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(43 Posts)
absentmindeddooooodles Thu 26-Sep-13 17:28:27

I have just been diagnosed with POTS syndrome. I have been going to the doctors for 4 years now about these symptoms and been admitted to hospital 4 times....and they have just diagnosed me.
Just wondering if anyone else has any experience of this? How to you cope and manage the symptoms day to day?
Am really suffering with this.
Any help would be greatly appreciated.

fuzzpig Thu 26-Sep-13 20:28:19

Hello, I have POTS, it was diagnosed at the same time as CFS/ME.

I am still struggling with this as I have not seen a specialist for it. But a few things that help:

Increasing salt intake (was very low salt before)

Increasing water intake (this and salt intake will increase blood volume)

Take a long time getting out of bed, if I do it too fast I get dizzy. In particular I now drink water before I get up.

Avoid situations that involve a lot of standing. Eg at work I now have a chair for certain tasks where my colleagues have to stand.

Watch out for hyperventilating - this often happens if I stand up too fast and particularly if I go up stairs. I have to hold my breath for a while and then really concentrating on breathing slowly.

Apparently it helps to raise the head end of the bed. I am planning on getting some cot raisers to do this.

absentmindeddooooodles Thu 26-Sep-13 21:11:05

Wow thankyou. Ive been reading up tonight and going to see a consultant tomorrow so hopefully will know a bit more about it then.

I also find that if I get out of bed too fast im dizzy for a long time. Will definatley put those tips into action.

Do you find that you have alot of anxiety with it? I have the most hideous fear of sickness, so that does not help. But ss soon as I get the fsmiliar hot or fuzzy feeling my heartrate goes into overdrive and I do tend to hyper ventilate. I find it so hard as I have to run around after my lovely tornado of a 2 year old, and any type of excersise has me floored.

Its that horrid pressure in the head ears and eyes that gets me. Everytime I go up or down a hill in the csr it feels like my head will implode. I have no idea how to combat it but my god its getting me down.

I know that you are having to deal with a hell of alot more than me, im really sorry to hear that, so please dont think im just winging. Just having a diagnosis is a little scary at first when its all a bit unknown.

DD2 has this, currently her worst symptom is fatigue (she's 15 and fell asleep at 8pm tonight sad).
Lots of salt, lots of water, constantly fidget, pump your feet up and down, jiggle about when standing, plan your bending down (timing, position - is it safe if I faint).
Brain fog is horrid - write notes, lists, and be kind to yourself about forgetting everything
Do you faint? Or just feel dizzy? Squat down if you feel faint, or lie on your back with your legs in the air (your body is letting blood pool in your feet and legs rather than it circulating, which is why the heart races, to get the blood moving, if you can get the blood away from the extremities, things are easier)
Exercise -dd is supposed to do 30 minutes of " hot and sweaty" upright exercise every day (doesn't happen always, but it's the target).
We're currently experimenting with a low GI diet, probably going to do more low carb, which seems to help a bit (tho possibly it's just cutting out the rubbish wink)
Look at STARS and POTS UK (on phone so links are tricky) for more info (STARS has a patient day on 20th October with one of the top US experts on PoTS speaking), also google dysautonomia which is what it's called in the states.
There is medication which can help, fludrocortisone increases blood volume, Midodrine tightens up the veins, betablockers regulate the heart rate, Ivabradine does similar without affecting blood pressure. People are on different combinations and doseages as everyone is different , dd takes fludrocortisone and is experimenting with amounts and timings of Midodrine, betablockers worked brilliantly, but her hair was falling out, so we ditched those wink
Are you seeing a specialist? There are more specialists for adults around, and thankfully a couple of paediatricians are appearing.

Sorry for the length of that, I was brain dumping a bit!

gaggiagirl Thu 26-Sep-13 21:45:47

Hi, I have a similar condition and the posters on this thread have been on a thread I started a few weeks ago and gave me some great advice as they have to you.
I just wanted to drop in and offer my support.
I've had a bad few days in what feels like permanent pre syncope, its horrid. I'm holding your hand through it flowers.

absentmindeddooooodles Thu 26-Sep-13 21:48:00

Thankyou so much for that!
I only got my diagnosis today, bit have had the headaches, anxiety amd blood pressure problems feoma young age. Since I had my ds 22.6 years ago it has become much much worse.
The main things I suffer with are the visual disturrbamces linked to dizziness, feeling faint and low blood pressure. I thought I may have some kind of anxiety disorder but docs say this can be an effect of the pots.
Theres no specialist around here, but one of the xonsultants feom the hospital are coming tomorrow to go through things a bit more.
The thing that worried me was the fact that it can get worse. They used the word degenerative which got alarm bells ringing.
We have not discussed medication as of yet...this will happen tomorrow, although they have started to suggest a combination of anti depressants ( to help with the anxiety it is bringing on, not depression)
Beta blockers and something else that I cannot for the life of ke remwmber the name of.
Fatigue is manifesting itself in not actual tierdness, but just very low energy and nit being able to do any excersise.
Id never evwn heard of this before today. I just feel lile stamping my foot and having a bit of a paddy about the fact that im feeling so crappy.
I really feel for your dd having to go through it at such a young age. Hopefully the medications will work for her. X

absentmindeddooooodles Thu 26-Sep-13 21:49:01

Gaggia thankyou. Handholding is much appreciated right now. Especially over the fact rhat I may have to give up pasta and wine....noooooooo sad

