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Everything posted by Chuske

  1. Has anyone had spells of POTS suddenly improving in terms of heart rates? Last few days when I was very fatigued from poor sleep oddly my POTS was improved. I had standing pulse rates in 70s for first time in years. Seemed almost like I had just bad ME and not ME and POTS. Not sure what has changed. I'm suspecting my stomach issues are a factor in my POTS ie when I have more bloating the POTS is worse. Also I've been hydrating even more than usual. Today I'm a lot more energetic after better sleep but POTS and stomach both worse. Odd.
  2. Thanks @green I've never tried HRV but had heard it mentioned as a way of getting a view on ANS dysfunction. Must admit I didn't look too deeply. Sounds like it is less useful than it first sounds if there is a lack of consistent definition. Also great you found a way to improve your breathing. For me stomach issues can sometimes cause me problems. So I find it best to do these exercises before eating. Agree though that this only works if your breathing isn't disrupted by things out of your consideration control.
  3. @PistolDoesn't sound like my ME except the brainfog and fatigue. Thing is there is a lot of variation between different people so I can't say it isn't, just that it sounds some of the added symptoms sound quite rare even for CFS plus high BP is not usual in ME as far as know.
  4. @Pistol Sorry to jump in on your question to isse. I've had just ME and later ME and POTS. The main differences are postural and cardiac. When had just ME I had no postural symptoms at all and very few cardiac ones but lots of physical and mental fatigue. With POTS I started getting spells of fast heart rate when overdoing things and then as it got worse the postural effects. My original ME was after a bad case of flu the POTS started after tetanus jab and antibiotics plus lots of stress. My original recovery occured for my ME by focusing a lot on brain retraining to calm reactivity and pacing. This might fit in with the neuro-imflammation idea in that if you can calm the brain enough it can "reset"? There is a lot of overlap in the conditions but I'd say the exercise intolerance is worse in ME than someone with just POTS.
  5. @issie thanks so much for your support. I'll take a look at health rising
  6. Sure. Good thing is you are feeling better than you were though.
  7. @issieYes I have ME and POTS I had ME first and almost totally recovered from it in 2006 but then started getting POTS as well in 2010. That is the tricky bit my energy prob tanks more than someone with only POTS. Psychology side is actually important for my ME side of things but I use better things than CBT which I never saw any benefit from. Find any kind of stress really tanks my energy. Nutrition, exercise,pacing, sleep etc all important too. At my best in 2012 I was able to travel and walk long distances but since 2014 POTS has been worse and in turn affects the ME. I was ill but functional until 5 weeks ago when it all relapsed badly.
  8. @PistolOk thanks. Sounds like your workout is not something I can do in one go yet as tried several leg lifts yesterday and then had really bad fatigue the rest of the day so I'm having to really spread things out. So I'm starting with doing 1 or 2 reps each hour and aiming to build up. What I am finding is my body is adapting better to less sleep so am able to do a bit more on bad days. I'm also managing 5-6.5 hours sleep so getting better than 3-4 last week that left me in extreme exhaustion all day. I'm stuck upstairs at the moment so can't go out but on sunny days I open a window and lie on the floor in the direct sun for a few minutes to sunbathe. In terms of stairs when I go for a walk sometimes I go a few steps down and back up. I last got downstairs two weeks ago just before the flare got worse. Hoping to get down next week. I'm also resting on a different bed in the day (diff room) so I get a change of scene and slightly better for sleep hygiene to be out of sleeping bed. I'm experimenting with doing exercise then deep relaxation after. Fingers crossed I can work thro this without needing too long rehab.
  9. I often wonder if any neck postural issues can have some impact on POTS especially after seeing a video of a doctor who treats mild CCI with realignment and said even severe cases that surgery will ultimately fail in long term if patient doesn't correct posture.
  10. Wow. That is cool. Always wondered how the pacemaker nodes interfaced with the ANS. Thanks for that.
  11. @Pistol in terms of your advice to stand up every hour to try and limit deconditioning did you still do that on days when your sleep was very poor? Quite hard to judge how to balance resting v activity to avoid increased fatigue from overdoing it and from deconditioning. A few weeks ago before the flare up I could walk 300-400 m in one go and manage stairs any time I needed. Now I can't do stairs and limited to short walks to per or fetch something from another room upstairs. I maybe doing 100-150m walking over the whole day on a good day in lots of short chunks (it's about 10m from one room to the next). My thighs have got thinner so I'm trying with the walks and some legs exercises in bed to keep me moving and when in bed to sit up for some of the time. At the moment things seem stable but keen to build up to limit muscle loss. Do I sound on the right track? I've rarely been this bad so trying to find my groove. I'm thinking of doing deep rest after each walk to try and restore energy.
  12. Good advice thanks. Sorry for all the questions but I have one more. I'm finding the hyper feelings I get relate to how much sleep I get ie more sleep more hyper, poor sleep then often very much more calm body (but frustrated mind at less sleep!). I'm now managing around 6 hours sleep but I prefer 7-8. By the last sleep cycle I'm awakening from dreams a bit tachy and hyper, water helps the tachy but not found a way to calm the hyper feelings.
  13. Thanks. One question is how did you guys adapt sleep hygiene when needing a lot of bed rest? Still sleep issues making it harder to up activity and break out.
  14. Thanks for the advice and encouragement it really helps. Yes I'm on ivabridine 5mg. My specialist seemed to only really have that as an option. It does help a bit. I think he used different treatments for those with EDS. He just retired due to ill health so I'm without specialist advice at the moment. The POTS treatment here in the UK seems fairly basic compared to the workup some of you guys got.
  15. Thanks to advice of ppl on hear I be been putting a few strategies in place and making some progress. Things that have helped:- Increasing fluid intake. Also useful to hydrate more if notice adrenaline rush starting. Having more smaller portion meals Resting more and doing lying exercises on days I have energy Managing digestion with ginger tea Regular slow breathing exercises. Particularly useful for nipping adrenaline rushes in the bud. Challenging anxiety and "what if" thoughts. Trying to avoid the news or anyone that is not solution focused regarding POTS. My whole strategy is to do as much as I can to calm the ANS by reducing stress and triggers of adrenaline rushes such as dehydration and over-doing things physically. I'm hoping this stabilises things enough that I can start increasing activity slowly.
  16. But your saw a positive change so why not do it as much as practical and see if benefits do start to last? I'm seeing some benefit already, need to do it a lot tho. EDIT this was responding to a reply that has disappeared. I think the user left the forum.
  17. I heard that a breathing rate if around 6 full breaths a minute for 5 minutes can improve vagal tone and heart rate variability both of which are associated with better heart health including reducing arrhythmia risks. Not checked for full studies but heard it repeated a few times that breathing and chanting can balance the ANS via the vagus. I will definitely be trying both 4-6 breathing and 5-5 (square) ie in for 5secs, out for 5 secs to see if it helps my symptoms. Has anyone used heart rate variability tracking to see how that relates to their condition and symptoms?
  18. 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?
  19. @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.
  20. 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/
  21. 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?
  22. Thanks will take a look when feeling a bit better
  23. 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.
  24. 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?
  25. 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.
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