Autonomic Dysfunction/NNH/Prof Matthias/POTS

[mikev]

Hi there,

We worked out that my daughter - then 17 and known EDS probably had PoTS. There is an organisation like HMSA for people with syncope and PoTS. We got some names of doctors from them. I'm not sure I can name the group on the forum but you will probably find them if you Google PoTS. My daughter was referred to the local cardiology dept and from them to a consultant for elderly medicine. Apparently because they specialize in falls with unknown causes quite a few PoTS doctors are care for the elderly consultants.

It was a bit strange sitting in his out patients waiting area but he was super. He explained that PoTS has to be managed not cured and so every decision would be jointly made between my daughter and him (not me, quite right!). He asked her to bring another adult with her who observes her when she has symptoms - could be me but not necessarily. That went down very well as she felt she was being treated as an adult not a child. Needless to say, I've been invited to each appt. When she was reviewed, he gave her 3 options - carry on with conservative management, take medication to raise blood pressure, take medication to dampen pulse rate. He discussed the pros and cons of each and asked for her opinion. When she asked for medication to dampen the pulse rate he said, ' I suggest we try Ivabradine. Go home and look it up on one of these sites checking the side effects etc and ring my secretary to let me know what you think'. I wonder if he does that for all his patients.

Her PoTS is now much better controlled, though it was worse last year in hot weather so we will see what the summer brings. I think this doctor's approach really helped, especially as my daughter is off to uni in September and wants to feel she is more independent.

We are near Birmingham if that helps we can ask the moderator how to share the doctor's details off the forum

hope that helps,

Judi

This is what puts me off spending money to see any one, I dont need to be told I have something else incurable Id rather try to cure it myself- it makes me sick to gut TBH that medicine is so little integrity left their happy to just cash in on big pharma while the rest of us are left to suffer or get lectured about how bad it is for us to seek " alternatives " they fail to provide.

[gila]

????? sorry mikev, I dont understand your reaction to that post at all... although I also dont agree with many things re pharma companies, their interactions with med bod world etc ...

for me this post shows there are enlightened consultants out there who know little known/little understood conditions, explain things as they stand to the patient, explain the possible current treatment options, advise patient to further research the meds options, give patient the choice which route to go down=actively involve the patient in their treat/management, are aware that chronic conditions healthcare at its best is teamwork. for me...it couldnt be better.
and as far as I know this was a "free" nhs doc...
and as far as I know there are quite a few med bods out there trying to figure things out, trying to find causes and cures.
and there s at least one who has it herself, who is trying to think outside the box and involves other patients in her "musings" and research. ( check her on prettyill.com )
xxg
ps and please keep in mind the try "staying on topic" rule when answering, so please no "general pharma industry discussion" etc( you could pm me if you fancy that) but if you found any alternative things that do help your pots, autonomic dysfunction issues do let us know.

[Jaydee]

Dear Potsy ladies and gents,

I am just wondering time scales for appointments for Prof M and follow up visits. My first appointment is towards the end of May (which I have waited for almost a year).

What can I expect at this 1st appointment and will it take forever to be seen again, hear from them etc.

Thanks for responses.

JD

[Gaia]

I can tell you what my timescale was:

referred April 2010
first appointment end of August 2010
admission for 4 days of tests June 2011
follow up appointment Feb 2012
follow up appointment Oct 2012
admission for octreotide testing Jan 2013
follow up appointment Nov 2013...


In other news, got my GP to start me on a beta blocker since this was suggested at my appointment in October even if the GP didn't get a letter following that appointment (apparently, my tests in Jan showed similar POTSy reactions to my first round of testing, but there wasn't enough improvement in my numbers to make it worth trying my on octreotide)

[Fluffym]

When having autonomic dysfunction tests can anyone recommend what the best sort of clothing to wear is please? I'm thinking trousers due to being turned upside down but that's as far as I've got. I will be sent home wearing a blood pressure monitor too which I'm guessing might make undressing interesting. Any hints and tips are very welcome.

Fluffym

[Gaia]

Just loose comfortable clothing is fine with trousers. BP monitor you can remove to have a shower so clothing choice isn't such an issue there - you can just work round it.

[Fluffym]

Thanks Gaia

Got a feeling the two days I've got to be at the hospital are going to be very long ones, particularly as they want me to travel there and back each day. Will need to make sure I've got a quiet day before I go and a few quiet days after to recover. I guess most of us on here have to plan like that.

Fluffym

[Fluffym]

Well I've been to have my autonomic tests done and now await the results. Anyone know how long I might have to wait? The staff in London were all really lovely and clearly understood not only the autonomic issues but also EDS. Felt very understood when we had to stop the tilt table test early because my back was killing me. Did not make me feel bad or inadequate because of it. Glad I've been,although I'm now really struggling with the consequences of extreme fatigue, despite having slept for 13 hours last night and 11 the night before (with Blood pressure monitor nudging me throughout the night!) Do hope it passes soon.

