cmep37

Midodrine was a great drug for me for a few months, I was able to do a lot more and felt much better on it - it was easily the best med I've tried for POTS. Sadly after about 4 months I started having very bad hypertension after about 4 hours of taking a dose - my cardiologist thought it was a kind of rebound as the drug wore off as if I took another dose the hypertension didn't happen (you can't take it if you are going to be lying down so you can't take a dose after late afternoon). My diastolic was consistently getting over 120 (oddly my systolic wasn't so bad, it rarely got much beyond 170) and would stay there for a couple of hours before going back to my usual 100/60! I was very symptomatic with crippling headaches and chest pain when my BP was that high so I was told to stop it. I also have some bladder issues (urinary retention and overactive bladder) although nothing like as severe as yours but honestly I don't remember Midodrine having much effect on them - I certainly didn't notice any difference in terms of urinary retention. The only side effect I really remember was a tingling scalp - it wasn't unpleasant, it just meant I knew when the drug was working! I noticed you said your cardiologist wasn't keen on Midodrine - what did your urologist think? I know my cardiologist won't prescribe me neurological drugs because he says he doesn't understand how they work and he would rather be safe than sorry (personally I'd rather he let me decide if I wanted to take the risk or not).

I don't want to pour cold water on this theory but I tried it for a couple of months and it didn't have any effect on me. I could stand for longer propped against a wall than I could in an open space but I wasn't really able to increase the amount of time I could stand before becoming symptomatic. Some days I could do longer than others but consistent improvements - nope! I have POTS because of hEDS and I don't know if that was the reason I saw little benefit - I'm not sure that tilt training can do much for stretchy veins! What I found much more help was exercises to build leg and especially calf muscle, improving the return of blood to the upper body. I'm not saying don't try it - it won't do you any harm and from what others have said it may help you but don't get too downhearted if it doesn't work for you.

Yep, my flare has lasted for 8 months since I got Covid over Christmas, I did have a spell around Easter where I was doing a little better but not back to "normal" but I have been completely housebound since early June - I'm vomiting daily due to adrenaline, I've lost 7lbs I didn't need to lose, my HR after standing for 5 mins has increased from average of 135ish to 150ish, my BP after standing for 5 mins has dropped from 100/80ish to 90/70ish which makes it nearly impossible to do anything without grey-outs. Please, please get vaccinated - do not hesitate or listen to what you read on Facebook. I was not hospitalised (actually I had very few breathing issues, it was more like the worst 'flu I have ever had) but am still feeling the effects months later.

I think there are 13 different types of EDS - hypermobility is only usually found in one of them (hEDS) although it is by far the most common type. However dislocations/subluxations like you describe are usually associated with hEDS. This is a good (although long sorry!) article on how you meet the criteria for being diagnosed with hEDS. hEDSvHSD_tinkle edits_3142017 (ehlers-danlos.com) The requirements differ depending on your age - as @Chiarasays if you are older, and especially if your joints have suffered a lot of trauma, you may no longer be hypermobile but you will usually have a history of hypermobility. At 42 I still score 8/9 on the Beighton test but would have scored the full 9 up to my late 20s (my hamstrings are now too tight to get my hands flat on the floor when I bend at the waist although I can almost make it!). If you do have hEDS the most important thing is PT - I'm afraid there isn't really any other treatment apart from making sure you have adequate pain relief.

Yep, you've tried everything I was suggesting - I thought it was worth asking just in case! Given your diastolic BP rises when standing (as I have recently learned from @Pistol") have your doctors considered hyper-POTS? Clonidine or another alpha antagonist might be worth trying in this case. Of course it may be that the malaise is actually coming from the same underlying auto-immune condition that is causing your POTS rather than dysautonomia - this is the problem with having more than one health issue - you are never really sure what condition is causing what issue!

Yes to the coat-hanger pain, I have it all the time I am upright - it is one of my worst symptoms although in my case I am never sure if it is POTS or hEDS as my neck is very hypermobile. I constantly have an intense burning ache right at the base of my skull (not above the middle of my neck but about an inch out from the neck bones on both sides) which radiates down the sides of my neck and into my shoulders. I also get pain that runs from shoulder blade to shoulder blade and the muscles in my shoulders feel tight all the time. All this pain is relieved when I am lying flat. I have a little spiky massage ball which I roll hard on the affected areas which really helps for about 5 minutes afterwards. I also get awful stabbing headaches after being upright for a couple of hours. I don't have any other postural pain - plenty of other pain but none that only occurs when upright! I honestly don't know if postural muscle pain in other places is linked to dysautonomia but I haven't heard of many people complaining of it...

Oh yes - every time I mentioned it they would say - I know what will help, have you tried an SSRI/SNRI? Each doctor had their own favourite - I think I have tried at least 6 different types/brands from escitalolpram to venlafaxine to fluoxetine, none of which made one iota of difference to how I felt! Having said that I do know some people with dysautonomia who did get benefit from them - they seemed to help their sleep patterns which in turn reduced fatigue.

