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About helen.t

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    Advanced Member
  • Birthday 08/22/1957

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    Glasgow Scotland

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  1. thanks diamondcut for your advice! i really appreciate it! you look as if you got most of the same illnesses as me. are you able to work? i struggled to work for many years while being ill and fighting it all the time until finally my body just couldnt seem to recover. that was when i finally got some proper answers as to what was wrong. i live in glasgow but i travelled to london to doctors there who have helped me although not enough to get me back working- i wish!.. thanks again...
  2. hi there, i've not posted in a while but i'm hoping that there might be someone from the UK who has POTS and being affected by the benefit changes that are happening here. I have received a form to fill in regarding my incapacity benefit and i am worried that it might be withdrawn. I am severey affected with POTS and other numerous health issues but i am anxious that my ilness won't be regarded as bad enough to continue to be in receipt of the benefit. I would find it impossible to work-- I had to give up 8 years ago. Is there anyone in a simiar position and how did you get on? helen
  3. Hi Janey, I know exactly what you mean. I suffer terrible migraine and is affected by food and gut problems. When my stomach not happy it affects everything especially the migraine. Migraine is a very complex condition. Our digestive systems are linked as well as a host of other triggers such as hormones, blood circulation, food, heat ,cold, the weather, light. noise just to name a few. I had a couple of excellent booklets on migraine but I must have given them out. If you look up migraine on the internet you will get some really helpful information. your doctor should be helping you too to g
  4. Hi there, I'm so sorry that this has happened to you. I just wanted you to know that I'm thinking of you in this terrible pedicament.I have no wise words or great advice to offer you but I felt so sad for you when I read your post. Is there some way you can appeal the decision? Helen
  5. Hi there, I completely identify with how you're feeling as well as everyone else here on the forum. It will be the end or likely the end of your previous life as you've known it to be and it is only natural for you to feel grief. However it is important not to let it drag you down into depression as that will only compound your illness and make you a hundred times worse than you are now. The best way I got round this was by taking good advice from a counselor friend who told me to focus on the small things that I coulddo rather than dwell on the things I can't[/i] do any longer. This was rea
  6. Pat, I dont think thats coathanger pain that you have. Coathanger pain affects you across your shoulders ,up your neck and into your head. I have had that pain too that your describing and it was made worse one time when I was given Fluoxetine. I ended up in hospital very ill indeed and they all thought I was having a heart attack/stroke as my heart rate and BP was completly going crazy but they continued to give me the drug that was making me ill as they didn't have clue what was wrong with me and added others as well! They then thought it was a virus affecting my heart muscles which was cau
  7. Yes I get this too and have had it for a long time especially with sitting up in the one place. I agree with Flops advice about lying down but if you are in a situation which makes this difficult I try to move around a bit. Stretch my arms out front of me then slowly above, move my shoulders gently up and down and around very slow, I then massage the painful area with opposite hand to try to release tension and encourage blood flow and try to do all that together. I also flex my feet up and down so that the calves of my legs are helping to pump the blood round my body and up to my head better.
  8. Hi again Janey, OOps sorry but I did mean to say it is a good idea to take joggies and loose t-shirts to wear during the day.Also a pair of shoe like slippers or light canvas shoes come in handy for the tests. There is an exercise test and a meal test done with the tilt table on other days if theyre not cancelled in place of new ones to fit your needs. I think thats about it from me. All the best again, Helen PS Where are you un UK?
  9. Hi Janey, I too have seen Prof Mathias and have been in UCLH Queens Square 3 times over the past 3 years for Autonomic testing. I have severe POTS, Coeliac disease, balance impairment and migraine related vertigo- which means that even when I don't have migraine pain I am still having migraine- I know it's wierd!! I suppose that accounted for the acuteness of my illness. I now have extremely bad tailbone pain and inflamation in lower back/spine and muscles, but on the whole I have been doing a lot better the last few months with meds from Queens Square and from my GP. Anyway to get to the test
  10. hi Tilly, I live in Glasgow and can relate to all you are going through. It took many years for me to get diagnosed properly too and when I was attending a Cardiologist, he also said that what I had was very unusual, had never seen anyone like me. He then became quite excited when he did his own research and eventually diagnosed POTS. The only trouble was he didn't know how best to treat me and I ended up in hospital with suspected heart attack/stroke symptoms. I was very ill but it turned out that the medication he gave me was making me worse but even the hospital docs didn't realise that. I
  11. Hi There, I too get a lot of pain when I'm static too long and have real difficulties moving at first. I presume it is due to the lack of regular blood flow round the body which seems to be a big problem for me and prob a lot of people with Dysautonomia. I waken very frequently during the night so I can turn myself or move a bit to relieve the intensity of the pain. Could you maybe set some alarm clocks to wake you at frequent times throughout the night so that you can move a bit? A recliner would be no use to me as I have excrutiating tailbone pain and have a problem sitting in that position
  12. Hi Folks, I have plucked up courage to go abroad to Spain for a short holiday for the 1st time since being diagnosed with POTS and various other health probs a few years back. I have been keeping a bit better recently with the various drugs i am on to help me with this condition. It is not too long a flight from the UK where I live and I have been able to cope ok with flights inside the UK so I am confident that I will be fine. My question is about travel insurance and whether anyone has experienced difficulty getting this while having POTS since as soon as you mention tachycardia to an insur
  13. Hi, My heart goes out to you as you are being so brave even contemplating doing something that you know will make you feel worse. It is impossible for other people who have not experienced your illness to comprehend what you are going through and I know how horrible that crushing chest pain is when you you are trying to cope under stress. I think that cognitive therapy is a good place to start if you are constantly putting yourself down and having to listen to others who THINK they know whats best for you. I would probably avoid telling anyone that you are going down this road as sometimes the
  14. Hi there, I have also been thinking about a cruise because it seemed that it would be a good way to travel but the thing is for me that I need to keep moving or my symptoms get worse. Walking is the only exercise i can do and I wonder if going on a cruise would restrict this. I'm not good in heat either and standing is impossible so if there was a lot of standing in line, waiting to get on or off the boat, I think I would find this really stressful. I also find that having to make conversation with people all the time extremely exhausting and wondered if that would be too much as well. It is
  15. Hi Everyone, Thanks for your replies which have been very interesting! I find it hard to know what is Pots related dizziness and the whole migraine/vertigo business. I have a falling over feeling almost all the time and have to be really slow at turning round or moving from one position to another. My eyes are affected badly too which means I can't go on computer for long. Does anybody else have that falling over feeling almost like your being pushed to the side? I also lose feeling down my left side and have great weakness and kind of almost lose consiousness/black-out, but not completely, fo
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