Autonomic Dysfunction/NNH/Prof Matthias/POTS

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Autonomic Dysfunction/NNH/Prof Matthias/POTS

Postby HMSA Admin Team » Sat Oct 29, 2005 10:28 pm

Please post here for Autonomic Dysfunction/NNH/Prof Matthias or POTS.
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Postby Sue New » Sat Nov 26, 2005 12:35 pm

Hello Everyone,

Well, I had my Autonomic Function Tests at the National Neurological Hospital yesterday, so before I forget what happened I thought I would let you all know what to expect if you are waiting to have the tests.

First of all, I only got to see a technician rather than Prof Mathias himself, I think you only get to see him if your test results merit it.

I was asked to lie on a table straight away and hooked up to the equipment. They put a small BP monitor on your finger that takes continuous readings and you have a blood pressure cuff that takes readings every 3 minutes and are hooked up to an ECG monitor. They also put a cannula in so they can take blood at various stages throughout the procedure and I think at one stage they adminstered some kind of drug through it too :? , but my technician did not really explain what she was doing very much (she kept saying "I am just going to ....." and then start doing it without saying what she was going to do :? . She told me she was still training and seemed quite nervous herself, but she did manage to get the cannula in without any problems and always asked for help from a colleague if she was unsure of anything.

The technician briefly asked me what kind of problems I experienced and if I ever fainted. Luckily I had taken a list of my symptoms that I had given to my local Neurolgist back in May as well as a copy of my Health History, so at the end of the tests she took the copies to put in my file and (hopefully) read.

Various readings and blood tests were taken throughout the tests (which lasted about one and a half hours). At one stage the bed was raised to a vertical position (you are fully strapped in so it is quite safe) so that you are in a sort of standing position for 10 minutes. I have to say that this was really uncomfortable for me as it put a lot of pressure on my back, knees, hips and ankles and I struggled to get through that part of the test. I did manage though and the tech kept asking me if I was ok and to explain how I felt. I am a bit of a stoic and managed to get though the pain, but any longer than 10 minutes and I think I would have had to ask her to lower the bed.

The other tests involved the following:

Mental Arithmatic - I had to count backwards for 400 deducting 7 each time.

Deep breathing - I had to take a deep breath in for 5 seconds and then blow into a tube for 15 seconds. The tech had to do this test 3 times as my result came out "rare abnormal" with "square waves" whatever that means :? She had to go and get another tech in to look at the results as she had never seen the response I had before.

Panting - I had to hyperventilate for as long as possible. This I found hard and it brought on my symptoms of dizziness and pressure feelings in my head quite quickly.

Reaction to cold - this I think was the worst test for me as my right wrist was wrapped in a cold "thing" (as I was lying down flat I couldn't really see what it was) that had been kept in the freezer. I had to take off my wrist support for the test and the icy coldness soon brought out the arthritic pain in my wrist. I found this excrutiating and the tech had to stop the test sooner than normal as she could see from the ECG that I was in cardiovascular distress. Normally they keep this on you for 3 minutes (I think that is what she said).

There is also normally an Isometric Test where you have to squeeze something in your hand repeatedly, but they did not do that test on me because of my wrist problems, but said they could get a good idea of my autonomic function without needing to do that test.

The last part of the test involved taking readings after you have got up from the bed and stood up for 5 minutes.

The tech said she will report on the results and send a copy to Prof Grahame/Dr Hakim. She warned me that it will take a while as they are short of admin staff at the moment but that it should be ready in time for my follow up appointment at UCH at the end of March :shock:

I mentioned that my local Neurologist is keen to see the results before deciding on a course of treatment and she said I will need to get him to request a copy of the results.

I did not need to take away the 24hr holter monitor as she said she had got enough info from the tests on the day.

Oh yeah, one last thing, the tech asked me what meds I was on and when I mentioned Venlafaxine, she siad that could explain some of the results she was getting :think: . I wasn't asked to stop taking any meds prior to the tests, but then as I had a short notice cancellation perhaps they forget to advise me. I hope this will not have interfered with the results :roll: .

Anyway guys, I hope that this information will be of use to all of you waiting to have these tests. On the whole the tests were all quite straight forward and I think I only had problems with the "cold" test because of the problems with my wrist.

