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Everything posted by bombsh3ll

  1. What really clued me into CSF leaks was watching Dr Carroll's video within the past year & for the first time finding something that can be caused by a forceful Valsalva (my mode of onset), that causes these exact symptoms. Before then I had systematically worked my way through testing for all listed causes of POTS/OI, such as autoimmune, lyme, addisons etc which were all negative, but there was nothing on there that could be caused by a Valsalva. Once I learned that there actually was a recognized condition with these symptoms that valsalvas are known to cause, & that EDS
  2. Thanks, I definitely will do! I remember you posting about headache a while back - wasn't it you who was going to ask Dr Raj about the splitting orthostatic headaches? - could this be something to look into for you too? That can't be a coincidence! But you continue to have symptoms after the leak was fixed? Thanks lieze, I really hope things start to pick up for you also! B xxx
  3. If there was such a pill nobody would be on here. What a B****. You are well rid. You mentioned paying an extra $100 per month for that service - personally I would stop that & spend it on private help. That could include someone to be with you whilst you do floor exercises or supervise/assist you bathing. I am not able to stand at a sink (or anywhere), but can sit/lie in the bath to wash, so maybe with someone there in case you faint it may be possible. B xxx
  4. Spinal CSF Leaks have a troubling similarity to POTS – adapted from Ian Carroll’s 2017 presentation. CSF Leak POTS • Feel worse when upright • Feel worse when upright • Headache is prominent • Headache is prominent • Lightheadedness/dizziness • Lightheadedness/dizziness • Nausea/vomiting
  5. This is for everyone whose cause of orthostatic intolerance/POTS is as yet unexplained, particularly if it was of sudden onset, associated with upright head/neck pain & nausea, and typical treatment for POTS has had no or minimal effect. Please also continue reading if you have or suspect a hereditary connective tissue disorder - these are present since birth, yet OI is not. You may have simply been told "people with EDS get POTS" with no explanation as to a possible mechanism, & worse, no further effort made to search for one. Perhaps you have read or been told that EDS patients have
  6. I know it seems like research in this field is so patchy & they just go around & around, with promising leads picked up then dropped & picked up again ten years later, but IF the evidence continues to come out that some people have an autoimmune cause, I think treatments will start to emerge. In the UK it will probably be some years before they are made accessible for patients, but at least there would be a direction for many people to pursue who don't currently have one. What I can say that might provide a little bit of hope is that when I went to the NHNN in London, despite
  7. That is really interesting to read, thanks for sharing! I wonder if the rabbits were symptomatic or simply had an increased heart rate, if only bunnies could talk! Unless any of them fainted, poor things! My own cause is extremely unlikely to be autoimmune but I am always interested in the latest research, much appreciated. B xxx
  8. @Wufflebear thanks for replying, I am so pleased you had a good effect from the blood patch!! I am really hopeful that this is my issue too, especially given my mode of onset & connective tissue disorder. I live in the UK so would not be able to visit Oregon anyway but I am sure it would be OK to say your doctor's name on here if you had a positive experience, in case it helps somebody else. If I get nowhere in the UK I may try to raise the money to go to Stanford & see Dr Carroll, or Dr Gray Leithe at Duke, but I am hoping it doesn't come to that. I had an MRI with
  9. Wow wufflebear thanks for coming back on and sharing that! CSF leak is what I am currently exploring - I do have mild EDS and my illness was caused by a forceful Valsalva. I am going to see a private specialist in CSF leaks this Saturday, hoping to ultimately access blood patching. I actually read your post above & thought tingling face - possible CSF leak because it is one of the listed symptoms (but not one I personally have). It can do. I had a clear inciting event as I tried to blow up a water bomb that I mistook for a balloon, but many people do not recall anything.
