cmep37

Are you on other meds for POTS as well as the BBs? If so could they be enough on their own to control your HR? Or maybe there was enough BB still in your system to stop big HR rises - do you take extended release BBs? How did you feel - still POTSy or normal? What about your BP - how was it?

It's trying to find your own personal alarm system - sounds like hot flashes are one of yours! They are a late warning symptom for me - if I wait until I feel that wave of heat it's generally too late for me to avoid a faint. Visual and audio disturbances are my early warning - when I start to get tunnel vision/stars and/or a ringing/high pitched whine in my ears that's my cue to hit the decks. Sadly the only thing that teaches you is experience; the more often it happens, the better you are at recognising the early signs and learning how to avoid the full blown black-outs....

Is it helping reduce your HR? Is the 110/120 BP your top or bottom figure? I found Midodrine really helpful - I took 2.5mg twice a day and it reduced my HR by 20-30 BPM but after a few months on it I developed rebound hypertension where as the dose wore off my BP would rise to 160/120 which gave me terrible headaches and pain at the base of my skull. I tried reducing the dose further but had the same problems so reluctantly I stopped taking it.

Well done @MikeO- great achievement! Glad to hear the change in medication has helped, so much of the time it's trial and error until you hit on the right combination for you!

I also have terrible issues with nausea and lack of appetite - I'm assuming you've tried all the usual stuff like ginger and dry crackers. I find when the nausea is really bad I can only manage soup or yoghurt but both of those can be quite nutritious depending on what flavours you choose. Zofran/Ondansetron is the only thing that allows me to eat without throwing up half an hour later. I take 4-8mg half an hour before meals and it works most of the time although I still vomit 3-4 times a week. The other med that helps me is Motilium/Domperidone - it helps with gastric motility and when my digestive system goes on strike in a flare it generally gets everything going again! If you are having colon spasms because your colon is struggling to move food along it might help. I don't know how people with MCAS/food allergies react to either of these drugs but I'd say it would be worth a shot if you can get a doctor to prescribe them (I know doctors in the US aren't that keen on Domperidone whereas in the UK it's seen as fine for short term use!).

👋@JennKaysorry to hear you are also having problems with bradycardia. My bradycardia was definitely worse when taking Ivabradine and Propranolol so I would agree that BBs could cause it or worsen an existing tendency to it. Actually mine is not as bad since having Covid last Christmas - it's now once a weekish rather than every evening and even when I am bradycardic, my HR doesn't drop quite as low - more mid 40s than low 40s. However it's swings and roundabouts as my tachycardia is worse - my average HR after standing 5 minutes used to be high 130s,low 140s, now it's mid to high 140s. In terms of my cardiologist, I finally saw him yesterday and to say the appointment was not a success would be an understatement! (I won't bore you with all the details but you can read about it in the thread Want to Scream if you are interested). He seemed to think the HRs I was experiencing shouldn't have caused me any issues, despite my GP being concerned by them. There was no way he would have agreed to a pacemaker!

