cmep37

For anyone who couldn't attend due to the time difference, who lacked the time or energy to sit through the lectures or who wants to have an idea of what the speakers are going to discuss before downloading the lecture at a later date, I found this website which provides a really useful summary of most of the main speakers : https://dropitlikeitspots.com/dysautonomia-international-conference-2020-day-1-and-2/ https://dropitlikeitspots.com/dysautonomia-international-conference-2020-day-3-notes/ https://dropitlikeitspots.com/dysautonomia-international-conference-2020-day-4-notes/

@KnellieI do sympathise. I've had tests to rule out stomach ulcers, cancer etc - an upper GI endoscope and a barium swallow. The gastroscopy showed a lot of inflammation; not surprising when I vomit most lunchtimes although that is down to a problem with my vagus nerve being stimulated by my high heart rate rather than gastroparesis. I've never been tested for gastroparesis but I tend to have symptoms (nausea and vomiting up undigested food) during a bad flare and my GP treats me as though I was formally diagnosed as the waiting list to see a gastro in my area is now 4+ years. She prescribes domperidone for the duration of my flare (usually a fortnight) which really helps.

Thanks for the reminder Pistol, I knew the deadline was coming up but hadn't realised it was today!

Fatigue is definitely one of my biggest problems - long before I had ever heard of POTS my diagnosis was ME/CFS. I also really struggle with stamina. I can do a task like cleaning the bathroom for 5 minutes without a problem, 10 minutes and I'm still fine but 15 minutes and it's like I hit a wall. Doctors have told me that if I slowly build up activity over time the stamina will come - 20 years later I'm still waiting! I've always thought part of the reason for my fatigue was poor sleep. I am like the Princess and the Pea - I never get into a deep sleep as I jolt awake at least every hour and any slight noise wakes me. Trazadone has helped so that now I do get a bit of deeper sleep nearer the morning. One of my friends on seeing my Holter results said that being me was like doing high intensity interval training all day - I would stand up, my HR would shoot up to 140-150, I'd get too faint and short of breath after 5-10 minutes and have to sit down, then 10 minutes later I'd stand up again and the cycle would repeat itself. She's a bit of an exercise buff and says that HITT means your body uses more oxygen and burns calories long after the exercise is over so maybe that's why we are tired out of proportion to the exercise we have done.

Could it be Meniere's disease? I think it can sometimes be triggered by an infection. Google it and see if the symptoms fit.

Low pulse pressure is pretty common in people with dysautonomia but I'm not sure if you've been diagnosed with that as well as SVT. Is your HR very high when your pulse pressure is low? I think very high heart rates can cause low pulse pressure but I'd definitely mention it to a cardiologist I have hEDs and POTS and lying down my pulse pressure is fairly normal (around 40) with my BP 100/60 but when I'm standing it is never more than 25 - it is usually around 20 with my BP 100/80 but when I'm in a POTS flare it will be more like 15 and I've seen it as low as 12 with my BP either low systolic (80/65) or high diastolic (125/110). My cardiologist said it's just a sign that there is not enough blood for my heart to pump round my body when I'm upright cos it's all stuck in my feet thanks to my stretchy EDS veins! The lower my pulse pressure is the worse I feel so I do really sympathise with you. Pistol is right though - the only thing that really helps me is reducing activity in a flare and trying not to panic - after 20 years I've finally learned that getting upset and worried about how awful I feel only makes it last longer...

I discuss this every year with my GP and we've always decided against me taking it and making my parents get it instead! I'm mostly housebound and so my greatest risk is them giving it to me. Having said that I went to a friend's birthday party for a couple of hours in February this year and picked up a nasty cold which turned into pneumonia - it took 2 antibiotics to clear up and led to a really bad POTS flare. My parents are therefore keen on me getting a flu jab this year - I just don't know what to do for the best!

