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This is all very interesting for me. I think I am going to try it. I don't have anything to lose except a bit of money.

I am always so grateful to anyone who takes the time to reply. Those simple words - you are not alone - are so very powerful. And knowing that you guys get the 'frustrating' and 'discouraging' parts of a journey that seems sooooo long and fruitless at times. Again, reading those words from others who have been before me really really help me get myself back up and fighting again. THANK YOU. There is much in those replies too that I need to hear at the moment - that reassurance that it takes time and the trial and error element of the drug cocktails. I think I know this in my heart but reading it from other's experiences really helps. I have been trying to keep a daily diary/symptom log but it is all over the place and the brain fog I suffer from really doesn't help me get organised. I will keep at it and maybe try some different ways to record things so it is less of a mess and I am more likely to see patterns. I am really interested Mike O how you keep such accurate vitals. I have a smart watch but it is way off on the heart rate (my BP monitor and finger oximeter typically agree so I use those to record things) and it doesn't do a running recording - only every minute. By the time I have got my oximeter or BP cuff on (oximeter sometimes takes ages to read) and got the reading things might have changed. Especially as I might have to sit down in between before I fall down and then stand up again which sends readings all over the place. Do you have any advice? Or recommendations for what equipment to use. Thanks again to you - especially as you have your own battles going on.

I was diagnosed with POTS relatively recently. I am currently on 5mg daily of Ivabradine (started beginning of June) and 7.5mg daily of Midodrine (started 24 June). I am due to start Mestinon in 2 weeks. I am wearing compression garments, taking salt, drinking at least 2.5l of water a day, eating small meals, starting physio and implementing all the other lifestyle changes possible. But I have seen absolutely no improvement. I think maybe my spikes aren't going quite so high (heart rate 130 showering, for example, rather than 150) or maybe occasionally coming down quicker but they would do this anyway sometimes, with so much variability from day to day. Some things seem to be getting worse - more severe headaches, more severe and more often occurring chest pains, more irregualr heartbeats, BP all over the place etc. The waist-high compression tights seem to make me even more nauseous. I have scoured forums and discussions and YouTube channels but all I seem to be able to find are accounts of how such and such was an instant game changer. I know everyone is very different but I can't help but be disappointed and disheartened. I know I am also probably being too impatient - it is early days and it can take a while to get the dosages/medications etc right. I am so lucky in so many ways, not least of all for having a lovely consultant but I had got my hopes up and am struggling to keep them up. I guess I am just looking for some reassurance. Maybe others could share similar experiences that have a happy ending? Sorry this is so long but thanks if you have read this far.

Thank you as always to everyone for their time. I did have a look around the site for any relevant threads but wasn't able to find anything (although that might be me and my brain fog rather than it isn't there). With both autoimmune conditions and POTS this definitely interests me. The implant isn't something I would probably ever be able to get or afford but the removable/wearable version is perhaps a possibility. Could you perhaps share a little more @TCP about yours....how effective it is and if you think it is worth it etc

An Italian friend has recently told me about a doctor in Milan successfully treating POTS patients using an ear device for stimulating the vagus nerve. I think it was initially developed for epilepsy patients. Does anyone know anything about this? If this really is something credible I am surprised that I haven't seen it discussed in the POTS communities or that my rather wonderful consultant hasn't mentioned it. Those things alone make me skeptical. But interested to know if anyone has heard of this.

Thank you so much to everyone for your time and words. If I have learned anything through this miserable and challenging time it is listen to those that have gone before and tap into the experience and knowledge of those people. This isn't a 'club' I would choose to be in but thank goodness for platforms such as this that can teach me how those already in said club have moved forward.

Hello everyone - just wanted to reach out to you all as there seemed to be so much kindness on here when I was trying to find answers. As of yesterday I have been diagnosed with POTS. I was almost certain I had this condition but having it put in black and white by a specialist has left me reeling a little. On the one hand I am celebrating having answers after so long...something to fight....somewhere to start. On the other hand I am a little overwhelmed and scared. I go from some kind of euphoria to tears and then back again every few hours. On a major plus note I have found the most wonderful compassionate doctor and I feel so very grateful for that. I am not really asking any questions....just reaching out to a community of people who I know will understand at a time I feel in need of understanding. And perhaps you can share your experience of how it was for you when you were newly diagnosed. Thank you for listening.

Thank you, as always, for helping me understand.

Hi all - I think I worded my salt query badly. What I meant to explain is that my salt levels seem good and are at this high level WITHOUT me doing anything about them or taking any kind of extra salt. From what I have understood from what I have read this is unusual for someone with POTS. Don't POTS patients normally have low salt unless they do something about it? And does the fact that I don't have this issue suggest it isn't POTS? Thanks as, always, for your time

This is all very helpful and interesting to me to hear. Although I am yet to be formally diagnosed I am almost certain I do have POTS. I also have Hashimotos and CFS which as has been mentioned before on other threads does seem to go hand-in-hand. Is salt always an issue for all kinds of POTS?. At a recent hospital visit when my tachycardia just wouldn't subside I notice my serum sodium was measured and it was 140 (range 133-146) so that is nearer the top of the range rather than the bottom (and I am assuming that serum sodium is the measure of salt or have I assumed wrong?) So I am assuming salt isn't an issue for me but perhaps someone can advise regarding this.

