UK Members - who diagnosed your autonomic dysfunction? (Very long)

[CantThink]

@Hell...Hath...No...Fury..

Oh that is so ridiculous that they recommended all that after telling you no POTS diagnosis!

I could no way drink 4 litres of water. I'm glad she said you don't need to, and that you got diagnosed by her (more weight to it).

I think I'd make a pretty rubbish house guest lol! Thank you for the thought.

I also had thought it was probable that medication would be the way forward as it's something that so far seems to help a lot. I know exactly what you mean about the compression stockings - they are easier to put on someone else! I had to put them on my mum. Are you turning them inside out and then rolling them up the foot/leg?

 

[CantThink]

I was diagnosed with autonomic dysfunction at the Breakspear. The testing was very expensive and I was told to play tennis and take 25 different supplements! I took the supplements for 9 months, again at great expense, and got no improvement at all.

Oh gosh - 25 supplements!!!! That's crazy. I bet that was also expensive.

Tennis - errrr how helpful of them!

 

[CantThink]

@Matthew Jones

That sounds awful. All the lengthy gaps between appointments is so useless too... In the meantime one suffers.

Their advice would be useless to me except maybe the positions thing. I

I am someone who over the years have tried to exercise in many different ways (including exercise bike) and doing GET (as advised by GP) and all it has done is make me crash. Over the years I have actually gotten progressively worse after all these attempts. So I agree that all this exercise advise to M.E. POTS sufferers seems to be like taking two extremes - 1 where doing increased aerobic exercise is beneficial and the other 1 where it is not and is damaging - and trying to merge them when they completely conflict.

The compression stockings are not easy to wear and they are expensive if you have to buy them. I have heard that some people find a binder that stops blood pooling in the abdomen can help or something like that. I think I'd prefer that.

 

[Hell...Hath...No...Fury..]

Luckily in the UK the stockings are on the nhs and they measure you up so they're a perfect fit (or tight enough to give you a heart attack at least)

 

[Apple]

I was diagnosed by a cardiologist at a local private hospital (i paid for the consultation as I didn't think i would be taken seriously on the NHS). He diagnosed me based on listening to my heart when lying and standing. I was not offered a tilt table test. He told me that the only treatment available to me was beta blockers which would probably make me more fatigued. I was told to drink more water and eat more salt and in the correspondence letter to my GP, he basically said that I needed to learn to accept my illness and learn to live with it.

The diagnosis has pretty much been ignored ever since. Everytime my tachycardia is noticed - it is blamed on anxiety. Don't you just love the UK? <3

 

[Hell...Hath...No...Fury..]

Don't you just love the UK? <3

Like a hole in the head lol.

I can't imagine how many people are now walking around with private diagnosis' for this that and the other that officially count for nothing and can't be used for anything useful just because the almighty nhs don't acknowledge anything not done by them.

 

[ukxmrv]

I was diagnosed with mild POTS by the Royal london hospital for integrated medicine which I think is the 'queens square' place people are talking about. Useless.

I've been seen at both hospitals I think.

The one that refused to do any investigations for my head injuries etc was

National Hospital For Neurology and Neurosurgery, Queen Square

The other one I was seen at was the old "Royal London Homepathic Hospital" now called

Royal London Hospital for Integrated Medicine
60 Great Ormond Street
London
WC1N 3HR

 

[CantThink]

... He told me that the only treatment available to me was beta blockers which would probably make me more fatigued. I was told to drink more water and eat more salt and in the correspondence letter to my GP, he basically said that I needed to learn to accept my illness and learn to live with it.

The diagnosis has pretty much been ignored ever since. Everytime my tachycardia is noticed - it is blamed on anxiety. Don't you just love the UK? <3

That's very frustrating. If you tell the medical person who notices your tachy that you have POTS/OI, what do they say then? They cannot (well they can as they do what they want with us, but shouldn't logically) blame it on anxiety as anxiety doesn't cause POTS.

Have you ever tried beta blockers? I actually find suffering with the tachycardia makes me feel awful/tired/SOB/dizzy and weak etc. I find the right dose of beta blocker helpful - doesn't make me tired any more than I already am. Maybe it does for others though and the idea of being on them long term does not please me.

Conversely when my HR goes into brachycardia I feel weak and tired and dizzy (anaemic feeling without being anaemic) too, so trying to manage both elements is a bit challenging and I'm not sure how to go about that/achieve it. Thinking I might ask GP for a 24 hour holter monitor after I've recovered from my surgery to see if they can pick up the episodes of brachycardia.

I think it's a bit rich when doctors tell us to just accept it and learn to live with it. My GP (I don't see her anymore) said the same thing to me some years ago about the M.E. and its impact on my life/ability to work - that I just needed to accept it and live with it. Thing is, there she was telling me that while she was sat there earning something like £100k a year and I was stuck depending on my parents!

 

[CantThink]

Like a hole in the head lol.

I can't imagine how many people are now walking around with private diagnosis' for this that and the other that officially count for nothing and can't be used for anything useful just because the almighty nhs don't acknowledge anything not done by them.

I agree.

