Autonomic Dysfunction/NNH/Prof Matthias/POTS

[sheppeyescapee]

Hi SG,

My BP seems to be all over the place Am getting less actual faints now than before, but a lot of pre-syncope events, still that's a bit of improvement I suppose. Might get my support worker to phone NHNN to prod them.

J

[teaspoon]

eep, my local cardiologist said they might start me on midodrine soon. will they make me stop taking my amitriptyline? after years of insomnia the solid 9 hours i get from it makes it easily my favourite med (like, if i could only take one to a dessert island )

[trekster]

I might have convinced my GP for POTS testing more locally. She tried to talk me out of it but I put my foot down firmly.
Here's how the telephone conversation went;

Me: "thyroid result came back at 1.27 so ruled that out what next?"
Doctor: "I don't know where else to suggest"
Me: (names a place recommended to me by another POTS patient nearer then NNH)
Doctor: (after a discussion about AI issues and biofeedback) "It's not easily treatable or manageable"
Me: (gets firm with the doctor about knowing it is not in my head and she's not allowed to think that anymore)
Doctor: "you might just feel the cold more than others"
Me: "I'm sitting in my flat of 25 deg in warm clothing, I've just eaten and I'm freezing cold"
Doctor : "OK I will send a referral and see what they say"
We ring off amicably

She then rings me back after time to think a few mins in fact asking for my symptoms. I get stuck on a question
and mention how severe the brain fog is before I take my gabapentin (which fogs me up) and various other things.
We discuss what type of BP monitor and what readings and how long to take them for and I ring off again.

My GP is concerned the referral is going to get bounced back. If it does I will ask for another referral under
'Patient choice' would NNH come under that?

[star gazer]

Trekster G.P's from across the country can refer to NHNN. But a lot of larger cardio units can do a tilt table test to diagnose pots then if it is evident you could then get a referral to nhnn. I was origionally under a cardiologist who suspected pots (the first I had heard of it) and as I was already a patient at nhnn for another matter I was referred internally. Son (as mentioned in previous post) had his tt test at a different london hospital on behalf of his cardiologist and will be referred to nhnn from November when he turns 18. One of the things you could ask your g.p is to see if she can arrange a 24 hour b.p monitor and tape to register any changes in your b.p and heart rate, the g.p should be able to arrange this through your local hospital

Teaspoon Re Amitriptyline and midodrine, I think it will be a case of what your dose is and the dose of Midodrine you will be on, they may feel that it is ok but my Ami dose was high for neuro pain and my Midodrine dose is also high so Take the advise of your prescribing doctor on that one, I was just following the orders of NHNN its a shame I couldnt continue because it really helped the nerve pain and consequntly just left me with the joint pain to deal with, now I am on pain meds plus another for break through nerve pain, nhnn are not happy about that either but I would not be able to move with out some level of pain relief.

sg x

[trekster]

Thanks for the tip SG, my GP has suggested I take readings from a BP monitor that ive bought myself!
I'm near one of my nearest (live between 2 so hard to tell which would be the better option the city or town?)
hospitals on thursday so will try and see if I can pop in there to get a tracing done.

Now I'm wondering whether she really does my best interests at heart? Very tempted to change my GP when I
get my car at the end of the week.

[nemonie]

I've had an evil migraine since Monday, just recovering from it today. I couldn't keep anything down and was all cold and shaky. I took my BP randomly as I felt so weird, it's usually fairly steady at around 105/75 but this time it was 82/52. I wasn't tachy though just my average pulse of 72.

[star gazer]

nemonie, that b.p reading was on the low side, no wonder you felt so rough. the tachy responce cant have kicked in to bring the level up. Hope you have been drinking lots of fluids as you know dehydration can cause low b.p. and might be the result of not keeping anything down. hope you feel better soon, get some nuun down your neck and stay of the chocolate for a while
sg x

[serenity79]

Some of you might remember my issues with the neurologist in Belfast and her conclusions that I didn't have POTS, I just had muscle decondititioning? Well, I finally had my 'second opinion' appointment arranged for me by my rheumatologist. I was sent to Dr F's clinic, who I had seen before in 2007 for an unrelated issue - he diagnosed my icepick headaches (he was actually the 1st person to officially tell me I was hypermobile) so I knew him and liked him. I hoped this would bode well.

