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Everything posted by persephone

  1. I took 6 years to get my PhD instead of 3 but I now work full time as an Oxford academic.
  2. I've had POTS in some form since 1994 but wasn't diagnosed until January 2005. I still have it now. I also have EDS. It fluctuates though.
  3. Thanks for the replies. Lieze- yes, it was a tricyclic antidepressant prescribed for neuropathic pain. I was already taking tramadol and provigil (both serotonergic drugs) and the third addition tipped the balance into serotonin toxicity. It made me really unwell. I'm just glad it was caught in time.
  4. I'm just coming out of a nasty flare up following serotonin syndrome and a UTI that spread to my kidneys. I became a bit of a human spirit level, but am becoming more upright now. for about 7 weeks I've been extremely unwell; too sick to study and am at home with my parents. I reached a turning point today after being utterly spoonless for almost 2 months. What have you all found helpful for recovering from a flare up? I try not to push myself too far; to lie down when I need to, but make sure I walk each day and spend time upright. I try to recharge and put my energy into recovery. I take time away from the PhD I'm working on, and move back to my parents' because I become too unwell to cook or to look after myself properly when living alone. It totally *****, especially as I can be quite high functioning when I'm *not* in a flare up. I sometimes wonder if it's as hard as having no let up from symptoms at all - having a taste of normality, or POTS-free living that's then taken away, can be so painful.
  5. Does anyone else find that as they get older their flares last longer or are harder to recover from? I find the flares harder psychologically now than before, having had a taste of wellness and normality.
  6. Hi all, Thanks for the responses. Serbo- can you help me understand why I need to reduce my salt? Funnily enough, I've been craving and taking a lot of it- and today I haven't had as much and it's the best day I've had on the DDAVP pills so far.
  7. Hello all - long time no see! Have checked through past posts and not found anything on this specific query: Does anyone else get weakness or fatigue or brainfog on desmopressin? I started it 4 days ago and am sleeping on average 12-14 hours a night, and feeling so weak that I am supine the rest of the time I am awake. I've just had a 2 week hospital stay following a UTI which caused a massive POTS flare. My hydration went wonky; no matter how much IV I had- even one day having 6 litres, I still peed it all out and went into 'negative fluid balance'. The desmopressin means I don't spend my entire time in the bathroom, but I feel REALLY weak. Hard to tell if it's because I was flat on my back in hospital for days on end, or the desmopressin. I think the desmopressin is doing something weird though because my brain is so fuzzy. Any feedback, suggestions, or experiences would be very welcome. Thank you all
  8. Lieze it really sounds like your state of mind at the moment is not helping you. Can you print out what you wrote here and show it to your doctor? I really think this might be a sensible idea, so they can understand how you are feeling. None of what you have described sounds like pots or tachycardia to me but it sounds like you need someone to get to the bottom of what it making you feel so bad. Get well soon
  9. Lieze aren't you relieved you have a doctor who wants to get to the bottom of what's wrong with you? Look back at the posts others have written here- people who, even with a secure diagnosis of POTS, have had nightmare experiences in the ER with Doctors who have never heard of POTS. Do you know how lucky you are to have been treated so well, and have a Doctor who even knew what the initials of POTS stand for? Many folks here would give their right arm for a Doctor like the one you saw. As for it being coeliac/GI: WOW! If I could turn back the clock, and be diagnosed with something as fixable as coeliacs or another GI issue, instead of POTS- which, let's not forget, is treatable but not curable, I would be over the moon! Your biggest worry at the moment does seem to be the problem you have with eating, so I guess it would kind of fit that it's GI related. You say you're a 'nervous wreck' and scared of tests. What is it you're scared of? What is it that you want to happen? Do you want to be told that you don't have POTS, or that you do? Coeliac I know can make people feel lousy- my brother has it. But I also know that anxiety can heighten sensations all over the body, and you seem anxious in very many of your posts. I hope you can get the answers you're looking for and feel better soon.
  10. If you type pots and fibromyalgia into google, I'm sure that a lot of things will come up. Maybe give that a try? That can give a good sense of what there is.
