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Everything posted by rach73

  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 as I know that makes me worse or if its the pregablin. Even sitting still my heart is beating out of my chest. My blood pressure is all over the place literally 72/40 one minute and then 100/60 the next. Its very odd for me. If my bp is low it stays low and doesnt swing so violently. Im also having (more than normal) blurred vision and odd flashes of light appear a bit like a migraine aura but it lasts seconds and I have no headache. My short term memory is appalling, in the shower I find I can wash my hair three times without knowing that Ive done it. I ask the same question over and over even though Ive just had the same answer. My husband has the patience of a saint! Im really irritable - now that could be the lack of sleep. I also have other medical problems going on I am in the middle of a horrendous flare up of my bowel adhesions and I am having difficulty eating due to the pain this is causing. I know when I am in pain I have a very short fuse so again this probably isnt helping. I want to know if any of you have had the side effects of insomnia, racing heart (much more than you normally would) etc and if these side effects went away? I see my GP on Thursday and Im due to increase the pregablin to 50mg twice a day. If it makes the heart stuff worse Im going to have to knock it on the head. I am also have my mind racing constantly. When I wake from sleep (I am sleeping fine for about two hours) I am wired and wide awake with my thoughts just wurling through my mind. I have always been anxious and a worrier but in the last few years Ive regained control. I have no stress that I can think of other than worrying about having an op to get rid of the adhesions but the thoughts that are racing through my head are nothing to do with this. Can anyone help? Thanks Rach
  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 and I have returned to Slimming World which is a group in the UK its food optimising and instead of points there are syns. My aim is to lose a lb a week. I cant exercise a lot of my time is spent between a recliner downstairs and my bed. I can do a few bits around the house but this will wipe me out for the rest of the day. Exercise causes me immense hip and back pain and as soon as I start trying to exercise my POTS goes crazy not just during it but the rest of the day. So far since January 8th I have lost 9lb (approx 5 weeks) which is more than I ever expected. However as someone else posted you have to count everything you eat. I have started keeping a food diary to try and keep me on track. I will be honest I have been off the diet reservation twice and I have still lost weight. I didnt think it would be possible for me to lose weight without exercising but I have done it. I only expected to lose a lb a week the first week I lost 3lb (Ive stayed the same some weeks) and my highest loss after that has been 2lb. I am thrilled but it is hard when you are feeling rough to make sensible choices or try and cook! Thankfully my husband helps where he can. Dont give up you will do it. Rach
  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 very slowly before decreasing the amiltriptyline. Initially (for about 3 days) I was really out of it and felt like I was drunk! I am having some short term memory problems (now on my 3rd week) but I am not a zombie and Im not feeling depressed. I think I am just very sensitive to this kind of medication. Rach
  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 dream had wiped my memory of it. It took until I actually found the certificate of my degree to believe my husband. I hate it when I dream like this it makes me insecure and vulnerable, like how can I believe anything anymore. The confusion they create can last hours! Im not on anti depressants. I do take morphine day and night. Im so glad you raised this topic Rach
  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 patients they see in outpatients have nothing neurologically wrong with them and that the patients have functional disorders ( eg somatisation disorder etc etc). With neurologists it appears that unless you have a neurological condition that they have heard of, that can be quantified by their tests and follows the rules of that condition set out in their text books you are on a hiding to nothing! Im so sorry that this dr was so rude to you especially when you were paying for the pleasure! Rach
  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 all. Simon was an amazing skater, whose talent and dedication could have taken him to the very top of his sport. When Simon started his skating career his talent and determination was quickly recognised by his peers as someone to watch for the future. He learned so much from his coach, Jon who carefully nurtured Simons talent and helped to shape the skater and coach that Simon was to become. Simon's dream was to compete at the Olympics and in pursuit of that dream he travelled extensively, competing and training in many different countries. Simon spent time in the US training with Lorna Brown, who recognised his amazing talent and much to Scott's pride and delight, likened him to the next Robin Cousins. At his peak, Simon truly was brilliant, not only from a technical