I know there's a lot of people who have sought private hormone help for thyroid and/or adrenals after the NHS tests have showed them as fine or borderline despite severe symptoms. They get the help privately but then the NHS won't acknowledge any of it - even blood tests (from a lab they themselves are known to use sometimes). So then the patient is in limbo; do they declare their non-accepted diagnosis or not?

Given the choice I'd see a private GP and just do everything that way. Unfortunately I can't afford it.

 

[CantThink]

The one that refused to do any investigations for my head injuries etc was

National Hospital For Neurology and Neurosurgery, Queen Square

I knew someone who was active in the MS world, as she had MS and ran a day centre for MS sufferers that I attended (with ME) at one point. She told me that people whose MS diagnosis was being questioned (as in medics believed they were misdiagnosed) were sent there and that the approach was very much psychosomatic school of thought. Obviously this is just hearsay, but I remember thinking to stay away from there. This was around 1999.

 

[Sidereal]

Conversely when my HR goes into brachycardia I feel weak and tired and dizzy (anaemic feeling without being anaemic) too, so trying to manage both elements is a bit challenging and I'm not sure how to go about that/achieve it. Thinking I might ask GP for a 24 hour holter monitor after I've recovered from my surgery to see if they can pick up the episodes of brachycardia.

For what it's worth, I've had two 24-hour holters. They showed alternating periods of bradycardia and tachycardia (obviously corresponding to when I'm lying down versus upright) and I was told my results are normal and not to worry about it.

 

[CantThink]

For what it's worth, I've had two 24-hour holters. They showed alternating periods of bradycardia and tachycardia (obviously corresponding to when I'm lying down versus upright) and I was told my results are normal and not to worry about it.

Typical! Does it make you feel a specific way? I dunno why they do tests like blood, holter, etc if they are never going to act on them.

I can tell when I'm one way versus the other by the way I feel. The brachycardia occurs when I'm standing sometimes (so if I bend over I can feel as if I'm going to pass out) as well as sitting or lying down. It's really odd that I never had this problem until about 4/5 years ago (which coincides with endocrine problems and autoimmune issues developing), as I will have had M.E. 25 years in January. The way the disease changes is a mystery to me.

I had a holter in maybe 2000 that only showed sinus arrhythmia.

 

[Sidereal]

Typical! Does it make you feel a specific way? I dunno why they do tests like blood, holter, etc if they are never going to act on them.

I can tell when I'm one way versus the other by the way I feel. The brachycardia occurs when I'm standing sometimes (so if I bend over I can feel as if I'm going to pass out) as well as sitting or lying down. It's really odd that I never had this problem until about 4/5 years ago (which coincides with endocrine problems and autoimmune issues developing), as I will have had M.E. 25 years in January. The way the disease changes is a mystery to me.

I had a holter in maybe 2000 that only showed sinus arrhythmia.

When you're standing and you develop bradycardia, what's your blood pressure like at the time?

 

[Sidereal]

A holter is of no use in diagnosing dysautonomia really. All it's going to lead to is a diagnosis of anxiety because it will just pick up sinus tachy. A holter is useful if you have actual heart rhythm abnormalities like atrial fibrillation. These problems are usually paroxysmal (i.e. come in episodes/attacks) so chances are they won't show up on an ECG in a doctor's office. This is where 24-hour monitoring comes in handy while the patient goes about his or her daily business.

 

[CantThink]

When you're standing and you develop bradycardia, what's your blood pressure like at the time?

I haven't tested (caught it) it yet. I need to put the BP monitor in the kitchen as I tend to end up standing in there (or am more likely to stand there than anywhere).

 

[CantThink]

A holter is of no use in diagnosing dysautonomia really. All it's going to lead to is a diagnosis of anxiety because it will just pick up sinus tachy. A holter is useful if you have actual heart rhythm abnormalities like atrial fibrillation. These problems are usually paroxysmal (i.e. come in episodes/attacks) so chances are they won't show up on an ECG in a doctor's office. This is where 24-hour monitoring comes in handy while the patient goes about his or her daily business.

Yeah this is what I thought - in terms of a. Have to catch it (think the brachy got caught back in March at hospital but no action - as per everyone else's experiences), and b. The sinus tachycardia/anxiety link that they'll want to make but which makes no sense as I am not anxious all the time and meditating or whatever doesn't alter it.

I'm still debating what to do. I think perhaps pursuing whether Julia Newton in Newcastle would see me if I can get my GP to refer me is a good idea, but will probably have to wait until next year to do it as got my operation next week.

 

[Hell...Hath...No...Fury..]

If you do decide to try for Julia Newton when you're up to it, it'll take a while to see her. She only works on Mondays at the falls and syncope unit and she's popular so she has a long wait of 6-9 months. I hope the op goes smoothly and as stress free as possible next week

 

[CantThink]

If you do decide to try for Julia Newton when you're up to it, it'll take a while to see her. She only works on Mondays at the falls and syncope unit and she's popular so she has a long wait of 6-9 months. I hope the op goes smoothly and as stress free as possible next week

Awww thank you!

That is a long wait. Feel like an expert patient (haha) at waiting! I might try joining DINET in the meantime and see what other UK people who don't necessarily have M.E. do to get referred and/or diagnosed with autonomic issues.