Strictly speaking neither did I but my doctors didn't know what else to diagnose me with! My malaise was constant - it did worsen when I did things but was never relieved, even when I woke up in the middle of the night I had it. I agree - I have tried but that feeling of weakness, fatigue, just awful sense of unwellness is almost impossible to describe - the flu but not the flu is as close as it gets! I understand your doctors have attempted to treat the underlying condition that is causing POTS but have they prescribed anything for the POTS symptoms themselves? I am like you - I have secondary POTS caused in my case by hEDS. There is nothing they can do for my faulty collagen that means my veins are super stretchy but my doctors still tried to lower my HR by prescribing fludrocortisone, Midodrine, beta-blockers (low dose propranolol) and ivabradine. None of them worked in my case so I am just managing with increased fluids, salt, compression tights and as much exercise as I can manage. If you haven't tried some of these measures it would be worth seeing a EP cardiologist to get his input - I can't help wondering if your malaise would lessen if your dysautonomia symptoms improved.

Yes, when I first had to finally admit defeat and give up work due to my POTS symptoms I had malaise like you describe for about 3 years. I had been struggling for about 18 months with what I now know was moderate POTS, then one day at work I fainted after having to stand in a meeting for 30mins and after that it was just like something in my brain had broken - I could no longer stand for more than a couple of minutes without fainting or feeling very like it! I constantly felt weak and just really unwell - it's very hard to explain to doctors, you just feel like you have no energy at all. I (nor any of my doctors) had heard of POTS so I was diagnosed with ME/CFS - I'm honestly not sure whether I ever had ME or whether my problems were just POTS and hEDS. It did gradually wear away. One thing that seemed to help was the drug Modafinil - it gave me enough energy to start regular exercises from bed which presumably helped with my POTS symptoms which would suggest the malaise was caused by dysautonomia. I still get malaise during a flare (I've had it for the last couple of months actually) although never to the same extent as when I first collapsed - nowadays I am able to force myself to get up and dressed whereas during that first 3 years a million pounds could not have persuaded me! Is your POTS well managed? Has anyone ever suggested ME/CFS as a possible cause of your malaise?

I have hEDS - I live in the UK though so have no experience of the consultant you mention. When I was diagnosed I was 38 and had been told for years my symptoms were due to fibromyalgia. I had never heard of hEDS (there is no real family history - only a great-grandmother who had a shoulder which dislocated daily) and only got diagnosed because the cardiologist who diagnosed me with POTS took one look at my hypermobile wrists and fingers and asked me who I saw for hEDS. I score 8/9 on the Beighton test (my hamstrings have shortened too much to get my hands flat on the floor although I could do this easily in my teens and early twenties). I don't tend to have many full dislocations but I used to have a lot of what I now know are subluxations - I have considerably reduced the number of joints that sublux through a regular programme of physio exercises. Any questions about symptoms/diagnosis feel free to ask.

I understand what you mean but I find many doctors don't! I find it really hard to explain to doctors that I experience different types of pain (I get both joint/muscle pain and nerve pain from hEDS)and that they respond differently to different pain meds. For me the nerve pain tends to kick in in the evenings whereas the joint/muscle pain is much worse in the mornings. They seem to think that one med should help with both - generally it doesn't! Have you tried a TENS machine? I'm not sure how exactly you'd use it for IC pain but some people love them and they are relatively inexpensive. For me I've just got too many areas that cause me pain to make it effective - my GP jokes that I'd need a full body TENS suit rather than just a small pad!

I echo everything @Pistol says - you really need to have what's happening picked up on a monitor to find out exactly what's going on. Having said that I do occasionally experience what you are describing when I first get out of bed in the morning - when I was wearing a 24 hour Holter monitor I had an episode when i got up where my HR went from around 60BPM to 160 to 50 and back to 150 again inside the space of a minute. My cardiologist didn't seem too concerned as it was all sinus rhythm and thought it was probably due to fluctuations in BP - unfortunately I wasn't wearing a BP monitor as well. For me it is accompanied by shortness of breath and chest discomfort (like someone is squeezing you). When it happens I generally lie down again, drink another 500ml of fluid (I always drink 500ml before I get up) and try again!

I did not know this @Pistol. I always thought it was the systolic that went up! I love the fact you always learn something new on this forum!

125 was my diastolic! My pulse pressure was 13. My Gp wouldn't believe me until I showed her a pic of my BP monitor then she was horrified.

Good luck with the dysautonomia clinic. My POTS is secondary to hEDS - have you ruled that out as a cause of your POTS? I only ask as I was 38 before I was diagnosed with hEDS which is sadly all too common. I do find the idea of wearables interesting but they also seem very expensive so like you I'd need to see more evidence first! Have you tried Midodrine or Fludrocortisone? I found Midodrine very helpful for lowering HR, the best drug I ever tried but unfortunately after a while it raised my BP to scary levels (at worst it was 138/125 and I felt like someone was sticking a red hot poker through my skull) about 4 hours after I took it so I was advised to stop it. I had no success with Fludrocortisone - it had no effect on me whatsoever, but others swear by it!