Sorry in advance for the rant! I had an appointment with my cardiologist this morning - I haven't left the house since July, the hospital is over an hour away in the car and my appointment for 9am but I decided I needed to go as on the NHS in the UK you can only miss 2 appointments before the consultant refuses to see you and refers you back to your GP. I wasn't expecting much, he had told me last time that I had tried all the available meds without success and he didn't know what else to do with me but I did think he would at least be pleasant about it. Instead he made me feel like I was malingering, that I shouldn't be experiencing the level of symptoms I am, that the meds I tried should have worked for me and that it is all my fault I am sick. My appointment didn't start well - I was late and had to walk quite a distance so by the time I got there I was retching loudly and had to lie on the floor. He sent a nurse to tell me that if I didn't calm down I would have to go to A&E - I was perfectly calm, that was how my body usually react to being upright for too long but as always it's assumed to be anxiety. Thankfully the nurse listened to me and found me somewhere to lie down for half an hour by which time I felt much better. He looked at my last Holter (24 hour HR monitor) and said there was nothing much wrong with it as my average HR was 57. I was having it done for bradycardia, not tachycardia so treated it like a usual day and didn't spend that much time on my feet (if I spent all day walking about I would trigger a massive flare). The last Holter I had done for tachycardia, I did try to behave more like a normal person and my average HR for the day was 102BPM with multiple episodes of tachycardia over 140BPM but he completely ignored that one. Even on this Holter there were multiple occasions my HR increased by 40-50 BPM inside 5 minutes where I had indicated on the report that I was standing and when I first got out of bed it increased from 65 to 152BPM in the space of 5 minutes. He dismissed the bradycardia as well - he said everyone's HR drops at night when they are sleeping - I said that I wasn't sleeping, I was awake until 2 am at least that although a HR of 42 may not be that bad to him, I am very symptomatic and feel like an elephant is sitting on my chest. His next comment was that my HR dropped but didn't stay low - I explained it didn't stay low because it is so unpleasant I get up and move around to increase it as I still have POTS even when I am bradycardic. Actually now I'm home looking at the Holter results it had dropped to 45BPM at 9.30pm - I don't think that's normal but now he has me questioning myself? He then commented that with these sort of HRs he can't understand why I couldn't tolerate Ivabradine which I stopped taking due to increased bradycardia. He then proceeded to say that on my TTT to diagnose POTS my HR had only increased by 32 BPM at 5 minutes, so I barely met the criteria - I was really angry then and told him that my HR had started much higher than normal as I had walked through the hospital and wasn't given enough time to rest before starting the test and that the doctors decided to stop the test at 14 minutes as my HR had reached 172 BPM (an increase of 74BPM) with no sign of slowing. He replied said yes but your BP had dropped as well (it had but only slightly from 132/86 to 114/82) and it's not supposed to do that to be diagnosed with POTS. I then asked him if he was telling me I didn't have POTS so he backtracked and said that I did but you got the impression he wanted to add "just not as badly as you are making out". I said that I had found a hospital in London with a clinic specialising in autonomic dysfunction and asked him if he would write to them and ask for advice on treatment. He refused and said that even if they agreed I had autonomic dysfunction (IF?? I didn't think there was any doubt. about it ...) there was nothing more they would do that he hadn't already done because he was following national best practice guidelines. I then asked his views on telemedicine - I am considering seeing Dr Blitshteyn via the internet and I explained her qualifications and experience to him to which he said it was up to me but that he believed American medicine is all guided by money rather than what is good for the patient and that people who may seem reputable on the internet are often not what they seem. I said many people on this support group had been helped by IV infusions and he said he would not support them, even if Dr Blitshteyn recommended them as they were only for acute situations and that I should be very careful not to believe everything I read/heard online. He doubted she would be able to do any more than he had but he would review any reports she made if I sent them to him and my GP could prescribe any meds she suggested. When I said one of my biggest problems was retching and vomiting he said he had never heard of a heart issue causing that kind of problem and that he would refer me back to gastroenterology even though as I explained to him they referred me to him saying it was a cardiology problem - I said I felt like a hot potato that everyone picked up then passed on as soon as they could. I wouldn't have minded if he had said I'm sorry I can't help you, I know you are ill but I don't know of any other treatments we haven't already tried. Instead I am left feeling like he believes I am not that bad, that I am exaggerating my problems and that I have been refusing to take meds that he believes should have worked. I told my parents I don't see the point in seeing him again - this appointment will probably lead to a flare and I have gained nothing from it..... except a desire to scream!

My Mum, Dad and Granny all got their booster on Wednesday - Mum and Dad had previously had 2 Pfizer vaccines, Granny 2 Astra-Zeneca vaccines but all got the Moderna booster which I think is half a normal vaccine dose. Mum spent all yesterday in bed - she got up at 2am on Thursday morning to go to the loo, fainted, ran a very high temp all day, bad headache, nausea, muscle aches and pains BUT she is back to normal today. My 85 year old Granny also had side-effects - very sore arm, fever, muscle aches but is also fine today. My Dad also got his and we joked his must have been water as he was completely fine! All agree that they wouldn't hesitate to get the booster again - 24 hours of symptoms is much better than having Covid!

I know several people in their 50s and 60s with POTS so I'm afraid it is something that doesn't disappear as you get older - I'm not sure if their symptoms are worse or better than when they were younger. I have POTS that is caused by hEDS and am 43 years old. I have had POTS since I was in my early teens, severely affected since my mid-twenties and my symptoms have not really changed much in that time - some are worse, others better and even more I have just got used to! I wasn't diagnosed until about 5 years ago when I found out about POTS myself and suspected I had it (my GP had never heard of it), before this I was told I had ME/CFS and/or fibromyalgia, depression, anxiety, burn-out etc, etc. I was referred to a cardiologist who sent me for a TTT which confirmed my diagnosis - the doctors stopped the test at 13 minutes when my HR hit 172BPM (I started at around 80BPM) with no sign of slowing down. He suspected hEDS after seeing my hypermobile wrists and fingers and a rheumatologist confirmed this. According to my cardiologist, POTS caused by hEDS is very unlikely to spontaneously resolve or improve the way that post-viral POTS can. That is not to say the symptoms can't be treated successfully so don't get too downhearted. People with POTS caused by hEDS often respond well to Midodrine which aims to tighten the veins that are too stretchy because of hEDS. I had the best spell I have had with POTS whilst I took it for about 4 months before developing rebound hypertension and having to stop. I am also worried about aging with POTS and dysautonomia - I don't know whether the usual stiffening of arteries etc that happens with age will help or just make things worse.... I also worry about how I am going to manage as my parents get older (they are late 60s) - currently I live with them and rely on them a lot for meals, laundry etc. I can manage on my own for 2-3 weeks when they go on holidays but I always have a massive flare afterwards as I am operating far beyond my limits!

