cmep37

I am so pleased you had a wonderful day. I have a similar attitude to doing things - you weigh up the pleasure you will get against the flare you will inevitably suffer and decide if it's worth it. A couple of years ago I decided to go to a friend's wedding - I just thought stuff POTS, I'm going! I planned it all out - my parents and brother were invited so I had plenty of support, I had my hair, tan and nails done the day before so I could stay in bed until the very last minute. We turned up just before the ceremony started so I could sit down right away and after the ceremony was over there were loads of sofas at the venue so I sat and let everyone come and talk to me! The bride's parents were staying at the wedding venue and very kindly lent me their room to have a lie down between the ceremony and the meal. I made the decision to leave straight after the meal was over; I'd spoken to everyone I wanted to and the evening dancing would have been wayyy too much for me! It took me roughly 3 months before I was back to "normal" but I'm still enjoying the memories of the day, probably more so since it was such a break from my usual routine!

Oh yes, I passed out several times as a teenager and then learnt to recognise the warning signs that I was about to faint so well that I never actually fainted again. When my ears started to ring and my vision to grey out at the sides I would sit down regardless of where I was (in the middle of my own high-school graduation ceremony was probably the most embarassing!) It didn't really happen that often or affect the rest of my life, it was just a little quirky thing of mine that I struggled to stand in the heat or when I had my period. I then got mono/glandular fever and this little quirky thing started to take over my life. I was tired all the time and rather than feeling like I was about to faint a couple of times a month it would be a couple of times a week. I saw a wide variety of doctors who suggested mental health issues - I was stressed at work, I was depressed, I had anxiety. None of them ever took my HR and BP standing, only when I'd been sitting in their office for a bit and although my HR was a bit high and my BP a bit low it didn't concern them. They suggested I exercise more so I was brisk walking for an hour every day and going to then gym 3 times a week although my heart was pounding, I was terribly short of breath and dripping with sweat from very little exertion and I would have to go straight home to bed. I finally had a complete collapse and could no longer stand for any more than a minute before I was ready to faint. Eventually I was diagnosed with ME/CFS and continued to get worse and worse until I was bedbound for 2 1/2 years. Over time I learnt to manage my symptoms better, to stop overdoing things and to try to work within my limitations but I've never managed to become any better than mostly housebound. About 5 years ago I was reading an article online that described POTS and the penny dropped - THAT was what I had. My GP had never heard of it but took my HR and BP sitting and standing and was quite surprised by the rise in my HR. I got referred to a cardiologist who didn't seem to know anything much about POTS either - he regarded it as psychosomatic, I was lazy and didn't want to work so my brain had come up with a way to help me. I begged him for a TTT and he reluctantly agreed. The TTT was positive for POTS - I had an increase of over 70 BPM within 14 minutes. I then saw a more knowledgeable cardiologist who referred me to a rheumatologist who diagnosed me with hypermobile Ehler Danlos Syndrome. Have you ever been assessed for that? The two conditions often go together - I'd always known I was double jointed and prone to sprains and strains. Now I know that hEDS can make your veins super stretchy so blood pools in your feet and your heart has to pump faster and faster to compensate. There's no cure for hEDS but it's good to know about it as it is genetic and can been passed down if you decide to have a family. If you do have dysautonomia, @Pistolhas given you very good advice about extra salt and fluids and compression - waist high is best! Maybe you should concentrate on exercise which builds leg muscle to help with blood return to the heart - things like cycling (recumbent is best for avoiding orthostatic symptoms) or rowing and swimming is particularly good as the water helps provide a kind of compression which stops blood pooling. I've never found any meds that worked for me long-term but I'm in a minority - most people get some benefit from drugs that slow the heart (beta blockers or ivabradine) or that constrict the veins (Eg Midodrine) or that boost blood volume (eg Fludrocortisone). Please feel free to ask questions - it can be really frightening and lonely to have these kind of symptoms but there are many of us fellow sufferers out there!

I think it's part and parcel of dysautonomia. I have to close my eyes travelling in a car if I'm going at motorway speed as my brain just cannot process the images. Loud noises, bright lights, funny smells all affect me far more than the "normal" person. I just try and avoid what affects me as much as possible and if someone drops a plate next to me and I jump a foot in the air and then have to lie down to control my HR, I try to laugh about it.