  11. ps your mum has the right idea about not missing school. Try and have restful weekends to compensate!
  12. Hello! If you're 15 you are the right age also for a younger forum called Dynakids- Dysautonomia Youth Network of America (I think that's what it stands for- www.dynakids.org
  13. Don't even talk to me about BCBS. I had nightmares with them during my stint in America People mock the British system because we can't always choose which doctors we see, but at times like this, I see the value in our system: if your doctor said you needed a test, you would get it, no matter how much it cost. And it would cost you nothing. I wish I could help. I wish your system was more like ours. Can you appeal it? I know when I was in America I was told BCBS had an appeal procedure - if you pester them enough, and explain what you've explained here, could they just concede defeat? I met a lady in hospital in the US who had actually lost her house because of her health care costs. I find this truly terrifying. I wish I could change it, and make it better so you could get the care you need. It worries me every day- I still get flashbacks to what happened to me when my pots flared up in the US. I don't think I'll ever forget it. I'm rambling so will shut up! But, can you let us know you're ok, and whether you get this CT or not? Hugs
  14. The brain fog can be caused by cerebral-hypoperfusion: in other words, not enough blood and oxygen reaching the brain. Do you find you can work better lying down? Do you get pain where a coathanger goes- in the neck and shoulders? These are hallmark signs. I'm not sure what helps specifically. One of my doctors is now suggesting rowing in the gym because the forward lunge could help cerebral perfusion. I know what it's like to struggle- I've been in college since I was 19 and I'm now 29. I'm working on my PhD and nothing is more disheartening than when you want to work but can't. It's a shame that your University won't support you. My only experience of a US University was an ivy-league on the East Coast where I was meant to spend a year but they were so unsupportive of my needs and my health that I had to be airlifted back to the UK by air ambulance as I got so sick. I was shocked at the discrepancy in care standards between UK and US educational institutions. IT was a horrific experience. In the UK, there is a government funded disabled students' allowance which can fund assistive technology and equipment. They key things I've had through this which have helped include: 1: laptop with assistive software- for example, it can read my pdfs to me if my head hurts and I can't look at the screen 2: ergonomic chair for library which reclines and has a foot support to keep my legs elevated: this is a HUGE help and could be useful in class for you if you're still having classes. 3: personal assistant to fetch and return library books to conserve my energy 4: permission to drink in the library so as to avoid dehydration From what I can gather, these things can be provided by a US university but in my experience, they simply weren't interested: I told them months in advance what I needed, they told me it wold be fine but they effectively did nothing. Thus ended my forays into the US University system! It was a very difficult time for me, and if that's how an Ivy League behaves, when they have unlimited financial resources and pride themselves on accessibility, then I dread to think about the behaviour of universities with less financial assets and a less open-minded approach. Good luck- I wish I could do more to help. I just couldn't survive in a US University. I think it's quite telling that over here I can be a successful PhD student, but in the US I was given no help of any kind.
  15. Epogen is a fantastic treatment for autonomic dysfunction, especially in people who don't respond well to other first line drugs like midodrine and fludrocortisone. I took it successfully for 3 years but no one adjusted my dose in that time, which caused the drug to lose efficacy. It is subcutaneous and involves self-injecting which is easy to get used t. Blair Grubb has used it with success in patients, but from what I can gather, insurance in the US can cause problems because it's quite expensive. The drug works by effectively thickening the blood, thus raising bp. It can help hugely with cognitive function. If labile bp is a big problem for you, Epogen is the way forward. Every drug will list dangerous side effects- especially when treating cardiac and autonomic symptoms.(ANY drug taken in overdose can do damage or kill you!). You did absolutely the right thing by attempting to find others who have taken the treatment. Epo doesn't cause anaemia. It is used to TREAT anaemia by stimulating the production of red blood cells. Good luck!
  16. It sounds like a panic attack, especially as you were sitting down and not standing up at the time?
  17. Coathanger pain can be caused by cerebral hypo-perfusion. Many POTS patients also have Ehlers Danlos and fibromyalgia. I do. My biggest problem day to day is pain at the moment.
