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PoTS syndrome.....help?!

(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.

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.

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!!!

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.

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

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??

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.

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

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!!!

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

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 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 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 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

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

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.

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!!

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 13:30:38

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

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

X-post!!

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

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.

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

Is she hypermobile too? Pots and hypermobility are linked.

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 12:51:24

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

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 :/

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