I've had severe POTS for 17 years and I do understand exactly where you're coming from - that awful feeling where your whole body is screaming at you that something awful is about to happen and however much you rationalise that you are safe and there is no danger your body just doesn't believe that. I have to say that I agree completely with @Pistol - the more you push it, the longer and worse that feeling will last. After awful advice from several GPs, I continued to work and actually increased the amount of exercise I was doing which left me bedbound for a couple of years. Once I started to listen to my body and live within my limits the feeling happened less and for shorter periods of time. Find a routine and stick to it for a couple of months - it is easier to figure out your baseline tolerance for activity when you are doing the same thing every day. If you are having a good day don't be tempted to do more because you will inevitably overdo it and need 2 or 3 days to recover. Once you are comfortable with what you can do, you may be able to increase activity slowly once you are not wasting energy recovering from overdoing it. I do nothing spontaneously; I plan everything that is not in my normal routine with military precision! For example, if I am going out somewhere, I rest more the day before and drink extra water. I go at a time that suits me best ( for me that's between 11am and 3pm) and I make sure I am going somewhere within my limits of walking and with easy access to a bathroom - I'll phone and ask if I'm not sure. Once I've been out, I rest for the rest of the day and take it easy for the next few days until I feel I'm back to "normal". I can only manage one outing in the month so I have to plan and prioritise what that will be. Have you tried breathing exercises and mindfulness and meditation? None of them will get rid of POTS but when I'm having that awful feeling I try to do square breathing for at least 10 minutes - breathe in for 4 , hold for 4, breathe out for 4, hold for 4. Focusing on something else helps me ignore that feeling of doom! I think that the only thing that really helps you adjust to having POTS is time. I haven't had a good result from any meds; I did really well on Midodrine for about 3 months before it started to make my blood pressure dangerously high and I had to stop it and no other meds have helped me. I have learnt that I feel better when I try to accept my limitations and work within them rather than wasting energy fighting my body all the time. I have hEDS which causes my veins to be too stretchy and as there's no cure for hEDS, I think I am probably stuck with POTS for the rest of my life. I could get really depressed about that, but I'd rather make the most of what I am able to do - it's not what I imagined my life would be like but at least I am alive! That's not to say I don't have days where I wish I hadn't been born, but I try not to dwell on them. Try to be kinder to yourself - if you are constantly trying to control something that is outside your control, you will keep thinking you have failed whereas by trying to achieve the impossible you are just setting yourself up for failure.

I'm having it as well although I don't get the flu jab as I'm largely housebound and my family all get the jab so the chances of me getting flu are small. Considering Covid can trigger POTS in previously healthy patients I dread to think what sort of a flare it could create in someone who already has dysautonomia. As I don't get the flu jab and I am under 50 I probably won't get access to the Covid jab for a long time and will have a chance to see what reactions people are having to it before I take it.

Mine was 14 this morning! Mind you I felt awful, my BP was 84/70 and my HR 149 BPM. It's never more than 25 when I'm standing and I find the lower it is is a better indicator of how bad I feel than HR - sometimes my HR can be 130ish (which is good for me) but I'll feel worse than when it's 140ish (which is more normal) if my pulse pressure is less than 20. My GP doesn't like it - her advice is to lie down and drink a litre of water if it gets below 20 which usually helps a bit.

The only one that I've had was the massage of the carotid sinus which the doctor did before the TTT. He was a junior doctor and said to me, I need to do this test but it might trigger a stroke - is that OK? Luckily I'd read up on it and knew the risks of a stroke were tiny but I know if he'd told my Mum that she'd have been out of there like a shot! The technician rolled his eyes and apologised when he'd left - he said he would have to have a talk to him about scaring the patients unnecessarily!

Ooooh thanks for the reminder @DADofPotsSon. I'd forgotten about tracing my family tree - I started working on it years ago and got a bit stuck around the 1870s. I must get back to it and see if I can get any further back.

I love reading but I have had to change the books I read - no more literary fiction or historical biographies for me, I now read much easier stuff! I've found card making or scrap booking to be good POTS hobbies, but a top tip is to have a cupboard or shelf where you keep work in progress so you don't waste time and energy putting it all away and getting it back out again. I like to cross stitch and I taught myself to crochet watching YouTube videos and I love it (I've made some lovely baby presents for friends). I find socialising difficult (I can only cope with one person at a time and if I laugh or talk a lot my HR rockets) so I enjoy doing all these things on my own but I've joined online groups where I can talk about them with others.

