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MaryJo
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Hi to you all, especially those of you who have been tested in London!

I was just wondering what treatment was recommended for all of us who who had been tested in London.

As well as EDS, on the autonomic front I was found following testing to have POTS, NCS, a low general bp, and a high basal heartbeat. The advice I was given by the specialist was to increase salt intake, increase hydration, and to try counter-maneouvres. I was then discharged, although I can make an appointment to go back should I need to.

There was a general reluctance to prescibe meds due to the lack of success, and side effects.

I just wondered if this was generally what others had experienced.

Thanks for your replies.

Love,

MJ

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Hi Hayley,

Thanx for your prompt response. I had an appointment with Prof Matthias for my results, but after that he basically wanted me to try the simple things (salt, fluids, counter-maneouvres), and see how i got on. I could get another appointment if I wanted one, but I just wondered if any London patients were being seen at a regular interval basis or were given other treatment, esp. meds.

I think that our experience is the standard response here. I do worry though because considering it has such an affect on our lives we are just signed off.

Thanks again.

Love,

MJ

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i agree with you that there is no support.Who do we turn to if we are ill and we dont get on with our GP.I saw him for the test results and i have to go again in six months time.I wasn't given any medications.But i dont really want them anyway because of the side effects. Ive got to carry on as i am. Exercise and drink lots.

Are you on any medications?

take care

hx

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Hi Hayley,

Thanx for your reply. I am not on any meds any moment. Prof M did not want to put me on any meds and hoped that the extra salt alone would be enough. I am pleased in one way, because I understand there are a lot of problems with the meds, but at the same time, I have overwhelming fatigue, weakness, dizziness, and problems maintaining bp and pulse; since all this stops me from working, I am concerned in case there is more that can be done.

However, I had a feeling that no meds and no continuing appointment system was the standard treatment that was offered in London. When I read the US posts on this site and read about IV drips and all the treatments and stuff, I am not sure what to think in terms of what is available here.

If you read my other post, you will see that recently I nearly ended up in hospital following a recent severe attack. I am the sort of person who would avoid hospital at all costs, so for me to feel this way I must have been very scared. However, I know that they would not have known what to have done, and in addition, who would I contact to give them the expert medical advice in this situation? I guess I had better just try and keep well!!! At least we are reviewed for the EDS.

Love,

MJ :angry:

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Hi

Having read your experience I feel even more resigned to the fact that after my test with Prof Mathias in Sept I might be no better off in terms of treatment and therefore feel just as ill. Are you a private patient or NHS? I am lucky enough to have private cover so I wonder whether this will make a difference in terms of appointments...it wouldn't surprise me. Maybe another factor is the amount of patients Prof Mathias can physically see as he is referred to from all over the country, although he should have a team to help with follow up appointments.

I also have EDS 3 and saw Prof Grahame, he said he would see me again if I wanted but no regular reviews, who do you see and is this something I should be having as I have chronic pain.

Catherine

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Just to throw another thought in...my psychiatrist was quite concerned about all these tests and the fact that it appears that there is little help that can then be given. He was concerned that it was generating too much false hope from me and that in reality the tests are being used in building up research into the condition for the future. Of course this is great if it means they may eventually find a treatment plan but my psychiatrist felt that perhaps if something can't be treated, is it better that the patient doesn't know everything that is wrong with them?....interesting...

Sorry to hear how ill you have become recently persephone, thinking of you.

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If someone with epilepsy was told to just get on with things and try not to fall down and hurt themselves, there would be uproar. Yet this is exactly what most of us appear to be told by London. It isn't good enough. If we are diagnosed with a condition, we deserve TREATMENT for that condition.

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Hi,

I don't come to this site very often - I have Vasovagal Syncope, not POTS, but wanted to throw my tuppence (2 cents!! <bg>) in.

I have a friend who has POTS and sees Prof Mathias (privately) she was on lots of meds (she's coming off them all now for other reasons).

I see another consultant at a different hospital. After years of passing out, on and off, and treking up and down to my local hospital I guess I got lucky at one appointment and saw a registrar (doc under consultant?) who had worked with an autonomic specialist and sent me for a TTT (this was 5 years ago). A month later I had a pacemaker. 6 weeks down the line the consultant (first time I'd actually seen him) basically told me I was better and blew me off. 3 months later I started passing out again, my subsequent conversations with the hospital, trying to get an appointment (gp told me to go see the consultant again), was like something out of a Monty Python film.

I've been on florinef, no longer; currently on a beta blocker and midrodine. I changed gp a while ago and recently had to renew my bb prescription. 20 million questions about why I was on it, when I tried to explain about autonomic dysfunction I got a raised eyebrow and a muttered "that's unusual" like he didnt believe me.

Anyway, eventually (sorry this is turning out very long - I'm having a hard time thinking straight tonite and let alone typing) the consultant said "I dont know what to do with you - I'm going to refer you to some-one else). The new guy is very good and put me on midrodene. Unfortunately my gp wont prescribe it so I have to trek up to this other hospital to get prescriptions so I only take it when needed BUT if I run out and need more (only get about a month's worth at a time) I can make an appoint at the pacing clinic, go see them and they will find a doc to prescribe it (I wont' necessarily see the doc). The pacing clinic is also excellent - I can call them at any time and get an almost immediate appointment to come in if I need to.

One other point, that quite depressed me, at my last appoint (different doc, needs to work on his beside manners) I got told quite bluntly that there's nothing else they can do for me - I need to just get on with my life.

I hope this makes sense and helped some.

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What I also meant to say when I started, but lost the thought somewhere!!! : I believe Prof Matthias does not believe in using any drugs on the TTT (spray under the tongue or drip in IV) as he thinks it gives a false result. 5 years ago if I had not had the spray under my tongue I would not have passed out and ended up with a pacemaker - which has stopped 90% of my fainting (first TTT showed showed hr dropped/stopped).

veg

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i don't want to step on the toes of the UK folk seeing that i'm way across the pond, but i just had to mention the fact that good follow-up is an issue for many of us here too. there are exceptions of course, but as often as not the creative meds, IVs, etc are a result of working with a primary care doc who is willing to be openminded & learn & listen. that's easier said than done. i'm not disagreeing with any of what you all have been saying & obviously don't have first-hand experience with the London testing & treatment, but just wanted to let you know that many others could easily chime in with a "me too" even though we've had testing, etc. elsewhere. sad but true.

:-)melissa

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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

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B) Hi everyone!

I spent two weeks as an in-patient back in 2001 when I recieved my initial diagnosis of POTS / VVS / CFS / Seizures. I know this is a dreadful thing to say but I am so glad that everyone else diagnosed & treated here has experienced the same. I truly thought that I was the only one when I was discharged from London without any medication apart from Exeffor (Venlafaxine), told all the advice that you also all seemed to have been given and told I would recieve a six month follow up appointment...surprise surprise I never recieved one and have not been back to London since.

Why does it seem that we always have to fight for such basic rights?

Arrgh!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! :)

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