cmep37

Hi @Chiaracan I just compliment you on your fantastic english (Ich kann nur ein bisschen Deutsch sprechen). Thank you so much for taking the time to reply - I am really pleased that telemedicine is working out well for you and well done on finding a treatment that works for you. Blair Grubb is one of the doctors I have on my "would love to see list" but his waiting lists are very long..... I am also considering Svetlana Blitshteyn and Satish Raj - has anyone any opinions on either of them? Please PM me if you don't want to/can't post publicly.

@Pistol it makes me really angry too - the NHS is great in some cases but in others it fails badly! It took me nearly 15 years to get a diagnosis and that was from my own research rather than any input from doctors. I have a letter from my cardiologist saying that he is at a loss as to what to do with me yet I have suggested a couple of things (Mestinon and IV fluids) and been shot down - all he can suggest is CBT to help me cope with a life of chronic illness!! After nearly 20 years of severe POTS I no longer faint - I know the signs well enough to sit down before I pass out so I do not need hospital treatment and it seems that my life of being housebound, struggling to cope every day is something they think I should just accept. There is just nowhere else for me to go - I have been to all the cardiologists in my country (Northern Ireland is very small so there are only 3) that treat POTS and they all sing off the same hymn sheet. I am not well enough to travel to the UK for treatment and honestly I don't know if any of the consultants there would be any better - mostly they are still stuck on the SSRIs, midodrine, fludrocortisone, betablocker, ivabradine mindset and I have tried all these without success. I am considering seeing a US consultant via telemedicine but I have several concerns - my GP says she will prescribe any drugs they suggest so long as they are not considered "experimental" but I am not sure how it would work in terms of tests that might be required or what would happen if I had an adverse reaction to the prescribed drugs and needed advice in a hurry. Honestly at the minute I just have no spare energy to figure out what I should be doing!

It sounds like it's worth a shot then - I am so fed up of just getting off to sleep and then waking up 30mins later needing a wee!

Nope this bugs my GP a lot, but in the UK the NHS don't allow GPs to give IV or blood transfusions any more! My GP could lose her license if she did. 6 years at medical school and they don't think they have enough training or experience...! I think it all boils down to a massive fear of litigation in the NHS but it's the patients who are losing out. This is really good advice - I used to worry about the effects of drinking too much water until someone on this forum suggested I try electrolytes . I use Nuun tablets for at least 2 litres of my 3 litres of fluid a day - they are pretty expensive though and I still seem to pee most of it out ..... I did a 24 catecholemine test a couple of years ago where you have to collect all your urine for 24 hours and out of about 3 litres drunk, I had peed out just over 2900ml! I wee 12-15 times a day and am up at least 3 times during the night. I haven't tried altering the angle of my bed though - do you think it helps?

My GP has investigated all the options to get me IV fluids but she's not found any way of doing it. The only place I can get them is in hospital and that requires a consultant's order and I can't get one of those! I've seen all the cardiologists in my area and the one I'm with was the best of the 3. When I asked him about IV fluids, he said "That's an American thing, we don't do that here! There is no need for them, you can get the exact same result from drinking" (this despite me telling him that I peed out everything I drank inside an hour). I have yet to hear of anyone in the UK getting regular IV fluids for POTS. I suppose I could stop drinking and go down to the ER really dehydrated, they would probably give them to me then but I'm bad enough and I just can't face making myself intentionally worse. I am a little better than I was a couple of weeks ago - I'm only vomiting a couple of times a week now rather than every day and my BP is better - more like 90/70. My biggest problem at the minute is fatigue - I am just dragging myself about yet at night I'm not sleeping - go figure!

