andybonse

What was your first symptoms?

Would a blood test diagnose this?

Thank you

I see, so its not pots you have?

Hi,

I came across the cardaic AN and was wondering how it differs from POTS,

My blood pressure will be say 107/65 relaxed, then ill sit up and it will go to 124/80 and then when I stand up it will be the same or a little lower or go up and also my HR goes up too.

Is this mainly related to diabetes? I've tried to research but its all diabetes articles.

Just scares me to think if we could get this,

Thanks.

Doess toldh autonomic neuropathy things blood pressure drops when you stand rather than go up.

Also I was told you would have other things like pupils not changing and digestive system issues etc.

Does autonomic neuropathy cause death?

Whato when I stand my blood pressure can go down by 10 go up upto 30 and sometimes not change much at all. The heart rate rises as usual with pots.

Does this blood pressure change point to autonomic neuropathy?

What does yours do?

I see, I wasnt offered testing.

Have you tested for mass cell activation disease/syndrome at all?

How do you know if its Hyperadrenal or not?

My systolic BP usually goes up when I stand up, but then a few minutes later it comes down and then up then down lol.

I am trying my best to feel ok.

I'm scared after reading about Mast cell disease, sometimes my face goes a little red but that can be normal also, I get a red chest when I get hot but thats about it!

I cant really say I have many of them symptoms,

Only that I associate with POTS such as higher hr when standing up.

I guess many people get MCAS without POTS and MCAS is just another unlucky thing to get a long the way .

I'm sure I'd of had hives and rashes and tachycardia when sat down doing nothing if MCAS was my culprit!

Hello,

What are the main symptoms of this?

I have tried to find some things, when they say hot flushing, what is this?

I have always had a red rash on my chest when I get hot like a heat rash?

Every summer I get this, my hands start itching and its like little white lumps and then it turns into red rash on hands and then I start getting dry skin. Weird.

Hello,

Since diagnosed with POTS, I haven't really gotten anywhere apart from being prescribed a beta-blocker, which I am not going to try since I understand blood drops downand the heart beats faster to bring it up, so clearly a beta-blocker would make this worse, without any testing of course to prove this is correct.

My Cardiologist is aware of POTS but not really too knowledgeable in the area, so I am in the UK and trying to find someone who actually can help, seems hard work :/.

My symptoms:

Blood pressure sometimes goes between 90-110 but can go up to 130's when standing or sometimes it doesn't move at all, its really variable.

Heart rate increases, resting HR 58-70 rises to 90-110, usually 90-95 though.

Head feels light when I first stand and feel my heart beat harder and adrenalin in chest

Sometimes my symptoms are non-existant, lucky days.

Heat triggers off symptoms

I have been off of work 7 weeks, no where near thinking of going back, I dont go out as I feel weird and scared of fainting(never fainted before though). It's taken my life over really.

-

How have you changed since POTS? Do you still go out? Do you ever have alcohol? Whats changed?

Have medication made your symptoms bearable and able to function normal and go out more etc?

Just trying to find some answers, its like nobody knows and nobody can help and this is it.

Yeah I dont want to self-medicate really, just seems we know more than the doctors!

Well,

My doctors are useless and dont understand POTS a lot, my blood pressure goes low on sunny days they are like its fine, no but you dont understand! etc..

I was thinking of trying a cough medicine that contains: phenylephrine and see if it helps at all?

Has anyone used phenylephrine? My blood pressure is usually ok, so quite cautious to try Midodrine.

All I want it a mild vasoconstrictor, then if I use my beta blocker with it, hopefully get some sort of positive result.

/discuss

Thanks!

Hi,

The past few days we're of average/coldish temperatures and my heart rate was not hardly going up when I stood and blood pressure was good for these few days. I was like wow, back to normal. No symptoms!

Then, today it was HOT. My heart rate was going up by 30 on standing again, blood pressure was around 101/50-110/80 and sometimes slipping into 90's which never happens, or well since i've started testing my bp might always have done.

So, obviously this is why i've never liked heat . I'm on no meds at the moment, would Fludocoristone help my BP in these situations?