Take care all :wink:

Sue.
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Postby Sue New » Sat Nov 26, 2005 3:40 pm

Hi Guys,

It's me again :D . here is another article about Autonomic Disturbance (actually written by Prof Mathias!!):

autonomic disturbance

Happy reading :wink:

Sue.
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Re: Autonomic Dysfunction/NNH/Prof Matthias/POTS

Postby sheppeyescapee » Wed Apr 25, 2012 9:41 pm

That sounds very similar to my appointment with Dr talks very fast :lol: It may not be for a while anyway, the waiting list for the testing is very long 12-14months. I had my first appointment back in August and had a follow up appointment in June but had to have it moved because they knew I wouldn't be in for testing before the follow up appointment :roll: There were a few things that I wanted to discuss but completely blanked on! Hoping to bring them up at the follow up in October.
J - 28,student,married to the lovely Em and live with 2 cats Bilbo and Pippin. Diagnosed with Aspergers, Dyspraxia, Dyslexia, EDS-HM, Mild Asthma, Chronic Pain, Chronic Fatigue, POTS, Syncope
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Re: Autonomic Dysfunction/NNH/Prof Matthias/POTS

Postby trekster » Thu Apr 26, 2012 3:00 am

Sounds like a written list could be handy to take into your appointment?
Al

EDS-H (27/9/11) ASD, Fibro, OCD, C-PTSD, insomnia, dyslexia, raynauds, mild carpel tunnel, gf, df
suspected CCI, dyspraxia, SID, POTS
part time wheelchair user.

Feel free to PM me about adult autism social groups in the Bristol and Bath area.
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Re: Autonomic Dysfunction/NNH/Prof Matthias/POTS

Postby louloutinks » Thu Apr 26, 2012 9:08 am

Hi Sheppey

was it you that named him DR TVF? He walks, talks and moves fast - everything he does is fast!! Really lovely doctor too though - just wish I had a bit more time with him.

So you wasnt in there long either - seems to be the case across the board by the sounds of it!
Me, 41...EDSIII, Chiari, POTS, VS, fibromyalgia

Son,8..autism, BJHMS, hypotonia, persistent anaemia

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Re: Autonomic Dysfunction/NNH/Prof Matthias/POTS

Postby sheppeyescapee » Thu Apr 26, 2012 9:50 am

Yeah that was me :lol: Mum and I found it very hard not to giggle in the appointment. He talked very fast and kept randomly shutting his eyes then opening them really wide as well as talking really fast. I was rather amused, yes he was very nice :)
J - 28,student,married to the lovely Em and live with 2 cats Bilbo and Pippin. Diagnosed with Aspergers, Dyspraxia, Dyslexia, EDS-HM, Mild Asthma, Chronic Pain, Chronic Fatigue, POTS, Syncope
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Re: Autonomic Dysfunction/NNH/Prof Matthias/POTS

Postby sheppeyescapee » Fri Apr 27, 2012 6:30 pm

I got my BP monitor this morning and I took a few readings lying and standing, and when I felt symptomatic and the heart rate never went below 95. Mostly it was between 100-140bpm. Also the monitor kept showing an irregular heartbeat symbol, this isn't the first time this has come up. A few times that I've been in hospital they've brought this up, and they checked it a few times as they didn't believe their eyes at the 165bpm heart rate. I heard the monitor at the hospital go quiet for a few beats and then lots of beeps after that. Is this common to have an irregular heart beat in pots patients?
J - 28,student,married to the lovely Em and live with 2 cats Bilbo and Pippin. Diagnosed with Aspergers, Dyspraxia, Dyslexia, EDS-HM, Mild Asthma, Chronic Pain, Chronic Fatigue, POTS, Syncope
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Re: Autonomic Dysfunction/NNH/Prof Matthias/POTS

Postby star gazer » Fri Apr 27, 2012 9:02 pm

Hi sheppey, just wrote a really long post and lost it so will be shorter with this one. I think if you can you should ask your g.p if he can arrange for you to have a 24 hour tape done, this is an ecg that lasts 24 hours whilst you carry on with your normal everyday activities. With pots the yachy rhythm is supposed to be sinus, ie: normal rhythm but way too fast. unusual beats or missed beats are not the standard pots beat althou extra beats can occur as the heart tries to "jump" back into a normall rhythm i think it is the sinus node that controls this. sometime illness meds and other factors can affect your heart rhythm but you should go and get this checked out. If you dont you will worry which will make it feel worse and at least by having the tape done it will show if there are any unusual rhythms there apart from the sinus tachy from the pots. I have had this once and went to the hospital, it settled down over night and i was released in the morning whilst still tachy but no more irregular heart beats so for me it was just a blip at that point probably due to a change in meds.
most g.ps can arrange a 24 hour tape referral from their surgery and some even have ecg machines to run a quick test. so maybe arrange an appointment to talk to the doc about this, pots is sinus tachy not irregular heart rhythms.
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Re: Autonomic Dysfunction/NNH/Prof Matthias/POTS