I can't add anything on the wearable devices issue - I must confess I didn't know such things existed until reading your post. I'll be reading any comments with interest! However, if you think you have hyper POTS (I assume you are seeing a sustained increase in systolic BP on standing) you may get some benefit from trying an alpha-antagonist such as Clonidine. Ivabradine lowers HR but doesn't affect BP much at all so is more suitable for those of us with non-hyper POTS who don't experience a rise in BP. In the UK the usual beta blocker prescribed for POTS is not Metoprolol but Propranolol at low doses - 20mg a day is standard as studies have shown that higher doses don't help more but instead just worsen fatigue and other side effects.

Yep, I took it for a while before being diagnosed with hEDS and starting a programme of regular physio exercises which have helped stabilise some of my joints. It is quite a bit stronger than co-codamol and it did leave me a bit woozy after taking it - it did help a lot with the pain though. My GP's not very keen on it long-term - she says the kidneys have to work very hard to process it so I would only take it now in a crisis rather than as a regular thing. In terms of new drugs, I try to give them 4 weeks - if by then I still don't get any benefit or I've had unbearable side effects I'll chat to my doctors and if they think it's worth continuing I'll persevere for another month but if at the end of that I'm still not convinced I will stop. Obviously that wouldn't apply if I had a really bad reaction to them! My attitude generally is that I'll give anything a go - with dysautonomia our bodies work in very individual ways so what helps a "normal" person or even another person with dysautonomia may not suit me but at least I have tried it!

Oddly enough I was going to suggest both of those - I've tried them but preferred my usual co-codamol 30/500 (the worst side effect it gives me is constipation!). Everyone talks about opiods and addiction and how over time they no longer work but after almost 20 years I am on the exact same dose I started on and I still get benefit from it. I do have tremendous sympathy for you - I know if I am in a lot of pain with a dislocation or subluxation it makes my POTS symptoms much worse too as increased pain seems to upset my ANS. The thought of suffering that kind of pain every day with nothing to help is terrible.

I was offered this for my hEDS pain - I took it for a couple of months and it did help but I had to stop as it made my POTS much worse. It gradually raised my resting heart rate quite a bit - from 60ish to 90ish - I was still getting the same 80-90 BPM rises in HR after being upright for a few minutes though so as you can imagine at 180 BPM it was not pleasant! My mum takes it and thinks it is really helpful but then she doesn't have POTS...

It's normal for my HR to rise about 10-20 BPM after meals- I assume your BP falls for the same kind of reason. I think it's due to blood pooling in your stomach to aid digestion - it reduces the amount of blood in circulation. An abdominal binder may help - I found it increased my nausea and indigestion but you might be different

Hugs @MikeO - that must have been so annoying. It's the same problem many of us have experienced - doctors who only consider the area they specialise in and anything outside that, they aren't interested in! I've lost count of the number of times a consultant has told me I need to see a consultant in a different specialism only for them to say my issue is not within their area of expertise either and refer me on to someone else who again says they can't help and then suggests I see the first doctor again! You end up feeling like pass the parcel - the patient no-one wants to keep...

I never drive any more although I have a licence for ID purposes. I could drive if there were no other cars on the road but I cannot make assessments about other vehicles - deciding how fast they are travelling is a particular problem. On a motorway as a passenger I shut my eyes as I feel sick otherwise. I quite often duck watching TV if something appears to be coming towards me, at other times I cannot watch a programme because the camera will not stop moving around and it makes me very disorientated. I also get the hot flashes when I'm about to pass out - along with tunnel vision and a whine/ringing in my ears its a sign I need to sit down before I fall down!

Thank you for this @Rexie- I will make sure I read those articles. That's a great tip about urine - the darkest mine gets is pale straw coloured so I think that means I'm well enough hydrated. Thanks to severe POTS I rarely do much more in the heat than sit below an umbrella and our highest ever temp in Northern Ireland was still only 31.4C - today it's a much more usual 19C so hopefully that means I am unlikely to have the same problems with heat exhaustion you do. I will get my GP to mention it on my notes though in case it ever becomes an issue. I would love to have the full set of autonomic tests you've had but over here that's not routinely carried out - I was diagnosed through a TTT and that's all most of us are ever offered!

I know what you mean - I did have a barium swallow test a few years ago but as my symptoms come and go I'm not sure what value it really added except to rule out anything else. I know my triggers are fizzy drinks, very dry food and anything very cold. Small bites, a lot of chewing and frequent sips of fluid help but I'll have none for a fortnight and then one every meal for a couple of days. My Gp and I always thought it was hEDS related rather than dysautonomia so it's quite interesting so many people here complain of it.

My motto is "Sit down before you fall down and speak up before you throw up!". I use a rollator when I'm outside the house - I hated the idea at first but was persuaded by the fact it was better than a wheelchair. It means I have somewhere to sit down wherever I am and as one of my big issues when I'm upright is dizziness and poor balance I feel much more stable holding on to something. I have actually managed to improve my fitness because of it - I no longer have to have a wall to walk beside!!