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Everything posted by cmep37

  1. @Pistol - big hugs. In my experience steroids work quickly if they are going to help so fingers crossed!
  2. Completely relate to this - the first time I had POTS symptoms was when I was 13 and having a very heavy period. For the whole of my teens my doctor assumed my problems were gynae as I was only symptomatic at certain times of the month - now I understand it was probably the loss of blood that was triggering them. I then got EBV/glandular fever at university when I was 19 and my symptoms became more frequent although I was still able to complete my degree, go to law school and work as a lawyer for 3 years. My symptoms got worse and worse over time until I was fainting/greying out multiple times a day and taking a week off most months! I finally admitted defeat when I fainted in a meeting with a top client one day - flashing your underwear to the head of operations at British Airways was not my finest hour but giving up work at age 24 was not what I had ever intended! I still had to wait another 14 years for a POTS diagnosis and that only because I read an article one day and realised I ticked every single box - before this my diagnoses ranged from burn-out to anxiety/depression/CFS/ME/fibromyalgia and I had seen consultants from most hospital departments - neurology, rheumatology, dermatology, gynaecology, gastroenterology, and cardiology! Hot on the heels of my POTS diagnosis came my hEDS diagnosis which explained a lot - no-one had ever suggested that the problems I had were all caused by one thing, faulty connective tissue!
  3. Yep I get a sharp pain that steals your breath in that area but only when my HR is 160BPM+. I wouldn't ignore it - if it's happening more often speak to a doctor, it's all too easy to blame POTS/dysautonomia when it could be something else.
  4. @MikeOhope you get some good results from your appointment - those BP numbers are concerning.
  5. This is always been my experience with a virus - I think I've got away with it and then bam! POTS strikes! @PistolI am so sorry to hear your recovery from Covid hasn't been straightforward. Your symptoms do sound like they could be autoimmune - hopefully your bloods will show something useful for your doctors to go on.
  6. @Pistol - thanks for the laugh! @Rexie thank you for the tip - I will give it a go! I also have a problem with dry eyes (and other places that I won't mention to protect @MikeO's modesty! 😉) so it sounds like slippery elm may be an all-round help to me.
  7. Tee hee @MikeOmy GP agrees with you and has referred me to get a new coil fitted - of course with the NHS waiting lists it may take a few weeks/months before I get it done as I need a gynae consultant to do it - my GP can't even do a smear on me as my cervix is so hard to find (sorry that's even further into girlie territory!)
  8. I'm really hoping it will be one of those dysautonomia things that bother you for a couple of weeks and then go away! IBS does makes sense but I'm not gassy, don't have diarrhoea, haven't eaten anything out of the ordinary and have been a lot less stressed this week than the week before when I had a flood from the washing machine in my rented flat! The only thing that's out of the ordinary is that I got my period this afternoon - normally with my Mirena coil I don't bleed but it's been 3 years since I had it fitted and when my periods come back I always get a new one as they have such a bad effect on my POTS symptoms. I have endometriosis in the past and I think my bowel was one of the places badly affected by that - maybe that has something to do with it?
  9. So for the last week or so I have woken around 6am with agonising stomach cramps, bad enough that I feel like I might pass out. It feels like my bowel is contracting really strongly to move poo through my bowel; the pain comes in waves every 10 minutes or so until after a couple of hours I feel an urge to go. When I do go to the loo it is normal - I don't have diarrhoea and I'm not badly constipated (because of my hEDS painkillers my poo is always a little on the hard side but I've always gone every day without any problems). Nothing in my diet has changed either - it just started out of the blue. Once I go to the loo the cramps start to ease off and after a hour have completely gone until the next morning when the same thing starts again. My GP is thinking it's most likely IBS and has suggested I try buscopan/scopolamine for a couple of weeks to see if it helps. She is the first to admit that she is no expert on dysautonomia though and suggested that I ask on here if anyone had experienced anything similar?
  10. @Rexie thank you - the articles look interesting and atomoxetine is a drug I haven't read anything about. @MikeO I would be taking atomoxetine for POTS rather than nOH - generally my BP stays around 100/80 when upright but my HR is 150BPM+ after 5 minutes. Have you tried Midodrine? - it has a short half life (for me just less than 4 hours) and although it did give me rebound hypertension I don't think many people experience that.
  11. @SushiWhat sort of tests did you have? I have bradycardia in the evenings and at night which isn't that common in POTS people but which might make more sense if my parasympathetic system is overactive. My POTS is quite severe - my HR is 150BPM+ after no more than 5 minutes of being upright and it is not well managed as I haven't found any drugs that helped that didn't cause problems that were worse than what I was already dealing with. BB's dropped my BP too low, Ivabradine made my bradycardia worse and Fludrocortisone and SSRIs/SNRIs just did nothing at all. Do you have ADHD symptoms or is the Strattera being used off-label? When I googled it it seemed to be contra-indicated for POTS but I'm assuming that is for people whose sympathetic system is overactive. When I was bedbound I took Modafinil and I did get some benefit from that but after a few years I stopped taking it as the effects had worn off. My GP would probably let me trial it if I could show her some evidence it might help me (my cardiologist won't prescribe anything that isn't a cardiac drug as he won't prescribe anything if he doesn't understand how it works eg neurological drugs).
  12. Big hugs @Pistol - that must have been really frightening. I am really glad to hear that you are feeling a little better. Look after yourself and I hope you and your family all carry on making a good recovery...
  13. 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).
  14. 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.
  15. 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.
  16. 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.
  17. 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!
  18. 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...
  19. 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.
  20. 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.
  21. 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?
  22. 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.
  23. 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!
  24. 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!
  25. 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!
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