Postby sheppeyescapee » Fri Apr 27, 2012 9:09 pm

Thanks SG, I'll bring it up with the GP when I see her for my followup after the xray results get in. So many things to deal with! :roll:
J - 28,student,married to the lovely Em and live with 2 cats Bilbo and Pippin. Diagnosed with Aspergers, Dyspraxia, Dyslexia, EDS-HM, Mild Asthma, Chronic Pain, Chronic Fatigue, POTS, Syncope
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Re: Autonomic Dysfunction/NNH/Prof Matthias/POTS

Postby star gazer » Fri Apr 27, 2012 9:36 pm

There is always loads to deal with sheppey, I know the feeling, hope your follow up is not too far away. if you notice any problems increasing then please see someone sooner.
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Re: Autonomic Dysfunction/NNH/Prof Matthias/POTS

Postby sheppeyescapee » Fri Apr 27, 2012 10:07 pm

Shouldn't be too long. Probably either Monday or Friday :shifty: Feeling decidedly rough this evening, been getting the irregular heartbeat at the same time as I've been getting the pre-syncope :eh: Maybe it is because of the increase in my amitriptyline dose? It started getting worse about 1hr after taking it.
J - 28,student,married to the lovely Em and live with 2 cats Bilbo and Pippin. Diagnosed with Aspergers, Dyspraxia, Dyslexia, EDS-HM, Mild Asthma, Chronic Pain, Chronic Fatigue, POTS, Syncope
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Re: Autonomic Dysfunction/NNH/Prof Matthias/POTS

Postby louloutinks » Sat Apr 28, 2012 10:25 am

Hi Sheppey

I had a 24 hr tape done and there were some missed beats noted. Max heart rate was 155 lowest was 54 (so a good day for me!) but they said all was ok - no tachy or brady. The thing is is that they did not ask me to write down what I had been doing - just had to wear the tape and take it back in. The day I wore it was a very lazy day - just getting up to make lunch, dinner etc and bathe my child - nothing energetic. When I went to see the cardiologist and the registrar took my bp sitting and standing my hr jumped from 77 to 118, he looked really concerned (which then worried my mother!) and asked if this was usual for me. This rise was not even noted in the report either.

I seem to be getting intermittent high bp readings like 158/151, 131/124, this can go on for a week or so and then it goes back to lowish readings - I get very narrow pulse pressures too. My heart rate used to rise immediately by over 40 bpm on standing - at the moment it takes a slow rise, drops and then keeps increasing the longer I am standing.

I mentioned the high bp's when I went to NNH the other day and he said that BP cuffs can give wrong readings - but I made sure I go tone recommended by British Heart Foundation.

Hope you can get a tape fitted - and that they ask you what activities you was doing too! :bye:
Me, 41...EDSIII, Chiari, POTS, VS, fibromyalgia

Son,8..autism, BJHMS, hypotonia, persistent anaemia

Mum...EDSIII
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Re: Autonomic Dysfunction/NNH/Prof Matthias/POTS

Postby nemonie » Sat Apr 28, 2012 1:00 pm

Hi loulou,

You will do a 24 monitor test when you (eventually) go to NNH for your tests. It is one that measures you BP and pulse every 20 minutes during 'daytime' hours and every hour during 'bedtime'. You have to write down what you are doing every time it goes off when you are awake, and also do certain activities and record the results too.
Finally diagnosed with EDS-H and POTS after 20 years by the lovely Prof G \o/
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Re: Autonomic Dysfunction/NNH/Prof Matthias/POTS

Postby star gazer » Mon Apr 30, 2012 1:15 pm

my sons tt test was done at St Marys, Paddington and they nored that with his pots he has occilating blood pressure. (it swings between various readings not really settling at any level.)

Sheppey could be the amitriptyline, I had to reduce my dose as the side effects it can cause is tachy and they wanted to rule that out as the cause of my probs when I first went to nhnn. the lowest dose and then coming off didnt change the tachy but as they wanted to use Midodrine they didnt want me taking both as they work against each other in their affect. concequence of no Ami was huge increas in neuropathic pain and migraine but now ith the other pain meds they are a bit more controlled.

Have noted that my systolic readings are getting higher which is what the midodrine is supposed to do but they are now getting too high so will probably have to reduce midodrine, devil and deep blue sea, at the moment no syncope or much pre syncope but still tachy, but if the dose is reduced the syncope will kick back in. they were talking about injections so must look into that some more before I go for my appt.
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