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cmep37

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Everything posted by cmep37

  1. I've had POTS for nearly 20 years (I've been severely affected since I was 25) but I can still remember the first few years really clearly - I went from being "normal" to completely bedbound within the space of about 6 months and it was terrifying, all the more so as no doctor I saw ever knew what was wrong with me and I was dismissed as just being depressed or anxious. I went from earning a really great salary to living on benefits (which I was really grateful for). My fiance stuck around for about 3 years and then he left as well and I was too ill to manage on my own so I had to return to living with my parents. So within the space of a few years I'd lost my health, my career, my relationship and my home..... and a lot of so-called friends didn't stick around either! I'm telling you this not to scare you or to make you feel sorry for me but to tell you that despite all this I got through it and so will you. Many people with post-viral POTS make full recoveries and most POTSies find some meds to help them lead relatively "normal" lives. Bear in mind as you are reading the forum that it is mostly those of us who are most severely affected and the newly diagnosed who post most as other POTSies are too busy leading their lives to post a lot! I'm one of the unlucky ones - my POTS is caused by hypermobile Ehler Danlos Syndrome which means my veins are too stretchy and cause blood to pool in my feet and hands and as hEDS is incurable there is little chance my POTS will vanish! I've not found any meds to help either so I manage solely on vast amounts of fluids and salt, as much exercise as I can tolerate and compression tights which keeps me out of bed but not much more than that! Try to just take it one day at a time and not worry about the future, stress just makes our symptoms much worse. You are already on the right path, you have a diagnosis and you are seeing great specialists who will, God willing, be able to help find a treatment that will help you. Things will not always look this bleak, believe it or not but you will get used to living with dysautonomia and the symptoms that are so scary now will become almost commonplace. Try to stay as active as you can - keep doing small amounts of exercise sitting or lying down but don't make my mistake of taking to bed - it is much harder to build muscle back than to maintain what's already there. All the symptoms you describe are typical of dysautonomia - and yes, I sometimes feel just as bad when my HR is 120 as when my HR is 160+ - usually when my pulse pressure (the gap between your systolic and diastolic) is very small - anything less than 25 is considered bad and mine is sometimes as low as 12. At other times it's just due to my BP jumping all over the place! The sweating is horrible - I suffered in silence for years as I was really embarrassed until one day I mentioned it to my GP - she prescribed Driclor, a prescription strength anti-perspirant which has really helped me - I still feel the waves of heat when I stand but no longer have the wet patches that I had before. Feel free to send me a PM anytime you need a chat or a moan! You are not alone and you will get through this...
  2. Congratulations @MTRJ75 - it is such a weight off your mind when you don't have money worries looming over you. I also found a clinical psychologist really helpful - it was long before I had a dysautonomia diagnosis and I was really grasping at straws - every doctor was telling me it was depression or anxiety so I asked to be referred to a clinical pysch to see if he could help. He listened to what I had to say, asked a lot of questions, did a couple of assessments and told me he hadn't a clue what was wrong with me but he was 100% certain it wasn't depression or anxiety and he believed it had a physical not a psychological cause. It was great because after I saw him I could tell any doctor that a specialist in mental health said it wasn't a mental health issue and I do think I was taken more seriously as a result.
  3. I would, especially if you are sensitive to meds. My cardiologist suggested I start at the dose you were prescribed, my GP who knows me better said she thought that was far too much to start with and that I should start at the smallest possible dose and work up from there. Since I was extremely bradycardic on 2.5mg I dread to think what I'd have been like on 10mg!
  4. I get about 6-7 hours - far more than I used to before taking Trazodone. With Trazodone, I find it far easier to get to sleep, I wake less with a racing heart, I find it easier to get back to sleep when I do wake and in the latter part of the night I actually get several hours uninterrupted sleep.
  5. I take Trazodone for sleep issues (I take 150mg every evening) and it has helped me a lot. Pre-Trazodone I wouldn't sleep until 3 or 4 am and then wake every 30-60 minutes with my heart racing and it would take me another 30-60 minutes to get back to sleep. Now if I take Trazodone by 7pm, I get to sleep around 1am, wake up each hour for the first couple of hours but get back to sleep within 15 minutes and then actually sleep for 3-4 hours without interruption!
