cmep37

This is a typical symptom for me with POTS - my GP prescribed me Driclor (a really strong antiperspirant deodorant) as like you I was soaking the armpits and back and underboob area of my clothes if I stood up for more than a few minutes. It has worked a treat - I used it every day for about 3 months and now I only need to use it a couple of times a week. You can buy it on Amazon if you don't want to go through your GP. It doesn't stop the feeling of being hot and sick but it does stop the rivers of sweat!

I'll have a look out for those thanks Pistol - my GP gave me these high-calorie protein drinks which are utterly vile so any alternative to those would be good. I'm not great with thick drinks (I'm the only person I know who eats Hot chocolate with a spoon like soup otherwise I choke on it!) and these taste so synthetic and sweet that I just couldn't get them down.

I have the opposite problem - I really struggle to keep weight on. I lost 5 pounds with Covid and my BMI is now 19 again. I retch and vomit most days - I have tried eating smaller meals more often , it makes no difference, I just feel sick more often. My HR is 140+ just standing still and easily hits 160+ when I exercise which burns loads of calories so although I seem to eat a reasonable amount of food I find it really hard to gain weight. The only way I can put weight on is to eat rubbish (chocolate, ice cream, sweets) which I don't like doing as I try to limit my sugar intake.

I spoke to my GP about it and she said that as long as I could prove the person I was seeing was an expert in POTS (she is, she has written books and speaks at conferences on dysautonomia which my GP said would more than qualify as an expert) then she could prescribe anything suggested that was a drug recognised in the UK ie it couldn't just be experimental. She was happy to prescribe drugs even if UK consultants wouldn't usually prescribe them for POTS on a trial basis and if they helped me then she would carry on prescribing them. We talked about IV saline which given Pistol's experiences I'd love to try and she said that she just couldn't see a way to get me them - district nurses can't do it, A&E wouldn't do it on a regular basis and to get them in hospital I'd need a UK consultant to order them. It was actually my GP who encouraged me to look outside the UK - being in Northern Ireland there often aren't experts in rarer conditions and so she is familiar with patients seeing consultants in the Republic of Ireland or Germany although I'll be the first seeing a consultant in America. PM me if you want to know more about who I'm planning to see, prices etc

I get that pain you are experiencing too Merkat - usually when I'm in a flare and haven't been able to do enough exercise. I've had it every night this week as I haven't walked further than bed to loo to sofa in about a month although I am still doing stretches and physio exercises. I always thought it was coming from hEDS rather than dysautonomia but maybe I'm wrong. I feel like you do with consultants and doctors in the UK - if you are hard to manage they tell you to learn to live with it - I'd like to see them deal with what we do every day for a week and then still tell us that! That is why I'm saving up to have a virtual appointment with a consultant in New York who specialises in complex cases of POTS. If I see her and she agrees there is nothing more that I can do, then I'll accept it but I can't help feeling like there is more than can be done if I could only find it! Until then big hugs - I am thinking of you xxx

Thank you - I am extremely grateful that none of my family needed to go to hospital and am convinced that the Vitamin D supplements my Granny has taken since the start of the pandemic helped her. My Dad's friend died of it last week (there are loads of cases in our area - we don't think we infected anyone thankfully) he was in his early 70s and still working fulltime with no major health issues. His wife who also tested positive has COPD, yet she had barely any symptoms. I keep telling myself that this flare will pass - my blood pressure around 8pm last night though was 65/42 - a new low for me, I did not feel well! 15 minutes later and it was 100/85 - don't you love autonomic chaos?!

