Louby

Hello, yep i get twitches too! Last night I fell asleap on the sofa, and my whole body twitched so hard i almost fell on the floor, managed to click my neck as well - ouch! Apparently according to my boyfriend it was quite impressive, after he had managed to get over the intial shock. I also get very bad cramps in my hands and feet - the only way I can describe it, is that they go like claws, and it is really painful. does anyone else ever suffer with this. (My head is really fuzzy today, so sorry if i am not making too much sense.)

Thank you for the support, I don't know how I managed before the forum. It is so helpful to know there are other people out there who understand, and can remind you to listen to your body, and to do the things that maybe deep down in side you know that you need to do (the things you would tell other people to do). It's great to be told/reminded that it's ok to rest and that things are going to be ok, and because you guys all know exactly what this is like- it seems to make so much more sense, it's nice to know your not just going crazy and that your not alone. So I am pleased to say that I've taken your advise, and rested when i needed to and done things when i felt up to it - i do feel more calm, and i guess I just got scared there for a bit, but you have all really helped. I've placed my pantyhose on order - i had a choice of tan or honey, i went for honey (hoping these are not too brown!) I have a fluffy pillow, which i have sprayed with lavender oil for relaxation, and i am taking today at my own pace. Thanks for reminding me what to do, I don't feel my best but i feel more like i can cope a bit better , and my lovely boyfriend has promised me a slap up curry tonight - with extra salt! Thanks so much, hugs back to you all, and i will be here for you should you need me take care Louby. just a final word, genie what is a salt spray?? I tend to carry little sachets of salt around with me. and find this very interesting...

you are one of the sweetiest people, thank you - it's so difficult, burst into tears reading this, more from relief of someone understanding (can't speak to my boyfriend today, as he is really busy - also don't like him to worry to much as he would want to come and get me and he can't today) Shall go and get myself checked out by family doctor tomorrow - although he has limited experience of POTS, then call my proffesor with blood pressure readings etc - the way healthcare works in the UK is complicated... Convinced my boss that I should spend the day tomorrow "working from home" I've never thought of taking electrolyte drink before, but yes we do have this in the UK and i shall give this a try. No luck with the panty-hose, still got the flight socks. I've been taking salt in diet coke, this afternoon seems to work for a while but the pain in my hands is just horrid - have to attend a meeting, as soon as this is done i shall disapear from work. Tea and scones sounds fabulous, thank you so much for the support it really does mean so much

I have had the worse couple of days It all started last week when I was feeling really exhausted, come the weekend I just slept and slept. I also kept getting increasingly thirsty and the pains in my arms and legs started to get worse. I am waking up in the morning, gasping for fluids, for the past two days I have been drinking around 2 litres before leaving home - I am a bit worried that I will drink too much. All the usual techniques that I follow to get myself up and going are not working, and the pains are getting worse and are lasting longer. I am going from so hot to so cold and I feel so sick, I have lost 4lbs in the past two days. I keep going from being starving hungry to the though of food making feel physically sick (this food issue is quite new to me) I also have this throbbing pain in the pulse points in my neck, and my heart feels like it is going to jump out of my chest. Last night when I arrived home, I laid on the sofa and rested for ages, when I stood up, I had to practically sit down straight away, within about two minutes my heart was beating at around 150+ My head is so fuzzy. I have tried loads of things, and I have now reached the point, where I just don't know what to do for the best, I cannot take the thought of the whole "passing" out thing happening again, and this has almost happend on a coupel of occasions - for some reason the POST is just spiralling out of control, I've been so lucky up until now as I have always had it fairly under control - I just don't know what to do - i wish there was some kind of magical solution that would just make you feel better even for a moment

I have been so greatful to live so close to my doctors, it is has been so valuable - I'm pleased that you will be able to benefit from what sounds like a fabulous doctor, who is near to your home. It is really great to hear some postive news, I'm really so pleased for you .

Dear Steph, I cannot begin to imagine what you are going through right now, but as tearose says try to be strong, and if you can do get a second opinon. I am too very happy to help you with research. I will be thinking of you, please take care LJ

Hello, I was finally "officially" diagnosed last February, but have been suffering with this for two years in April. Looking back now, prior to this I can remember incidents that I think must have been POTS related. From the age of about 14 I had crippling pains in my joints, was very tired all the time, suffered with illness for long periods of time, and was slow to recover from even the smallest cold. For a long time, I think the majority of doctors thought I was a bit of a hypochondriac as nothing could be ever proven to be wrong with me (my doctors notes are immense!) I did eventually see a GP who was convinced that I must have had glandular fever, although this was never proved! The problems I had, never really affected my life until I started suffering with Syncope and severe palpitations - you could actually see my chest moving violently and I would feel so sick. I seem to remember this happening all very quickly, however for a long while I had lost the appetite to go out, and was increasingly tried - I blamed this on my job, which had changed and was at a higher level ? however I never felt stressed. To try and cut quite a long story, into not such a long story after several cases of syncope, and two weeks of being unable to move I was finally sent to a neurologist. The neurologist I saw was convinced I had epilepsy. He sent me for loads of tests, including a tilt test. At the tilt test I met a cardiologist, who was fantastic and lucky for me was investigating POTS. He recognized my symptoms immediately, I passed out within about thirty seconds. I heard him mention to the nurse this thing called POTS. When I finally came round, I was so confused, I remember him telling me I would be just fine, to drink lots and eat loads of salt. He wouldn?t tell me any details, and I never mentioned hearing him saying POTS ? I couldn?t think how this could be right, seemed like a strange name for a medical condition. I returned to my neurologist, who told me my epilepsy tests were negative. He had not received back my results from the cardiologist, but told me most young women whom had stressful jobs suffered from syncope and that I was stressed. I went home, and cried my eyes out as I felt so unwell, by now I could hardly move, some days I couldn?t make it to the bathroom on my own. My boyfriend remembered the ?pots? comments and called the cardiologist. I was seen the next day and sent to see a professor of neurology. My professor is fantastic. I thank goodness I have private health care, and a wonderful boyfriend.