I'm really sorry to hear that - mine wasn't too bad but I think that's because I'm so used to having severe symptoms. On my TTT my HR went from 96BPM to 172BPM within 15 minutes - the technician and doctor carrying out the test decided to stop it there as my HR was still climbing and they got scared! I've seen higher figures on my BP monitor when I'm in a bad flare so although I felt awful during the test I've felt worse! I think it's quite common for doctors to start POTS patients at a low dose and then work up if necessary. Personally I couldn't tolerate 2.5 mg of Ivabradine once a day without terrible bradycard.ia in the evenings but I think you can take up to 7.5mg twice a day. I've not taken Mirtazapine but I take Trazodone which is a tricyclic antidepressant like Mirtazapine to help me sleep. Some doctors prefer to use SSRIs or SNRIs in POTS patients as they can suppress the sympathetic nervous system so if you don't get on with Mirtazapine you might want to try something like Venlafaxine. You probably know that dysautonomia can be primary or secondary (caused by another illness). Presumably your cardiologist was thinking you might want to rule out that another illness is the root cause of your dysautonomia as if it is then treating the other illness can sometimes get rid of the dysautonomia. Things like Chiari malformation, cervical stenosis or some brain tumors can all cause POTS and if you are concerned an MRI of your head and neck would rule out any of these. However, about 50% of POTS cases are post-viral and if you were healthy before having shingles and have no other symptoms then you are probably in that category. I think I read somewhere that about half of post-viral POTS patients make a good recovery after a few years so fingers crossed you are in that category!

Probably cos none of them had ever heard of it!! Before I read about it myself and realised this was what was wrong with me, I had seen 3 rheumatologists, 1 neurologist, 1 clinical psychologist, 2 gynaecologists, a dermatologist and 2 gastroenterologists none of whom suggested I might have POTS or EDS. None of the GPs in my practice or even in my area knew anything about it (they do now!! - my own GP has a patient who's granddaughter was initially diagnosed with ME but after chatting to my GP they got her a TTT and low and behold - POTS!) My GP was quite helpful - she said that she would happily prescribe me anything that was a drug recognised in the UK (nothing experimental but anything off-label was OK with her) on a trial basis initially and if it worked then long-term. We discussed IV saline though and even if a US consultant would prescribe it, she didn't think I could get it - A&E wouldn't do it on a regular basis, district nurses are only allowed to do sub-cutaneous fluids which she didn't think would be any better than drinking in terms of peeing them back out so I'd still need a consultant to authorise a PICC line which she didn't think would be possible as they'd say the risks of infection etc were too high.

I completely understand - I paid privately to see the only consultant who specialises in POTS in Northern Ireland and he diagnosed me and set me up with a treatment plan consisting of the standard POTS drugs. He told me he couldn't treat me on the NHS as I don't live in the right area and referred me to a colleague. Once I'd tried all the drugs on his treatment plan without any success my NHS consultant wrote to him, telling him he didn't have enough experience to treat me and asking him to take me on as an NHS patient. He just wrote back saying the NHS trust won't allow him to treat any more POTS patients that live out of area and that whilst I could see him privately, he didn't see there was any point as there was nothing else he could suggest either! This was when I started researching consultants in the UK and the USA! I'm seeing my GP tomorrow to chat through my options - I'd ideally like to see Dr Blitshteyn a neurologist for New York who is doing phone or Zoom consultations for very little more than I'd paid my private consultant but there is not much point seeing her if my NHS GP wouldn't be able to prescribe her suggestions.... Could you ask your NHS consultant to refer you to the consultant you saw privately on the NHS as you are a complex case? Of course that probably means waiting ages - I've been waiting to see a consultant about my EDS for 4 years now! Or are there any neurologists who might help given you are having seizures (I assume you're seeing a cardiologist for POTS)?

Big hugs @CallieAndToby22 POTS is bad enough but POTS and cancer must be nearly unbearable. I can definitely relate to this! I'm 42 and have had severe dysautonomia since I was 26. My fiancé left me when I was 29 after caring for me through 3 years of severe dysautonomia where I was almost completely bedbound. I couldn't blame him, he was never going to have a normal life with me and he desperately wanted children which I clearly couldn't cope with! I have a law degree that I worked enormously hard for and had to give up a job that I loved yet I can't even manage to do voluntary legal work any more. I live with my parents and feel constantly guilty that I am spoiling their retirement but I just am not well enough to live on my own. I try to exercise but vomit every time I take a 10 minute walk as the rise in my heart rate triggers a gag reflex. I try so hard to think positive and I have improved a little - I am housebound rather than bedbound but leaving the house for any more than a couple of hours triggers a major flare. No medication has worked for me and no doctor seems interested in helping me so I just keep muddling on in the hope that one day things will get better....

@Pistolthis is pretty typical of the UK! POTS patients tend to get foisted on to EP cardiologists who have absolutely no interest in POTS and don't want to educate themselves! As far as they are concerned POTS is not life threatening, therefore you are far less important than their usual patients who require pacemakers etc never mind how badly POTS impacts on your life. @NinHave you had a look at the POTS UK website? This was where I found the consultant who diagnosed me- at least anyone listed in the site has an interest in POTS and some knowledge of it. Your current consultant is clearly neither able nor willing to help you so maybe he would be willing to refer you to someone who is!

