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About bombsh3ll

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  1. I am interested in the Celltrend panel myself as I was only tested for AChR antibodies at the UK's only public autonomic center. Which of yours showed positive and what was the treatment offered if any & has it helped? B x
  2. I use Trioral. usually 2-3 litres a day. works out more cost effective than any others I've seen & it is also based on the World Health Organisation recipe for oral rehydration salts which is specifically designed for fluid replacement in places without access to IV fluids. It doesn't taste very nice but a small amount of fruit juice or other flavouring can be added. I've tried making my own according to various recipes but am never confident in getting the proportions right to maximize absorption. What I like about Trioral is 1 sachet makes up a litre whereas many other commercial products make up only small quantities about 200ml which is worthless to someone with POTS! B x
  3. I tried mestinon in the hope it would help my OI, sadly it didn't but it was a decent laxative. I didn't continue with it just for this purpose as I have other laxatives, but for anyone not finding relief with the usual bowel meds it may certainly be worth looking at. It didn't have any side effects for me (and I am very sensitive) so would consider it quite a safe & gentle drug to try. B x
  4. Hi Eraena, I'm sorry you are struggling. It can be frustrating not getting a clear diagnosis but then even if you demonstrate typical POTS on the test, that is in itself a syndrome and can be caused by a number of different issues, not all of which can be identified. A repeatable diagnosis of POTS like in my case, also doesn't necessarily lead to any treatment that improves quality of life or functioning. What matters is that you feel unwell and are having symptoms that are interfering in your life, and even without a specific label there may be several treatment options to help you feel better. Have you tried any medication yet? How about compression stockings if blood pooling seems to be an issue? Regarding your BP, if it is persistently low there are a number of medications that can be used to raise it. You mention it dropping when you stand, but does it then stay low or come back up again? Mine drops in the first few seconds which is only observed on continuous finger monitoring, but by the time it can be taken manually, it has shot back up above where it started. Lack of sweating can also be a sign of autonomic neuropathy, and there are specific tests such as skin biopsy or sweat gland stimulation test. Are you able to go to one of the main centers specializing in autonomic disorders? They might be able to give you more answers, and most importantly treatment to improve your quality of life. I also use a recumbent bike and seated indoor pedaller, and something I've found really helpful that is so simple & inexpensive is a small plastic spray bottle that I fill with water to spray my face when I feel faint & my body too when exercising. I do seem to sweat appropriately although have never been tested for this, but the water spray still really helps. Best wishes B xxx
  5. That sounds so unfair to have a defined list of conditions and if your particular one/s are not on it you don't qualify regardless of how ill you are and level of functioning. I really feel for what you are going through. I would get the kind of lawyer Kim mentioned, who does it all and takes a fee at the end if & when you are successful. Here in the UK disability is based not on the name of your condition but how it actually affects your functioning eg if you can walk, cook, bathe, reliably stay conscious, etc. It makes more sense because you could have someone with cancer or multiple sclerosis who is fully mobile & can work & do everything for themselves but everyone has heard of their condition & it is perceived as serious, whereas the person with POTS who cannot stand, uses a wheelchair & passes out frequently is a lot more impaired but receives no compassion because their condition isn't well known or understood. I truly hope you get it approved & get the support you need & deserve. Get your specialists to provide as much info as possible, particularly the one who recommended you apply for disability. B xxx
  6. I totally agree. I hope I was never the kind of doctor we're all too familiar with (I don't think I was) & I wish I was still able to work. I was only allocated 10 mins for each patient though so at 6 minutes when they're still telling you what they had for breakfast...😉 All the best for your surgery! You never know, some people have improved from POTS after cervical fusion. I hope it goes well for you! Make sure you discuss your POTS with the anaesthetist beforehand so they can be aware that your BP and HR may be more labile, and that you are likely to require more IV fluids than the non-POTS patient to keep things stable. B x
  7. Wow yes a lot of women report onset after childbirth - I'd assumed that could be due to blood loss or hormonal shifts & not made any connection to my own case as I never got it after giving birth, but what the forceful straining is implicated in some way as the common denominator? It would be really interesting to break down whether postpartum onset cases had laboured naturally (even if like you they ultimately had a section) vs just had a section without going into labour. I may start a poll on that. Have you ever been evaluated for a spinal CSF leak? I just had an MRI with contrast last week to check for this, as CSF leaks can also be triggered by forceful straining especially in people with EDS like I have, and can produce POTS symptoms in particular the splitting headaches when upright that go away lying down. B xxx
