Does anyone else have POTS syndrome?

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Does anyone else have POTS syndrome?

Postby bricheno » Wed Aug 03, 2011 4:32 pm

Hi All :)

Just wondering if anyone out there has any knowledge of POTS syndrome?

I was diagnosed with FM on 4 July this year after nearly two years of problems. In addition I've now been taken off the only pills that were working for me (amitrip) as my heart rate is going crazy. The cardiologist wanted me off them to see if it was a medication issue but it hasn't come down any.

The next step is an echocardiagram just to make sure all is working well but he's talking about this POTS syndrome and sending me for a tilt table test - has anyone had it?

My heart rate is between 80 and 90 on waking before I get up but is up to 110 to 130 throughout the day doing various activities - it is constantly above 100 which is very tiring!

Any info I'd be very grateful :)
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Re: Does anyone else have POTS syndrome?

Postby denys » Wed Aug 03, 2011 6:04 pm

Hi sorry I havent heard of POTS syndrome before so I looked it up here's the link http://en.wikipedia.org/wiki/Postural_o ... a_syndrome

Sounds really debillitating so hope you come back negative for it but if not :fingerscrossed: :fingerscrossed: they have you sorted in no time at all :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs:
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Re: Does anyone else have POTS syndrome?

Postby shazq » Thu Aug 04, 2011 6:58 pm

I have never heard of it until i looked at the link Denys put up.
:goodluck1: with the tests, keep us updated. :hugs:
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Re: Does anyone else have POTS syndrome?

Postby bricheno » Fri Aug 05, 2011 7:51 am

Thanks :)

Trying to keep positive but it feels like an endless round of appointments sometimes doesn't it!

Can't believe how that amitrip was working - I thought it was only helping me sleep a bit and nothing more but boy can I feel everything without it!! :( My headaches are so intense again, and the burning pains in my shoulder, arm and thigh muscles are driving me insane. Now that I've had another ECG and it shows it hasn't come down coming off the tablets I'm hoping they can start me on the Duloxetine the rheumy recommended - back to docs Monday so fingers crossed I can get some relief again :fingerscrossed:

Dad lent me his leg pillow that he was given after his heart bypass to see if it would help with my stupid restless legs, it was okay for about an hour then my back started hurting and I needed to turn over - not easy with a solid wedge of cheese pillow taking up half the bed!

Was quite funny really cos my husband said it's like going to bed with an OAP - I had that leg pillow, an ortho pillow for my neck and a soft collar to sleep in - we had quite a laugh :D Don't know what I'd do without him, he keeps me going!

Just one more point - I've been trying this gluten free diet to see if it would help - OMG I've lost just over half a stone already and my belly is now flat as a pancake! Only been doing it a month - willing to try anything to see if it would help.

Thankfully I don't have to give up chocolate [chocolate] yummy :D
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Re: Does anyone else have POTS syndrome?

Postby shazq » Fri Aug 05, 2011 12:50 pm

:goodluck1: with your doc app, hope they give you Duloxetine.

Have you tried a memory foam topper? they are good for achy pains and you get a better nights sleep on them. Or even try putting a duvet under your sheet that can also help, its easier than all the pillows :lol: :lol:
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Re: Does anyone else have POTS syndrome?

Postby bricheno » Tue Aug 16, 2011 11:25 am

Well, managed to get the Duloxetine at last, but it certainly is making me feel sick - hopefully a side effect that won't last much longer. Been on it one week now so keeping everything crossed it starts to work and give me some relief :fingerscrossed:

Got the echocardiagram tomorrow - heart rate still the same, no wonder I'm tired! Clocked it at 131 this morning while I was sat watching the news - mind you, I had just eaten cereal so maybe that sent it up. Guess it shouldn't have sent it up quite that much though :?

Don't get back to the cardiologist until 22 sept (unless the echo shows anything which I doubt) then it'll be that tilt table test in Sheffield. Quite fed up with the endless round of appointments when nothing seems to get me anywhere.

Having quite a bad day - went to a family BBQ at the weekend and still not recovered. Didn't do much but all the travelling and sitting around all day has made me seize up! Just been doing some stretches - gently, like a little old woman! :)

Anyway, think I deserve a coffee break now (milky baby coffee so my heart doesn't protest anymore than it already is!)

Tuesday :grouphug: to you all
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Re: Does anyone else have POTS syndrome?

Postby shazq » Tue Aug 16, 2011 1:00 pm

:goodluck1: with your echocardiagram. :fingerscrossed: the results will be ok. :hugs:
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Re: Does anyone else have POTS syndrome?

Postby bricheno » Fri Jan 27, 2012 11:38 am

Morning all
Well, it's been a super long wait but I finally have a diagnosis - I definitely have POTS syndrome so yet more meds, Evabradine this time. I'll soon rattle!
No wonder I've been so tired, I thought it was just the FM but POTS also wears you out. Saying that, I still can't seem to get a good nights sleep and I'm still yawning constantly... hopefully once my heart rate is reduced I'll start to feel a bit better.
I'm feeling quite positive now :-D - I'm hoping that once my heart is beating normally I'll sleep more, which in turn might help my muscles relax more, which in turn will lessen the burning pains - :fingerscrossed:
Hopefully !!!
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Re: Does anyone else have POTS syndrome?

Postby FluppyPuffy » Fri Jan 27, 2012 2:08 pm

Glad you've finally got a dx bricheno :clap: :clap: :clap:

Hopefully you will find some magic meds that make a difference to you :fingerscrossed: :fingerscrossed:
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Re: Does anyone else have POTS syndrome?

Postby denys » Fri Jan 27, 2012 3:49 pm

Me too, so glad you finally know and :fingerscrossed: you soon start to feel better :wave:
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