Talk to me about postural hypotension.

[gaggiagirl]

I've had PH for over 2 years,since having DD.

In the past month its become a lot worse. I feel as if I'm barely here, I have no energy and getting out of breath. I feel weak the pre syncope is happening all the bloody time.
I don't want to leave the house much I feel really really sad about it.

I went to the GP last week about it she was lovely but just told me to drink more,eat more and perhaps wear support tights. She sent me for an ecg which was fine and did bloods which I presume were fine.

How can I get better?

Hi there, I suffer from this as well and has been worse since having DS 6.5 yrs ago.
Things you could try would be to include more salt in your diet, drink more water and wear support tights.
Have you googled POTS?
Are you on any meds that may be making things worse?

I've googled pots I have a lot of the symptoms but I hear its very hard to diagnose.

I'm not taking any medication at all.

Do you ever have zero energy days?

most days are zero energy days to be honest. never really sure why. do you ever actually pass out? if so then I think you should be asking for a referral. have you done the sit down stand up test checking the change in your pulse rate?

No I have never passed out,just been very close to it.

I haven't checked the pulse thing I'll give that a go.

I'm sorry you have so many zero energy days that sounds bloody awful. I know its not a major illness or anything but it really gets you down

Has anything you have tried made a big difference?

nothing really. Just feel worn out every day weather I sleep or not.
Addressing my vit D deficiency at the moment but has made no difference.
Do you get it every time you stand up?

Yeah, every bloody time I stand up! Its torture!

the gp said its really common but colds are common and you can still get medication for them, so why can't we have something? It doesn't seem fair.

I've had a referral for pots from my GP to a pots specialist nurse. I had a 24 hour bp monitor, ECG, 24 ECG and echocardiogram. The final test was a tilt table test which was the final test. I lasted 8 minutes before passing out and having a big drop in bp. I'm now on midrodine for low bp. I take it every four hours three times a day. It's helped me manage my symptoms but I still get presyncope.
If you want to pm me i could give you more details of the specialist nurse I saw. There is also a helpful site called "Stars".

Thank you. I don't think I'll get a referral because my ecg was fine.
Is your pre syncope more manageable now your on meds?
That tilt table test sounds horrid!
I've checked out the stars website its really helpful.

DD2 has POTS (she faints up to 4-5 times a week at the moment which is quite good for her) and finds that if she sticks to her routines religiously then the feeling rubbish isn't too bad. But once she starts feelign bad, then she doesn't want to do what she's supposed to do, and it gets worse .

"Regime" is - two litres of water by lunchtime, as much salt as she can physically tolerate (need to build this up), 30 minutes of upright hot and sweaty exercise every day, regular bedtimes, avoid naps where possible, low GI diet (still working on this, considering low carbing though).

And accepting that some days are a write off . Getting up and making it into school is a minimum, staying till lunchtime is OK, lasting the full day is good, and being able to do something in the evening is brilliant.

Every ecg DDs had has been fine (even the 24 hour one), but because she properly faints, we did eventually get taken seriously despite that.

Have a look at POTS UK for more info - they also have a good section for GPs, as generally most aren't very clued up. Something else to google is dysautonomia (which is what it's known as in the States).

Yes my ECG was fine too, as were all my tests apart from the tilt table test. I'm going through the menopause which has definitely made my symptoms much worse, hopefully once I'm out of that I'll be like a new woman (wishful thinking...)
It is difficult to get taken seriously, I've waited 30 years for a diagnosis! My GP was extremely rude about it despite being taken seriously by a cardiologist. Press your GP for a referral. If you know what's wrong with you it will help you manage your symptoms, and they may be able to give you some medication.

Great advice from everyone thank you so much .
My gp said to go back if the symptoms worsen so I might leave it another few weeks and go back and say they are worse. I know that's cheating but it might be the only way.

