Autonomic Dysfunction/NNH/Prof Matthias/POTS

[loosebones]

20K? that's really far!!!

I keep forgetting to take the fludrocortisone as it has to be kept in the fridge. Anyone have any suggestions as to how I can remember to take it?

[serenity79]

Do you have a reminder feature on your mobile phone? You could set that to go off whenever you need to take it.

[sheppeyescapee]

Was too tired to do it today. Been laid up in bed most of the day, heart rate all over the place

[Gaia]

20K? that's really far!!!

I keep forgetting to take the fludrocortisone as it has to be kept in the fridge. Anyone have any suggestions as to how I can remember to take it?

I have it with my cereal every morning so keep it next to my milk and take it out of the fridge at the same time.

[AnnaH]

I know I'm in good company, but I've just been wiped out in this heat. I'm breathless and tachycardic and hardly lifting a finger!

I've heard the weather is going to break by next weekend, and be much cooler with occasional showers. I'm supposed to be doing a fete at the weekend, so I'll actually be relieved. But other than on this forum, I don't like to admit I had the sunny weather for fear of being thought some sort of weather heretic; the truth is, I like the sun, but the sun doesn't like me

[star gazer]

Hi loosebones I have stuck a bright green "post it" to the fridge with bold black writing on it "remember meds" Sometimes I admit I have forgotten until later in the day but if I left it to my son to remember to take them the bottle would still be full!!.

[teaspoon]

AnnaH I completely sympathise. People keep having a go at me for saying that I'm too hot I'm not trying to be a party pooper, I just feel awful when it's like this and I do anything. And I'm getting married in less than a week and I realllly don't want to collapse on the day...

[sheppeyescapee]

Been drinking about 2-3 litres a day. Support have left 2 voice messages and 1 email so far but no reply to any as yet.

[AnnaH]

AnnaH I completely sympathise. People keep having a go at me for saying that I'm too hot I'm not trying to be a party pooper, I just feel awful when it's like this and I do anything. And I'm getting married in less than a week and I realllly don't want to collapse on the day...

All the best for a great day - the weather has finally broken so you should have cooler weather (15 degrees with occasional showers). I hope the showers are very occasional and you have some not too hot sun!

[ciderpig122]

OHMYGOD. Ive just been looking up PoTS and Reflex Syncope.

i cant believe I've spent 12 years describing these symptoms and nobody spotted it, and still havent acknowledged it and done anything about it despite being EDS.

Am I going mad?

It started as a sinking feeling, dizzy feeling, my eyes would roll into the back of my head but I never actually hit the deck, I pumped out sweat, and everything was a fog for a few minutes. this was and is still triggered by heat, stress, fear and boredom.

My Mother has epilepsy, but shes convinced she hasnt, they cant confirm it just say she has some scarring on her brain, she has exactly the same symptoms and her epilepsy meds dont work.

OHMYGIDDYAUNT. I may actually know what it is!!!!! holycow!!!!!

*RUNSROUNDTHEROOMEXITED* well kinda hobbling round the room!! ahahahhahahaahhaha

[ciderpig122]

and my friends think i am a freak as i wont go in the sun, i have extreme issues with heat and light and sound, we have 2 top of the range air con units here as i am demented in the heat. it all makes sense!!!!!!!!!!!!!!!!!!!!!!

[sheppeyescapee]

Today my heart rate has been hovering around the 120s which isn't the highest it has been lately, but my chest has felt rather fluttery and have had the shakes all day. It's not been quite knock me flat and into bed/sofa but it has been rather draining. Hope the drop in temperature has improved things for you all. It is still pretty humid here. Could happily have all the windows open but wife is freezing cold whereas I'm roasting hot!

[star gazer]

feel like rubbish today, had all doses of Midodrine at max allowance for me, had hydration drinks, tried to keep cool, hydration has worked in that b.p is normal for once but still tachy with extra odd heartbeats thrown in which make me feel like i am on a roundabout, I did think about going to see the g.p but then sense kicked in "what can he actually do about it?" I am so fed up as I know where this is going to end up after four years on midodrine they will add otreocide to the regime, not keen on jabs but if it works then i suppose it is better than this, although without the midodrine I would be flat out and not be able to even get up. Sometimes I get worried that I blame everything on pots and eds and I might be missing something else, I am not neurotic about my health but sometimes wonder if we always put it down to pots and eds that other things might be causing some of my problems, eg the loss of feeling in my right side that affects everything from the eye down to my toes ( like a dental injection) also when the pressure really biulds up in my head my right nostril pours out clear fluid (last three months) I tip my head forward feel pressure biuld up in my head and behind the eyes and bang a tap has switched on. Another question for the neuro team at nhnn when I go up in August

[ciderpig122]

Have you ever had an air con unit? Not that it will fix it all but it is my life saver x

[Fluffym]

Hi all

I have been searching the website about Compression stockings as Dr M in London told me to get some. However, I am a little unsure how I could wear compression "stockings" with trousers without a suspender belt showing through? With autonomic dysfunction do we have an option to wear say compression socks instead of would these be less effective? I've also thought about compression tights, but with IBS I cant stand anything remotely tight around my waist. If anyone has any experience of this I would be really grateful if hear anyones views.

I get the impression the compression stocking help force the blood back up to the heart so helping to stop the terrible blood pressure drop that some of us get. Does anyone feel that stockings benefits the muscles in the rest of the body with cramps etc?

Am also a little concerned as to whether I will be able to get the damned things on!

Fluffym