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cmep37

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Everything posted by cmep37

  1. Yes, I have this issue - one of the reasons why it took me so long to realise I had Covid and not just normal POTS problems! When I first gave up work as I was on the point of complete collapse I would say I ran a slightly elevated temperature most of the time and I would also spike fevers randomly. I would feel freezing cold and shiver if the temperature dropped even a little and it would take me hours to warm up despite hot drinks and heated pads. Similarly if I got too hot it would take ages for me to cool down. As all my bloods came back normal my doctors were baffled and finally just gave up worrying about it and told me to take paracetamol if the fevers bothered me. This was long before my dysautonomia diagnosis but it is now obvious to me that my ANS was on a hair trigger and reacted far out of proportion to any change in the temperature. Fifteen years later and I don't have the same level of issues but about once a month (although it can be more often) I will still spike a fever in the evening or wake up burning up. It doesn't seem to be linked to flares or what I have done that day, it can happen on a day I've been relatively well. I take a codeine/paracetamol combination in the morning and early afternoon to deal with hEDS pain so it could be that what I think of as an evening fever is actually an all day affair which is masked by the paracetamol I have taken. I used to have hyperhidrosis - this has also changed over time so like you I now rarely sweat at all. So I can sympathise with you but not offer any answers as to what is going on - I just tell medical professionals that my temperature is often not a reliable indicator of whether or not I have an infection. It made Covid interesting though - you are supposed to self-isolate until you stop having fevers, my GP decided that we would just have to say that after 20 days it was very unlikely I was still infectious!
  2. Yep that's so me @Nin we're too stubborn for our own good! I have forced myself to accept using a rollator - it has actually helped me be able to walk further as I always have somewhere to sit down and I am much more confident balance-wise - often I am extremely dizzy when upright. Somehow I find it more acceptable than a wheelchair as I'm still independent and in control. It's funny, when I was trying the Levine protocol I could just about manage the recumbent exercises but when it changed to upright I just couldn't keep up!
  3. @Peach I do know - have you ever tried Domperidone? It is a real life saver for me when I'm in a flare and my digestive system goes on strike. It basically speeds up your digestive system by increasing the contractions of your stomach and bowel. My GP won't let me take it for any longer than a week at a time (it may have an adverse effect on your heart if you take it long-term) but I find I don't need to - generally within 2-3 days it has done it's job! I know it's not regularly prescribed in the US but it is a really useful drug for those of us with gastroparesis.
  4. @MikeOIf you do swell in the ankles try flight socks. My Granny takes Amlodipine (it's the only CCB she can tolerate) and swears by compression socks - she does have some swelling in her ankles but she also has mild congestive heart failure so it is hard to figure what is causing the oedema. She was only telling me the other day that she read in the newspaper that Amlodipine is supposed to lower your chance of getting dementia. Granny is 85 and sharp as a tack so maybe there is some truth in that!
  5. I remember those days although I was always the cheapest date ever, 1 small glass of wine and I was tipsy! I can't tolerate alcohol at all any more - my family joke that a wine gum gets me tiddly!
  6. Big hugs @MikeO - BP's that high cannot be pleasant! My systolic is usually lower than your diastolic!! At least your medical team is aware of the problems - fingers crossed they can do something to help you.
  7. Thank you for telling me your experience of aging with POTS @Glassywood. My first POTS symptoms began in my early teens and for the first 5 or 6 years my POTS symptoms were fairly mild (I thought they were gynae related as I was really only affected during my period) but then I got EBV/glandular fever at university and the symptoms became more frequent although still relatively mild. Things gradually worsened over the next 5 years with me trying to ignore the fact I was on the verge of fainting/actually fainting multiple times a day until I finally had a complete collapse in front of an important client and had to admit defeat and give up work. I then worsened to the point that I was bedbound for 3 years. I finally managed through very gradual exercise to improve to the point I'm at now - housebound and pretty severely affected (after 5 minutes standing my HR is well over 140BPM, BP 100/80). Despite having had POTS symptoms since I was a teenager, I was only diagnosed when I was 38 (5 years ago) and I also got a hEDS diagnosis at the same time which is the likely cause of my dysautonomia. I'd describe my POTS as poorly controlled - no meds I've been prescribed have helped - either they didn't work or I had side-effects worse than the original problem! so I manage with just increased fluids, salt, compression tights and as much exercise as I can tolerate. ,The thought of my HR getting any higher than it already is as I get older does worry me - I also have to admit to being concerned about getting dementia as for most of my life I will have had reduced blood flow to my brain when upright!