I have PoTS too. Diagnosed after a tilt table test. Before diagnosis I'd reached the point of not being able to stand still for more than a few minutes.

I'm on ivabradine now. It's brilliant. I still get break though episodes but nowhere near as many. Also lots of salt and water. No caffeine. I can't have some medications as they make me very tachycardic. I am so much better though.

I'd absolutely ask them if you are a candidate for ivabradine.

The other meds that can help are beta blockers (I can't take them cos of raynauds) and the SSRI anti depressants which help (something to do with regulating the autonomic nervous system I think)

Have you seen PoTs UK?

absentmindeddooooodles Thu 26-Sep-13 21:59:19

Fab thankyou kitten. Ill ask them about it tomorrow. Would love tonfeel a little bit normal again instead of constantly having to lie down. Taking my ds to the park would be a whole new experience for us both!!
Ill habe a look at tjat link now. So mich new information in one day. Ive been reading for hours and its really helping.

absentmindeddooooodles Thu 26-Sep-13 21:59:52

Sorry to hear youve had a hard time with it too. Bloody miserable.

It really was miserable but getting on to the right regime changed my life. I hope you can find the right regime for you.

Oh, and once I got settled I found I could drink again, just don't get dehydrated.

absentmindeddooooodles Thu 26-Sep-13 22:19:18

Best news ive had all day now I sound like an alcoholic I promise im not just like one good glass of red smile and thankyou again.

likestoski Fri 27-Sep-13 07:26:15

I was also diagnosed with this today. I am waiting for a tilt table test to confirm but the consultant was sure this is what I have. They advised me to increase my fluid and salt intake. So is that an extra bottle of red wine and a packet of peanuts then??? Seriously, I have been reading as much as I can about it and will start to change my diet. It's a bit overwhelming at the moment tbh.

absentmindeddooooodles Fri 27-Sep-13 08:12:03

It really ia isnt it. Theres so much to think about. They dont have the equipment for a tilt table test here right now so I will have to travel quite a bit for itm seeing the consultant today anyway so will get a bit more info.
Wine and salami was my plan smile

Other good salty things are marmite and that Marigold Swiss Bouillon as a hot drink.

People look at me shock and hmm when I eat out and they see the amount of salt I put on my food but I do notice if I let my salt intake drift down too far.

absentmindeddooooodles Fri 27-Sep-13 12:46:54

Thanks kitten I shall be getting some of that in then!

Got my appointment at 3 so will see what meds etc I can be offered :/

Allfurcoatandnoknickers Fri 27-Sep-13 12:51:24

Hope you get on ok. I was diagnosed earlier this year at age 47, following a tilt table test. I started in puberty, and mine seems worse now I'm in the good old menopause. I've upped my salt and fluids and been given Midrodine which seems to help me. My triggers are standing for any length of time, tiredness, hormonal changes and eating large meals!
Please let us know how your appointment goes x

Cantsleep Fri 27-Sep-13 12:51:37

My dd1 has this and she really struggles with it.

Her consultant suggested drinking more fluids, more salt in diet and doing leg exercises before standing but it has not worked and she is very, very unhappy about it. Pretty much every day is a struggle. She also has other health problems, has dislocated her shoulder twice this week and is becoming increasingly unhappy and frustrated that she always feels so ill.

Allfurcoatandnoknickers Fri 27-Sep-13 12:56:21

Is she hypermobile too? Pots and hypermobility are linked.

Cantsleep Fri 27-Sep-13 13:06:02

Yes, her other conditions are eds hyper mobility type, scoliosis and pectus excavatum (a chest problem). She's miserable and getting more fed up day by day. She's 11.

Sorry, don't want to hijack thread. Op I hope you get some help and the correct medication.

Which can then, with other symptoms too lead to a diagnosis of ehlers-danlos.


absentmindeddooooodles Fri 27-Sep-13 13:30:38

Cantsleep....your poor dd. That sounds miserable!!

Just to pick up on a point useless I know but what exacrly is hypermobility?