  10. Lieze, I know you are in the US but here in the UK even the highest reading you mentioned above would not be treated with medication. Sporadic rises like that are not harmful, indeed they are normal, like during exercise in healthy people. Blood pressure varies throughout the day and is not meant to be the same all the time. Antihypertensive medication would definitely not be appropriate for someone whose lower end is 96/53. I would go by how you are feeling rather than the numbers. My blood pressure and heart rate are normal 99% of the time yet I feel awful upright. Wh
  11. @edriscoll Thanks, I am glad you have ruled out a CSF leak. I just wanted to put it out there as although I have never come across another patient like me with a POTS diagnosis whose illness was brought on by a forceful valsalva (although since learning of CSF leaks I have encountered many with diagnosed leaks whose illness started this way), a lot of the things that have been reportedly associated with abrupt "POTS" onset such as car accidents, minor trauma, whiplash, concussion, spinal surgeries etc are also recognized to cause CSF leaks. Even more prominent are reports of postpartum "
  12. @Clueingforlooks do you have a gastroenterologist that you could discuss non-drug options with like fundoplication or the linx procedure if it is so severe & medications are not effective/tolerated? https://www.linxforlife.co.uk/about-linx.html?gclid=EAIaIQobChMIsu3bhZDp5AIVw7TtCh049Qo_EAAYASAAEgJ5oPD_BwE Before I became ill I was considering this. My omeprazole was (and still is) extremely effective but as I was young and had been on medication many years already, I would have preferred to not to have to take it for the rest of my life. It is no longer a consideration for me but
  13. Thanks for sharing your experience. How did you get on with the returns process, was it straightforward or difficult with hidden charges etc, did you get all your money back? B xxx
  14. @edriscoll It is good to hear you had success with the bone mineral protein because I would definitely choose to supplement that too in addition to either my own bone and/or cadaveric. I know there are different types & some of the earlier ones were removed from the market, but some people have had problems with it overgrowing. ChronOs is reabsorbable though so I don't think it has those issues. Just thinking though about your sudden dysautonomia onset post-op, sorry if this is something you've already crossed off, I know how much all of us with chronic illness despise the unsolicite
  15. No, I don't get that. Being upright is consistently awful, lying down is always lovely! B x
  16. I don't have "flare ups", never have. In a way it sounds nice as I like the idea of it being less bad at other times rather than consistent. I don't tolerate heat well since I became ill, but I don't think that is what is being described here? @Pistol I hope you feel better soon. B xxx
  17. I'm so sorry to hear that Derek, by all accounts it seems to be routine & the norm for a first application in the US, so please don't see it as anything other than just a part of the process. Keep up your determination & efforts, I wish you the very best with your next round. B xxx
  18. POTS in teens is recognized to remit spontaneously more often than not. If you have the money to go there without it causing financial hardship then by all means, but I would not advocate anyone spending the kind of money this facility charges if it is going to compromise their own or family's financial security or lead to debts. There are other experiences online that you can read about this center, Ilana Jacqueline at letsfeelbetter and Jenna at parasympathy have both been there. I have personally spoken to a staff member there and corresponded with them directly about what
  19. And thank you so much for taking the time to share it.! The surgeon I would be using typically harvests rib for the grafts but I would definitely ask about pelvic. They also use cadaveric donor bone and chronOs synthetic bone mineral protein either instead of, or as well as, bone grafts harvested from the patient so it seems to be tailored to individual needs. Having been unable to do weight bearing exercise for 5 years & being low BMI & largely housebound so not exposed to sunlight my own bones may be a little osteopenic, so I would need to consider the best option for the
  20. Your age & symptoms certainly don't scream Parkinson's (& could be a large number of other things) but there are things there that make it a possibility that you should definitely discuss with your neurologist, I am glad you have appointments lined up. More typical symptoms of PD would be slow shuffling gait, blank facial expression, "pill rolling" tremor & erectile problems in males. Cramps can of course be completely benign & occur in healthy people. I got them every now & again back when I was healthy, funnily enough not since developing dysautonomia. I
  21. It is brilliant, I wouldn't have thought it possible to capture what presyncope feels like in a painting, as images invariably tend to depict vertigo or spinning, which is not typically what is experienced when close to or just before fainting, but this one absolutely does! B xxx
  22. Thank you so much for your insightful post and sharing your experiences, I really value hearing from someone who has had a fusion surgery. That is a lot of useful info that I will def consider when questioning my surgeon. That's awful, I'm so sorry. Is there any way the intubation/handling of your neck could have caused craniocervical instability? I have heard of others getting it after surgery (and recovering after craniocervical fusion). Alternatively is there any possibility the surgery could have caused a spinal CSF leak? That is my number 1 differential diagnosis just now. T
  23. My heart goes out to her dealing with all this at such a young age. I know kidney stones can be very painful (although I have never had one myself) & hope she manages to get over that quickly! I would have thought that would be one problem less likely to happen in someone with POTS given the volume of fluid we drink, so that is very unlucky! So the fainting post op didn't hurt the fusion? That is a relief to know. Firstly I am going to thoroughly pursue intracranial hypotension/spinal fluid leak as the cause of my illness given my mode of onset & splitting orthostatic headac
  24. Maybe take some of your home readings with you plus a well written handout like the ones from this site on POTS. That should help the discussion along & provide some info if they are not familiar with it. B xxx
  25. How frustrating! I was quite familiar with the game of medical "hot potato" during my career, when multiple specialists would each argue that a complex patient didn't quite fall within their remit, or were only interested in addressing one piece of a larger puzzle, and now experience the same as a patient Yes, I just threw an opened but full sachet of trioral in the bin! I just hope it hasn't caused any lasting damage being like this for so long. People with diagnosed leaks are advised to lie flat in order to prevent excess traction on the delicate structures in the absence of a flui
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