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Normal Ttt

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Hi all, I'm new here and still without diagnosis. In fact, it's taken almost 10 years in all for me to research and then finally to find a GP i could convince to send me to a specialist (in POTS/ Dys).

Now. Here's the trouble. Every doctor I've ever seen has written me off as 'anxiety disorder' - This has then led to any other specialist to dismiss anything I say. I'm sure a lot of you guys know the story and how hard it is to be taken seriously when you're suffering. Not to mention nobody in the UK seems to have even heard of the dysautonomias.

So, I finally got to see a great Professor who actually takes me seriously and on my first visit I was asked to take a few tests; blood pressure, blowing through the tube, hand in ice cold water and sitting to standing pulse. Great, they showed an imbalance but not a major one. I was borderline for a straight out POTS diagnosis so I was asked to come back for a tilt table test which she thought would give us the answer..

So a few days ago I took the tilt table test and that day, of all days, everything seemed to behave which kind of put me back at square one.

Now I have my Girlfriend telling me that she believes I just have anxiety because the test was negative - she actually suggested this to the specialist whilst we were in the review which really upset me - and I'm not convinced the specialist will take me seriously now the TTT showed up normal and my GF seemed to push anxiety disorder on her!!

I've researched papers for years trying to understand what I'm going through because it's ruined my life and I'm just wondering if the tilt test is definitive in all the dysautonomias and would it always show up in the test? I can pretty much get the 30 bpm rise on standing everytime at home but at the hospital my body behaves!! It's so frustrating..

Here's my daily life

· Ectopics & Arrhythmias

· Blood pressure irregularities on posture changes or lifting or stairs

· Short of breath & air hunger

· Dizziness & vertigo

· Hyperactive reaction to sudden sounds. (Huge amounts of adrenaline and I don’t ‘jump’)

· Visual disturbances – Spots and lines or can’t focus or extreme colour

· Can’t think or find words

· Poor memory, forgetful

· No thermostat. Always sweating - even in snow and when i feel cold

· Dull headaches – some tension but mostly dull intense aches stem from skull bass and into sinuses

· Tinnitus and bouts of temporary deafness.

· High pitched sound from bass of skull, as if I have an ear there.

· Nerve symptoms – Crawling skin, wet sensations, numbness

· Exercise intolerance – Although I’m trying every day.

So if anyone has any info or similar experience, I'd love to hear your thoughts.. I hate this stuff and really need the ears of someone who understands.

Thanks and thanks for this forum!

PS Chris, 33 UK :)

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I had two. The first was a definite fail. The second was a fail, but barely. We are different on different days.

The second test has hurt me because it makes my presentation appear mild, which is not the case. A heart monitor has helped with that perception. It was good for showing my day to day reality.

I hope that you find your answers as well.

And do not bring your girl friend next time.

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Hi Chris. I'm in the UK too. I've also found people suggesting I have anxiety. I've never thought of myself as an anxious person, I feel that I suddenly don't know, and am asking myself the question - am I anxious?

Like you I so wished to find a doctor who could help me to understand what is going on with me.

My tilt table did indicate POTS, however I still found the doctor to be not much help. I would like to write and tell him that research shows that if a doctor takes a compassionate and optimistic approach the patient is more likely to get better.

I really don't think the medical profession has all the answers for healing, I think the answers may be elsewhere.

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Hi Jennifer, I only did 10 minutes and they said if it didn't show in ten, it wasn't going to show :/ I'm sure I'll be due another test or two. next for me is another set of heart monitors for a month or so. That will show something, I'm sure of it.

Hi Alison, I know the feeling all too well. They make you second guess yourself. Thing is, I did accept an anxiety diagnosis and I did have panic attacks in response to getting bad symptoms (Palps, breathless etc) at first. I overcame all that and realised it was the symptoms causing the anxt and not the other way around. I think that's a big enough clue. Even my psychologist said I didn't seem remotely anxious.. I guess the bottom line is most Doctors just don't know.

Here's hoping my Dys. specialist can get some answers (touch wood).

Thanks everyone for the kind responses and info. Here's to good days.

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I'm the same always classed as being anxiety whatever my symptoms are especially since being diagnosed with ME years ago. I've read several items stating the anxiety comes after the autonomic dysfunction as the nervous system responds dramatically to internal and external events. This makes sense to me...as I didn't have real anxiety issues before the health issues.

I haven't been offered any real help or diagnoses of anything. I want to go to see a POTS/EDS specialist in London but will have to go privately as I know my doctor knows nothing about POTS etc. I have found one after scouring the internet and there seem to be several in London. I wish you well and it isn't anxiety causing it, but anxiety is a feature of it. Unfortunately your gf didn't help in this consultation.

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Welcome to the forum. Sorry you're having to experience all this mess.

As others have said, we're different on different days so a "normal" TTT doesn't rule out dysautonomia. Especially if you had a 10 minute variety of TTT. Cardiac TTTs usually run around 45 minutes and those can show all kinds of abnormalities beyond just the 30 BPM rise in the first 10 minutes, including delayed accentuated tachycardia, vaso-depressor reactions and vaso-vagal syncope.

One thought might be to do some poorman's TTT at home and take those results to your doc. If you're not familiar with how to do this, basically it's:

Lie down quietly for at least 30 minutes (or do it first thing in the morning). Record your BP/HR. Then stand at the edge of your bed as still as possible and record your HR/BP at 1 min, 3 mins, 5 mins, 8mins and 10 mins.

If you do this on several different days and take the findings in to your doc it might help to substantiate your claims that what happened on the day of the TTT wasn't reflective of your normal situation.

Hope you get some answers soon!

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TCP, I've seen Professor Mathias privately. Good for suspected diagnosis, and then for confirmation there is a long wait for tests on the NHS, they are really costly privately, and then ongoing treatment is another thing, very costly. Personally I'm not able to keep it up as don't have private medical insurance.

Happy to let you know more about my experiences if you want to know.


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Hi Chris - welcome to the forum!

The first test I had done that indicated something was wrong was a 24 hour holter monitor to track my HR. At the doctor visit before the test, she came straight out and told me she thought it was anxiety. After the test, before my follow up, I got a call from the doctor asking if I had forgotten to mark down that I had exercised while wearing the monitor. Nope.

When I went back in, anxiety was never even brought up. I was given a diagnosis of IST (incorrect - I have POTS, but it was a step in the right direction) and put on a beta blocker, which did help. A lot.

That holter was before I started requesting copies of my results, so I'm not sure what my HR did to convince them other than stay high. But maybe that'd be something to look into. Apparently it is possible to distinguish dysautonaumia from anxiety using it.

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