cmep37

Had no idea this was a thing - I have a really deep one on my right thumbnail and a less bad one on my left thumbnail.

I do get where you are coming from - I'm 5 foot 10 and weigh 138 pounds on a good day -- over the last 17 years of POTS I've lost about 30 pounds and I really, really have to work at keeping weight on. I lost 5 pounds with Covid and only managed to put 3 back on again and even that was a huge struggle. I vomit about 5 days out of 7 as I retch until I'm sick when my HR rises quickly enough to stimulate my vagus nerve. As standing for more than 5 minutes or walking more than about 500m makes my HR double you can see the problem! The only thing the doctors have been able to do for me is give me Zofran/Ondansetron which gives me a couple of extra minutes before I start to gag. It is so embarrassing when I'm out of the house/with people I don't know well as I can't move very quickly and it is impossible to hide that I'm throwing up.... Are you on any meds or are you trying to manage solely with increased fluids and compression? It definitely sounds like you might benefit from trying a BB or fludrocortisone or midodrine. I've been on all 3 plus ivabradine without success but I know I'm very unlucky and that most people find something that helps control their HR.

Sounds like it probably was the Prozac! I just know that in the past I've thought a POTS symptom was a side effect from a drug only to find it comes back in a flare long after I've stopped the drug. Since you said the Prozac was helping you I wanted to make sure that wasn't the case in your situation! Have you tried a SSRI/SNRI other than Prozac? - I think in the UK they recommend Effexor (venlafaxine) for POTS (personally I tried it and found no benefit) but I did a quick search and found no reports of hair loss with it. It's an SNRI rather than an SSRI - SNRIs increase norepinephrine as well as serotonin so are often used to treat anxiety as norepinephrine is involved in the stress response. Cymbalta is also an SNRI so might be worth thinking about.

I use Zolpidem/Ambien but only take 5mg which is half the standard dose. I won't take it any more than 2 nights in a row (I have only taken it once this year as low dose Trazodone (I take 150mg between 6-7pm) has helped my sleep enormously). With Trazodone I actually feel sleepy around midnight-1am and the night-time adrenaline surges have decreased dramatically.

Yes I am in the UK - the doctors are obsessed by CBT here! About 15 years ago when I was still misdiagnosed with ME/CFS my GP suggested it to me and I did about 4 sessions. To be fair I did learn some useful things like pacing, sleep hygiene and mindfulness but in no way was it the cure that it was touted as! The effort of getting to and participating in the session meant I flared for days afterwards so I made the decision to stop. Before I was diagnosed I had seen 12 different GPs, 2 gynaecologists, 2 rheumatologists, 1 dermatologist, 1 neurologist, 1 gastroenterologist and a clinical psychologist and none of them could have ever heard of POTS as I had all the classic signs and symptoms when I saw them yet none of them ever suggested it as a diagnosis and since being diagnosed I have seen 2 GPs, 3 cardiologists, 1 rheumatologist, 2 gynaecologists and 2 gastroenterologist and only 2 cardiologists and the gastroenterologist knew what POTS was! What is worse is that few of them showed any interest in learning about it. It scares me that many people in the UK are still undiagnosed/misdiagnosed because doctors haven't heard of this illness. Thank you for the tip about abdominal binders but I've tried abdominal compression before and it makes another problem I have much worse - I always retch until i vomit if I stand for more than 5 minutes or walk more than about 200m because my vagus nerve gets stimulated by my increasing HR and if I use abdominal compression this happens even faster. I do wear compression tights that only have compression in the legs and I do find them helpful although I know what you mean about wearing them in the heat!

Don't know what I'd do without yoghurt and soup!

I think I started on 0.1mg and increased the dose by 0.1mg every 3 weeks to a maximum of 0.3 mg. Hope it works for you - some people seem to do really well on it.

I tend to take my BP and pulse morning and evening every day and I will do a quick check if I feel particularly awful at some other time but I know when I was newly diagnosed I took them far too often and got slightly obsessed by it which I don't recommend!

Didn't know this @Pistol - my Granny took it a couple of years ago for severe urticaria and as she never throws anything away I will have to dump it for her now!

