Autonomic Dysfunction/NNH/Prof Matthias/POTS

[serenity79]

I think I remember reading something like with the word 'Postural' already there, the word 'Orthostatic' becomes redundant as they both mean roughly the same thing. So POTS and PoTS are the same, just phasing out the superflous 'orthostatic' a little bit.

[RiffRaff]

Thanks, stargazer and serenity, my guess is that people use the terms to mean pretty much the same thing.

Sorry you've been having a rough time, stargazer, poor you, hope the symptoms ease off very soon.

Bye for now x

[sheppeyescapee]

Does POTS run in families too? I was talking to my cousin about it and she has a lot of the symptoms of POTS and is suffering quite badly at the moment.

[Looby62]

Hi,

My daughters and myself all have HMS with varying symptoms. My youngest daughter is 17 and suffers problems with her knee, neck, hands, IBS, low vit B and D, insomnia and occasional 'clunky' heart feelings.
Over the last few months or so she has been feeling dizzy and nauseous after the 'clunk'.

My eldest daughter was diagnosed with Autonomic Dysfunction a while ago after many fainting episodes caused by an erratic heart beat and low blood pressure. She has gone on to have almost daily seizures which have been diagnosed as Non Epileptic Attack Disorder.
Her doctors don't think that the AD has anything to do with the NEAD but I am unconvinced.

Bearing this in mind my 17yr old and I, went to see her Dr. about the dizziness and nausea as I was concerned that she too may have AD as it sometimes went hand in hand with HMS.

The Dr said it unlikely as AD is unusual and in my youngests case it was just an ectopic heartbeat which is common and nothing to worry about. She did check her blood pressure and noted that it was 'quite low' but said this was a good thing.

I'd like to believe it's all ok but have concerns because of my eldest daughters experience.

I suppose I'm just looking for some reassurances from people who live with this side of things on a day to day basis and in my opinion have better insight than a GP may have.

Thanks.

[gila]

sheppey- as far as I know yep pots can run in families.

looby- re the nonepilepsy seizures maybe have a look at this http://www.stars.org.uk/patient-info/conditions/ras (the NEAD dx sounds to me a bit like "well we dont know what it is, we just know what it isnt" ...)

and well... some types of AD are NOT unusual/rare in HMSers - and yep most of us know the "gp says low blood pressure is a good thing" and well it can be- but if you get probs/symptoms ... it isnt. you could get your gp to do a simple 'indicator' test for the most common ad in hmsers... pots (postural orthostatic tachycardia syndrome) - take bp and pulse sitting down and then after standing some mins (whilst still standing!) - if pulse goes up by 30+beats per minute that can indicate pots (and another type of pots if blood pressure also changes)-

if you fancy stars.org.uk and dinet.org are informative sites and if you find anything that 'fits the bill' you could print that info off for your daughters docs.
good luck!
xxg

[curlysue]

I too used to get told "oh your blood pressure is nice and low" by GPs. I can't remember which doctor it was that first flagged low blood pressure up as a potential problem. Perhaps a change of GP is needed, I had to see several before I got to someone who figured it out.

CSx

[Special Kay]

Hi all,
I was just wondering if any of you have seen Prof Aziz and could tell me if he is aware of the Driscoll theory as my dietician is referring me to him.......presuming i can get an appointment judging by what i've read so far on here. If anyone could let me know i would be very grateful.
Kay.

[Looby62]

Gila and curlysue, thank you for your input.
I have looked at the stars site before, it does look useful.
I have an appointment tomorrow myself with my GP and I'll ask about the sitting/standing test. I've already asked to be referred to uclh as neither of the GPs I've seen at our surgery seem to know or care about the complexities of HMS. I'm hoping the referral has actually been done but that remains to be seen.
It's great having this forum to run things by people in the know.
Thanks for your help.

[curlysue]

Hi all,

I had an appt at NHNN yesterday with one of Prof M's registrars. He was discussing blood pooling (they found some evidence of that in me when they did the inpatient tests apparently) and said that blood can pool in your abdomen as well as in your lower limbs. This might explain some of the discomfort and worsening symptoms I have after eating. I could be a 'gut pooler' (how lovely does that sound!).

Does anyone else have or suspect they have this particular type of pooling?

He said that there is a drug they use for this called 'octreotide' which as far as I can make out is mainly used for other things, its Wikipedia page doesn't even mention POTS or dysautonomia... has anyone heard of this medication or tried it? I probably won't take it as I have medication anxiety but I'm just curious.

CSx

[loosebones]

curlysue, you're probably not going to like my answer...

Hannah (who does the stickmen) was one of the first to trial Octreotide and it's basically an injection in the abdomen at certain intervals throughout the day. It did really help but the whole injecting thing took it's toll and there were a few side effects. The good thing is that she no longer needs the daily doses of octreotide and just goes for top ups every 2 weeks I think (but not sure which drug)

I seem to be a potsie who has pooling in the abdomen as I'm much worse when I've eaten anything. Unfortunately I'm not due to be seen by Prof M so my local cardiology team are trying to manage my symptoms but have so far not succeeded

[curlysue]

Hi Loosebones!

That's really interesting about Hannah. (If you're reading this Hannah, would you mind if I sent you a PM about this?) Yes the consultant did say it was an injection, although he didn't tell me it was several times a day! Injecting I don't think would be an issue for me, would be more the chemical itself and its potential side effects.

Do mind if I ask what methods you are trying to manage your symptoms? A quick internet search brought up a forum where people were discussing things like small meals, low carb, even wearing abdominal binders. (That sounds painful!)

CSx

[loosebones]

Eating little and often has been recommended, as well as plenty of fluids and if your blood pressure isn't too high then increase your salt.

I think the amount and frequency of the octreotide depends on how severe your POTS is. Hannah is a bit extreme

[louloutinks]

Hi I have popped some pics up on here http://s481.photobucket.com/albums/rr17 ... rts1/Bits/ (are we allowed?)

I have popped a vid on with sitting and standing and some pics of my legs with a bit of vaso (well I presume its vaso/pooling!) as I am bored lol!! Have had a bad day too. Have now missed 2 cancellations at the autonomic unit as I cannot get anyone to look after my son. I really need to get there!!

[sheppeyescapee]

I did a blog about the testing that I went for at NHNN - http://sheppeyescapee-thisisme.blogspot ... -nhnn.html

I thought it would be more appropriate to put it here as it relates to this thread. I hope this ok

[louloutinks]

Just read your blog Sheppey and wanted to ask a few things as i feel I didn't have enough time (10 min appointment at NHNN) to ask enough questions and get enough answers.

You said that it was 10 mins of being upright before you felt faint but do you ever get that before 10 mins and is it variable like good and bad days?

Not sure if you looked at my pics close up but I am confused between vasoconstriction/dilation. How do you know what is what?

Where did you stay when you was at NHNN? Sorry for all the questions but I feel left in the dark as my GP is as much use as a chocolate teapot and NHNN did not mark me as arrived so I had to catch the doc as he was leaving so didnt get much time