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About Janey

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  1. I've been off the forum for a bit because I've been feeling a lot better, almost normal... until the past few days. Thanks to feeling a bit better I joined a gym and started to do a bit of walking on a treadmill and some cycling on the lying down bike. I thought it was all going well but the past few days when I have finished my (very small) workout I have felt awful. I have posted before about an adrenalin rush I oocasionally get in the middle of the night. I wake up randomly, have diarrhea, nausea, vomiting, my pupils are super-dilated, BP drops and my heart is pounding in my chest. I also f
  2. I very rarely have diarrhea (its usually the constipation and gastroparesis problems that afflict me) but I have suddenly started having it over the last few days. Stomach cramps and then that mad dash to the lavatory. I always check my symptoms within the autonomic remit first to see what's going on, but just wondered whether those with diarrhea as one of your autonomic symptoms, what's normally the reason that it occurs? At first I thought dehydration, so I've upped my water intake. When that didn't make a difference I thought low beneficial gut bacteria because of my intestinal dysmotility,
  3. Hi KJD111 - I would post this as a new topic so more people will get to see it!
  4. I'm about to start full time work again and have got to go on the London Underground as part of my job. I really need a cooling vest to do this otherwise I just faint and get very dehydrated. Does anyone know where I can get one in the UK?
  5. Thanks for all your help guys. I'm pleased that migraine and stomach problems are related. It creates the worst kind of nausea feeling because it's both "headache nausea" and "gut nausea." I just don't know how to prevent these GI shut-downs. To top it all off I now have thrush too - probably as a result of some bacterial overgrowth or other, despite me taking 1000's of billions worth of good bacteria a day... It's just one thing after the other. I've been told I can take a pill for my migraines but that I will have to take it every day, even on my good days... which puts me off...
  6. This is really interesting... because when I was on cipro, I had no symptoms...
  7. Can anyone relate to this feeling? Take the heartrate issues out of the question... Guts are backed up - gastroparesis has flared up and intestines aren't pushing stuff through, migraine, neck and shoulder pain seems to correspond with nausea, feeling like they are all linked and causing each other. Nausea and Migraine pain gets 100x worse when standing up, and gets a bit better when lying flat, but standing up and walking around is out of the question. Does anybody have it like this some days? Why do my migraines always correspond to my gut problems?
  8. One other thing - I think they just took all my test results off for "research" and didn't consider telling me what they were! Only confirmed what I already knew I had...
  9. Flop... thank God you wrote that! I am so reassured... I'm going to send that to my Dad if you don't mind, so he sees that someone else thought Dr Ingle was being thoughtless. He's now my dad's favourite doctor because he's confirmed to my Dad that I am actually able to work and apparently "fitter than most people." So technically he's done me absolutely no favours. I've also emailed Mathias' secretary Catherine Best and Professor Grahame to see what he thinks about someone saying POTS secondary to EDS will "definitely go away." Again, thanks so much. Janey
  10. I've also been diagnosed with this. I take domperidone at every meal time and eat small, frequent meals. It doesn't stop it completely, but it lessens the amount of time I spend feeling uncomfortable.
  11. I've spoken on here a lot about how we have a great POTS doctor in the UK - Professor Mathias. As he's so great, it seems that he's very busy, and he has a whole range of junior doctors who see his patients for him, for follow-ups and help. Anyway, I went for my hospital follow-up two days ago and had a consultation with a Dr Ingle who I hadn't met before. He basically told me what I knew already -- that I had an extremely straightforward case of POTS caused by EDS III, and had I taken all the measures they'd told me to take when I left the hospital last time (eg salt, hydration, tilting the b
  12. My heart goes out to you. You are in my thoughts and prayers for a speedy recovery.
  13. Rach, I'm so sorry for what you're going through. I went through exactly the same thing, except my GP kept telling me that I had "IBS and anxiety." I have the email of the POTS specialist in the UK, Prof Mathias who I emailed as a last resort, who over-ruled my GP and got me in on the NHS. It took a long time (he has a year waiting list) but it was worth it. Very few general care doctors in the UK understand the autonomic system, as it is rare to have a problem with it. You will find that they never understand, even if you do get diagnosed with it. Luckily there are a really supportive group o
  14. I first developed symptoms at 15 when I started getting really ill after lunch at school. I can only tell now that it was low BP due to blood pooling after my lunch. I then started rowing seriously and competitively. I won a competition on the coldest day of the year and got stuck in a boat in my rowing slip in the freezing cold on the river for an hour after I'd won because no boats could get to me. After that I had various "malaises" (basically like POTS attacks) which seemed to go on for months. Doctors tested my blood count and did the blood test for glandular fever but couldn't find anyth
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