Hi gaggia, I have just seen the cardiologist, who has given me some strategies for managing postural hypotension/POTS whilst I wait for further tests. He suggested, tensing my bum muscles whilst standing, pumping my feet up and down,( like using an old fashioned peddle sewing machine) using my calf muscles when sitting, and using abdominal breathing with both. He said the muscles needed to build up with use before this would be really effective. I also have to continue with drinking lots of water, and increase salt intake ( obviously this advice is for me and those with known hypotension). He did say that medication was only used if these methods were not enough to control the symptoms. I also do a floor based pilates class, as standing is tricky! I have heard raising the head of the bed ( with a brick under the top legs) can help- but cannot do that with our bed.
It has taken 4+ years to see a cardiologist who actually knows about POTS, so I would think you need to ask the GP to refer you to a cardiologist with knowledge of autonomic malfunction/ orthostatic hypotension/ POTS. Good luck with getting better function!

oh yes, I forgot about raising the head of the bed - we use <a class="break-all" href="http://www.google.co.uk/imgres?imgurl=www.safetots.co.uk/blog/wp-content/uploads/2010/03/spacebabies-baby-bed-blocks-293x300.jpg&imgrefurl=www.safetots.co.uk/blog.php/travelling-baby-toddler/baby-travel-cot-buyers-guide/&h=300&w=293&sz=18&tbnid=v2gEhkeF2WQkDM:&tbnh=94&tbnw=92&zoom=1&usg=__UbnDCmI162ZBIeqHHz8RrPQsp0A=&docid=kgGhhMT4AtP0rM&sa=X&ei=lU0nUvfQB6XH0QXvpIGQDQ&ved=0CIABEPUBMAQ&dur=416" rel="nofollow" target="_blank">these (two sets) so DDs bed looks quite funny!

It really does make a difference - if she sleeps on a flat bed now, she dreams that she's falling backwards , but her symptoms are definitely worse when not raised at night.

Lots of great tips here. Floor pilates sounds great, when I shred and get up from the floor exercises its the worst feeling it takes ages to recover.
Is PH more or less the same condition as POTS then?

As I understand it they are related conditions but not quite the same. In PH BP falls (due to the effects of gravity on the blood) when upright instead of raising to cope with the head up position, whilst in POTS tachycardia occurs in the head up position for similar reasons. Both are due to dodgy positional autoregulation, and can occur together. I am a bit confused as to the differences myself - probably I have both anyway.
The advice I was given by the cardiologist was for PH, but he talked about POTS at the same time.

Thank you everyone.

I feel a lot better knowing I'm not alone in this. I was feeling pretty hopeless last week. Feeling much more positive now.

Hi, I have POTS. Was diagnosed at the same time as CFS/ME by a CFS specialist last year. In some ways the pots is the harder thing to deal with as the dizziness can be horrendous, I've collapsed a couple of times recently - not losing consciousnness thankfully, but just suddenly got an epic wave of dizziness and my legs just failed completely.

I have 'reasonable adjustments' at work which mean I don't have to stand up, I have a chair at the customer service point when my colleagues have to stand.

A key thing for me that I've only recently accepted is that on my days off - when normally I would do as little as possible due to the pain/fatigue caused by the CFS - I MUST do some upright activity.

I still need to think about propping the bed up and I'm hoping to get referred to a cardiologist at some point.

I take AGES to get out of bed because the change is horrific for me. Thankfully I don't need to rush as I only start work at 10 and DH does all the school run stuff. I have to gradually sit up and acclimatise myself before I even attempt to get out of bed. A real challenge if I wake up needing a wee!

Oh and I did ask Adult Social Care if they could help with propping my bed up (they sent me a perching stool which I can use in the kitchen - cooking is a nightmare) but they said they could only do the whole bed, not just one end

Hey magso - am coming back to the spoons thread, have been AWOL for a while but am returning honest

My ECG (including a 24hr trace) were all clear too BTW. But the CFS specialist dxd me very quickly during my assessment. He also told me off (in a nice way) for hyperventilating or 'overbreathing' which I always do if I stand up too fast or walk up stairs, and this pushes the heart rate up further. Bizarrely, one of the old theories for causes of CFS/ME was 'overbreathing' causing lack of oxygen to the body, or something like that. Anyway - when I stand up, particularly in the night, I have to hold my breath a bit to stop myself hyperventilating.

Sorry about my totally disorganised posts BTW, am in a weird state today

I'm having a barely moving day today too. I must get up and do something.

Your condition sounds awful I think you are amazing to do everything you do.