I've never found any doctors to help me either @CallieAndToby22. I've seen who passes for the autonomic expert in my area and he has admitted he has no idea what to do with me as I've gone beyond his level of expertise. Last summer my GP sent my Holter monitor scans to him when I was severely bradycardic and he just wrote back saying it wasn't life-threatening! He won't prescribe IV infusions as he says they are too high risk re clots/infections. He is an EP cardiologist and to be fair he did take my case to a multi-disciplinary conference about 18 months ago but no-one there made any useful suggestions either - they just suggested I have CBT to cope with living with a chronic illness! My GP said I could probably give CBT myself I have had so much experience of learning how to cope! I am considering seeing a US consultant via Skype or Zoom as I certainly have exhausted all other options but it's not ideal if I need to ask further questions or I have side effects from any meds prescribed.

When I had my first major crash (that lasted 2 years of me being bedbound) I could do nothing without feeling awful afterwards - making a phone call, watching a TV programme, folding laundry, even cleaning my teeth was sometimes enough to set me off! I had no diagnosis at the time apart from ME/CFS and fibromyalgia - 10 years later it turned out I actually had hEDS and POTS. I realised I was stuck in a cycle of doing too much, recovering, then doing too much again - the problem was that my "too much" was everyone else's hardly anything at all! I worked out what I could do without triggering a reaction - it was hardly anything at all, maybe watching a very easy (ie non scary or loud) TV programme for 5 minutes, cross-stitching for 10 minutes etc and built from there. I made sure I did the same thing every single day for the same amount of time. In terms of exercise I had to start from very, very little - maybe 10 leg lifts twice a day and gradually build it up - I now manage an hour's physio every day without problems but I don't do well with 2 hours one day and none the next!

I can completely understand where you are coming from @Dystasysta - I also struggle with bright lights, loud noises etc and will not go to hospital unless I really, really need to. However I think your situation probably qualifies as really, really needing to - several of my relatives have died of bowel cancer that was not detected early enough. If your consultant who knows your history thinks you need to be treated as an inpatient then she is probably right. Is there any way you could use a visor/face shield rather than a mask in hospital, at least for some of the time? Have you need able to get vaccinated for Covid? I can also sympathise with the friend issue - I have also lost a lot of so-called friends who didn't want to spend time with me if I wasn't the same bubbly, fun person I was before POTS or who couldn't understand that the things they suggested doing weren't suitable for someone who could only stand for 5 minutes at the most. I have decided it was their loss not mine and have invested the time into the friends who did stick by me and who tried to learn about POTS and what it meant I could do.

There is no way I could drink 6 litres a day! I drink between 2.5 - 3 litres of fluid a day (about 50-75% of that electrolytes) and I am never done peeing. I go to the loo about 18 times a day and am up 3 or 4 times during the night. The fluid just doesn't seem to stick with me but no-one in the UK will prescribe me IV fluids. The other reason I couldn't drink that much is that I would have no desire to eat and my appetite is poor enough already.

Are you sure it was the Prozac? I know that I experience a lot of hair loss just from POTS - I saw a trichologist and he believes that the lack of blood flow to my scalp when upright causes me to lose hair - I know that a couple of weeks after a flare my hair falls out in handfuls. Luckily it grows back again and it is an all over sort of hair loss rather than in one particular spot so isn't too obvious.

Pistol's advice is great if you live in the US but if you are in the UK your chances of getting IV fluids are next to nil so I will chip in with what I do in your situation (and yes I have been where you are more times than I would like to remember!). Sadly the only thing that I have found that works is a combination of rest and time! I try to lie down (whether in bed or on a couch) and do a very small amount of exercise every 30 minutes - sometimes it's getting up and walking/crawling to the bathroom, sometimes reclined leg raises or stomach crunches, sometimes just lying on my back bicycling my legs in the air. I make sure I keep drinking - around 2.5 litres a day, at least half of this electrolytes, I eat small regular meals and I avoid any type of stress. When I get that ultra-panicky feeling of too much adrenaline in the system I spend 10 minutes doing square breathing - breath in for 4 , hold for 4, breathe out for 4, hold for 4. I find focusing on counting helps calm me down a little. I will use sleeping tablets in a flare if necessary although never for more than 2 nights in a row. I remind myself that I have never failed to come out of a flare (it is so easy to think that you will be stuck like this forever) and that I just need to give it time. I have always found that fighting a flare and trying to push through only leads to it lasting longer and being worse than if I roll with it from the start.