I really sympathise with you - studying with POTS is no joke. I did a history degree with the Open University when I first got ill and it took me 8 years part-time as I had to defer exams a couple of years when I was in a bad flare. Figure out what the best time to study is - for me I worked best between 11 am and 1pm. The only thing that helped my memory was constant repetition - I would write revision notes and then summarise them and read the summaries multiple times a day. The other thing that might help is asking your doctor to prescribe Modafinil/Provigil which is a narcolepsy drug that stimulates the brain. I know when I was studying for my history degree it really helped improve my concentration, but I can't remember (!) if it specifically helped my memory... Good luck and don't give up!

I've also had terrible struggles with insomnia - my rheumatologist suggested I take Amitriptyline (anything up to 75mg) and it did help my sleep but it raised my resting HR and made POTS worse so I stopped. I now take 150mg Trazodone (a low dose anti-depressant), I need to take it by 7pm in order to get to sleep by midnight but I definitely do sleep better, prior to all my bradycardia problems I would get about 3-4 hours of uninterrupted sleep which was more than I'd had in a decade! I still get adrenaline surges but only in the morning , not during the night.

Thank you everyone for taking the time to reply! @Sushi and @Krista I am really glad to hear your pacemakers have helped you. It is nice to not feel quite so alone - when you say you have POTS and bradycardia most people assume you meant to say tachycardia! I still need to do a lot more research into dysautonomia consultants and pacemakers but of course I'm still in a flare so I've no spare energy at the minute! As my GP is forever reminding me having a chronic illness is a marathon, not a sprint so I just need to sit tight for a bit and wait until my autonomic system calms down a little before getting stuck in!

Thanks very much @Pistol. I just spoke to my cardiologist's secretary who has told me he's looked at the Holter results but doesn't think they merit an urgent appointment. I asked her what would and apparently it's got to be life threatening which I agree my bradycardia isn't. It is having a really detrimental effect on my health and quality of life though but that doesn't seem to matter. His secretary was blaming coronavirus for the long waiting lists (my usual routine appointment which should have happened this summer is now unlikely to take place until 2022 at the earliest) Of course he's still seeing private patients! I'm not sure it's worth paying £200 to see him though as if he doesn't consider my case urgent he's unlikely to do anything to help me, just reassure me that the bradycardia won't kill me which I already know! My money might be better spent seeing a different consultant - I need to find one that does web or telephone consultations!

I was diagnosed with POTS over 4 years ago (I've had symptoms for about 30 years but was always misdiagnosed). I'm not on any medication for POTS as I've not been able to tolerate anything. In the last 6 months as well as the POTS tachycardia, I have also developed increasingly worse bradycardia in the afternoon, evening and at night. My GP arranged a Holter to see what was going on and I got the results today - my HR ranged between 37 - 153 with episodes of sinus tachycardia and sinus bradycardia but no arrhythmia. My HR follows a fairly predictable pattern - when I get out of bed my resting HR is around 60 and when I stand for around 5 minutes it will more than double to 140+ BPM. It continues this way until late afternoon when my resting HR drops to low 50s - it often picks up again around dinner time but by 7pm it starts to drop into the low 50s again, by 9pm it is mid to high 40s and by 11pm it is low 40s/high 30s. It stays this way during the night until it begins to rise around 6am although during the night I get sudden bursts of increased HR every couple of hours where I wake up gasping and my heart racing. I am still POTSy during the bradycardia - if I stand up my HR increases by more than 30 BPM. I am symptomatic from about 52BPM - I am short of breath, very fatigued, mentally not with it, mild chest pain, dizzy and when my HR is low 30s I feel very unwell and like I am going to pass out. In general, my levels of stamina and ability to do things has dramatically declined from this time last year - I can no longer do anything in the evening like go out for a meal or do crafty stuff or phone a friend and even when I'm not bradycardic I am still much more fatigued than in the past. I am waiting for an appointment with my cardiologist but my GP has said that in another patient without POTS she would be expecting them to suggest a pacemaker. Everything I have read suggests that pacemakers aren't generally recommended for POTS but is that just in relation to controlling the tachycardia? Has anyone got one for bradycardia? If so how old are you (I'm 42) and did it help? What effect did it have on your tachycardia?

Was your antibiotic a fluroquinolone like Cipro or Levaquin? Fluroquinolones can cause a lot of problems in the autonomic nervous system (search cipro and POTS if you want to check) and if you already have a problem I would imagine it could make it a lot worse. My GP knows not to give my antibiotics in that class unless there is absolutely no other choice.