I actually saw his registrar Dr D first, she was lovely - she listened to everything I said, then gave me a thourough examinination. After that she went to discuss her findings with Dr F, then he came in and he had the results from the tilt table test I had done at that hospital last month - in his opinion my symptoms 'fall within the realm of POTS' and I DON'T have muscle deconditioning! Dr D said I was actually quite strong - I said I wasn't surprised as people with EDS usually have strong muscles as they have to do the job our tendons and ligaments aren't doing! They may get tired quickly but with physio etc they're not deconditioned.

So he's going to do some research to look into exercises and physio first before going down the medication route, but he says as a hypermobile person there's only so much 'toning' I can do. But it's such a relief to find someone to listen to me and want to help me!! That neuro in Belfast had seemed to have made her mind up on a diagnosis and then made my symptoms fit it, and then refused to listen to me when I disagreed. We started off on the wrong foot the first day we met when she refused to believe I had EDS, and she was ten times worse during our 2nd appointment, making Professor Grahame sound like quack But Dr F said it was obvious I was bendy.

So there we have it! If I hadn't fought the diagnosis I would have been left with 'muscle deconditioning' on my file to explain all my debilitating symptoms (which made 2 pages worth when I typed them all out for Dr F) when I have no such thing! (Oh by the way, the hospital promised they had found my files and would send all my test results to my GP.... I'm still waiting.....)

Never thought I'd be happy to say "I have POTS", Lol!!!

Many thanks to everyone here for all the help, advice and care during this. Love you guys.

[nemonie]

Yay, I'm glad you've found some good docs who actually listen too you. Welcome to the POTS show

[star gazer]

glad you are on the right track now serenity and wlecome to the very potty world of pots. hope you get some control with non med regime, otherwise it the jungle of which one is right for you, but cross that bridge if you get to it, I preume for now you are on the extra water, salt, calf pump routine with head of the bed tilted up. for hints and tips have a look at stars.org or dynet.
love
sg x

[trekster]

Congratulations it's POTS hoping I can say that soon.

[louloutinks]

I saw Dr Talk Very Fast a couple weeks or so ago in what I felt was a rushed app but was pleasantly surprised when I received his letter that he had remembered EVERYTHING that I had told him. There are more things that I completely forgot - he asked me if I'd had any other illnesses - my mind was blank and could only think of the flu lol!!

But in the letter it stated that the waiting list was over 12 months. OMG is it really?

I was wondering about POTS - I thought that BP did not drop with POTS on standing - so what is that called if it isn't POTS?

[sheppeyescapee]

Yes the waiting list really is that long! I've been waiting since August. You can get put on the cancellation list which may get you seen quicker but you have to be available at short notice. Hope we both get seen soon

[nemonie]

There are several different types of POTS - BP does not HAVE to drop on standing for a diagnosis, bit it can and still be a kind of POTS. Does that make sense? OR have I written it really badly?

[star gazer]

Hi lou, to back up nemonie the three of us in this house with pots all have a different varient, me classic with a b.p drop and rise to anything upto 150bpm but can become brady at night with a hr drop to 50bpm (thats not often anymore with the meds) Daughter pots with vasodepressor syncope, her b.p stays level but becomes tachy and can pass out at any given time mostly when getting stressed, son has pots with occilating b.p and vasovagal syncope overlay, he has drops in b.p gets very tachy has an arrythmia and will pass out if shocked. I am on Midodrine son on fludrocortisone but he is possibly changing to ivabradine, daughter on non pharm control, using electrolytes calf pumps extra salt etc, nhnn wanted her to start fludrocortisone after her three day stay for tests but she wanted to see how things go.
with pots the defining factor is the raise in heart rate + 30bpm with a possible drop in b.p, with a few other ingredieants thrown into the mix. when I had my tt test they took blood during the upright bit to test for levels of adrenaline this was to test for adrenergic pots.
I am glad you got Dr.tvf's letter which was quick, as sheppey said you can phone to go on the cancellation list, I did and was seen after 8 weeks but that was a few years ago now and they were not as overloaded, you phone outpatients or autonomic unit and ask to go onto list you need to travel with 24 hours notice, daughter got a phone call on the morning but we are half an hour to waterloo so and hour travelling which is ok.
hope you dont wait tooo long
sg x