🤗@Pistol however long you have had POTS for, you still have to wake up every morning and deal with the fact that you have it today! And if it's been a while since you flared and you've been managing better, it's always more difficult to go back to that level of symptoms again... You are doing all the right things and the flare will subside, it's just miserable waiting for it to pass. Be kind to yourself and hibernate as long as you need to - you will come out the other side!

@MikeOThanks for telling me how you've found taking Pyridostigmine. The drop in resting HR is why I'm not sure about it - although I experience significant HR rises with POTS (I average around 150BPM after 5 minutes of being upright) a few years ago I developed bradycardia in the evenings. My resting HR can drop into the low to mid 40s by 9-10pm (at this time of the evening I can meet the definition of POTS with a HR of 72BPM which is crazy!) . If Pyridostigmine dropped my resting HR by 10BPM like yours, I would be heading for the ER! I had to stop Ivabradine after a month's trial for this reason - it helped the daytime tachycardia but even at the smallest dose it increased the evening bradycardia to the point where I couldn't deal with it. I would still like to trial Pyridostigmine, if only to rule it out as something that might help - the idea of being less constipated and having less dry eye/dry mouth issues would make it a miracle drug in my book! Mind you it would need to be a more than a miracle drug to do anything about my tone-deaf singing voice (of course I think I sound like Adele, it's just everyone else who thinks I sound like like a strangled cat)😹

I know exactly how you feel - to be honest I went for at least 10 years feeling like I never really slept. I would fall into a light doze around 3am and jolt awake after 30-60 minutes and then be awake for another couple of hours before dozing off again for another 30-60 minutes and that would be it. The thing that helped me is low-dose Trazodone. I take 100mg which is less than the usual dose for depression. It does help me if I take it early enough - I was told to take it at bedtime but that doesn't work for me, I need to take it around 6-7pm in order to get to sleep around midnight. My rheumatologist suggested Amitriptyline or Doxepin but I wouldn't recommend them myself, they increased my resting HR and gave me a terrible dry mouth and eyes but my Mum and Granny both find Amitriptyline helpful for pain and sleep. I still don't sleep brilliantly, I don't sleep that deeply and I do wake up a lot but I get at least 4 hours a night now and sometimes as much as 6 hours which makes a tremendous difference.

@Rexie thank you - I would like to try Pyridostigmine but my cardiologist says he doesn't know enough about how it works to prescribe it! I will print some of this information out and ask him if he will read it - he has only a few POTS patients, none of whom are as severely affected as me and I feel he has given up trying to treat me but there are no other POTS doctors local to me that I haven't already seen or that are any better! I found this very interesting. I never really listen to music any more as it makes me feel very jittery and anxious. Classical or easy listening type stuff is just as bad as more upbeat music and the jitteriness lasts for at least a couple of hours. From what you say it must trigger an exaggerated sympathetic response in me. Oddly if I sing I don't get this anxious feeling but I'm a really awful singer so my family would not be impressed by me doing this every day!

Hugs @merkat30 Haven't heard from you in a while and was hoping you were doing OK. How is your MCAS - have you seen any improvements there?

@MikeO I think I've got my IBS beaten into submission and suddenly it starts up again. Flares definitely set it off and like you I tend more to IBS-C than IBS-D although when it's really bad I can be both in a single day! When I am really bradycardic at night it barely bothers me, when the bradycardia isn't so bad it's back in full force so I definitely think my IBS is linked to the sympathetic NS being dominant. Have you had any med changes since your 24 hr BP monitor - sometimes that can set off IBS?

Of course it is POTS, I'm not sure why they make that distinction for age! If the rise in HR is sustained, it's clearly not normal. I assume as well as meds you got the usual advice on increased fluids (electrolytes are better than plain water), increased salt, compression tights (waist high are best, they are the least sexy things you ever saw but do help) and as much exercise as you can tolerate - things like swimming and recumbent cycling are good.

@PistolI think some doctors in the UK like to see a 40 BPM rise if you are aged between 12-19 - I am not sure if that applies to you @Knellie ?