Snap - if I eat in a hurry I will get a spasm! Fizzy drinks are also a trigger for me so I try to avoid them. I can never swallow anything without a spasm for a couple of minutes after I sit up after lying down - weird!

I get bad heartburn during flares too - my gastro says during a flare my whole digestive system just slows down and my stomach makes more acid to compensate. I take Omeprazole ( a proton pump inhibitor) during flares to cut down on acid which works for me. However like @Pistol I think you should get it checked out by an expert - before being prescribed the PPI, I had a gastroscopy just to make sure everything was OK.

Has anyone seen him? In person or just through a web consultation? If so what did you think of him? Was he worth the money? I have had POTS symptoms since I was a teenager (I'm 42 now) but was undiagnosed until 4 years ago. My POTS is severe, my average HR after 5 minutes standing is low 140's. I have seen several cardiologists in my area and have tried all the usual drugs - Fludrocortisone, Midodrine, Propranolol and Ivabradine without success. I am currently not on any meds and just increasing fluids, salt, wearing compression tights and doing as much exercise as I can manage. The cardiologists in my area (I live in Northern Ireland and there aren't many to choose from) have said there is nothing more they can do for me but I have seen Dr Gupta's videos on Mestinon and other more experimental drugs. The cardiologists I have seen have refused to let me try them on the basis there are no studies proving their efficacy and I wonder if it is worth paying for a consultation to see if Dr Gupta thinks I might benefit from them. I also have a couple of weird issues which no consultant I have seen has been able to help with - I retch and vomit every time my HR gets to around 140 (the gastro thinks it's because of vagus nerve stimulation but all he could do was prescribe Ondansetron an anti-sickness drug which only helps a little). I also have developed bradycardia in the evenings (usual resting HR is low 60s, it starts to drop around 7pm and by 10pm my HR is low 40s) which I am really struggling with. Will Dr Gupta look at test results - I have a recent Holter monitor showing my bradycardia. Also how does it work with your NHS GP - will they prescribe drugs he recommends or would I have to pay for a private prescription as well? Thanks in advance.

I have lost around 35lbs from the weight I was 15 years ago when my POTS became severe. I didn't lose it all at once but when I'm in a flare I just seem to burn through calories. Despite eating the same amount as usual I can easily lose 2lb a week and I find it so much harder to put weight on than it is to lose it. I now weigh 140lbs which I think is OK for my height (I'm 5 foot 10).

Thanks so much for your support @Pistol. It is very interesting to hear your explanations for what is happening with my ANS - it makes a lot of sense! I live in Northern Ireland which is part of the UK but separated from the mainland by the Irish Sea. There are no autonomic specialists in my area; I have seen 3 different electrophysiologists. The first didn't understand POTS at all; he told me my symptoms were psychosomatic and that I was just trying to avoid work! I begged him for a TTT and he finally agreed but I refused to ever see him again. After the results of my TTT (they stopped the test after less than 15 minutes when my HR reached 172 with no sign of stabilizing or slowing down , my BP was on the low side but had no big drops) I saw a different cardiologist privately who would be considered to be the POTS specialist for my area (he works with the charity POTSuk) He spotted my hEDS and started me on fludrocortisone and then midodrine, and when these didn't help I tried propanolol. None of these drugs helped me in the long term although I did have 4 good months on midodrine before I started to get hypertension. I couldn't afford to keep seeing this cardiologist privately so he recommended my current cardiologist on the NHS - he has a few POTS patients but none of my severity. He started off really positive; Ivabradine was getting great results and despite me telling him I had occasional bradycardia he was convinced it would sort me out. It didn't, it just made my bradycardia much worse and after that it felt like he gave up on me. Everything I suggested like IV fluids or pyridostigmine (Mestinon) he refused to prescribe; all he suggested was CBT to help me cope with having a chronic illness (I'd already done a course 15 years ago and whilst it was helpful the first time there was nothing new to learn). I went back to the private cardiologist but he agreed with the NHS cardiologist that there was nothing else I could try. I do wear 30-40mgh waist high compression tights - they help a little. I add as much salt as I can tolerate to my food but nausea is one of my main symptoms. I vomit most days when my vagus nerve is stimulated by the rise in my heart rate and I find a lot of salt makes me even more nauseous. Honestly, up until the start of this year I was coping. I had a routine that when I stuck to it meant I had relatively few flares and although I was largely housebound I could have the occasional couple of hours out every month without triggering a major relapse. Since I started to get bradycardia every evening and at night my energy levels have declined sharply and I am able to do a lot less. Last year when my parents were away I managed OK and even went out for lunch one day whilst they were away without triggering a flare. This year I did a lot less and am still in the middle of this flare (I still haven't managed to dress myself although I am forcing myself out of bed.) I am waiting on the results of my Holter monitor which I had done a couple of weeks ago before trying to get an urgent appointment with the NHS cardiologist (I spoke to his secretary who advised me to get the Holter first as it would give my case more weight). I do think the bradycardia is probably just coming from dysautonomia though and given my cardiologist's past behaviour I am concerned he will just tell me it's something else I have to learn to live with..... There are autonomic specialists in England and I'm not sure whether I'm now at a point where I should be considering going to see them. It would be a big decision for me as I'd have to fly there and stay overnight and I'm not sure if I could manage that.

