Autonomic Dysfunction/NNH/Prof Matthias/POTS

[star gazer]

Hi lb, we were told by the pharmasist that it would be about 4 weeks to optimum level, I asked because there was little change for my son at the end of week 2.
sg x

[ciderpig122]

Hellooo! Phoned Prof G secretary to chase it and the referral letter has come today. *hooray*

Is it really a years wait LOL its taken 8 months to get the referral letter haha

[RiffRaff]

Hello there,

I know that sessions on recumbent exercise bikes are often recommended for POTS sufferers. As buying a recumbent bike is so expensive I wondered if people might have tried using pedal exercisers, eg things like this

http://www.amazon.co.uk/Pedex-Deluxe-Fi ... =pd_cp_d_2

http://www.amazon.co.uk/Body-Sculpture- ... =pd_cp_d_1 .

Don't suppose so, but thought I'd check just in case.

Hope people are having good days today.

[teaspoon]

I have been wondering the same thing so I'll wait for answers with interest

[Fluffym]

Hi everyone

I have been to see the lovely Prof M in Queens Square. He has told me I have autonomic dysfunction but wants to run more tests on me. He said I would need to say over 2 nights in a hotel near the hospital. Does anyone know if we have to pay for the hotel? Got a feeling the appointment will be a long way off.

Also the Prof did ask me if I get reflux, I said no but then did not mention that I sometimes suddenly retch at night. I've got a feeling this is all linked to the problem. Does this happen to anyone else on this forum?

Feeling like I need a bit of reassurance

fluffym

[teaspoon]

You won't have to pay for the hotel - it's cheaper for them to put you in the hotel if you don't need the nursing care etc that you would get if you stayed on the ward.

I am sick a lot and have been told that that is probably related to bendiness. I quite often reflux food into my mouth as well, is that what you mean? The thread on gastroparesis might be of interest to you.

Sending *hugs*

[star gazer]

Hi fluffym, i posted about the hotels further back in the thread but if you didnt see them , the hotel is funded by the hospital, they have a contract with a couple close by and a few on the forum including me have stayed there, the only extra I paid for was that I chose to have my breakfast by room service so I didnt have to rush to get up dressed down to the restaurant and out to the hospital. normally you can wait upto a year for your test date to come through as the autonomic team is so over run at the moment.
regarding reflux, that has been an ongoing problme for me and was put in my nhnn notes when I was first diagnosed in 2008, i was diagnosed with EDS and Marfans habitus in 2011 by Prof grahame after referral from the auotonomic team and it was then that i was told that gastric issues can be linked to both eds/hms and also autonomic dysfunction. Unfortunately my gastric problems have increased and am now on a liquid diet, I have been referred to Prof Aziz neuro gastroenterologsit and have just had my letter through saying that he will see me, just have to wait for the appointment team to phone. I have been on Gaviscon advance presc ribed by g.p as I cannot take any inhibitors like zantac as the cannot be taken with midodrine (the meds prescribed for PoTs).

Hi riff raff how are you doing? I have looked at those too but have not tried one as yet, my physio wanted me to use an exercise boike to increase calf muscle tone (which will also help pots) but like may others sitting on a bike played havoc with my hips, however with the floor pedal things I wondered if they could be used sort of semi reclined like sitting bak in a recliner or something. (i might be tempted to look on ebay to see if any ar on ther cheaply!)
take care all
star gazer x

[sheppeyescapee]

Funnily enough my mum gave me one of those when she moved flat

[star gazer]

sheppey if you ever use it give us some feed back

[Fluffym]

Thanks teaspoon and star gazer for your responses and reassurances. Feel a bit better now for the hug and good wishes

Take care and have good weekends.

fluffym

[anaqi]

I've just come out of hospital after keeling over at the doctors surgery last week. I've had a suspected UTI for the last 3 weeks, I feel very unwell, I have pelvic pain and I keep going very light headed and weak when I stand up. I don't faint but my head swims and my knees give way and I stagger into things or collapse on the floor.

The doctor in hospital wanted this investigated so the nurse took my blood pressure and pulse sitting down and standing up. My blood pressure remained normal (around 110/60) in both positions but my pulse went from 84 sitting to 114 standing. The doctor reviewed this information and said it was normal.

I know you can't make a diagnosis on an internet forum but I wondered if I should I mention POTS to my doctor? I don't have these symptoms all the time but they do seem to get worse when I am ill with a virus or infection.

TIA!

Clair

[nemonie]

Those readings sound a bit POTSy to me. I would print of the info from the STARS website and take it to your GP as he/she is unlikely to have heard of it.

RE; recumbent bike. My exercise test was lying down and cycling as if on a recumbent bike. Even though I had taped my knees up I still managed to dislocated them several times as well as my hip, I never managed to get above the first speed target in the exercise test either, as it was too painful and too much physical effort (mechanically - my legs couldn't push that much).
I know this is only my experience, but I would say if your knees dislocate easily and if your hips/pelvis is very unstable then this might not be the best exercise kit for you. I find that using my wobble cushion (not pumped up to much) is good to do little calf lifts on whilst you are sat down. If you sit on a regular chair or wherever and then put your wobble cushion on the floor and put your feet on it and just wiggle your feet about however you want.

[star gazer]

pushing your feet into memory foam might also get the muscles going in the calves, my hand ot gave me a block for hand strengthening and that really works them out so was thinking a block of memry foam the size of a couple of shoe boxes would probably work in a similar way, pushing the foot slowly and gently into the foam as the foam gives. Not tried and tested just a little brain synapse (they do occure from time to time ) but if the principle works the same way as the hand excercises which make the muscles in my arms contract then it should make the calves contract and pump the blood back up and tighten the muscles without too much impact.

[teaspoon]

Today I asked my cardiologist about POTS. He said that my postural symptoms and tachycardias would certainly point that way to him. He was a bit vague and said essentially 'you definitely have vagus nerve dysfunction and it seems to fit with POTS'. I'm not getting drug treatment as he thinks the side effects would outweigh the benefits. I'm happy with this at the moment I think because I don't spend much time standing because of my joints anyway, and because my gastro symptoms are being dealt with by my gastro consultant. I think that I will pursue a referral to NNH to talk drug treatments with someone who knows more about POTS because I would like to try (I just don't think it's immediately urgent if that makes sense). I was impressed that my cardiologist knew about it (he insisted on referring to it as 'the POTS' which made me laugh) and was open to the idea that I have it. All in all, I think it was a positive appointment

[sheppeyescapee]

My support worker rang NNH and got through to an answering machine that said it may take up to 7 weeks to reply to any messages! It also said if symptoms get worse to go to GP, thing is my GP hasn't been much help and is relying on NNH input. NNH said to call them if I hadn't been contacted about my testing before May. Not sure what else to do because this hot weather is really making me feel worse.