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rach73

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About rach73

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  • Birthday 11/01/1973

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    rach73
  • Website URL
    http://themyastheniakid.blogspot.com/
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    Female
  • Location
    Devon, UK

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  1. Thanks for your replies. Ive tried gabapentin and was even worse on that. Amiltriptyline is causing me bladder problems. Its a nightmare as I need something for neuropathic pain otherwise my left leg is constantly on fire and at night cant have anything touching it. I see my GP on Thursday so I will discuss it with him then. Thanks Rach
  2. Hi, I just wondered if any of you can share your experiences with Lyrica or Pregablin as its known in the UK? I started this medication in January on 25mg once a day. A fortnight ago I started taking 25mg twice a day. Initially for the first couple of days in January I felt like I had consumed one too many gin and tonics and during February noticed that I was having much more trouble sleeping. Two weeks ago I increased to 25mg twice a day and I can count on one hand how many good (pots good!) nights sleep I have had. My POTS symptoms have gone nuts, I dont know whether thats due to poor sleep
  3. hi, I put on weight as well when I first got sick with pots. Initially I put on 30lbs after losing that 30lbs the previous year. I stayed that weight until I was put on steriods due to the drs believing I had maysthenia gravis. I then put on 40lbs in the space of 6 months. Having steroids was awful I was constantly hungry and nothing satisfied me. I just ate and ate. I came off the steroids about a year later weighing the heaviest I have ever weighed. I went on a liquid only diet and lost 40lbs in a few months but have kept the 30lbs (and some depends on the time of year). This year my husband
  4. Hi, I tried gabapentin last year and tried really hard to get on with it but it just made me turn into a zombie. I didnt really speak, felt totally detached from reality and had no energy to move or do anything. It made me feel quite depressed as well. After 12 or so weeks I came off it as I never came out of the zombie state (I was hoping it was a side effect I would get used to and it would go). I discussed it with my POTS dr and he called it an evil drug and due to the problems I am having with amiltriptyline he suggested I try pregablin (lyrica) but on a small dose 25mg and just up it very
  5. Hi, Yes I have very vivid dreams that when I wake up I dont know if it was a memory or a dream. In one dream I was in the royal navy and I had abseiled from a helicopter. I did want to join the navy when young but never did. I have never been in a helicopter and I am beyond terrified on heights. Yet it took me several hours to sort this out in my head! In another dream I didnt go to university and didnt have a Levels, the dream upset me. On waking I had to ask my husband if I had a levels and if I had been to university the answer to bothe questions was yes and I have a degree in history. The
  6. Hi, I am so sorry that you had to deal with this "dr" with a massive god complex. Unfortunately as soon as I saw that it was a neurologist what you continued to write didnt surprise me at all. The first Dr I was under at the hospital was a neurologist and he to this day will not admit he was wrong about his diagnosis of somatisation disorder and that I do in fact have EDS and POTS. His embarressment must be extreme because he refuses to see me still despite other Drs at the same hospital asking him to see me. Neurologists have writen many articles in their own journals about how 60% of the pat
  7. If there is autoimmnune stuff going on it would explain why I have seen so many people report in facebook groups etc that their POTS has improved (not got better just improved) whilst being on steroids for other conditions. Very very interesting. Rach
  8. Hi, Just to go back to my earlier post about local anesthetics, they dont work properly on me. I need larger than normal doses to get numb and then I burn through it at a shocking speed. Ive had part of my toe nail removed when the local had worn off - I didnt know I had EDS and the drs didnt believe me despite me jumping a few times! I also had a lumbar puncture done after the local had worn off as the junior dr couldnt hit the spot! Anyone that says people with EDS have a low pain threshold.....try the above procedures without a local!
  9. Hiya just thought I would add these two links http://www.hypermobility.org/beighton.phphttp://www.hypermobility.org/beighton.php http://www.hypermobility.org/diagnosis.php I saw on facebook - so how true it is I dont know? is that EDS should be diagnosed if there is a problem with local aneasthetics, bjhms doesnt have this. But as I say who knows? Rach
  10. Hi, some one that advises the government in the UK on disabilities (a Prof but which one I am not sure) says that 78% of people with EDS will have dysautonomia of some kind including POTS. Why they dont know but the link is certainly known about. Rach
  11. Hi, When I worked I used to terrible about an hour after my lunch break. I would yawn so much it would be a struggle to speak. Now I know that its caused by my blood pressure dropping and not just after a meal as soon as the yawning starts I lie down! Just saying or reading the word yawn makes me do it lol! Also since leaving work I have drastically upped my fluid in take and that seems to stop the yawning attacks! Rach
  12. Hi, I get a low BP with a normal heart rate. Yesterday afternoon it was 80/53 and I felt awful yet my pulse was 78. However on other occasions I get a low BP with tachycardia. There doesnt seem to be any rhyme or reason to it. I hope you are feeling better today Rach
  13. Here is the eulogy that was read at Simons funeral for thise who dont do facebook My husband Adam was given the incredible honour of being asked by Simons mum, Scott to write and read the Eulogy for Simons service, we would all like to share it with you Simon Who was Simon Waller ? Simon was so many things to so many people, it is difficult to find the words to describe who he was and the loss we all feel. He was a loving son to Scott, a doting brother to Adam and Lawrie. He was a dear nephew and grandson and he loved his Papa very much. As a dear and cherished friend he was loved by us
  14. From groups on facebook seeing Dr Mathias privately the wait could be 3-4 weeks on the NHS 9-12 months as he really is the only expert in the UK. Many people have complained that the after care isnt great but the initial appointments are good. You can probably google him and get his telephone number to contact his secretary. He will see you without a referral. However the appointment will cost privately £350. Too expensive for me when I calculate in travel and hotel costs. Hope you get your appointment soon. Rach
  15. Hi, My immune system is working ok with POTS. Ive found my general health has actually improved since leaving work but then I used to work in a super market where people would think nothing of coughing and spluttering over you. Even before my POTS got so bad I became housebound I rarely caught a cold. I did get chest infections and tonsilitis but since leaving work I get maybe one chest infection every 18 months and Ive had the flu every year - which is more than when I was working. My recovery time is longer with POTS it will take me several weeks to bounce back. Im very strict with all my vi
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