Thanks for taking the time to reply @Pistol especially as I know you're not doing great yourself at the minute (I hope you are feeling a little better). What is an autonomic seizure? I sometimes have full body tremors when I am in a flare which can last anything from a few minutes to a couple of hours but I am fully conscious. I must confess that I no longer go to A&E when I'm in a flare - I have had really bad experiences of doctors assuming my symptoms are all psychological and the bright lights and noise of hospitals together with lengthy waiting times to be seen means that I just wait it out at home and speak to my GP if necessary. I would love to try IV fluids but here in the UK they are just not seen as a treatment for POTS. I spoke to my cardiologist about them who told me that he has not seen a UK study which supports the benefits of IV fluids and so he cannot justify prescribing them given the high risks involved of infections, blood clots or sepsis from a central line or damage to veins or infections from repeated peripheral lines. He says I should be able to hydrate myself orally without the need for IV fluids. I do drink at least 2.5 litres of electrolytes every day but it just seems to run straight through me (I go to the loo 12-15 times a day).

I'm seriously struggling; I really overdid it last week when the weather was hot and my parents were away (I'm usually housebound and live with my parents so normally my Mum does nearly all of the cooking and cleaning). Anyway I was doing OK until I wasn't - you all know the story ... Saturday evening I got really bradycardic - HR was around 42 and I was very short of breath. Sunday morning I woke up with what I call adrenaline surges - I'm not sure if that is what they are as I don't get tachycardic or hyperventilate or have anxious thoughts although I do get very nauseous and sometimes have diarrhoea. The only way I can describe it is like waves of pure panic washing over you every few minutes which is physically exhausting and mentally really hard to cope with. Normally they go within a couple of hours of waking but when I'm in a flare they can last all day and this is my third day of them and I'm completely fed up. In the past I've tried propranolol and fludrocortisone neither of which helped - it just seems to be that my ANS is in overdrive and all I can do is wait till it wears off. My standing HR this morning was 169 and my BP 95/78 and as well as these surges I'm horribly nauseous, dizzy, my balance is very poor and I have an constant headache - I am just praying the next few days go quickly and I start to get back to "normal" soon. Do any of the rest of you get them? If so have you any tips to help? The only thing that helps me is lying on my front with a pillow pressed to my stomach - it doesn't get rid of the surges but it does make them less severe.

I'm not hyper POTS but do flush and sweat when standing although not to the degree you describe. I have found Driclor a great help in helping my armpits, back and under boobs stay dry! I started putting it on every day, I can now manage with just once a week. It does sting and itch a little when you put it on but is worth it IMO.

You can do what's known as a poor man's tilt table test yourself with a cheap BP monitor or get your PCP to do it - lie down for 5 minutes and measure HR and BP. Then stand up and measure HR and BP after 5 and 10 minutes. For a POTS diagnosis you need a rise of at least 30 bpm in your HR which is sustained or for your HR to be higher than 120 bpm and for orthostatic intolerance I think it's a drop of 20 points although I'm sure @Pistol can confirm that.