My period has always been a major trigger for an increase in dysautonomia symptoms - I have heavy periods so I think it's just due to less blood being in circulation. I had a Mirena IUD fitted about 12 years ago and found it a tremendous help - a couple of months after I have it inserted my periods stop and I generally get about 3 years without a monthly bleed and when my periods do restart I get another one put in! The thing that I have found most helpful for night-time adrenaline surges is 100 mg of Trazodone around 6pm - a low-dose antidepressant which helps me sleep better and for longer periods of time. Before Trazodone I rarely slept before 3am and only slept for 30-60 minutes at a time before waking with a jolt, now I get to sleep around 1am and sometimes sleep for as long as 3 hours at a stretch. I have no grogginess the next day and I have no other side effects from it

Try this one and see if it works tigger - I really think it is worth doing as it will give you a good idea of how you would react to a TTT. PMTTT-Instructions.pdf (potscare.com)

I agree with you @MTRJ75- I will sometimes get tachy just sitting if I have eaten a heavy meal! I also get tachycardic if I sit still in one position for too long - the blood pools in my legs in just the same way as it does when standing. I deal with it by moving about every 15-20 minutes and if I have to sit for a long period without being able to move I sit knees to chest as this seems to help. It's one reason why I struggle in a car - it's not possible to move around or to sit knees to chest so I just fidget my feet a lot. When you get tachy just sitting does your HR drop if you lie down? Mine always did which reassured me it was just POTS-related.

Fludrocortisone was one of the first things I tried and had absolutely no impact for me - no side effects, no improvement in symptoms. I gave it a go for about 3 months and then stopped as I couldn't see any point in taking it. Having said that I do know a number of people who it helped enormously so if you haven't tried it it's certainly worth a shot. Remember you will be taking a very small dose of it (the most I was on was 0.3 mg)- a lot of the side effects seem to happen if you take larger amounts.

Don't worry about what anyone else thinks - if I had a pound for everyone who told me how well I looked I'd be rich! Apart from being pale and on the thin side I look completely "normal" - it was only when I came back to live with my parents that they really understood how ill I was. I would make a huge effort when I saw them and they knew I wasn't well enough to work but I didn't want to worry them by telling them how bad it was. Of course they got a terrible shock when my fiance left me and I moved in with them and they realised what my life was really like.

Honestly in the grand scheme of things 3.5 months isn't too bad - on the NHS in the UK I have been waiting 5 YEARS to see a particular specialist for hEDS!

I think it depends on the attitude of the cardiologist you see. The first one I saw didn't know anything about POTS, he told me POTS was psychosomatic - that I didn't want to work and that I was making myself ill so I didn't have to - all this from speaking to me for 5 minutes!! I've also had nasty experiences in A&E from doctors who don't understand POTS and think it is just anxiety. Having said that I have seen a great gastroenterologist who didn't really know much about POTS or hEDS but who was prepared to learn. You have to be prepared for bad attitudes and be strong enough to deal with them.

Hi @erinliawelcome to the forum! How are you managing your symptoms at present? Increased fluids/salt, as much exercise as you can tolerate and compression tights are all a good idea if you're not already trying them. If you aren't on meds and you are struggling then it might be a good idea to speak to a doctor about prescribing something. Common medications that help POTS patients are low dose Beta Blockers (eg. Propranolol 20mg) to lower HR, meds to increase blood volume like Fludrocortisone, or meds to constrict veins and stop blood pooling like Midodrine. Often it takes a considerable time to figure out what dose and what brand of meds suit you, so if at first you don't succeed, try something else! Fatigue is a difficult one, even with better control over HR and BP many POTSIES still feel tired. Some do well on a SSRI/SNRI, others on stimulant meds like Ritalin or Modafinil. The thing that helped me most with fatigue is low dose Trazodone which improved my sleep patterns. If you have hyper-POTS you may do better on a blood pressure med like Clonidine (generally hyper-POTS patients see an increase in BP on standing rather than maintenance or a drop in BP). You can check this out yourself by using a BP monitor when standing at 2, 5 and 10 minutes. Otherwise I don't think what type of POTS you have matters that much as most types share similar symptoms. Hope this helps - look forward to seeing you around!

I can't cope with coffee but weak tea is fine - weird isn't it?

When I did my TTT my HR was 174 after standing for just over 10 minutes - the junior doctor decided to stop the test at that point as there was no sign of my HR slowing and he felt it would be dangerous to continue. I was begging him to continue, worried that they wouldn't have got enough data after just 10 minutes but he laughed and said they had seen all they needed to.... I've had much higher numbers (180BPM+) on a 24 hour heart monitor but one of the first cardiologists I saw (who didn't know what POTS was) tried to tell me that the machine must have been faulty?!