Autonomic Dysfunction/NNH/Prof Matthias/POTS

[star gazer]

Hi sheppey, do you have the email address for the clinical nurse specialist because it might be worth emailing her to explaine what is happening and if there is any way that you can be seen sooner.
sgx

[loosebones]

Sheppey that's a ridiculous waiting time!

I'm struggling with the heat and my resting heart rate has gone up another 10 beats so is now 110 bpm at rest. I've been taking the fludrocortisone for over a week now but haven't noticed any improvement

[sheppeyescapee]

Yeah is rather ridiculous LB, my resting heart rate is around the same as yours between 110-120 jumping to 140-150. Hope the meds start helping you mate.

[Fiona-Jane]

i was told today that fludrocortisone can take a while to build up to a high enough level in your body before you notice an effect (2-4weeks), but it also tends to be long lasting so once its started to work you may be able to miss the odd day or two if you forget to take it etc without too much of a problem.

my cool vest was amazing! i LOVE it even more now! it was really hot in the bus on the way there and we got stuck in traffic so i was in there for over 2hours and would have been really ill and heat strokey without it. was 40mins late for my appointment but the lovely autonomic team still saw me (usually you'd be refused if you're that late) but had to wait a long time. the actual appointment went well too, although i was feeling like death and struggling to speak. i'm gonna try midodrine as salt and fluid loading isnt really working and he said he could clearly see it's not working as well as we'd need it to (as i was as white as a ghost and my feet dark purple, just couldn't stop the pooling today), although i was commended on my initiative at getting and using the vest without any prompting from one of the team etc. my hr and bp levels are still very variable but my symptoms are bad enough that they think it's ok to attempt the medication, even though its riskier in me due to my randomness

i'm being sent for another test to check how much i pool in my tummy after i eat cos my symptoms increase tons after i eat and i often really struggle to stay conscious. they scared me by saying i may have to consider octreotide if it's very bad as i looked pretty sick during the appointment and i'd had my ensure drink about half an hour earlier so my extra symptoms may have been from that (as after it i felt b****y awful but 2hours later i felt tons better.. annoyingly my appointment was all over by then... actually, i had a worsening of symptoms half an hour after my chocolate bar too.....). i hope the symptom increase is a coincidence and just related to my tummy rather than my PoTS... octreotide scares me as it comes in a syringe! :^o


actually, i must have been sicker than i realised today as i saw 2 of the team and each one repeatedly asked me if i was ok, they looked really concerned but i totally didnt register this until i got home and laid down and rested a bit so brain turned on.... i usually look really healthy, even when i feel ill so i must have been really very sick for it to show, and for them to be so concerned when they see PoTS patients everyday and are so used to the symptoms that they must seem normal...

bloomin knackered as i was out from 12.30 till 7.40pm.........all for one appointment!


fi

[Fiona-Jane]

but i was very irritated that one of the team automatically assumed that i was deconditioned and my PoTS was due to that. twit. i'm probably fitter and stronger than him, i still do weight bearing exercise and spend time on my feet everyday.

it took me a while to get into his head that i use the chair for eds related problems and not pots symptoms and so simply doing more time on my feet a day wont get me out of the chair like he kept trying to tell me.... and i've had pots symptoms since i was a young child and since getting my chair my symptoms have never been better, they're much reduced.... so if others see one of the male members of the team and use a chair, be warned that he may do the same to you too....

he asked what fitness stuff i do so i said my badminton in a chair and he said 'we dont really like to see sports done in chairs', blatantly hinting that its not very good for fitness levels so he got educated about competitive badminton cos he was clearly deluded about wheelchair sports. and i asked him whether he'd rather i sit at home all day and got deconditioned cos i physically cant walk due to my EDS or if i go and play up to 6hours a week of competitive badminton that makes you properly sweat as its such hard work, and which has been clearly shown to help my PoTS..... after our 'debate' he never mentioned the deconditioned thing again. and actually mentioned that i'm clearly very fit and strong. ha! fiona wins the argument again

he really annoyed me! i still do all the conditioning exercises that i did while i was an acrobat and so there's not a snowballs chance in hell that i'm deconditioned. p**t.


fi

[sheppeyescapee]

Thanks SG, have emailed them today so am just awaiting their response. Am feeling even rougher today, was looking forward to the sunshine but between this and the hayfever have been thoroughly miserable

[Looby62]

Hi,

I'm still finding my way around the boards and have found it very useful, so thanks to all those that have preceded me.

One of my daughters has Autonomic Dysfunction and has problems with low blood pressure, erratic pulse and heart rate leading to fainting. She has not been tested for POTS as she is suffering with psychosis at the moment and that is all consuming.