I've tried a wide variety of SSRIs and SNRIs as every GP I saw before I was diagnosed with POTS was convinced my problems were psychological and if we could hit on the right anti-depressant I'd be fine. Finally I got a referral to a good clinical psychologist who said he didn't know what was wrong with me but I wasn't depressed or anxious and he believed my symptoms had a physical cause. He said that if the anti-depressants weren't helping my symptoms I should stop taking them. I've been on sertraline (Zoloft), escitalopram (Lexapro), fluoxetine (Prozac) and venlafaxine (Effexor). I had no significant side effects with any of them nor any problems stopping them (I followed a taper schedule the psych gave me) so I'd definitely give them a go as I know some people benefit from them.

I am so sorry you are going through this Amyque. I have had symptoms since my teens (I'm 41 now) but began to have severe symptoms in my early 20's after a bout of glandular fever but was not diagnosed for almost 15 years (I suggested POTS to my GP myself who had never heard of it!) . I had a TTT to confirm the diagnosis where my HR was 172 after less than 15 minutes standing and I usually average 140 after 5 minutes standing so my numbers are similar to yours. The important thing to remember is that if your PET scan comes back clear, POTS will not kill you, however bad you feel! There are plenty of medications to try to lower your HR and most people find something that works for them. Try to see an autonomic specialist or if that's not possible an electrophysiologist should understand POTS better than a standard cardiologist. Unfortunately, I have tried every medication my EP consultant will prescribe and have not found anything to help in the long-term (I had a good 6 months with Midodrine before it elevated my BP to dangerous levels even on the smallest dose). As others have said, try not to become bedbound. I so wish someone had explained to me that whilst lying down is the only time you feel OK, spending all day in bed makes you lose muscle tone and worsens symptoms. Try to find a routine that you can stick to - one that you can manage every day, not just good days. Don't use all your energy on good days and then spend days or weeks recovering! I have a couple of half hour lie-downs during the day but I also do an hour's recumbent exercise and 10-15 minutes walk or recumbent cycling to stop myself becoming deconditioned. I love my rollator - it helps me keep my balance when I am presyncopal (that feeling where you think you are going to faint but don't) and has a built in seat which allows me to sit down quickly when I feel particularly bad. POTS is a really difficult illness to deal with particularly because POTSies look fairly OK - I'm thinking of getting a T-shirt made with the slogan "I wish I felt as good as I look!" on it. No-one understands how awful you feel apart from another POTS person! This is my life though and I'm not going to get another one so I have learned to try to make the best of it. You probably already know this but make sure you drink at least 2 litres of fluid a day (electrolytes are better than plain water), eat as much salt as you can stand (this is standard POTS treatment but talk to your doctor first about increasing salt to your diet), wear compression tights (waist high are best, 30-40mg if you can manage them) and try to avoid getting overheated or stressed (easier said than done I know!). I was particularly symptomatic around the time of my period (my periods were heavy and reduced the amount of blood in circulation) and found that running packs of the pill together and then having an IUD coil fitted to reduce or eliminate my periods helped me.

I would say 9 months is plenty of time to notice a difference. Has your wife been able to increase the amount of exercise she can do during this time? I started with 2 minutes once a day, then after a week 2 minutes twice a day gradually building it up until I now do more than an hour of mainly recumbent exercise plus a 10-15 minute walk or recumbent cycling every day. Any more than this is too much for me, miss a few days and I feel much worse! It wasn't easy to increase - there were days where I just wanted to give up but I'm glad I persevered. One other thing I thought of is whether your wife is still having periods? Apologies if this is TMI but my periods were very heavy and anything that reduced the amount of blood I had in circulation was a bad thing. As a teenager I only had POTS symptoms during and just after my period leading me to think my problems were gynae related. I have a Mirena IUD which has more or less eliminated my periods although I know they don't suit everyone, particularly if you have EDS. Even just running packs of the pill together to reduce the number of periods would be something to consider.