perspective, but he also performed with such passion and artistry that he took your breath away. Eventually Simon settled in Australia before his health prevented him from competing at the highest level. Simon loved living in Australia and often spoke of the great times he had with friends and family in Perth. In particular he would often speak of the wonderful times he spent with Lawrie and Scott when they visited. Simon's focus switched to coaching and he quickly established himself as a brilliant coach. His natural affinity for the sport and his enthusiasm and knowledge of physiology and technique made him a favourite with his students of all ages, from elite skaters to beginners alike. It was through skating that Simon came into our lives. He was Emily and Kate's first coach before leaving for Australia, but he stayed in touch with the girls through Facebook and continued to provide advice and encouragement. When he returned from Australia he quickly became a part of our lives and over time became like a big brother to Emily and Kate. It was only then that we discovered his love of experimental cooking and his ability to create an explosion in the kitchen from seemingly innocuous ingredients Skating was only one part of who Simon was. As his health deteriorated and prevented him from being physically able to partake in his sport, Simon never gave up hope. He relied increasingly on his friends and family for support and after treatment in Arizona, he was particularly grateful for the loving care that his brother Adam gave him when he returned to the UK. Simon was a gifted scholar who achieved 12 GCSE's at school and 4 A levels which were self taught. He was offered scholarships at Brunel University but chose to study an Open University degree which offered him the flexibility to train. Simon realised the importance of education and pushed his students to follow an academic path as well as aspiring to skating success. Simon had an inquisitive mind and spent a lot of time online with friends or researching his conditions. He was determined to understand everything about possible treatments to enable him to regain his dream. He never gave up and his involvement in many of the online medical forums earned him the nickname of Dr House, or Dr Simon, something Simon took great pleasure from... He helped so many people through his work online and touched so many lives. Far more than anyone realised. The number of responses and messages of support that have been sent since his passing has been phenomenal. Simon was a great inspiration to so many people. He was kind, generous and thoughtful and would always think of others before himself. When Simon's health really got bad, he was still determined to spend time with those he loved. He used the Spoon Theory to explain to us that the spoons represented the energy he had for that day. On an average day he maybe had 8 spoons to use and he would apportion these across the day. For example, going for a coffee, he'd use 1 spoon getting dressed, 1 spoon for the journey, 2 walking to the coffee shop, 2 for chatting , 1 for the journey home and 1 left for the rest of the day. Knowing he was willing to use his spoons to spend time with us was a precious gift. For anyone else, what Simon had to deal with would have been too much to bear, but Simon was special, he never gave up hope and anyone who got to know the real Simon loved him. Simon was never defined by his illness, but believed in living his life to the full and with "No Ordinary Moments". His mantra was "In pursuit of your passion, be neither timid nor afraid" and Simon lived his life by this. Simon was very close to his mum, Scott, to whom he owed so much, including his great love of the arts. He loved all forms of performance art and enriched the lives of everyone around him through his constant involvement and appreciation. He had a great love of language and poetry and would often express himself and his feelings through the written word. He was an eloquent and articulate young man with a wicked sense of humour. He loved comedy and would spend endless hours watching standup on his laptop. He loved to tease and bamboozle his friends and family with long words and was not averse to inventing new ones. Particularly if he was losing at Scrabble.... "Huggles" was a favourite word, which irritated Emily so much that she bought him a dictionary and went to great lengths to point out that it wasn't a real word. Simon's philosophy was based on love, forgiveness and second chances. He didn't judge others and always looked for the best in a person. He pushed all those he knew to believe in themselves and to be the best that they could be and inspired those around him. Simon was always generous and thoughtful and always had a knack for buying exactly the right gift and saying the exactly right thing. So who was Simon Waller ? Simon was a fiercely independent young man who had such great potential, he lived his life to the full and achieved so much in his 25 years. We all have our precious memories of Simon and he would want us all to remember him as the talented and vibrant young man who skated with a passion and flew across the ice, free of pain and full of joy. As a gentle and loving soul, he was a light that burned brightly and was taken away from us all far too soon. Lawrie's analogy for Simon is the story of The Snowman. It is a perfect fit for Simon on so many levels. He came for a short while, took us on an incredible journey but when it was time to go, he melted away to leave us with the wonderful memories that we will all cherish forever. This is the link to his tribute page https://www.facebook.com/#!/pages/The-Simon-Waller-Tribute-Page/327591434023507?fref=ts Thanks Rach