  6. I couldn't tolerate it at all even at the 2.5mg dose once a day. My resting HR in the afternoons and evenings dropped to low 30s/high 40s and I was very symptomatic - short of breath, heavy weight on chest, extremely tired. I was really disappointed as my cardiologist had said it helped nearly all his other patients...
  7. I can sympathise too - for years I was diagnosed with CFS/ME. No GP or other consultants I ever saw had heard of POTS but when I read an article one day I realised that I had almost every single symptom and the palpitations that I was repeatedly told were anxiety probably had another explanation. I remember asking the cardiologist who confirmed my POTS diagnosis whether I still had CFS or whether the fatigue was just a part of POTS and he said that when we had the POTS symptoms under control we would see... Unfortunately I have never managed to get the POTS symptoms under control but like @Pistol I find my fatigue is much worse in a flare so I definitely think a large part of the fatigue comes from the tachycardia. And of course in a flare you tend to sleep badly which doesn't help!
  8. Glad you got through it @Angelika_23- you were lucky to avoid the flare! I agree that POTS doesn't mean you will have a worse case of Covid than a non-POTS person but personally I found it did lead to a really bad flare. I had Covid between Christmas and New Year and am still not back to "normal" - my HR is still running higher than normal and my BP lower so it takes less time being upright before I grey out and need to sit down! Just shows how different we all are!
  9. I'm of the opinion that you say whatever you need to in order to get the money you're entitled to! Will anything you say ever appear on your medical records? If not then what have you got to lose by emphasising the mental effects of POTS - I can't believe anyone can be tachycardic at rest and not feel stressed and anxious or not feel depressed when they lose their independence and their previous lifestyle. I'm in the UK and when filling in benefits forms I do mention physical and mental issues POTS causes - I get no points for mental issues though I do get plenty for POTS's physical effects and have always been awarded maximum benefits. Good luck!
  10. Periods definitely have a super-bad effect on my POTS symptoms presumably because there is less blood in circulation. As a teenager that was the only time I had symptoms so doctors assumed it was gynae-related especially when they found endometriosis after a laparoscopy when in fact a lot of my symptoms were caused by POTS!. Your period- symptoms sound almost identical to mine - massive amounts of pain, nausea, vomiting, fainting, terrible sweating and fatigue. Running 3 packets of the pill together so I only had 4 periods a year worked when my POTS was less severe. When my POTS worsened and the symptoms were unbearable when I had my period I was told I could have an ablation (the lining of the womb is destroyed) or try a Mirena IUD. I thought the coil would be the easier option and I would highly recommend it (I'm on coil no 3 now!). It's h*** to get in (I have no children and a teeny tiny uterus) and it takes about 6 months to settle in and during this time I do notice a considerable increase in joint laxity (I have hEDS as well as POTS) with a lot more dislocations but after this I have no periods at all for about 3 years and I definitely feel better as a result. My gynaecologist changes my coil when my periods restart rather than waiting the usual 5 years as I'm using it for period control rather than contraception.
  11. My feet and legs are like yours @merkat30 and are freezing cold when they look like this but I don't have the mottling on my hands and arms that you do. My Mum jokes that my feet and legs belong in a mortuary! I think the funny colour comes from blood pooling and I think I've read that some POTS patients have abnormally low levels of nitric oxide in their skin when standing which can create a mottled appearance. What you are supposed to do about it I don't know! My legs and feet return to normal once I'm horizontal for a bit - do yours?
  12. Do you ever feel like it just shouldn't be this hard?! I am waiting until my usual GP is back but even then I'm not sure if there is anything she'll be able to do as according to my practice it's not up to GPs (the people who know your condition best) to decide, it's just a computer who goes through a list of conditions! Given the small numbers who have been diagnosed, POTS is never going to appear on that list but that doesn't mean that we don't merit a priority vaccine! Have you spoken to your GP about getting it Merkat or have you just been waiting to get called up?
  13. I am having a bit of a row with my GPs surgery at the minute about the Covid vaccination (my usual GP is off on holidays so I'm dealing with people who don't know my condition) and would appreciate your input. I do not get the flu jab as I am largely housebound and worried about the impact a flu vaccination might have on POTS symptoms but I do want the Covid jab. My GP practice is saying that as I'm not on their list for a flu jab I can't get a vaccine with them as part of clinically vulnerable group 6. They are saying that if I'm not on the list that was sent out by the Department of Health they have no power to add anyone - surely your GP should be able to add you to the list if they feel you qualify? POTS is a chronic neurological condition and Covid exacerbates POTS symptoms - I know this for a fact as having had Covid at Christmas I am nowhere near back to "normal". The issue is that if I don't get priority vaccination at my GPs and wait until my age group is called up I would have to travel over 30 minutes to the nearest vaccination centre and the amount of walking and standing involved would be beyond my capabilities. So has anyone from the UK with POTS (or POTS and hEDS) been put into priority group 6 by their GP?
