Autonomic Dysfunction/NNH/Prof Matthias/POTS

[sheppeyescapee]

That's interesting as I know a few people at our local group as well as myself who have been told they have reactive hypoglycemia

[ciderpig122]

Can I ask your advice? Prof G when diagnosing EDS last September, wrote in my letter he suspects autonomic dysfunction and or PoTS, I've wrote to him twice as has my GP, andnim not moaning cause I know how busy he is, butnive not had a reply.

Lately I've been getting more ill, I've always had what we think of as fibro fogs and been dippy and forgetful, I also have a sleep disorder and take nhs amphetameanies

but I've started having "blank outs" ie forgetting what I am doing, doing very dangerous things, stupid things, that's cant explain, my GP has considered ADHD and focal epilepsy, the best way I can describe what happens is : wheniam bored, stressed or frustrated, I get a sinking feeling in my tummy, like driving over a big hill in a car too fast, I sweat, my eyes roll backwards and I can't keep them open, pins and needles run through my legs and hands and I feel terrified.

Along with many other pots auto dysfunction symptoms that I won't bore you with, does this sound like anything you guys have?

[AnnaH]

It doesn't sound like my fainting episodes - generally I feel kind of 'spinny' and tired, and woolly-brained. Next thing I know, I'm hitting the ground. I usually regain consciousness as, or shortly after, I actually hit the ground.

The terrified feeling and the sinking is how my friend describes her temporal lobe epilepsy episodes. I'm not saying that's what you've got, as I'm not a medical person, but my friend did say it took ages to diagnose her as it didn't show up in any EEG's she had. Once she was diagnosed, she went on medication which worked well.

Whatever is causing your 'episodes' I hope they get to the bottom of it soon.

[ciderpig122]

That's interesting, having traced my genetic family I now know this epilepsy is on the mothers side. Unfortunately I don't have the medical notes yet to help me.

I've been having them for 12 years undiagnosed but not to the extent i am now, I've never been dangerous before.

Thanks for replying I really appreciate it. My epilepsy meds the GP put me on (with no EEG or anything) aren't doing anything at all

[star gazer]

Hi ciderpig, your g.p can refer you to nhnn and just include a copy of prof Grahames report. he should refer you to Prof Mathias at the autonomic unit.
best wishes star gazer

[AnnaH]

Just an update to my situation, as I phoned the helpline today: It appears I have a cold. Why I didn't notice this before is because I have such severe allergies, I always have sneezing and a runny nose so it has to get pretty far advanced before I notice. I am now noticing.

As I understand it, POTS often gets a little worse if you are unwell, so that must be it. I'm seeing my GP on Thursday anyway (about my hip) so intend to start 'suggesting' POTS symptoms to him, under the umbrella of EDS (which I'm diagnosed with), so that when I'm ready to talk to him about further investigations, I've already mentioned symptoms a few times. I'm playing the long game

[ciderpig122]

Thanks Stargazer. Not sure he will though.

He suspects this epilepsy and has just put me on the drugs as opposed to send me back to the neurologist who said i was fine with no testing either. the only reason he agrees with autonomic dysfuntion is I took him a photo of my feet when one was morgue white and the other was sunburn red then another photo with the same effect but on opposite feet

Hes applied for special funding to get my back re MRI scanned, that was 6 months ago too

the local Rheumy apparently referred me to pain clinic............in January, 2 letters later.........sh*t all has happened with that either, I called Prof Gs office and apparently the poor chap is so far behind with post he may have my letters and the GPs somewhere but I just have to hang on.

Anyway ahahah im sure someone will do something when I manage to cause an Injury, my other half nearly lost his fingers a few weeks ago because of one of these black outs and Ive nearly burnt the house down twice

[star gazer]

Hi ciderpig I guess you hope with referral is for Prof Grahame to refer you directly to the autonomic team which I am sure can happen as mine worked that way but in reverse, i was already under Prof Mathias team and they referred me to Prof Grahame.

[andreak]

My daughter has complex regional pain, EDS HMS and POTS. It has taken us two years to get the POTS diagnosis and things were really bad for a time with her having colvulsive faints on average 25 times a day. Things are now much more controlled but I was interested to read your experiences with POTS and stair-climbing
Alison is at college (her first full time course since she was 12 and to ill to attend school) and we have requested a lift pass because on several occasions she has collapsed or had near collapses on the stairs. The college have not provided us with a pass as the tutor feels she looks well most of the time and is maybe "playing" on the condition. I am now trying to organise a consultants letter outlining the problems as supporting evidence
In the past any knock, trip or fall has resulted in spreads of her CRPS and extreme swelling, discolouration, dystonias etc so it is worrying but she has to live as normal a life as possible and no-one wants to wrap her up in cotton wool
As regards the stair-climbing what do other people find helpful or is it best to avoid wherever possible
Also with regard to exercise have people found anything particularly helpful
Many thanks
Andrea

[andreak]

My son has had a couple of issues of feeling unwell at school. He has complained of pounding headache,gone pale,felt dizzy and nauseous and almost fainted. I bring him home and give him salty snacks and a drink and chance to rest and after 20minutes he is feeling better. Does this sound like p.o.t.s? His rheumy said to monitor him. He is 12. Any advice welcome.

