andybonse

Hey,

So since I was feeling a lot better lately, compared to how I was, I started trying a few drinks again.

2 times I actually got drunk, didn't realize not drinking for 2 years means a few beers = drunk haha!

Weirdly, my symptoms vanished, I could breath, and walk stand up for ages etc even though I was tachycardia I walked home with my gf :/

Hello,

I got my brain MRI results back, no chiari or anything to be found apart from a tiny cyst on the left of my pituitary gland .

Got the MRI on disc too looks pretty good ha.

Hey all,

Lately, I've been doing a lot more exercise, my main symptoms are air hunger and shortness of breath, weird light headed feeling and tachycardia(only when hot or after large meal).

My air hunger / SOB, was terrible so intense lots of skipped beats etc, since starting exercise 2 months ago and lowering my florinef to 1/2.5 of a pill per day it has significantly improved from what is was, and its amazing, however its still uncomfortable.

I have been able to start driving, going up to my friends house and girlfriends! I went to her birthday party at her house round the corner, I was stood up 9 hours feeling fine, sitting down inbetween but not because I needed to!!!

So infact I have improved, but no where near a livable life.

We went to the pub for an hour and played snooker! Then I started feeling light headed / not here and we went, but the tachycardia has not been an issue, my hr has been like 70-90 stood up.

I just wonder what to do next,

I have an offer from the doctor to try octreotide,

I just need like a little boost and id probably have a moe livable life.

I was thinking, over the past years I became inactive, while having pots, I think my body may of made a lot more red blood cells to cope but since inactive they dropped maybe.

Just cant bare the shortness of breath I get, especially at rest.

worst and main symptom, I found exercise and doing more has really really helped it and also lowering florinef.

If it was heart failure exercise would make it worse, but I get the same thing but upright also :/ horrible.

Like a quick pause thus nothing terrible. Worse when I get em at rest but then the heart has a longer filling time so bigger thud!

Hey guys,

Sometimes when I exercise and HR is 120+ and I take a deep breath, I get a PVC at the highest part of the inhale.

Anyone else? I even caught them on my ECG monitor, its annoying lol!!

I'm on week 2 of exercise now and can notice improvements which is good.

Hoping after 6 months a big difference, we will see!

I also want to buy some dumbells and a bench to build muscle overall.

Hello,

If exercise has helped you, can you please answer;

1) how much, how often, what type

2) What symptoms has it helped and by how much?

3) How long did it take to notice a difference

I have started up again doing 30 mins every day to every other day depending how I am feeling, I get my HR up to 140-150 and maintain and then for a few seconds i'll push it up to 180 and down etc.

I noticed I am feeling a little better with my shortness of breath so far, hoping it is the exercise as I continue it may improve etc.

I noticed I do sweat from my head which is cool haha.

@goschi, a beta blocker slows the heart down when infact the heart is up to keep blood going to the brain, so slowing it doesnt fix anything, in reality could make it worse.

Yeah my oxygen is always 95-99 tried it on my toes too and ear hahah .

Hmm I wonder why I feel lightheaded when it happens too? To be honest im always light headed now *****

Hi,

I have posted before but wanted to do another as this is my worst symptom;

At rest, I will generally get a air hunger feeling and feel light-headed. It's weird as when I start exerting myself it doesnt get worse.

I am not over breathing since I slow it down and hold breath etc to reintroduce co2.

Eating makes it come on quite strong sometimes too.

Heart has been checked out as perfect, lungs no issues with constriction etc. Not anaemic, thyroid was fine last December. full blood count perfect.

When this is happening hr can be normal 50-70 and bp normal 120/60-70ish.

Cant work it out, but its debilitating!!

Would less oxygen to the brain cause air hunger?

Actually since upping my potassium supplement to 6 x 12meq tablets per day its now 4.0 .

So,

My potassium was 3 the other week, depsite being on 50meq supplements on .1mg florinef.

I decided to try come off it by a quarter of a pill, its day 3 I feel lightheaded and nauseas. So maybe I do need the full dose!

Argh! Potassium isnt always 3 its usually 3.5 on .1mg, but my diet has been bad so maybe I need to increase diet potassium and should be ok!

I get this all the time, just get up then sit down a bit like pressure goes in the head like forceful blood, its normal in us because our body vasoconstricts where it can to force blood up in an unnormal way and then we sit down it has to release the pressure, ugh why cant we be normal lol.

I sometimes get a pressure in my chest too.

my angiotensin ii was very low lol

I always get these thumps and weird slower beats, its like a vasovagal response to position and blood pressure etc.

Horrible feeling, probably harmless but see a doctor! I get PVC's now and again and get PACS annoying but harmless in me as so say cardiologists!

Hi guys!

Just been speaking with my autonomic neuro and because I feel bad in my head with normal HR and BP, we both agree there is probably over constriction going on in the brain and central system.

Which would also be why Midodrine makes me worse.

Next step, we are going to try Octreotide! A bit nervous but hey never know if I dont try!

I have EDS hypermobility, not really that bendy and no real signs either. No pain no problems with joints etc, but got the POTS I do I do I do, unfortunately :/

Hello,

I have uploaded a spreadsheet of my blood pressures and HR here: http://www.sendspace.com/file/p3vr4w

Was just wondering if these are similar to anyone elses?

Hi,

Literally my life has changed dramatically over a year since my dysautonomia got worse.

I am now switching between laying down, sitting all day in my room on my PC/TV etc.

I literally feel terrible all the time, some nights ill feel a bit better. Blood pressure is like 115/51 sometimes laid down in the morning and throughout the day gets a bit more OK, but its usually 120/60-66 so my diastolic seems to be the issue,

I've tried Midodrine, made me feel worse.

On florinef .1mg, cant go higher as 40meq potassium is keeping it at 3.6

Dont want to try Mestinon since resting hr can be 50 and mestinon can lower it

beta blockers, no need HR doesnt go very high and not the main issue, plus low diastolic bp

exercising 25mins every other day

There has to be a way to feel better and be able to do more, has anyone been in this situation and it changed?

I have EDS hypermoblilty, but am not really that bendy and no joint pain it really doesnt effect me im fortunate, but its the rubbish dysautonomia that came with it.

I just cant see a way through this now, im 22 is this my life, I dont see the point :/

Spoke to my doctor last week asked me to retry midodrine, I did and same result so need to pay again to speak to him.

I have a new girlfriend for over a month now, she understands and just likes being with me not bothered about going out doing stuff, but still I want to be able to with her and have a family etc, pretty much ruined it all!!!!

On day 3 so far today did 25mins biking my max hr during session was 170-180 then let it go back to 140. It really helps my shortness of breath feeling like an instant relief for a day and feel more here.

Hoping long term improvements are to come even 20% improvement in symptoms ill be happy every little helps eh?

Sue the aim is not to fix it but to improve symptoms, so rather than feeling as terrible maybe feel 20% better or something etc!

If we dont and just lay about we actually get worse as more blood pools due to lack of muscle.

Hello,

Has anyones symptoms improved at all with exercise?

What type of exercise?

How often?

Thanks.

Yeah,

I am on .1mg florinef but not enough, but my potassium keeps hovering around 3.5 so cant go up yet!