  14. I really sympathise with you but I'm another person who had mild to moderate POTS, followed the advice of doctors who all thought I was depressed/stressed to exercise more and ignore how I was feeling and ended up with a really severe case. I do sometimes wonder if I hadn't pushed myself whether my POTS would be as bad as it is but that way lies madness! I was bedbound for 2 years and I still am in no way able to lead an independent life. I can only make food like sandwiches or things that just need reheating and even then I often burn/cut myself when I tremor or have a dizzy spell! My parents are slightly younger than yours (late 60s rather than 70s) and I can just about cope when they go on holidays for a fortnight but I crash badly when they return. I do worry about what will happen in a few years time if I still need care and they do too... On the whole I have made my peace with POTS - I have had enough of a cycle of overdoing things and then taking weeks to recover before doing the exact same thing again except every time it takes a little longer to recover and the recovery isn't to quite the same level as before. That's not to say I don't still overdo things at times but I do think about it and decide if it is worth the inevitable recovery period!
  15. I definitely think you should be investigated for EDS although as I said I think it is much more likely you'll come out with a hEDS diagnosis than a vEDS one. My advice for your kids is to keep them as active as you can in low impact sports - swimming and cycling are both good for POTS and hEDS. Even just a brisk walk is better than nothing; building leg muscles really helps return blood to the upper body quicker. Find a baseline that they can tolerate every day however little this is - (when was bedbound and I started to exercise from bed my baseline was only 2 minutes a day!) and build from there. Make sure they are really well hydrated - at least 2 litres of fluid a day. If your daughter is having periods see if this is impacting on her symptoms - in my teens I only had POTS symptoms around the time of my period leading doctors to believe my problems were gynaecological and as they found I had endometriosis this view persisted well into my 20s. Taking the pill consecutively for 3 or 4 months at a time rather than having monthly bleeds helped me a lot.
  16. Try not to worry - without a family history of aneurysms it is pretty unlikely you have vascular EDS although it does sound like you and your family might have hypermobile EDS. I had never heard of hEDS until I was diagnosed with POTS and the cardiologist noticed I was extremely hypermobile. I had always known I was bendy I can reverse namaste and can still "W" sit even now I'm over 40 but I never thought that could explain my health issues! He referred me to a rheumatologist (I had seen 2 previously who both told me I had fibromyalgia) but the 3rd one disagreed - he did several tests to assess my hypermobility, looked at my flat feet, my very stretchy skin (I can pull the skin (not the fat underneath but the actual skin) on my neck and my inner arm out by at least 3 cm), my very long skinny fingers, my awful stretch marks and asked about my medical history - I had all 4 back teeth removed as my jaw was too small for my wisdom teeth to come through and I have a very high arched hard palate, I have a mild bowel prolapse despite not having had kids, I experience what I now realise are subluxations (where the joint briefly dislocates when moved but returns to its proper place without needing to be manipulated) in my sacroiliac joints, ribs, wrists, shoulders etc and despite not having much family history (my great-grandmother had a shoulder which would dislocate on a weekly basis) he diagnosed me with hEDS. The criteria for hEDS can be found here - hEDS Diagnostic Checklist | The Ehlers Danlos Society : The Ehlers Danlos Society (ehlers-danlos.com) If you don't fully meet it, you could still have HSD which is a milder form - the two are treated exactly the same, exercise to strengthen the muscles round the joints. There is a genetic test for vEDS but it's not done routinely in the UK without evidence of aneurysms or a clear family history, I'm not sure what the rules are elsewhere.
  17. Yep all the time - it's a constant issue for me. I actually use a rollator when I'm outside as I can't keep my balance without it and inside the house I hold on to furniture and walls to keep myself orientated. I think it's because I feel so dizzy when I'm upright, even when I'm sitting everything spins and if I shut my eyes it gets even worse to the point where I could be sick. My doctors say that's because of lack of blood flow to the brain and that there isn't anything they can do to help (I haven't been able to tolerate any meds that lower my HR) so I can sympathise but unfortunately I don't know of any solutions! If this is a new thing for you though I would mention it to your doctors to get checked out - other conditions can give you balance issues and it's so easy to blame everything on POTS when it could be something as simple as an ear infection!