Hello, Omega-3 and Omega-6 oils do increase brain functions, I understand that it works by "oiling" up the receptors within the brain. there was a programme recently shown here in the UK by Dr Winston, who experimented with Salmon Oil and children, (who were not doing so well within schools) their interest in their studies was increased dramatically. I have tried to find a reference on the web, but have not succeed yet. Salmon oil is the best fish oil, as it is high in omega 3(, and I think 6 but I'm not 100% sure on Omega-6) fatty acids (it is also the more expensive) - but contains a higher concentration of DHA and EPA than say Cod Oil - which apparently is the most important aspect of the oil. So far I have not been as good as perhpas i should be with sticking to taking these tablets on a daily basis, I plan to start from tomorrow and would be interested to hear if anyone else does benefit from taking the oils. In addition, simple mental exercises, reading, and the such will help keep your brain active. Good luck!

I'm quite new to this site, and I am just amased at how many people are experencing the same things as myself. I always avoid lifts like the plague, what helps to lessen the feeling on leaving the lift is to pretend to tie up shoelaces, or keep your legs firmly crossed over and tighten your thighs. I have simiar experiences on escallators as well. I have had in the past, experienced syncope on leaving a lift - lucky for me I was actually going for some tests in hospital, so I was looked after very well Let me know if you come up with any other useful tips for dealing with lifts, i'd love to know as i still haven't quite mastered them.

Hello, I have also had trouble with deep breathing exercises, I was even diagnosed with Asthma in the beginning. Have any of you ever tried Yoga? It is apparently an excellent way to control breathing, once perfected. Be interesting to know if any of you have tried as i have just invested in a yoga video, to help strengthen my legs and try to learn how to breath better.

Hi Everyone, I'm hoping that in my hospital (london) they will be providing me with a swimsuit - we shall see, this is the first time I am going for a test where I am much more prepared, for what is in store, this makes it far less stressful. I don't know the exact food test I will be going through, I'm sure my Proffesor did explain however my mind has gone blank on this test, I shall have formal documenation sent to me in the post in the next week, so I shall let you all know then.

I shall give those a try, i have dabbled with flight socks so i shall take you up on your suggestion! I feel much more positive already - THANK YOU!!

Hello! I am lucky in that I was diagnosed so very quickly, and that I have a fabulous Doctor - Professor Mathias. I saw him just yesterday and now I have to go and see another professor, I have hypo-extensive joints and (I believe quite recently) he has proved there is a connection between this and POTS. I have a reasonable handle on my condition, but at the moment spend most of the day light headed and I am so tried. I am just unable to sleep at night, and in the mornings it is almost impossible to stand up. My weekends are spent sleeping on the sofa - I do have a job, as a Sales Manager in London - the job is reasonably stressful, but I don't let it get on top of me. I could not ever tell my bosses the full extent of my condition, this would be employment suicide - I can't afford not to work... At the moment when I have a bad day at work, I read - thus far I have been able to get around the bad days like this. Over the past couple of months, my symptoms have been getting worse - I guess I'm frightened as I used to have a good handle on this, and now I don't - like the way you describe this as potshole, and the way that you set yourself targets - I shall do this, and hopefully with little steps I will feel better. I wish you lots of luck on your steps today, and hope you soon start to feel better. I have already found some really interesting threads on the forum, and it' great to know that people like you are out there - thank you so much for the support.

In the next couple of weeks I have to go for a sweat test... I have just discovered what the test will involve. 1 x Disposable Swim suit, Orange Powder, turning purple after making me warm! Has anyone been through this test, is it really as bad as it sounds?? I've also been told I have to go for a food test, which is a new thing - anyone have any ideas??

Hello, I suffer with the cold all the time, at the moment I am suffering more than usual as we have snow! (this never happens in London) At the moment our office is around the 24 mark, and I am the only one with two jumpers and a scarf still firmly situated around my neck - I am currently winning the battle to keep the windows closed. I'm suffering with very bad night sweats at the moment, however most of the time my nose, feet and hands will be like ice blocks.

Hello Everyone, I'm sorry that my very first post is rather "down in the dumps"... it was not my intention, however at the moment I am going through a really bad patch - I think I found this site just in time! I was diagnosed with POTS about 18 months ago, things have changed with my condition over the last couple of months, I had not anticipated that I would end up with new symptoms, or that the condition would get worse, which it appears to have done. I have been trying to convince myself for ages that I am going to get better, or that I can cope - in the past I have had bad times, but have seemed to have coped, at the moment I am finding the situation I am in really difficult. I am so glad that I have found this web site, so that I can gain inspiration and advise from people in similar situations to myself - and go back to being in control of POTS and not POTS being in control of me. I am really looking forward to hearing how other people have managed to drag themselves back up, the worst thing is that I am constantly exhausted at the moment and just don't know how to go about making this better. Any advise greatly received!