Cantsleep Fri 27-Sep-13 15:42:32

All her joints are very 'bendy' and dislocate easily, things like her elbows and knees look as if they are going the wrong way as the joints are so hyper mobile. It just means the joints have more movement than 'normal'.

absentmindeddooooodles Fri 27-Sep-13 16:10:23

Ah ok. My hips and shoulders dislocate alot. I was always told it was because I was tall and grew fast!!!!!

Just been back to see the consultant. He has confirmed
That I is pots and is trying to find an availible specialist to refer me to.

Apparantley the difference in my heart rate from sitting to standing was quite alot 48 bpm more when I was standing. And blood pressure very low.

Theyve done all the usial checks with weight and iron levels and I have a medication appointment tomorrow where it looks like thwy will be prescribing beta bloblockers, some type of anti depressants to combat the anxiety side thats being bought on, aswell as some other drug with a name that I cant even rwmwmber let alone try to spell smile

Im glad theyve taken it seriously this time. Was beginning to think I was going a little crazy with all these random symptoms!!

absentmindeddooooodles Fri 27-Sep-13 16:11:44

So sorry about all manner of mistakes and typos. On phone and wrestling with a 2 yo.

Absentminded - have a look at hypermobility and EDS. You might find things start to make sense.

absentmindeddooooodles Fri 27-Sep-13 16:31:58

Yeah think I will do. Will sit down and have a read up tonight when my tornado of a ds decides to go to bed. smile

gaggiagirl Fri 27-Sep-13 23:22:01

absent you are pretty lucky (though it isn't lucky) to get a diagnosis. Pots is apparently difficult to diagnose.
I'm interested to know how much the diet changes improve the condition. I still haven't cut any foods out blush

absentmindeddooooodles Sat 28-Sep-13 07:12:40

Its taken bloody uears but they said there was no mistaking the change in heart rate when combined withall the other symptoms.
Only one of the doctors ive been dealing with has ever even heard of it!!! But i do appreciate that im lucky in this respect.
Ive started with the higher salt and water intake......I dont think I can cope with cutting right down on white flour!! I live on pasta sad

gaggiagirl Sat 28-Sep-13 08:02:49

I live on pasta too I have no desire to try gluten free pasta, do you think wholemeal/brown pasta would be ok?

absentmindeddooooodles Sat 28-Sep-13 10:19:27

Ooooh maybe! I hope so! Gluten free pasta is just not the same. Tastes like cardboard imo. sad

likestoski Sat 28-Sep-13 14:32:56

Got my tilt table appointment for Tuesday 1st October, not looking forward to it tbh but will 100% confirm. Other alternative was to have a heart rate monitor put inside me for 2-3 years!!! Have eaten a packet of crips today for the first time in years and had extra salt on my meal last night, but it was way too salty!!!

you need to build your salt tolerance up gradually, but you cam get there - DDs food is now inedible to anyone else

Likes, don't be upping your salt just before your test! Get your diagnosis first.

It wasn't pleasant but it wasn't horrible when I had mine. The cardiologist was lovely and explained what was going on on in my graph and could correlate it with my symptoms. He could give me diagnosis almost as soon as I was tilted. They might give you a shot of something part way through to make your heart go even faster.

I eat normal pasta. I didn't know I shouldn't.

likestoski Sat 28-Sep-13 16:42:48

Oh, consultant last Thursday told me to up my salt intake and fluids. Makes it harder for me as I am a recovering anorexic so foods like crisps, cheese, we're not on my good list. I am having to completely change the way I eat. Take today for example, I was busy preparing dinner for tonight when I came over all faint, could feel my heart going etc etc so for the first time ever, I had something extra to eat!!! Can't say I am feeling 100% yet but definitely better than if I had just left it!
Has anyone else been told not to exercise??

It's just that it might mess with the results of the tilt table test if you are fully loaded with salt and fluid.

I was told that exercise is really important! But I can't do anything aerobic as I go very faint even with the ivabradine. I'm trying to increase my tolerance. Supposed to be seeing my cardio (overdue so I need to call and ask what happened to the appt) so I want to ask him about that.

likestoski Sat 28-Sep-13 18:52:10

Ok, thanks.
I was told I could exercise, swimming, walking and static bike were recommended, but told that I must have someone with me!!!

mummax Mon 02-Dec-13 13:55:29

Hi there
My 13 year old DS was diagnosed with POTs after a Tilt table test at the Royal Brompton back in July. He has been suffering from every symptom related to POTs since March. The poor think could not attend school between April and July because of the constant collapsing, chest pains, dizziness and severe stomach pains and the amount of times he was admitted into hospital
He returned to school on a part time basis in September. We then increased his attendance after half term. We now find that although we follow the salt a fluid intake routine, he still struggles every morning and can't make it into school until 10.30am.
When at school he suffers from stomach pains and difficulties consentrating.
Some days I feel so depressed when I see him having a very bad day. Not being able to help can really get you down.

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