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About Chuske

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  • Birthday July 14

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    Exeter, UK

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  1. Thanks @PistolSounds similar to me. IV isn't something I can do I don't think. Before IV how much water and salt did you take onboard before sleep and when did you take them?
  2. @Pistol I totally agree that ANS is the root cause of both, I guess my point is bloated stomach or hiatal hernia etc or whatever GI prob if it causes pressure on the vagus nerve or the heart then that can also cause heart etc symptoms directly? Last night I was woken with a racing heart at midnight. But even though my stomach was fine before I slept it seemed bloaty and a bit refluxy when I woke. I hoping soon to have 7 day holter to look at these night-time tachy spells as they could be POTS directly, heart directly (svts), stress or my stomach or a sleep issue. Luckily if I go private can do that by post with Dr Sanjay Gupta. I think when I'm stronger I need to push my GP to send me for GI workup. At the mo that isn't practical when can't get downstairs.
  3. Reviving this very old post as this is something I wonder about. I have a lot of minor GI issues and often they affect my POTS and heartbeat. Dr Sanjay Gupta talks about it in one of his videos under the name gastro-cardiac syndrome. How important has stabilising your go symptoms been on improving things like adrenaline rushes, tachycardia spells and general POTS? I found this helpful https://www.fixyourgut.com/roemheld-syndrome-stomach-heart-issues-relief/
  4. One of my issues is being awakened in the night by thirst. I'm trying to find the right strategy to hydrate enough before sleep while not having too much fluid in stomach as it seems to empty slowly when a lot of fluid in it. I'm using concentrated balanced electrolytes solution which I dilute in water to strength suggested on the bottle. What do you guys do?
  5. Thanks little energy to reply but sounds like anti-h can be useful in short-term but harmful on long term. So might be worth a shot to break me out this insomnia spell then get off it. I'm finding ginger tea is helping a bit with stomach plus smaller portions more often.
  6. Hi @issie. Thanks do you know which MCAS thread? My sleep is still bad so struggling to read much. My GP wondered if Phenergen (Promethazine) might be a good option for sleep but you are saying you are avoiding anti-histamines? Is there a reason for that?
  7. Things got more tricky my POTS specialist just retired (Dr Jeffery's,Exeter,Uk) and there is no replacement and my GP has little experience of POTS and not willing to try Gabapentin without a specialists say so and other drugs such as nortriptyline, amitriptyline and mitrazapine I tried in the past with no benefit or sometimes bad reactions. So I have no knowledgablemedical support. I could try private consultation with Sanjay Gupta online but not sure how much he can do as a private specialist in diff part of country and whether my GP would act on his advice etc.
  8. Thanks @Pistol, really appreciate you replying. Not sure if I'm hyper pots or not but BP generally normal ie 105/74 so maybe I don't but ANS sure does seem messed up. I'll try all that advice as and when I can. At the moment the adrenaline rushes are wrecking my sleep often best I can do is 3 hours proper sleep and a couple of hours deep dozing. I use Zopiclone but I think as I be used it more during this dip its benefits wearing off and seems to make the adrenaline rushes in the morning worse. Trying to get my gp to switch me to Gabapentin. Waiting to hear back. If I could sleep better it would really help..... How do you guys manage when sleep is bad I'm so weak and exhausted I can't get downstairs at all right now. Hardest part was thought I was turning the corner at the weekend only to start getting this jittery/adrenaline feeling with oscillating HR but fairly stable BP. Also my adrenaline rushes I feel very physical not mental and get funny feeling in adrenal/kidney area. HR even lying goes up and down in waves between 70 and 110. Early evening it settles to 65. Just annoying they start at 3am ish
  9. I've been diagnosed with POTS (via tilt) and ME for a few years now and it was fairly well managed I was a bit limited in walking, I don't have EDS and prob not hyper-adrengeric. Then 5 weeks ago it got a lot worse, I started having worse anxiety and getting more fatigued so much so I found it hard to sit up for evening meal and my stomach symptoms of trapped gas were also worse and seemed to be in turn affecting my POTS symptoms and giving me chest pains that were relieved totally if I burped. Then 3 weeks ago shortly after dinner I had a sudden hyper feeling like I would imagine if I'd had lots of caffeine (but I never have any) and had a brief spell of high heart rate and sweating nd then my legs started shaking and spasming. At the time I assumed it was a panic attack. After that was mostly bedbound with short trips downstairs and was slowly improving until monday when I had the hyper feeling again on waking and none of my usual anxiety interventions would help. Then after lunch I had another high heart rate spell and called for medical help, para-medics were sent and my ECG/EKG was fine and blood sugar normal and BP 145/80 (it was 115/75 after they left on my home monitor so I suspect it was up due to the stress of them being here) and normal blood sugar. They didn't seem concerned about the hyper feeling. I felt hyper all day until my wife gave me a very deep massage and then I had the legs spasm/shake again. Yesterday I was alright but today had another short spell of high heart-rate from sleep (meaning I only had 4 hours). I called my GP but her attitude was that she couldn't help me unless I could get to the surgery as they only do home visits for the elderly. She felt it was likely all POTS + anxiety and should up my Ivabridine and come in if things didn't improve, even though I told her I can't get downstairs. So what to do? How to improve myself and get better without further medical support or so I can get more tests? I've had a lot of anxiety recently, but how to manage my POTS, sleep and anxiety around these occaisional hyper feeling attacks (these have only happened very rarely in the past and not all day like monday)? I need to build up sitting so I can at least cope with wheelchair rides and be able to manage getting downstairs. Feeling really lost as rarely been this bad. Any advice? Has anyone else had the hyper-wired feeling before a heart rate increasse due to their POTS?
  10. 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 worked I find there is both a stress and physical activity link with this but its not totally consistent
  11. 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 etc Has anyone else had anything even remotely like this? If so do did anything help you? Thanks Jon
  12. For me I've noticed that my palpitations are caused more when I have reflux, trapped gas suggesting the vagus nerve is perhaps over-sensitive?
  13. High I heard that for ME/CFS the "legs up the wall" pose is good, is this ok if you have POTS too? http://www.yogajournal.com/poses/690
  14. Hi I'm new here and hope to introduce myself properly soon, I'm waiting for tilt-table est to confirm my physican's diagnosis of POTS. Recently I've been getting feeling of pressure in my head (pressure headache) when standing and in the evening. Is this or could it be a POTS thing?
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