too low and feeling like I'm going to die in the middle of the night and getting dizzy to stand up and go to the bathroom. I've been trying to find something with the same symptoms and a couple nights ago I found something about pots or dice I don't know Mia and the symptoms are all there. I just need to check with a doctor and make sure. But I do believe I have had sleep apnea.
Me again…I am also a diabetic. You may now see lots of these diseases seem interlinked sometimes because for eg have one autoimmune disease you have others ( I am also hypothyroid/Hashimoto’s). I presume you are self pricking blood for BG monitor in middle of the night, or have you a continuous blood glucose monitor like Libre Freestyle 2? Abbott’s the manufacturer give a monitor free in the Uk which means you can test for two weeks to get patterns of BG…this seems a more fruitful path to go down rather than dysautonomia as you should be able to rule hypoglycaemia/ diabetes in or out, and drs.would understand that. What is your BG in middle of the night when dizzy going to bathroom?
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Does anyone else drag a leg
Anyone Have Experience of Fibro Treatment/Help @ P'boro Hosp?
TATT ....anyone got any idea if these symptoms are related to ME or Fibro or Chronic fatigue or does it sound familiar in any way ??
Fed up with doctors, getting nowhere fast! 
Anyone with experience of pain management clinic?