Fluffym

[reet]

Hiya,

I recently saw a rheumy & I guess I was having a "bad day" because I started to feel pretty unwell sitting up & struggling to concentrate. My husband kept urging me to lie down but I'm pretty stubborn. Eventually I had to though & the rheumy seemed pretty concerned by this stage & started monitoring my BP.

The short version was lying down my BP was up over 165/135. After I'd lain down half an hour she got me up & after 5 mins standing (my maximum!) it was 95/65.

She rang me that evening to say she was pretty worried & could I get a 24hr BP & ECG done. I've just done the 24hr BP. ECG is in August. Haven't found out my results yet.

The thing is for me this is kind of "no big deal". It's been 7 years that I've not been able to stand up still for any period of time. In fact, things are better than they were. It used to be a matter of seconds I could stand. Now 5 mins will have me feeling really ill & will wreck my day, but it's long enough for me to manage brushing my teeth without using my perching stool. I figure it's kind of like shock - all the blood seems to leave my head. And a while ago I began referring to it as Orthostatic Intolerance, not as a diagnosis, just a description. Because that's what it is.

But the high BP has thrown me a bit. It does run in my family. I know the 24hr BP monitor will show very high systolic BP at least (no idea about diastolic) because of how high it had to pump to get a reading (230 seems high - I've used sphygmomometers before on other people & that seems high to have to pump).

I'm pretty sure there were some low patches too - like when I'd been standing for 5 mins (brushing my teeth) & had to quickly go lie down 'cause I was ill. But those times it beeped at me (no reading) had a second go & beeped again (no reading). I don't know for sure but I think from what they said those ones won't show if it beeped at me. Was weird that it happened both times I was standing when it took the reading (or lying down after feeling ill from standing). It didn't beep at me other times.

Anyway, thoughts are welcome. I'm thinking maybe the 24hr thing is good for checking the high BP but not so good for catching what I'm doing when my BP changes. I did have to record what I was doing each time it went off, but it didn't know whether I'd been sitting for 2 mins or 20.

And for the record, those monitors aren't fun. Woke me up almost every time it went off over night - once an hour Still though, needed to be done I guess.

[Fluffym]

Hi Reet,

I read your post with interest as I have recently had a 24 hour BP monitor test. Mine were done via Prof M's clinic. However, if I felt ill I had to press the button to activate an extra BP reading. I also had to make a record of my postural position and activity, plus the time on the monitor. Now by doing all this, I would not only have all the automated readings but extra ones too which will hopefully pin point why I felt ill doing certain things. Hope this makes sense. If you have no joy with your recent BP results maybe a more sophisticated approach is needed.

I know what you mean about the monitor going off when you are trying to sleep. I personally found it worse when I was having to travel to and from London. Lady on the train gave me the weirdest look as my arm expanded against her arm. Wonder whether she thought I was the Incredible Hulk??

[reet]

Ha Ha Fluffym! That's hilarious.

I had mine at a public hospital (I am no-where near Prof M) & I think they're only set up to check high BP & it wouldn't have occurred to them to check low BP. Yes I could've pressed the button to take a reading but they didn't mention it & I didn't think of it!!!

But do people with POTS get very high BP? I'm not sure this is the right thread as I don't think high BP is POTS - but then I don't know. Because it goes from very high to quite low (I won't say very as I have a friend whose gets much worse) I don't know what's going on.

I am going to call the doctors office right now to ask about the results. They'll have them & I'm just being a wuss not calling to ask.

[judi_helen]

Hi,

My daughter had both 24 hr BP and ECG last summer - they kindly moved the BP one into half term but the ECG was put on Thursday lunchtime and Friday am she had a maths A level exam. Would have been interesting to see if there was any change as she worked her way through that!

She had been relatively symptom free for 6 months but recently started to get tachycardic episodes again. Her consultant suggested that we try and capture one on film, while taking pulse and BP and e-mail it to him, that way he can see what is happening. Anybody else heard of doing this - it seemed a good idea to me as just bringing us back to clinic doesn't show him anything.

Judi

[Fluffym]

Reet

Im not totally sure about high blood pressure with pots. I know mine flies about but then I don't have a Pots diagnosis (yet). Someone else on here might know. You've just reminded me that I need to contact my Dr to see if they have my results yet!

Fluffym

[reet]

judi_helen, I've not heard of it, but it sounds eminently sensible. Great idea.

I got my results. The variation was pretty wild but the average was fine & overall it wasn't too bad. I knew I was having an especially good day that day so it wouldn't reflect how I am on a bad day, but I'm happy with it for now. I know I can't manage standing still for long & have developed techniques such as rocking on my toes, shuffling or just sitting down - anything to avoid standing. I don't go out much anyway. So as far as I'm concerned it's managed & if the high BP isn't a problem then I think I'm pretty good with it all.

So that was easy (apart from the sleep deprivation).

[gila]

hi reet
have a look here
www.stars.org.uk for definition/symptoms/and some more poss management tips of pots and other similar conditions
xxg