I would love to get IV fluids - my GP would be happy to prescribe me IV fluids but in the UK, there is no way that she can. The district nurse can only give subcutaneous fluids and so that is all my GP can prescribe - I've tried them and they didn't do anything for me as like drinking, I just peed it all out inside an hour! I don't think I am actually dehydrated as I am drinking at least 3 litres of electrolytes a day and I'm generally managing to keep fluids down, it's solids I'm having a problem with. I've been to the ER numerous times in this sort of condition and because I am not obviously dehydrated and I am able to drink fluids I am just advised to do this - I've stopped going as there is next to no awareness of dysautonomia and when I ask for IV fluids they say there is no reason to give them (my cardiologist won't support me getting them either and he is the POTS "expert" in my area). My BP and HR are within normal limits when I'm lying down, despite my diagnosis they end up thinking I'm just suffering from anxiety and I end up even worse as the stress of sitting for hours in A&E trying to explain POTS to nurses and junior doctors only lengthens the flare. It's so frustrating - I am sure IV fluids would help me but I can't get access to them.

I've always had a problem with excessive sweating - as a teenager during my period I remember having hot flushes where waves of heat would sweep over me and I'd need to change my school uniform as my shirt was completely soaked through. I have ruined so many clothes with sweat and/or deodorant and been mortified at other people noticing the wet patches on my clothes under my arms, boobs and back . A few years ago my GP gave me Driclor which helped a lot but I was still aware I had excessive sweating. Fast forward to the last couple of months and I've been in a really bad flare - vomiting at least once a day, BP very low when standing (the worst I recorded was 62/43 on my monitor), HR consistently over 150BPM when standing and constantly in a grey-out when upright (you know the stage just before you black-out when you get tunnel vision and your ears buzz or ring), massive adrenaline surges all day every day and really bad bradycardia at night (40-44 BPM). Now normally when I'm like this my hyperhidrosis is awful, I'm dripping with sweat. This time I'm still getting the waves of heat but absolutely no sweat at all! We have had the hottest temperatures ever recorded in my area and my family are all sweating like mad but I'm dry as a bone! Has anyone ever experienced anything like this?

I've also got hEDS and POTS - I sympathise with you!! Any questions feel free to ask!

I couldn't manage without Zofran. Eating used to be a pleasure - now it is just something I endure as I struggle to keep a healthy weight. I am constantly nauseous and if I take Zofran 30-60 minutes before I eat the nausea subsides enough to allow me to eat. For the last 5 years I have retched and vomited most days after meals (for some reason lunch is worst) or when I have been talking a lot or laughing. It started one day out of the blue and is one of my worst symptoms - it is mortifying going to eat out when you start to retch in the middle of a meal. After a lot of tests and visits to several gastroenterologists, they have concluded that it is caused by my rapidly rising HR stimulating my vagus nerve and triggering the gag reflex. Unfortunately knowing what causes it hasn't led to them being able to treat it! Zofran is the only thing that has helped - it gives me an extra 5-10 minutes before the retching starts which doesn't sound like much but is often the difference between being able to retch in private and vomiting at the table! One of my most embarrassing experiences was lying on the floor of a very posh restaurant, vomiting into a ice bucket as I mistimed things really badly and didn't manage to leave the table in time! Other things that help me are ginger or peppermint tea, sucking boiled sweets, eating plain crackers - the same things you'd suggest to a pregnant lady with bad morning sickness really! I also take my time when eating and chew every mouthful well - if I swallow too big a bite or rush my food I will gag! I love soup and yoghurt as they slip down more easily - big heavy meals full of carbs are my nightmare! Unlike @Pistol I find drinking a lot with my food helps - we are all different!

I have had pretty good success with emptying properly if I sing a nursery rhyme in my head while I'm going - it was a suggestion from a friend of my Granny who is in her 80s with incontinence issues. It probably works on the same principle of distraction! Is it sad that because of my health issues I find I have way more in common with people of that age that people my own age?!