Thanks for the link @Muon - really useful information! And thanks very much for the tip about getting rid of the waving girl @H. Potsland, Oregon- it was bugging me too!

This was me, I was given a ME/CFS diagnosis 20 years ago , fibromyalgia 2 years after that. I was given a vast variety of SSRIs and SNRIs none of which helped and referred for CBT and graded exercise neither of which led to any improvements and I have up on doctors. Fast forward to 2016 and after reading about POTS myself and begging a consultant cardiologist for a TTT I finally get a diagnosis of POTS and dysautonomia and then I find out I have hypermobile Ehler Danlos Syndrome which explained a lot! Fatigue has always been a very prominent symptom for me - I know I only started to improve when I broke the cycle of doing too much and then spending the next week recovering before doing far too much again! Try to find a baseline level that you can manage and stick to it. I also found the drug Modfinil helped me have enough energy to start to exercise. I started at a very low level of only being able to exercise in bed for 5 minutes at a time - I can now manage to do an hour of physio type exercise plus a 10 minute walk plus 10-15 minutes recumbent cycling every day. I have tried amitriptyline at a low dose (max was 75mg) for pain - it raised my resting heart rate and made POTS worse so I stopped but my Mum gets on very well with it and finds it helps her sleep if she takes it in the evenings.

Could you ask for a 24 hour BP monitor? That will measure your BP and HR regularly throughout the day. You could keep notes of when you feel worst during the day and see if there is any correlation.

You have to wonder what medical school some of these guys attended. I'd never wish what I have on my worst enemy but don't you wish that these ignorant doctors could spend just one day in our shoes! I don't mind when a doctor doesn't know something and admits it but I can't bear it when they don't know and pretend they do! I actually know of one GP in my area who used to deny that ME/CFS existed only to develop it himself. Karma.....?!

I think there are a lot more women than men diagnosed with POTS. This article suggests the ratio is 5:1 female to male although it is a bit out of date now https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2600095/#__sec1title.

Your diagnosis skills are vastly superior to his - he spent longer talking about himself and his wonderful career than he did asking me questions! He assured me that I had got ill because I couldn't cope with the pressure of my job (I used to be a litigation solicitor at a big London firm working 70 hours a week), and told me that I was deconditioned and lazy and that POTS was a psychosomatic illness that could be cured through standing against a wall for increasing amounts of time! Any wonder I went home and cried! I'd paid this guy nearly £200 (250 dollars) to insult me! Thankfully just to shut me up he agreed to do a TTT which showed a dramatic case of POTS and after my results I found a better cardiologist through POTS UK!

I completely agree, even other people with POTS who aren't as badly affected don't always appreciate that sitting can cause problems so it's really nice to see evidence backing up my experience! It's turned me into a toe-tapping fidget in the car which anyone driving me doesn't generally appreciate!

Have you been checked for hypermobile EDS? Joint pains (the ones in your face could be TMJ) and GI issues are pretty common in hEDS and I think something like 70% of EDS patients also have POTS. I always knew I had bendy joints (my party trick was doing the namaste behind my back) but I'd never heard of Ehler Danlos Syndrome. The first knowledgeable POTS doctor I saw (I'd seen 2 other cardiologists prior to him) took one look at my hands and referred me to a rheumatologist who knew a bit about EDS (I'd seen 3 before that who completely missed my EDS as I had no family history). He did the Beighton test on me, looked at my funny scars, my stretchy skin and my medical history and diagnosed me with hEDS. Weirdly although there is no cure for hEDS and I've not responded to any POTS treatments, I feel better knowing what's wrong with me. So many doctors dismissed my issues as being all in my head that like you, I started to wonder if they were right. Believe in yourself, it took me nearly 20 years to get a diagnosis but I never stopped looking. And try to find a new PCP that supports you!

Yep this is one reason why I really struggle to travel any more than 30 minutes by car. When I am sitting in the house I try to get up and move around at least every 15 minutes. If I can't move I will start to feel more POTSy, and my brain fog gets noticeably worse. I had to travel over an hour by car to see one consultant and by the time I got there I was pale and clammy, retching and had terrible tremors - of course he took that as evidence it was a mental health issue and that I had just made myself sick with nerves at the thought of seeing him! Never mind the fact that I improved considerably when I lay down to get an ECG!

That was why I went looking for the summaries, I couldn't listen to the lectures thanks to the time difference and I couldn't wait until November to see if there was any new research results! @Pistolthat is really good news from Dr Grubb!

Whoops! Thanks for spotting it!