So I tested positive for Covid the weekend after New Year. I thought it might be useful to explain what it was like to have POTS and Covid. FIrst, to start off with it is very hard to tell that you have Covid! For the first 10 days, I had no cough or loss of smell or taste and although I did have a temperature it was only at night and no different to my usual dysautonomia night sweats which I generally get a few times a month, more often if I'm in a flare. As no-one else in the family was ill apart from my 85 year old grandmother who a few days earlier complained of being very tired, for the first few days I assumed I was just in a flare and Granny had done too much getting ready for Christmas. It was only when my parents and brother also started to feel off colour that we started thinking it might be something else but that was a few days later! My Granny had had to go to hospital outpatients for a biopsy on a suspected skin cancer and although she took every precaution we can only assume she picked it up there and passed it on to the rest of us as she hadn't left the house since September and like me, had had contact with no-one else apart from immediate family. Next, my Covid symptoms were no worse than anyone else's. After about 5 days of just feeling tired and having a temperature at night, I then developed extremely bad nausea (I vomited up everything I ate for 5 days and was sick after breakfast and lunch for a further 5), diarrhoea, awful headaches verging on migraines, dizziness, dry mouth and eyes, really stuffy, painful sinuses, a terrible pressure in my head, insomnia, sore throat and ears and extreme fatigue but so did my Dad who is mid-60s with no underlying health issues. My Mum and brother were less severely affected but they still were pretty poorly. My grandmother was worse as after a week of feeling tired she developed pneumonia but she was prescribed a strong oral antibiotic and although very ill she was not hospitalised. Apart from Granny none of us had any real breathing issues - I was a little short of breath some evenings but I was very bradycardic so it was hard to tell if it was down to that or Covid. I should point out that my POTS is secondary to hEDS rather than post-viral so that may have an impact on how my immune system dealt with it. 3 weeks later and most of my Covid symptoms have gone - I still have a cough, a mild sore throat and very little appetite but with all the adrenaline in my system that's not really surprising. I had some trouble with Track and Trace deciding when my self-isolation should end - the person I spoke to said she had never met anyone who routinely ran a temperature before! Normally the rules are that you should self-isolate for 10 days from first symptoms and stay self-isolating if you still had a temperature at the end of 10 days until you have not had a temperature for 72 hours. I still had a temperature at night well into week 3 but whether it was a covid temperature or a dysautonomia temperature I have no idea. As I'm mainly housebound anyway, it was only if I needed a doctor or to go to hospital that it really mattered. I was told to speak to my GP and we agreed that 14 days from first symptoms was probably long enough to make sure I was no longer infectious but I should tell any medical practitioner who was treating me so they could take additional precautions just in case. Covid has triggered a really bad flare - when the diarrhoea and vomiting hit so did the POTS flare, not helped by the fact it was very hard to remain hydrated. Three weeks on and the POTS flare is still continuing - I am tremoring all the time, and having horrible Tourette- like jerks due to the high amount of adrenaline flooding my system. My BP which is normally 100/80 standing has dropped to 80/65, my HR which is normally 140ish is more like 160ish and I'm having adrenaline surges all day and night. For the first few days when I just felt tired, my bradycardia was much improved - at bedtime my HR was around 60 rather than low 40s but once the POTS flare hit the bradycardia came back full force. Advice for others? Suspect Covid if you feel different from normal, although good luck getting a test in the UK - I wasn't able to travel for a test and home tests are in extremely high demand. However bad you feel, try to get out of bed for at least part of the day, even if you are just collapsing on the couch. I tried to get up mid morning, went back to bed for the afternoon and then got up early evening as I was very worried about becoming deconditioned. I also did some basic stretches and physio exercises most days even if it was just for 5 minutes at a time. Drink if you can't eat - we lived on soup for several days and I depended heavily on rehydration sachets. I'm happy to answer any questions anyone has but the moral of the story is I got through it so keep calm if you do test positive.

I live in the UK and take Domperidone too @KiminOrlando. I've not been formally diagnosed with gastroparesis but I have all the signs of it when I'm in a bad POTS flare so my GP is happy to prescribe it so long as I'm only taking it for short periods a few times a year. Domperidone works brilliantly to speed up my digestion - I usually only need to take it for a few days (less than a week) at a time. There is some concern about long-term use causing cardiac complications like long-QT syndrome so even in the UK it's not as popular as it used to be but my GP hasn't found anything else as effective so keeps prescribing it for short-term use.

My cardiologist was extremely positive about it - he told me it would reduce my standing HR without lowering my BP like beta blockers did. Apparently a colleague had had great success with it! I had read about it and knew it was contraindicated if you have bradycardia - at that point my HR would be high 40s/low 50s a few times a month but my cardiologist though it was still worth a try. Within a fortnight of starting at half a normal dose (so 2.5mg a day) my HR had dropped into the high 30s/low 40s in the afternoons and evenings so I had to stop. To be honest it was after this my bradycardia started to become much worse; now it is low 40s most evenings without the Ivabradine! Although it didn't help me, I do know a lot of people who get on very well with it and use it in combination with Midodrine and/or Fludrocortisone to significantly improve symptoms.