@dancer65I will definitely try this - all I was advised to do was wee bent over with my elbows resting on my knees and whilst this does help I'm still not empty @Pistolthis is exactly my experience! My brother has nicknamed me Piddles for this very reason!! I get so irritated sometimes that my brain and body can't distinguish between happy excitement and stressed anxiety - and with hindsight it has bothered me since I was a teenager as during an exam I'd have to go to the loo several times which raised a few questions! My GP believes that the urgency and frequency is coming from POTS and the incomplete emptying from hEDS - because my bladder is very stretchy it doesn't seem to contract properly and last year I was told I have the start of a pelvic prolapse (at 41!!) although not bad enough to treat yet... I do pelvic floor exercises religiously as I don't want my nickname to turn into Puddles!! @CallieAndToby22I wonder if I can persuade my GP to let me try this - does it make the bladder nerves less sensitive?? Oddly I have the opposite problem with my bowel - the nerves there are not sensitive enough and I often feel not urge to go even when I definitely do!! My BP this morning was 85/72 (I'm in a flare) and a med that helped my bladder issues that also raised my BP sounds really helpful!

I couldn't take low dose (Elavil) for pain for exactly this reason @Elizaangelica - it raised my resting HR to low 90's which made my POTS awful - I was still experiencing the same 70-80 BPM increase when standing so my HR was hitting 160-170 all the time!

Wow - that is good news! 3 times a night to the loo is a good night for me - often it's 5! I've been told it's just overactive or irritable bladder too - I feel like I need to go all the time and when I've been I struggle to get my bladder completely emptied. I suppose the vast amounts of fluid I have to drink doesn't help either!

Don't get too downhearted - I think your level of recovery can depend a lot on what caused your POTS @CDNPortGrl I do know of a number of people with post-viral POTS who have returned to pretty much normal lives, especially once they got appropriate treatment. Don't forget a lot of us on the board are either newly diagnosed or else pretty severely affected - people who are less badly affected are off living their lives rather than posting here!! I have POTS secondary to hEDS and as I've been severely affected for nearly 20 years now I know exactly where you are coming from about grieving your previous life. I would say it took me about 5 years to mostly come to terms with it and some days I still struggle. I can't do meditation either - I do square breathing instead. Breathe in for 4, hold for 4, out for 4, hold for 4 - I find focusing on counting means you can't think of anything else and it does calm me down.

Big hugs Merkat - I am so sorry the appointment didn't work out the way you had hoped. I saw a rheumatologist and he said exactly the same thing to me - must be what they learn at medical school in the UK! I understand you feel you don't have the energy to complain about the way you were treated (honestly I'd probably feel the same in your shoes) but in the apst I have forced myself to complain about particularly unpleasant doctors so other people don't have to go through what I did! Is there anyone else you can see? - I know on the NHS you sometimes don't have a lot of choice. Could your GP refer you for an MRI? Could you manage to travel to see the specialists at the Autonomic Unit at University College London - I think your GP can refer you to them and they are supposed to be the leading neurology clinic in the UK - they should at least be prepared to listen to you?! I actually got so fed up of being diagnosed with anxiety and stress and depression that I went down the route of going to the mental health people and getting them to assess me. The clinical psychologist gave me a clean bill of mental health, he said he didn't know what was wrong with me but it wasn't depression or anxiety and he believed it had a physical cause and after that the minute a doctor said it's all in your head I could say no I've been assessed and the mental health specialist says there's nothing wrong with me so think again!

Hindsight is a wonderful thing - no point beating yourself up, just remember it next time you are tempted to overdo it!!

My cardiologist was very keen on Ivabradine and touted it as a game changer for a lot of people like me who couldn't take other BBs because they lowered BP too far. My Bp runs low normally (100/60 ish) so when I took propranolol although it reduced my standing HR by about 20 BPM it also dropped my BP into the 80/40 range which was just as bad if not worse than the 140+HR. Ivabradine did not do this but despite still being POTSy in the evenings my resting HR was high 40's low 50s - 3 weeks of the lowest dose of Ivabradine and by 4pm until 8-9am it was mid to high 30s which I just couldn't tolerate. It's never quite gone back to how it was before Ivabradine but is now low to mid 40s in the evenings and at night which isn't pleasant but is tolerable. If you don't have that low HR in the evening problem (and to be honest I've not heard of many POTSies who do!) then I'd definitely try it - here in the UK a GP can prescribe it, you don't need a consultant's prescription although the situation in the US is probably different.