Brain fog sometimes make me chuckle too ....that standing in front of the kettle and forgetting how on earth I make a cup of tea! It also makes me sad and frustrated at times too. Thank you for all these inputs - they are all so helpful and supportive. MTRJ75.....thank you for sharing that too. I have had several days where my heart seems to be behaving itself a little better but I have felt like absolute pants with chest pain, extreme fatigue and weakness and nausea. Transversely, some days when my heart rate raises are higher I don't feel so unwell sometimes. I had assumed that meant I perhaps don't have POTS after all but, obviously not, going my your experience.

Thank you so much for not making me feel like an idiot. Thank you also for such a clear answer that even my brain-fogged head can understand.

With the word 'tachycardia' in the title this is probably a very dumb question but is it still classed as POTS if there is a sustained 30+ beats per minute rise on standing with lots of associated symptoms but without the heart rate rising above 100? If the resting heart rate is lower - in the 60s for example - then the heart rate would only rise to the 90s. Apologies if this is a stupid question.

You do? THANK YOU! And phew. I was feeling a bit weird sharing that and wondering quite why I was feeling it. You have managed to put it into words beautifully.

Thank you so much for this clarification and info. Thank you for sharing your story too - knowing you are not alone and that others understand is sometimes the best medicine of all. I swing from absolutely convinced that I have POTS (like after my reading mid-afternoon that saw my heart rate rise from 74-127 on standing and stay there) to totally convinced it isn't (another measurement just an hour later, 69-99 but instantly straight down again to nothing significant). Variable maybe but THAT variable?? And this might sound daft (I so hope this doesn't sound ridiculous and weird) but part of me wants it to be POTS - at least that way I have a reason and a name to what is happening so I can deal with it accordingly and get help. My Hashis and hypothyroidism are not responding to meds which has got me down a bit but if there is something else going on perhaps that is why and that raises my hopes again. I spent so long before my Hashis diagnosis being told by doctors everything is 'normal' that I celebrated when I finally got my diagnosis. It felt very odd to be celebrating being told you have an incurable condition but it meant I wasn't going mad, my suffering was being acknowledged instead of dismissed and there were things that could be done to help. This feels the same. May I just say again....thank you so much for the reassurances that POTS isn't the end of the line (as awful as it is). Every reply has been full of hope and reassurance and, if it turns out I do have POTS, such sentiments are gold dust. Your attitudes on here to such a debilitating condition impress me - what an amazing set of people you must be.

Thank you so so much to all of you for your time and words. The messages of hope are so kind and mean so much. In 3 years I have gone from a single gal travelling and surfing the world alone for years, jumping out planes, swimming with whale sharks and climbing volcanoes to an old lady walking with a stick, always totally exhausted, struggling to form a sentence, feeling ill constantly and housebound. I will never give up hope that I can get some quality of life back and these messages help me with that. I suppose I had half convinced myself that POTS was unlikely but the replies here have also shown me how variable POTS is - I suppose I had just been watching videos of people with the severest forms and my measurements didn't match. I have also read about 'flares' but not really clear what people mean by that. Does that mean you can go periods (days? weeks? more? ) without symptoms/significant heart rate on rising and then it flares up again? I am reading all I can about POTS to try and empower myself to do all that I need to do, as I had to do with my Hashimotos. The salt, the compression stocking, avoiding hot showers etc - I will take it all on board. Does anyone have any experience with Dr. Sanjay Gupta? He seems so kind and open-minded from his videos and I am wondering whether to bite the bullet and go down that route instead of taking on another fight with the NHS with a condition that so many medics seem to be so ignorant about. Money can always be found and replaced (especially if I get well enough to work again) whereas my energy and time is much more precious. Thank you again so much for giving me your time and thoughts.

Hi everyone and thank you in advance for any time anyone may give me. I had never even heard of dysautonomia and POTS until very recently. I have Hashimtotos autoimmune disease, the hypothyroidism that results from it and CFS/ME. I am not responding to medication so my hypo is getting worse. I also have very low morning cortisol, virtually zero testosterone and several nutrient deficiencies including Vit D and folate that I have to take supplements for to keep levels normal. I suspect from all I have read that there is a possibility many of the symptoms I have put down to my other conditions may equally be due to POTS but there are so many crossovers it is hard to know. Before I steel myself for the fight with the NHS I want to ask some questions of those with POTS, just in case I can eliminate POTS as being a likely cause. My main questions are to do with variability and that is what is making me question if this could be POTS or not. For example, yesterday there were several occasions where I measured my heart rate rise on standing. On one occasion the rise was over 50 (from 67bpm lying to 121 bpm standing) and it stayed high for ages (or as long as I feel i can stand which is only 2 or 3 minutes). On another occasion that day it only rose a little and didn't stay higher but came down almost instantly while still standing. The rest of the measurements were in between somewhere. Some days I have lots of measurements with a rise of over 30 bpm lying to standing/or over 120 and other days less. Can this happen with POTS or does someone with POTS always have a significant rise on standing? I have read that symptoms can vary day to day and even hour to hour but I am not sure if that also means the heart rate rise is also highly variable. I also find the slightest exertion sends my heart rate soaring. For example, when i dry myself after showering (not vigorous, but very slow) my heart rate is always in the 120s or 130s, even if I sit, and it goes instantly back down to normal when I lie down. Even cleaning my teeth, throwing the quilt over the bed or wiping down the sink can see it in the 120s or higher. Is that something that happens with POTS? I have such severe fatigue that I am housebound now and can only walk a few paces without having to sit down. I get very breathless, feel super spaced out and woozy, feel very sick and nauseous and have an almost constant headache that ranges from niggling to pounding. Brain fog is a constant. Thank you again to anyone who can give me their thoughts on this or share their own experiences. I know POTS has a spectrum and there is mild to severe so perhaps I am at the lower end of things?