Hello,

I had a lot of stress recently and my POTS was mad, HR high etc feeling dizzy....

Now im back home im calm feeling better and my HR the past few days is not going up much, like i dont even have pots etc.. Does this happen to you? It's asif its gone completely fingers crossed it doesnt flare up.

lol.

I'm in the UK and found a cardio who actually knows about POTS and was amazingly at my hospital. He has given me Bisoprolol 1.25mg to try. I am trying to keep fluids to 3l of powerade and salt. I am going to start exercising slowly. I have it more mild than a lot of people which im thankful for but its still hard, i've lost my job,flat,partner etc. so stress plays a big factor in my opinion.

I think we need doctors to find out our exact variable conditions:

Do we have blood pooling? Yes? Why? - Vessles do not constrict properly in...legs? Midodrine / vasoconstrictor or compression stockings - thats one problem helped hopefully

Heart rate increase - Why? Due to the blood pooling? Yes? Great, we can now use beta blockers combined with Midodrine which should help a lot.

If we focused on each symptom and the cause and get a definitive answer of each one, a medicine tailored plan could be almost perfected with significant improvements in people.

I plan on studying medicine and then cardiology maybe neurovascular science, then specialise into POTS. I can then treat people properly as I'd know what its like to have it and various things to check to tailor a plan.

Would make sense, rather than try this try that, test for blood pooling, vessle, nerves etc and get it right.

Not too sure, I just came across an article and thought id see what people thought.

As many of us assume we have some sort of Neuropathy and cant find a cause of our POTS:

http://www.metanx.com/

This is used for diabetic neuropathy, maybe it could also help for POTS, anyone heard / tried this?

I cant really do much running I get a chest pain like angina, had all sorts of heart tests. Just the POTS :/

Its rubbish, I want to be normal. I used to be out with friends having a drink chatting dancing now im stuck doing nothing.

This is not the most up to date, but you might start by looking here:

http://www.dinet.org/what_helps.htm

It is often a trial and error process to find the best combination for each individual. For me, beta blockers and a low dose SSRI, along with lots of fluids and extra salt helped greatly. Also IV saline at times.

When you walk your leg muscles are helping more with circulation and that may be why you notice a drop in heart rate.

""

*- My doc wants me to try bisoprolol 1.25mg beta blocker, wont this stop the circulation in my legs so blood will drop down if the heart rates not fast enough? scared to try it lol.

I also have some Citalopram SSRI, how does this help you in what way?

I get a terrible rubber band tight feeling on the top of my head when im sat down or stood and diziness with it, its horrendus and again my worst symptom!

Hello,

As my cardiologist isn't specialist in POTS but knows about it and better than any GP i've seen,

My symptoms are:

Heart rate increases when I stand from 60-70 to 95-110, sometimes I will be lucky and it wont rise too much but this is rarer than I'd like, sometimes my resting HR can be 48-60, my BP is usually 101/50-130/80.

When I stand sometimes my BP goes quite high 148', not all the time and sometimes its fine or goes up a little,

I get a horrid tight feeling in my head on the top like a rubber band on it and a headache type feeling. A long with diziness, no idea what it is but powerades seem to get rid of it for a few hours.

I have not been out in 6 weeks due to my symptoms getting worser,

When I walk my heart rate goes down a little, then if I stand still goes back up???

So,

I am interested what meds could benefit me, I know no ones a doctor but what could I speak to my cardio about trying based on the above in your opinons?

I am thinking of trying compression wasit high stockings?

I can get meds, but not sure as i'm very picky about meds im scared of taking new things lol, even over the counter stuff.

I am scared of trying a beta blocker what if the heart goes faster to keep blood up and then beta blocker slows it down and blood doesnt get to the brain??

Hello,

My cardiologist is trying to get me Bisoprolol 1.25mg to try, however I see it is long acting, so if I didnt take well to them, I've got a whole 24 hours waiting for them to deplete out of my system

I need cardioselective beta blockers due to mild asthma, anyone know of any short acting cardioselective beta blockers?

Also, When I stand if my heart rate goes up 30, is this not supplementing my body and thus beta blockers make it worse? How would I tell?