  18. Snap - the last time I can remember being hungry was about 10 years ago. I eat when it's meal times and after a couple of bites I'm full up! I force myself to eat regardless of my lack of appetite or awful amounts of nausea as I get too skinny otherwise but food is no longer something I enjoy, it's something I endure!! When I'm in a POTS flare and I vomit my food is completely recognisable even several hours after eating - my GP has prescribed me Domperidone for these times and I find it really helps speed up the digestion process and gets rid of that feeling that everything is just sitting in your stomach.
  19. Hi @Elizaangelica I don't have ADHD but I have I used Modafinil in the past when I was misdiagnosed as having ME/CFS - I know now that POTS was always the cause of my symptoms. I used it to help with terrible fatigue and brainfog and it did help me to have enough energy to start a gradual exercise programme (I was more or less bedbound at the time - I now am housebound but rarely stuck in bed!). Like you I found the effects waned over time - after about 6 months I stopped taking it as it no longer had much effect.
  20. I have got a weighted blanket (after conversations on this forum) and whilst it doesn't stop the tremors it does help them not feel so intense. I also try to do square breathing when I feel panicky (breathe in for 4, hold for 4, breathe out for 4, hold for 4) - I find focusing on the counting helps calm me down. Most of the time I find I feel worse if I don't understand why my body is reacting like it is so knowing that my body is shaking because it is burning off excess adrenaline helps.
  21. I am really sorry to hear this @gertie. I shake like this too in a flare - I think there is just so much adrenaline in my system that shaking is the only way that my body knows to burn some of it off. There is nothing I can do to stop it, I just have to wait it out! When I am in a major flare it is full body tremors, as the flare subsides it normally only affects my hands or legs. Previous doctors tried to tell me it was anxiety/psychological but my current GP agrees with my adrenaline theory. I got very distressed the first few times it happened but now I just try to stay calm and know that eventually it will go away - panicking about it generally makes it last longer....
  22. There are 13 different types of EDS - most of us with POTS have hypermobile EDS and hEDS is far and away the most common form. The different types of EDS and what criteria you need to meet for a diagnosis can be found at EDS Types | The Ehlers Danlos Society : The Ehlers Danlos Society (ehlers-danlos.com) I saw 3 different rheumatologists before being diagnosed with hEDS - the first 2 seemed to think you couldn't have it unless there was a family history of it but that's not the case. Thankfully I don't fully dislocate joints often but I do partially dislocate a few times a month. If you don't fully meet hEDS criteria but you are hypermobile you might still have HSD which is treated in the same way as hEDS.
  23. If the flare is bad enough then yes I do experience muscle weakness as well as fatigue - it feels like I am stuck in treacle and I am forcing myself to move though it. The first couple of weeks with this Covid flare I was extremely weak as well as tired. All my muscles seemed to be much weaker - there were days I could barely lift a glass of water without massive effort , the glass felt twice as heavy as it actually was. I wonder if it's a case of not enough oxygenated blood circulating to supply muscles with what they need to work properly. For me it does fade away as the flare subsides - hopefully you will find the same....
  24. Short answer nope, no-one seems to care! Mine isn't quite as bad as yours, but it's never more than 20 when I'm standing and the lowest I've seen it is 12. I do know someone else on another forum with POTS who had a pulse pressure of 6 - recorded in hospital, they couldn't believe she was still conscious. I've spoken to my GP and my cardiologist about it and both just say it's a sign of how much my heart is struggling to pump blood round my body when I'm upright and how little blood is circulating in my system. Neither of them are concerned as my pulse pressure when lying down is normal (100/60). I actually find it a better indicator of how bad I feel than my HR - if my BP is 100/85 (PP15) and my HR 140 I feel worse than if my BP is 100/80 (PP20) and my HR 150. Sorry I can't be of more help but I do know how you feel....
  25. I know some people aren't keen on Driclor etc as they believe strong chemical deodorants can increase your risk of breast cancer. Personally I was ready to give anything a shot as I was too embarrassed to go out with wet patches!
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