  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 visitors (as much as I can be) I dont allow anyone whos had a sickness bug in unless they have been 48 hours clear and I dont let people with chest infections come and see my either. It may seem harsh but everyone who does visit me knows that I need to protect myself especially having been on steroids at high doses on and off. My sister on the other hand has always had a dodgy immune system and caught some strange viruses / illnesses when she was a kid - I didnt get them. Now her son (age 3) is in nursery and she seems to come down with everything. I do believe she has a problem with her immune system but in the UK there is only one place they test you for it and most drs are pretty ignorant about it. Its enough of a battle getting a POTS and EDS diagnosis. I guess I am quite lucky but then my husband rarely gets colds and tends to get one or two chest infections a year along with a bout of flu despite getting the jab! Rach
  16. Hi, Simon did not die from POTS. Simon contracted meningitis and due to very serious health problems including POTS and Crohns his immune system was compromised. Unfortunately his body was too weak to fight off the meningitis. I am posting this as I do not want people believing that Pots killed simon. His medical history was very complex hence why he sought help from the USA. I dont know whether POTS has caused deaths or not. But I do not want people worrying unecessarily when hearing of Simons passing. Rach
  17. Hi a tribute page has been set up on facebook for Simon. Here is the link https://www.facebook.com/?ref=tn_tnmn#!/pages/The-Simon-Waller-Tribute-Page/327591434023507 A very sad day. Rach
  18. Hi as usual theres a really timely topic on here for me. In 48 hours I managed to sleep for 26 hours, last night I again slept for close to 13 hours and I feel very very groggy when I wake up. It takes me several hours before I come around. Its really weird because last Friday I only got 4 hours sleep and felt ok. Saturday had about 8 hours, Sunday I had about 10 hours, Monday I had 14 hours and Tuesday I had 12 hours. I seem to swing from insomnia to a normal sleep pattern back to insomnia and then excessive sleeping. This all started when my condition went down hill in 2007. I tried talking to friends about the excessive sleeping and all I got was oh your so lucky! Thanks for posting this Rach
  19. Welcome. Just wanted to say I had a terrible time coming off effexor made me extremely dizzy and emotional. Took me ages to do it slowly dropping the dose month by month. Just wanted you to know you arent alone. Also my sister has POTS too (I have it) although we are both old ladies compared to you lol! Rach
  20. I got told by my GP that it was normal for your heart rate to go up by 30-40bpm when standing and that POTS simply did not exist. He also told me that EDS was too rare for me to have. A neurologist said I had somatiform disorder despite his staff recording a blood pressure of 80/50 and a heart rate of 54. I felt like I was dying! I promptly changed GPs thanks to Anna on this thread! and the neurology team at the local hospital refuse to see me despite acknowledging I have POTS and EDS. My current GP and a private rhuematologist asked them to see me due to the myasthenia gravis symptoms I display and they flat out refused. Great care! My sister has the same as me and she is regularly challenged about her diagnosis, Ive been lucky so far since recieving the diagnosis. But I am sure in the future I will come up against ignorance in the medical profession. Rach
  21. Hi, dry eyes started when the POTS really got bad. Dry mouth constantly, skin has become uber sensitive and dry and flaky. My hair seems ok but I have a dry scalp. Great isn't it!
  22. Hi just by chance I was listening to the radio this week (radio 4 either weds or thurs at 9pm for those of you with access to the i player) it was a programme on why women live longer than men. For those of you interested its 78 for men and 82 for women (average age spans). They were talking about women and their hormones and I didnt know this but every womans heart rate increases by around 20% during menstruation. I nearly fell out of bed! I wonder if its a combination of hormones and the increased hr that makes us feel so ill during that time of the month? Just thought it was interesting I dont menstruate thanks to cerazette contraceptive pill so I dont experience the awful pots symptoms during this time - they are just pretty awful all the time! lol. However when I wasn't on this pill I was having a lot of blackouts. Rach
  23. so would I lol! However it does help big business / government not have to pay compensation.
  24. It compares with the grinch theory on small hearts! Both studies have major flaws. I thought it would be interesting for anyone who has been diagnosed with this condition. Thanks
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