  8. I feel like a real weirdo every time I tell my story - I was totally fine until 5pm, 4th August 2014. My dad came through the door with a balloon & my two young kids started fighting over it. I thought right, I need another balloon quick so there is one each. I went to the drawer where I knew we had some balloons, got one out and started to blow it up. It was really hard, not like a normal balloon but I was really determined and blew until I blacked out. I came to after a minute or so but still felt very faint. At first I wasn't concerned, people commonly faint after a forceful Valsalva, but as I lay on the floor waiting for the blood flow to properly return to my brain, time went by & I didn't feel any better. I was still down after 20 mins and although I didn't fully lose consciousness again at that time, the overwhelming feeling that I was going to kept coming in waves, despite lying flat on the floor. I still remember watching the time tick by on the oven clock, that's how I know exactly when it started. My dad called an ambulance & I was taken to hospital. Everything checked out normal except that I continued to feel very faint, couldn't stand up and was noted to have a high heart rate when I tried, although it took a further 3 years to be officially diagnosed with POTS. I later discovered that what I'd tried to blow up was a water balloon that you fill from the tap. It was never going to be inflated by mouth. That one act in that split second was the onset of severe full blown POTS for me & the end of my lovely life as I knew it. I would give anything to have that day again. I was since diagnosed with HEDS but my other symptoms of it are very trivial & I doubt it would ever have been diagnosed at all if not for POTS. Of course it could have been waiting in the wings for me anyway and triggered by something else at some point but I will never know, and could have had who knows how many more active years with my children if not for that. B xxx
  9. Are you still on opioid painkillers that are affecting things? It could also be that you're less mobile due to POTS which doesn't help the bowels. When I first got POTS my GI system seemed to get much worse at the same time, I was worried I had gastroparesis. However I have since come to the conclusion that for me the nausea is related to chronic cerebral hypoperfusion/presyncope - nausea is a common symptom of people about to faint - & the slowed transit & hard stools due to immobility and dehydration due to polyuria. At least with the bowel side of things unlike the orthostatic issues there are a range of effective medications that can help. Do you take anything currently? B x
  10. Bliss! I take movicol, magnesium citrate, bisacodyl and glycerine suppositories as needed. The latter are little miracle workers. My son had to get one yesterday & he was a different child afterwards 😊. I have EDS & I had bowel probs my whole life though long before POTS. B x
  11. That's a good idea to run it past the cardiologist first, as they have more experience with ivabradine. I hope it helps if you do decide to start on it. B x
  12. A normal BM is something to be celebrated for sure! B xxx
  13. Loving it so far! I am doing about an hour a day whilst watching TV. It comes with a year's warranty from amazon. I have used a proper recumbent bike in the garage since becoming ill but this is a lot more comfortable & accessible particularly in cold weather and allows me to be with my family at the same time. Cycling hasn't helped me stand any but exercise has independent benefits such as maintaining muscle tone (My steel buns are wasted in a wheelchair😉) & reducing the risk of blood clots - important in sedentary people. I would highly recommend one, they come in different colours and wasn't too hard for my husband to put the pedals on. I would stay away from the cheaper ones though as they don't last long. B x
  14. I have EDS too, hypermobile type. My dad also has an aortic aneurism and some other features but only me with POTS. Recently, I got myself scared witless about having the vascular type of EDS. Particularly as I have very high BP spikes. (note these aren't a symptom of vEDS you just really wouldn't want them with fragile blood vessels). If you get reading & find yourself worried like I did, there is a lab you can send off your saliva to for 250 USD for genetic testing to rule out the COL1A1 and COL3A1 mutations that cause vEDS. It is called INVITAE. I sent off a sample and thankfully tested negative which gave me great peace of mind and the turnaround was very quick. I live in the UK and sent it via fedex. This may not be on your horizon but I would hate to think of someone else panicking like I was, not knowing where to turn when there is a reasonably accessible way to put it to bed (or if positive get appropriate management). B xxx
  15. A non-SSRI may be safer. Mirtazapine may be an option to ask about. I took it for sleep and nausea (it is a potent antiemetic but only licenced for this use in veterinary medicine however no human licenced antiemetics helped me) when I first became unwell. It helped me regain the weight I'd initially lost, however I believe my weight loss at onset was fluid, and mirtazapine put it back in fat rather than fluid. I was underweight though so it was still appreciated. I would go back on it if I drop below 50kg again. If weight gain would be a bad thing for you though, it may not suit you. I also tried sertraline (no cardiac meds) as anecdotally SSRIs have been postulated to help in autonomic disorders. I think I was on 50mg. It made no difference, good or bad. I don't consider myself to be depressed as I'm pretty cheerful lying down! I am sad sitting up purely as a normal response to feeling so unwell and having a limited quality of life, just like anyone else would be, so I don't wish to take psychiatric medication. I am sure you've already had a bunch of ECGs as a baseline so I wouldn't worry too much there but I would definitely seek one after a couple of weeks to check for any changes if you do start on the a/d. B xxx
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