Do you ever wonder if you'd been diagnosed earlier whether you'd have responded better to treatment? By the time I was diagnosed I'd had severe POTS for about 15 years (after standing about 5 minutes my HR more than doubles to 140BPM+, on my TTT I reached 172BPM at 13 minutes before the doctor got worried and decided to stop the test as there was no sign of my HR slowing) - I think my body thinks this was how things are supposed to work! I have failed every single med I have tried - Fludrocortisone (no change), Midodrine (great for 4 months then I developed rebound hypertension and had to stop), BBs (lowered HR a little but dropped BP too low), Ivabradine (lowered HR better but gave me bad bradycardia in the afternoons and evenings). I often wonder if I'd been prescribed meds when I was first symptomatic if they would have worked better or if I'd still be in the same boat! I guess I'll never know... Same old story isn't it! My cardiologist has basically given up - he says I just have to live with it. I'm seeing him again in a few weeks and am considering pushing him to refer me to one of the big London hospitals but maybe that's a waste of time - I honestly don't know. I am just so fed up of always having to be the one driving things and suggesting things that he usually shoots down - he won't let me try Mestinon (doesn't understand how it works!) or IV saline (risks of infection too high). Is it possible for you to get a second opinion on the left atrium enlargement?

At least you still have a sense of humour though....! I'm about 30 years in - first had mild symptoms as a teenager, which worsened until I had a complete collapse in my mid-twenties although I was only diagnosed with POTS and hEDS 5 years ago when I was 38. I'd seen about 20 consultants from a wide variety of different specialities over the years, none of whom ever suggested POTS or HEDS as a possibility - instead they told me I had ME/CFS, fibromyalgia, depression, anxiety, burnout etc etc. I ended up diagnosing myself after reading an article online and realising that I had every single symptom of POTS which then led me to hEDS!

I hear you @MTRJ75when I first got really symptomatic I was brisk walking at least 3 miles most days plus swimming a couple of times a week. I wasn't in bad shape. When I saw my doctor they suspected depression/anxiety and advised me to exercise more - that did not help, just triggered a complete collapse!! I do try to keep as active as I can but like @Pistol I am very exercise intolerant and a 5-10 minute walk plus an hour's recumbent physio exercises every day is about all I can manage without triggering a flare. I did try the Levine protocol but I could never make the transition from recumbent to upright exercise without flaring despite trying several times. I felt worse not better doing Levine, I think it was too much for me yet as you say all the experts talk about exercise without really explaining how/what to do!

If you have a positive TTT you have POTS - BBs don't help every POTS patient! I found 20mg of propranolol did reduce my HR - not a great deal, just about 10-15 BPM and as my normal standing HR is 140BPM+ it didn't make that much of an impact. My main problem with BBs was that they dropped my BP too low - my cardiologist tried me on a 10mg dose of propranolol but I was still greying out/fainting a lot due to low BP so we decided to stop. The lower dose of propranolol was just as effective at reducing my HR though. Ivabradine did control my HR better (reduced by 20-30BPM) but I got really bad bradycardia in the afternoons and evenings on it so that was another drug that I tried and failed. However it is a great drug for lots of POTS people and definitely one worth trying if your cardiologist would agree. There is also Florinef and Midodrine - have you tried either of those yet?

A 24 hour BP monitor is a good idea @MikeO. Mine showed just how badly my BP fluctuates - during the day the highest BP recorded was 137/122 at 10.30 am and the lowest 83/55 at 4pm. It wasn't any better during the night - at 2am it was 75/51 but by 6am spiked to 168/110. Just a day in the life of a person with dysautonomia! Despite these wild swings from too high to too low my average BP was 116/76 which convinced my doctors not to treat the highs; I was just told to rest when I needed to.

Just a friendly warning for anyone reading this - please think carefully about taking Cipro if you have a history of hypermobility. I know of many people with hEDS/JHS who have seen a massive increase in joint instability after taking fluoroquinolone antibiotics. There is loads of information online if you google cipro and EDS. My GP has put it in my notes that fluoroquinolones like Cipro are a last resort only to be used on me if all else has failed!

Well done @MikeO- that's really good news, fingers crossed it continues! It's funny how experimenting with the time of meds can make such a difference. I was told to take low-dose Trazadone at bedtime to help with my insomnia but I only started to feel sleepy in the early hours of the morning so I decided to start taking it earlier - taking it between 6-7pm works much better for me.

I also flare really badly when having my period - as a teenager it was the only time I had POTS symptoms so I assumed they were caused by a gynaecological problem (I did have endometriosis). It was only as I got older and began to have symptoms at other times of the month that I realised they had another cause. I have a Mirena coil fitted which stops my periods for a few years after it is inserted (I'm now on my 3rd and waiting to have my 4th) and when I was younger I ran 4 packs of the pill together and only had 3 or 4 bleeds a year. If menstruation is a trigger for you to flare it might be worth having a chat with your GP to see what they would suggest to reduce/stop your periods. Please keep drinking plenty of fluids, eat salty foods (unless your BP is high and your GP advises against it) and consider compression tights if you aren't already using them - they do help with the return of blood. Be kind to yourself - POTS symptoms can be very frightening but it becomes a vicious cycle in that the more anxious you are about how bad you feel, the worse the symptoms get!