My question is actually for myself and my other daughter. We both have odd spells of dizziness and occasionally a feeling of a racing heart. Hot showers are a bit of a no no for me as I have to sit down and get my breath back once i get out.
It has never been mentioned that either of us have any blood pressure or pulse rate issues.

The sudden warmer weather has knocked us out today, we don't take well to the heat and find it extremely draining and stiffling. I had a really hard time making my legs work on the 5 minute walk home from the shops today.

Do you think this could be AD/POTS related or am I just reading too much into it? Our GP is a bit on the clueless side as far as our HMS problems are concerned so I thought I'd run it by here before seeing her.

Thanks.

[sheppeyescapee]

Have been finding the same thing. The heat has been making me feel a whole lot worse, also that alcohol on top of that is not a good idea

[star gazer]

oops to alcohol dilates the blood vessels and makes pooling worse.
fionajane, I was told by the team that they will discuss otreoside when I go back in November not looking forward to that. With the midodrine I am better than I was but as far as the team are concerned not under control.
Heat is shocking at the moment,, had a cool bath and the fan is on in the bedroom, right leg really swelled up with brace on today, am a bit dehydrated as there was a lot of perspiration going on so my tipple of choice tonight is nuun!

Hi looby62, if one member of your family has pots then it is more likely that other members also have pots, the initial steps would be to increase hydration and salt whilst the weather is hot. A simple test is to take your pulse while lying down then stand for about three minutes and take your pulse again. An increase of 30bpm or a standing rate of 120 would indicate pots. Everyones heart rate increases on standing, this is a normal adjustment in becoming upright but with people who dont have pots the level should settle after about 3 minutes to a normal rate of between 60 and 80 bpm depending on your level of fitness. If your lying hr is 70 and after standing for 3 mins and then you take a reading and it is for example 100 then it could point towards pots.
Three in my house have a pots diagnosis after tilt table tests, two of us on meds and one on self help measures. there is a website called stars.org who have info on pots that might help to educate your doc. (we gave the info to our G.P and the paediatrician).
best wishes
star gazer

[Looby62]

Sheppeyescapee...
Sorry to hear you're suffering too. It's been awful this evening, don't think any of us have much chance of sleeping tonight

Star gazer...
Thanks for the info, the stars site looks very interesting. I'll get hubby to take my pulse tomorrow and see where I'm at.
I try to keep hydrated throughout the day and make sure my daughter takes drinks to school with her but taking extra salt is difficult. I have never used it to cook with and try to avoid crisps and the like as I'm also struggling to get my weight down.
Any advice on that one please? (the salt, not the weight loss... I've grudging come to the conclusion that I have to just woman up and stop filling my face day and night to solve that one )

I read in an earlier post (Fiona, I think??) about a cool vest. Does anyone have any info as it sounds great.

I'm so glad I took the plunge with the forum. Thanks guys.

[nemonie]

A few of us us sports hydration tablets, there is a selection you can buy online that you add to water. I use nuun tablets as they are gluten and lactose free. I noticed in boots that they sold a big tub of rehydration powder (Boots own brand) - more for after the gym than the little tiny sachets you can get for when you have the runs . But it didn't say on it whether it was gluten or lactose free, so I didn't get any.

[star gazer]

we use nuun and high5 zero, for rehydration they have extra salts too, they make up 500mls so easy to add to a bottle of water. both products are better than lucozade which we started with as it has a high count of glucose and caused a problem for my son. have a look at both of their websites (nuun and high 5) and see which might me good for you they both have lots of flavours. I never cooked with salt either but now as habit sprinkle extra on my sons food. Processed foods often have more salt in them like tinned soup (a bit hot for that at the moment though!)

[sheppeyescapee]

Anyone know how much we should be aiming to drink every day? I sweat very heavily so get dehydrated quickly. I've started using the recumbant bike and am managing 20k in 40mins on it, but my heart rate doesn't like it one bit. During the time I was using it my heart rate was going up to around 150-160 I didn't feel out of breath or anything just that my heart was beating really hard and fast.

[RiffRaff]

Thanks for the replies on the pedal exercisers. I haven't decided if I'll get one yet. Sheppey, do let us know how it goes if you do use the one you have.

Hello, Star gazer! I'm OK thanks. Looks like I'm onto the pharmacological stage of POTS treatment, but I don't know what drug I'll be taking yet. Yes, I was thinking that the pedals might mean that I could adopt a relatively recumbent position for exercise, which might be good. Also, thanks for the details of the rehydration drink a while ago. I've been using it, though I can't say that I've noticed any difference from drinking it.

Nemonie, thank you for the tips and details about the recumbent bikes and the wobble cushion, I'll look into that.

Hope people are managing in all this heat.

Bye for now x

[sheppeyescapee]

Hi Riffraff am doing ok on it so far, doing 20k a day