Just wanted to wish you all a very merry Christmas and a happy (and hopefully healthy) 2021! Thank you for all the advice and support this year - it makes it so much less frightening and lonely when you have a "tribe" to belong to!

What weight did you get Merkat? The price seems to have dropped a lot since the last time I looked at them - happy days!

That's really interesting @PistolI may look out for one in the January sales!

I was wide awake last night and thinking about this and remembered someone on another forum said a weighted blanket had helped stop the tremors. Actually they said it had also helped them sleep better too. Because of my hEDS I was a bit worried the weight might make my joints move out of position and some nights they don't need any help doing that(!) but if that's not an issue for you it might be worth a try?!

I can't help @Hippopotsamusbut I can sympathise. It's one of the things I really hate when I'm in a flare - I wake up with a jolt and have full body tremors which last at least a couple of hours. If I concentrate really, really hard I can stop them but the amount of energy it takes is enormous so I rarely bother trying any more. I haven't found anything that helps - heat doesn't work for me but it does go away eventually.

I feel so sorry for you @merkat30. I feel awful at night with my bradycardia but at least I can temporarily get rid of the symptoms by standing up. Would your GP write you a letter to give to A&E doctors explaining your situation? Often when we're ill enough for A&E we aren't able to speak up for ourselves and at least a GP's letter would mean they knew it wasn't just anxiety/panic attack/whatever other psychiatric diagnosis they try to slap on you!

Has your doctor ordered a 24 hour BP monitor for your daughter? It might show these weird highs and lows that a lot of us have. My BP is generally on the low side (100/60 when resting, 100/80 when standing) but it can be very erratic, especially if I'm in a flare. My GP has ordered a 24 hr BP monitor a couple of times after seeing my BP very high/very low in her office - the monitor was able to pick up these spikes and dips but it reassured us that neither lasted very long! I agree with @Pistolabout starting on a low dose of any medication and working up - my problem is usually that a low dose is ineffective and a higher dose that actually works causes side effects! The joys of dysautonomia!

I've tried that one and amitriptyline (both are tricyclic antidepressants) but both raised my resting HR from around 60BPM to around 90 BPM) making my POTS symptoms much worse as I still had a doubling of my HR on standing. They did help my sleep though and my Mum (who has HSD but not POTS) sleeps very well with 75mg of Amitripyline - it also helps with her pain levels!

@LisaMarieWelcome to the forum! @Pistol has given you some really good advice. I had POTS symptoms from about the age of 10 was only diagnosed 5 years ago (I'm 42 now!). One thing I would add is that it's important to manage your daughter's periods. Anything that reduces blood volume makes POTS worse. As a teenager I would really only have symptoms during and after my period. I found running 4 packs of the contraceptive pill together and only having 3 periods a year helped a lot. Another option to help your daughter's concentration is Modafinil (Provigil). I was prescribed this as I was really struggling with fatigue and it did really help with my brainfog although I found the effects wore off over time. You need to take it first thing to allow the effects to wear off during the day - I think the half-life is about 16 hours. The thing that has helped me most with sleep is Trazadone - it's an antidepressant but I take it at a lower dose (100mg) than that prescribed for depression. if I take it between 6-7pm I can generally get to sleep between midnight and 1am and I have longer periods of sleep - before taking it I wouldn't get to sleep until 3am and jolt wake every hour, only getting about 3-4 hours in total. Now I get about 6-7 hours most nights and I'm not groggy in the morning.

Yeah I'm the same ! won't go to A&E unless I'm dying! Too many rude doctors who don't understand, won't listen and treat you like you're mad! My temp goes up quite often when I'm in a flare so I know what you mean about them thinking it's covid. I also have a lingering cough after having pneumonia at Easter so I keep having to reassure medical people that it's not a new cough and I don't need a coronavirus test!

With my EDS I find I have some joints that just pop in and out a lot - I wouldn't really call them dislocations as they mostly go back into place as soon as they go out or are very easily put back into place! My second rib on the top right is particularly bad (I have a permanent swelling there now which is not that nice to look at!), the bottom ones at the back on either side are also very lax and I also have a couple in the middle of my back that really bother me. I was hoping that some exercises would help as when they pop in and out I sometimes trap a nerve which is excruciating for days and makes my HR much higher! My left hip also used to be a nightmare before I started doing exercises to strengthen the muscles around it and now it hardly bothers me at all. Thanks for the tip about youtube @Pistol- I will have a look and see if I can find anything useful! Alternatively I need to make friends with a PT!

