Scooby2

Hi Becky, I just wanted to say that I hope things go as well as possible for you on Thursday. You know that you are doing the right thing, even though at the moment it seems hard to face. Often with big things like this the build-up and anticipation are worse than the event itself, lets hope so. All you can do is be brave and honest and ensure that others see the bad judgments your ex-employer made to you. Wishing you lots of luck (and don't forget to sit down as much as poss - not a great place for a passout!) Best wishes, Scooby

Hello Marian, Yes, we're lurking here! I'm in South Birmingham/Worcestershire and have POTS. Welcome, I hope you find the site helpful - there are some really clever folks helping out on here! Best wishes, Scooby

Hi Michelle, Thanks for letting us over here know this info - anyone with new ideas or who are willing to help will always be gratefully received! It's also good to hear that there are some more Drs out there who are interested enough to enlist. Thanks again! Best wishes and better health to all, Scooby

Hi Hayley, I hope your appointment tomorrow goes well for you and you get some help. I wonder who are you seeing and where? Fingers crossed for a successful and not too tiring visit! Best wishes Scooby

1. Name Sarah 2. Age 34 3. Dx POTS 4. Age at dx. 29 5. Where you live - Worcestershire, UK 6. Symptoms at worst - tachy, inability to stand, dizziness, extreme fatigue, greying out of vision 7. Symptoms at best - occasional tachy, still always tired, still problems standing for long but working part-time 8. Medications/treatments, etc. that didn't work for you - florinef (turned into a halucinating maniac!), atenolol (fatige), propranolol (inc asthma symptoms) 9. Medications/treatments, etc., that do work - Bisoprolol Furmarate (B-blocker, the only one which seems to suit me), midodrine, compression tights (class 2), salt & fluids, keeping cool in summer and getting lots of rest

Hello Persephone, I'm, also in the UK. I'm so sorry you're having so much trouble - everything here sems so slow and hard fought for doesn't it? The only thing I could think of which might help would be to ask your Cardiologist (or as a last resort for you) to contact Prof's secretary and ask her to fax a copy of your last correspondence or clinical notes from Prof to the Dr with an outline of a treatment plan for you. At least there's a chance that things may get moving. I have found that anything we need we have to action ourselves, this is wrong but soemtimes it's the only way. I always work on the assumption that people will NOT do what they say and so chase them up to get things done. Sad but true. I have only dealt with Prof at St Mary's but have found Rita his secretary to be quite helpful, but I can't remember where you have seen him? Was it at the London Neurological ? Do you have a contaact there via his secretary? I do hope you can get things sorted out, let us know how you get on. (By the way I also get chest pain, find laying down and getting as cool as possible help for me. As others have said, I know for me it isn't harmful but is just distressing when it happens). Take care and best wishes.

Hi Tracy, I've recently bought a necktie and a cool-vest. Unfortunately I work in a very hot hospital and being almost a 3rd world country (UK!!) we don't have airconditioning, fans or even window blinds in our hospitals! I was getting to the stage where I couldn't cope at work at all. The necktie is realy useful for just when it's warm, but not really enough in the heat (yes it does get hot over here sometimes), the vest is great from a cooling point of view, it lasts me about 3 hours before I've defrosted it. With the vest I find my brain fog is much less, my concentratioon better and the tachycardia is less of a problem. The only problems are that it is very bulky (I wear it under my uniform but look a strange shape!) and I've had to get it adjusted to make it smaller, even on the smallest adjustment it was too big to fasten the velcro. It took about 3 weeks to be delivered but I suppose that was due to UK customs more than the companies delivery times. For me it has been helpful, given the option, I'd move into the freezer or fridge for comfort! Before I had the vest I used to take freezer icepacks to work and stick them down the front of my top and trousers!!! (Not a very fetching sight I'm afraid!) I hope you find something which works for you, wishing you all the best. x

Hi Mary Jo, I have to supply and fit these as part of my job (bad enough trying to get them on myself, let alone other people!!). They are worth trying as many people, myself included, find them helpful. I personally find the 20-30 too low in compression, the 30-40 are better for me. In terms of contra-indications, the main ones are arterial disease (atherosclerosis etc) and diabetes (or other conditions which reduce sensation). (I usually add to the list severe osteo or rheumatoid arthritis, but only because these group of folk often have difficulty getting the hose on due to hand and grip problems). I really hope you find them helpful, good luck!

Hi folks, I'm another lurking Brit on this great site. I have a "POTS variant" , still don't know exactly what that means, but as far as I can see I'm treated as standard POTS. I had TT testing in Bristol 9 years ago by a Dr who was pulled out of retirement, and got a diagnosis of POTS but no-one had ideas of treatment, eventually got referred to Prof Mathias on NHS (after visiting NDRF conference in USA for info etc!! but also got to meet Prof there!) about 4 years ago. I was re-tested there this year and am due to go again next week. I have found it to be helpful to back up all the work that I do myself to try and sort out these complex problems, I use all the resources here on these sites to give me the edge when I see him (or usually a Dr they've pulled off the wards to cover the clinic!) in terms of suggestions for tretament. I am currently on B-blocker (bisoprolol furmarate, tried loads of others but turned into a slug on them) and Midodrine, both of which help to a certain extent. I cannot function without the B-blocker, get terribly breathless and tachy, Midodrine seems to help, especially in am when symptoms are worse. I don't know whether you've seen Prof on the NHS or privately, I had to wait for AGES but now feel it has been worth it. I can't understand why some people seem to be offered drugs and not others. I still follow the high fluid salt and exercise when possible etc. but since my last visit I have had to drop work to part-time due to fatigue. Lifestyle adjustment just reinforce the problems don't they? I had to battle for years to get to see someone, then had to battle to get treatment, and now have to battle to get drugs (have to travel from Midlands to London just to collect prescription!!!!!!!!!) - it is an uphill struggle, it does seem unfair, especially when we are never really feeling well enough to fight the system. All I can suggest is to use the info we gain to keep fighting, but it does get utterly depressing and wearying sometimes (I dread visits to Prof as I always come home unhappy.) Anyway, regards to all in the UK, we need to stick together buddies! Here's to better health and treatment. x

Hi Dizzygirl, I hope you got on OK with your ultrasound and some suggestions have been made to help you. Becky, I also have high bilirubin levels and was also told I have Gilberts Syndrome, but apparently it is very common and is only usually noticed during routine testing. I was told that it is nothing to worry about but that it's worth mentioning when going for any relevant tests so that people are aware to expect an odd result! I've never thought before that there may be some connections with this and our other problems. An interesting thought? Take care, Sarah