Yes exactly, the thing that bugs me most now is not that he siad it but that I was so shocked I said nothing back! You just don't expect to be insulted like that do you? I really wish they'd stop and think how they'd feel if someone said that to them but they seem to think their medical degree is a licence to be rude!

Good luck - I know it has really helped a number of people!

Have you tried doing a poor man's tilt table test? That will give you a better idea of whether you would meet the criteria for a POTS diagnosis or whether your symptoms are for example down to BP issues rather than increased HR. All you need is a BP monitor - one of the cheap models is fine. NASA-Lean-Test-Instructions.pdf (batemanhornecenter.org). This test assesses 2 types of orthostatic intolerance: Orthostatic hypotension (OH) (lowered blood pressure upon standing) was defined as a decrease in systolic blood pressure (SBP) 20 mm Hg or more, or a decrease in diastolic blood pressure (DBP) of 10 mm Hg or more in the first 3 minutes. Postural orthostatic tachycardia syndrome (POTS) was defined as a sustained heart rate increase of >30 beats per minute (bpm) within 10 minutes of standing or a heart rate of greater than 120 bpm.

@Knellie I think a lot of us have been where you are - I have left many appointments with so called "experts" in tears because they just wouldn't listen to what I was telling them. One particular highlight was the Cambridge-educated cardiologist who spoke to me for 5 minutes and told me I didn't want to work because I was too lazy (I had specifically said how much I missed my job) and therefore my mind was creating these physical symptoms! Keep persevering - you will eventually find someone who will believe you. I would get myself on a list to see a good POTS doctor in your state, what seems like ages on the waiting list will pass and at least they will have had some experience of treating patients like you.

So having had POTS for ages I think I'm pretty good at avoiding stressful situations - I bite my tongue rather than say something that might start an argument, I only watch TV programmes that I know aren't noisy or scary, I avoid places with bright lights/loud noises and if I need to speak to my bank or service provider or make a complaint about poor service etc I do it via letter or email rather than the phone if at all possible. But there are times when regardless of how careful I am I can't avoid stress. Because I can't live independently I have a property that I rent out which apart from benefits is my only source of income and I am having a lot of issues with my tenants who have just moved out. They have left the place a complete mess and are denying they are at fault. It is really getting to me - it is so hard for other people to understand that because I am so full of adrenaline normally, it takes very little more to tip me over the edge. I know my parents think I am over-reacting and possibly I am but I don't know how to stop! I am drinking fluids like a fish, square breathing and resting as much as possible but the constant adrenaline surges are killing me and I am concerned I am heading for a major flare. Any wise advice??

I was told to take it in the morning too Sarah - I took it with breakfast rather than before I got out of bed though as I struggle with nausea and found it upset my stomach if I didn't take it with food!

All I've read is that the brain is a very poorly understood organ and that often doctors prescribe things that they have seen work in a lot of patients without really understanding how or why they work! I know it's hard to think about taking something that could possibly make you worse but from experience sometimes you just have to bite the bullet and try things and see how you get on with them. Dysautonomia is weird - sometimes things that "should" help us do nothing at all or make us worse whilst things that "should" help us don't! My cardiologist suggested I try Ivabradine despite my low resting HR at night as he'd had good results with it in other patients - it didn't work for me (it dropped my HR into the high 30s low 40s) but I don't regret trying it, even though I had a horrible few weeks because I don't have to wonder if it would have helped me. I think as long as you start on the lowest possible dose and stop as soon as you have bad side effects, you have to accept there are risks with any meds. Unfortunately we POTSies are very prone to side effects - I know , I haven't found any meds to help my POTS symptoms without the side effects being worse than the symptoms but I have tried plenty and would be prepared to try plenty more!

I've not tried it so can't comment on how it affected BP but I wondered if you had considered Ivabradine (Corlanor) instead - it has no effect on BP and is supposed to help with fatigue. I couldn't take it as it reduced my already low HR but I know several people who had good results with it.