  8. I'd like to ask about how POTS/dysautonomia is affected by aging. I was told by one consultant that POTS was rarely found in anyone over the age of 50 (I'm 43 and have had POTS symptoms since I was 13 so I was looking forward to this miraculous cure in 7 years time😉!) but another doctor I mentioned this to laughed at his idea and this forum kind of proves him wrong! I'd be interested in how menopause affects POTS symptoms and whether getting older is likely to make POTS worse or better.
  9. I know exactly where you are coming from - I also have a terrible time with nausea and vomiting due to my high HR stimulating my vagus nerve. If your PCP won't do anything else to help you 🙄ask them to prescribe Zofran/Ondansetron. It is a life saver for me - I was losing vast amounts of weight until I started Ondansetron. It allows me to eat more easily and although I still vomit most days it's now usually only after lunch rather than every single meal! Has anyone ever mentioned hEDS (hypermobile Ehler Danlos Syndrome) to you? It's a common cause of POTS/dysautonomia (it's why I suffer from POTS) and might explain why your neck is unstable causing the symptoms you are experiencing. I agree with everyone else - a supine MRI is unlikely to show much, it's the effects of gravity that you see on a standing MRI that will really let you see if there are any issues. Another thought I had was BP - have you ever taken it when you are experiencing symptoms? I had an adverse reaction to one of my meds and that feeling of intense pressure at the base of my skull, stabbing pains in my head, blurred vision, ringing in my ears was all down to the fact my diastolic BP was extremely high (it was 160/ 100, my normal BP is 100/60). It's unlikely as you are having symptoms most of the time but an easy one to check off the list!
  10. @MikeO - good news - at least your doctors are taking your issues seriously and are prepared to try new things - fingers crossed this works well for you!🤞
  11. @KiminOrlandoHave you tried low dose Trazodone - I take 100mg whereas the usual dose for depression is 300- 500mg? Someone here recommended it for insomnia and it has really helped me at night. I now feel much more relaxed at night - before I would often get a second (maybe even a first!) wind at 11pm and not be able to sleep until 3-4 am. I need to take it early evening (no later than 7pm) but I now rarely have wave after wave of pure panic when I am trying to get to sleep and the quality of my sleep has also improved. I often get a block of 3-4 hours sleep whereas in the past I woke every hour and struggled to get back to sleep. I forgot to fill my prescription a couple of weeks ago and without it the autonomic surges were back and my sleep was patchy at best although I had no withdrawal symptoms. My GP also wouldn't prescribe Valium but was happy to let me try Trazodone and is actually recommending it now to other patients of hers with insomnia as it has been so effective for me.
  12. Hi @Bailee I'm so sorry to hear that you are struggling with a return of symptoms - apart from going on holidays did anything else change for you round this time? Covid? Another virus? My POTS became much worse after having EBV/glandular fever at university - quite often a mild virus can trigger a return of symptoms if you have had dysautonomia in the past. I'm assuming you are female (apologies if I'm wrong!) - I also started with POTS symptoms at 12 and would get them for a few days every month - my doctors and I thought my problems were gynae in nature but it was my heavy periods reducing the amount of blood in circulation that was causing me to faint. I now have a Mirena coil which helps control my periods reducing problems with lack of blood flow. Could this be an issue for you? Are you hypermobile (double jointed)? After having POTS for around 25 years I was diagnosed with hypermobile Ehler Danlos Syndrome - this is a common reason to have secondary POTS as veins in hEDS patients are abnormally stretchy, causing blood to pool in extremities. There is no blood test that can diagnose it and although a family history of EDS is common it is not necessary. By the time I was diagnosed I had seen about 15 different doctors for seemingly unrelated issues, all of which are now explained by my faulty connective tissue - not one of them suggested EDS as a possible diagnosis.
  13. Ouch @MikeO - no warning at all, that has to be tough! Before I got used to having POTS I would faint a lot when my HR got too high but I did get some warning - ringing in my ears, tunnel vision - I just kept thinking if I ignored it it would go away!
  14. @Pistol - big hugs. In my experience steroids work quickly if they are going to help so fingers crossed!
  15. 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!
  16. 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.
  17. @MikeOhope you get some good results from your appointment - those BP numbers are concerning.
  18. 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.
  19. @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.
  20. 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!)
  21. 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?
  22. 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?
  23. @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.
  24. @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).
  25. 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...
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