  18. Ishould also point out that this is an extremely potent drug- it has serious side effects which can include bradycardia. Therefore anyone with a predisposition towards a neurocardiogenic or vasovagal response alongside pots needs to be extremely careful when taking octreotide. I don't know a single person who has been commenced on this drug in the UK outside of a hospital, precisely because it is such a powerful med. If anyone has any questions about octreotide, I'd be happy to help as I have been taking it for a while now, and my cardiologist has written up the results.
  19. Just to confirm guys, there is NO WAY this drug is available in the UK without a script. I say that as someone who has been taking it for almost a year now here in the UK myself. In fact, many doctors won't prescribe it because it is prohibitively expensive. It can cost as much as $400 per week. Although we don't pay the costs for our meds a patients, our doctors must, and many have a limit on what they can spend on a patient. The long acting version of the drug alone can be over ?1,000 per 28-day shot. In addition, it is not used at all widely here. No pharmacy would happen to stock octreotide to sell over the counter. It has to be ordered, and only after the pharmacist receives the script. I really am not sure which pharmacy you bought it from Jonathan, but they could get into serious trouble if they really did sell it to you in the way you describe.
  20. what symptoms did you have?
  21. Ken wheelchairs are no problem but do make sure you tell them in advance that you have needs- airline and airport. The only feasible way for me to fly is with supplemental oxygen. I take this option on all my flights over 1 hour in duration. The airline provides it and sets it up. I was horrified to discover that it's at least $100 per leg of the flight in America- here it's free. The other crucial thing is fluid in take. You MUST drink as much as you can. Youcan get dehydrated in the cabin otherwise which is what will aggravate the dysautonomia. If you drink as much as you can, make use of the supplemental oxygen, and think positively, you should get away without too many ill effects. So, to recap: 1) tell the airline about wheelchair access 2) get oxyen 3) drink as much as you can
  22. Are you sure your bp went up and not down? I get bp drops and speeding up of HR,plus the most excruciting head and jaw ache on the left hand side. It was so unbearable for me in the end that I couldn't eat a proper meal- I had to have the odd bowl of breakfast cerel (wheat free, with soya milk) each day. The best drug for this is OCTREOTIDE. it specifically treats postprandial symptoms (ie- symptoms with pulse andblood pressure after eating and drinking). If you do a search through my posts, or simply type octreotide into the search bar, you will find lots of things come up. Blair Grubb has a paper out on octreotide in treating POTS. He only tried it on 12 patients but I am part of a group taking it here in the UK. I was the first UK patient to take octreotide in its long acting form. It is viciously expensive- at the dose I am now taking, each shot would be almost $3,000. But in the UK, because we have a civilised/democratised system, I get the injections for free :-) There is no magic cure to make the reflex of pots disappear for all patients forever, but the symptoms can usually be managed pretty well with a bit of determined tinkering and fiddling. Stay positive.
  23. You're just like me Corina- it would have been impossible for me to wheel myself. So glad to hear how well you are doing with the octreotide. Magical, isn't it! Now neither of us need worry about wheelchairs anymore!
  24. Hello - just a quick question leading on from discussion on another thread. I have used a wheelchair in my time because I got so hypotensive I would break bones on standing, and because the exertion was too great. However, I couldn't self propel. I had to have someone push me- the act of pushing my arms back to propel the wheels would have made my heart skyrocket. In my admission in September I was in a wheelchair and self propelling in the wheelchair made my pulse hit 175 bpm. This makes me wonder - those of you who use a wheelchair for POTS- how do you manage to also self propel? I ask because thinking about this logically, if you have the strength and stamina to use your arms like that, while keeping your legs still and in a position that would let the blood pool in them, wouldn't it be LESS difficult and cause less pooling if you simply walked, but in cases of weakness, did so while holding on to sometimg- say walking with a cane, or a walker? Would like to know what other folks think. As I said, I've been a wheelchair user my self, but I'm not now.
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