10 years ago I waited about 6 months to see a neuro but waiting lists have got much worse since then and now with Covid many consultants have seen hardly any patients this year. I know when I wanted to see my cardiologist about my bradycardia this autumn his secretary told me he was only seeing urgent patients with life-threatening problems in his NHS clinic. Of course he would have seen me privately within a few days! Is it worth seeing how much it would cost to go private? I assume A&E have been no help or like me you just refuse to go now after too many bad experiences!

I would love to have an exercise programme put together for me but the one physio I was referred to saw me once and decided I was too complex for her! I wanted her to teach me some exercises to strengthen my chest muscles to stop me popping my ribs out at the top and front (does anyone know any?) but she wanted me to do them standing - I asked if there was any reason I couldn't do them sitting and explained about POTS whereupon her eyes glazed over and she said she didn't think she was qualified to help me..... I am waiting to see a consultant rheumatologist who can refer me to a team of physios with an interest in EDS who understand POTS but the waiting list is terrible - I will have been waiting for 5 years next spring!

I have many similar regrets @Pistol - I loved my job as a litigation solicitor but worked 70 hour weeks and although I did eventually leave on ill-health grounds, I insisted on getting another job with fewer hours rather than giving up work altogether until I reached a point where I completely collapsed and could no longer stand at all without severe symptoms. I also wonder what would have happened had I been diagnosed with POTS sooner - by the time I got a diagnosis I'd been ill for over 10 years and my body thought POTS was how things should work! I wonder if meds would have worked better for me had I had access to them sooner.... but that way lies madness! @MTRJ75I very seldom go to my GP any more with POTS issues - she is lovely but I know far more about dysautonomia than she does and she would be the first person to admit that. She will happily do referrals to consultants and prescribe me any drugs she is allowed to but she just doesn't have the time to research a condition that only one of her patients has. Even my cardiologist can't answer many of my questions although I do prefer to be told I don't know than patronised! Re exercise my advice is to stop long before you think you need to! Try to do the same thing every time you exercise so that will mean starting with what you can do on your worst day and building from there very slowly and gradually. The one good piece of advice I got from my GP is that POTS (or any chronic illness) is a marathon, not a sprint so try to take a long view rather than focus on the short term.

This all sounds really interesting @Pistol. New areas of research and new drugs (or even old drugs being used in new ways) offer a little hope for all of us! Please keep us updated on how you get on with the Plaquenil - is that also used for lupus?

I am the first person to admit that bedrest is terrible for POTS - I've actually dragged myself out of bed when I had pneumomia as I was scared staying in bed for a week would lead to a bad relapse. However I think there is a tendency among some doctors to blame POTS on deconditioning when the truth is that it is POTS itself that makes it extremely difficult to exercise. @MTRJ75I have tried Levine's exercise programme for POTS - he was the doctor that linked POTS to a small heart, he called it "Grinch" syndrome and initially he seemed to suggest all cases of POTS could be cured by exercise. Here is a link to his exercise programme case you haven't seen it Microsoft Word - CHOP_Modified_Dallas_POTS_Exercise_Program.docx (dysautonomiainternational.org) I still do most of the stretches and exercises on it every day but I was never able to progress to upright exercise and it certainly didn't cure my POTS. What I disliked about it was that it seemed to blame the patient if they were unable to progress - it was like they were saying you hadn't tried hard enough. Every time I tried to exercise standing up, my heart rate would get too high which stimulated my vagus nerve and made me vomit - I persisted for a month before realising it wasn't making any difference, my HR wasn't improving and I was losing too much weight. I am as active as I can manage - every day I take a 10 minute walk, do an hours stretching/physio type exercises and 10-15 minutes recumbent cycling although if I'm in a flare this drops to just 30 mins of physio. When my POTS was milder I was advised to exercise so I brisk walked at least 3 miles a day and went swimming a couple of times a week - it didn't stop my POTS becoming severe, in fact I think over-exercising was one of the things that caused it to become severe! I think the type of exercise you do is important, swimming is probably the best as the water provides compression but anything recumbent and anything that builds leg muscle is good.