This sounds very much like my daughter who is 17. She has POTS and problems with changing position but it is also really bad if she is sat in one place for too long. We had it explained that the calf muscles dont pump the blood back up to the brain and blood pools away from where it is needed. Do his feel discolour or redden...Alisons does, especially when she feels faint. Our consultant advised crossing and uncrossing legs / ankles or to get up and walk around after a short period of sitting to get the blood pumping properly again
Things havent been easy but she now notices the warning signs so we are down from 25 faints a day to a couple each week now which is far more manageable. Its all about what you find works best for your son ... everyones different
I do hope you manage to get an answer
Andrea x

[star gazer]

Hi andreak, my son 17 was diagnosed a year ago with eds and pots, he saw prof grahame and also a cardilogist at the royal brompton(Pots diagnosis) when he started college I sent in the profs report also the physio and ot report who he saw through prof grahame, ( we had to take him privately as we couldnt get him a slot in the adolecent clinic at the time) College have be brilliant and the student access team have also been involved.My son has lots of concessions in place like being able to lie down get a drink have a snack etc to ease his symptoms, Unfortunately at the moment he is not well enough to continue so is now going to restart in September when hopefully a change in prescription for his pots will work more effectivly. he missed all of Y11 from school so with the help of an english tutor provided by county I home schooled him in English maths a nd 3 sciences so he could take his gces's at home, lying on the sofa in p.j's He passed 6 which was enough to go to the college who are now supporting him with the re start in september. I think that whilst you are waiting to see Dr Kazkaz, that you give the tutor info about pots, I am sure they have an info sheet on the main hmsa website, I gave my sons tutors at school that info so that they could understand what it was the other thing was that the condition of eds and pots allowed my son extra time in exams with rest breaks too. He spends a lot of time sleeping at the moment but exercise makes him bust aslo stress with the type of pots he has causes lots of tachy with presyncope. we use salt and hydration drinks to help (we use high 5 zero and nuun which are low in sugar but have a good hydration balance unlike lucozade which played havoc with his sugar levels). Unfortunately both my son and daughter (20) can both "look" reasonably well and be on the verge of passing out. My daughter regularly passed out in college (i think they thought she had an eating dissorder and was not eating enough) she wasnt diagnosed until after college finished. With the lift pass I would speak with the student support people and show them letters diagnosing your daughters condition and that for her safety using the lift is a priority because if she passes out at the top of a flight of staires she will seriously hurts herself if she were to fall down them and potentially any other students on the stairs, your could also ask Dr Kazkaz if she could mention this in her letter. one of the big tricks we had to learn was not to let our leg muscles get lazy because they are needed to pump the blood back up the body so simple calf pumps and squeezes can help when feeling faint also bending over and scrunching your abdomen can help too, if all else fails lie down where ever you are to prevent injury. stars.org also do an info sheet that you can print off to take to the college.
best wishes
star gazer

[sheppeyescapee]

Support worker and I did a little experiment today. We went out for coffee, before drinking the coffee my heart rate was 120 and after coffee it was 110. Weirdly we were both expecting the heart rate to go up after the coffee, would that explain why I feel better after coffee? (well at least for a little bit). Nearly all day my heart rate has been hovering between 120-130. I have been so-so fatigued all week

[Fiona-Jane]

hiya, i'm at NHNN on tuesday for my appointment at about 2pm..... if anyone wants a chat or a coffee i'll be in cafe after my appointment, treating myself to expensive posh coffee


you cant miss me, i stand out like a sore thumb cos my wheelchair is plastered with colourful stickers and my wheels have lights in them!

hope everyone is ok today, i'm having a super PoTSy day today but hopefully tomorrow will be better


and coffee makes my hr drop too... i always thought that was just me so it's very nice to know it happens to someone else too! if i have more than a cup or 2 my rate does pop up a little so i stick to the one cup. my theory is that as i like the taste of coffee it may relax me and make my rate drop, and i find all warm liquids quite soothing..... cant think of any other reason... my resting rate has been around 130bpm too and i expect thats why i feel so rough today.


fi xx

[loosebones]

I took my first dose of fludrocortisone this morning and I'm wondering....can anyone tell me how soon I can expect to see any change? I went to my drs surgery earlier to pick up a prescription and my heart rate shot up so I got carted out to my car in the surgeries wheelchair and told to go home and lie down

[Blaadyblah]

I know bree was looking at it in February (see medication specific topic on fludrocortisone) but didn't get any responses. Maybe a naming thing, I will check other names.