POTS

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POTS

Postby ..:: lisa ::.. » Tue Jul 08, 2014 1:14 pm

Hi, hope you are all well (or as well as to be expected)

Do any of you have any experience of pots?

If so what were the treatments etc?
—(••÷[ I may ramble at times as my train of thought has crashed. Please be patient and bare with me ]÷••)—
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Re: POTS

Postby FluppyPuffy » Wed Jul 09, 2014 8:58 am

I couldn't recall what POTS related to, so asked good old Dr Googley to have a look thru his Mega Encyclopaedia of Pills, Potions and Pawleynesses. Here's a couple of linkys that might have some of the info you're looking for
Postural Orthostatic Tachycardia Syndrome
PoTs UK
There have been a few mentions of it previously, using the Search box in the top right corner of the page should bring them up if you want to have a looky. There may be some useful bits in those previous mentions that could be of interest/relevance to you.
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Re: POTS

Postby soretro » Wed Jul 16, 2014 11:47 am

Hi there,
I have POTS.
I was definitely diagnosed with it by a neurologist after a tilt table test, even though I knew it was probably what I had just from living with the range of symptoms.
The POTS UK site is a good place to look at, with links to support groups which are being set up.
Also there is an excellent Facebook group called POTS run by Jodi Epstein Rhum - it is a closed group, so you would have to request to join.
https://www.facebook.com/groups/75183049224/

I have had POTS for many years and am still working my way around it.
It is not really known in the medical world and I have noted that medical practitioners tend to panic when they hear about it - I've even been banned from hydrotherapy because the physiotherapists did not want the risk of someone with a condition they did not understand! The irony :-) Ignorance is a big part of dealing with this condition. It definitely helps to educate oneself, rather than rely on the doctors.

Is there anything specific you need info or advice on?
Hope you are having a good day, gentle hugs :-)
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Re: POTS

Postby ..:: lisa ::.. » Wed Jul 16, 2014 2:07 pm

Hi there,

Thanks for your reply

Well I have kind of told my doctor this is what I suspect is going on, among everything else! I have done my own little studies with heart rate on lying down then standing then every min for 10 mins I think it was, I did it over a few days and took the results to my gp who laughed and told me he only has 1 patient on the book with POTS... and gave me some beta blockers.

They help with heart rate a little, got resting heart rate down to high 80s but all other symptoms still persist.

Do you get horrible purple patterns on your legs and feet? Also do your feet swell after standing for short periods?

I was admitted to hospital a couple of months back with breathlessness and chest pain, I asked if because my hr was so high on standing could this be causing the symptoms, they finally checked everything at rest and standing and on seeing 160bpm told me to slow down in everything I do.... really??? I have pain all over, constant dizziness and nausea I couldn't slow down any more if I tried!!!

I've read drinking lots of water, compression tights/socks and extra salt can help?
—(••÷[ I may ramble at times as my train of thought has crashed. Please be patient and bare with me ]÷••)—
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Re: POTS

Postby Moobaloo » Wed Aug 06, 2014 11:31 am

Hi Lisa,

Your GP's attitude STINKS! POTS is really common in fibro & CFS/M.E. patients!! I have been struggling with bouts of extreme dizziness for years, but it was put down to an inner ear problem. Then I was given beta blockers for my anxiety issues, but my dizziness got worse, so I went back to the GP and was taken off the beta blockers because they lower your blood pressure and it was at this point that my GP checked my blood pressure when sitting, then again on standing, and finally referred me to cardiology for further investigation.

I was referred at the start of April & finally got my appointment a couple of weeks ago. I saw a specialist POTS nurse and after asking me loads of questions, taking my blood pressure and checking me for hypermobility, she said she's 99% sure I have it. Have had to do 2 24hr urine tests (yuk!) and I'm having a tilt table test, ECG & a 24hr ECG halter monitor later this month.

Could you see another doctor? At the least, ask your doctor to take your blood pressure while seated, then on standing. I get swollen ankles, the purple mottled skin (I call it corned beef legs!) & have to be really careful if I bend over then stand up quickly - hanging washing out to dry & picking up after my dog are a nightmare!
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Re: POTS

Postby ..:: lisa ::.. » Wed Aug 06, 2014 1:47 pm

Hi, first off I LOVE your profile pic, just how I feel most days :-D

I've been on beta blockers a few months now and they've lowered my resting heart rate to an acceptable level.
But I have a new type of dizziness now, I've been thinking maybe I have a sinus infection or inner ear problem but reading your posts makes me wonder if my blood pressure is too low.

My doctor has never done the double check of bp.

He doesn't even check my bp any more, tells me he will go with what I tell him it is at home!!!

I'm struggling with ANY movement and I just can't get him to understand the impact of not being able to move without feeling like I'm going to keel over.

I'm very doubtful I will ever be referred to a specialist, every time I suggest something that I feel will help me, I get laughed at or told no basically.

I'm seeing him again when he's back off his holiday so will try and push for a referral or at least to be taken seriously!

I'm interested in hyper mobility as I was super flexible before all this.......
—(••÷[ I may ramble at times as my train of thought has crashed. Please be patient and bare with me ]÷••)—
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Re: POTS

Postby TNK* » Wed Aug 06, 2014 5:58 pm

from what i can gleen from the article in the link, POTS is another term used for Mitral valve reflux???
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Re: POTS

Postby Moobaloo » Thu Aug 07, 2014 12:03 pm

Hehe! It was the most fitting pic I could find! ;)

From what you've said, I'd try to see a different doctor. If you're on beta-blockers and having bouts of dizziness, I'd have thought your doc should be keeping an eye on your blood pressure anyway!

Go on the POTS UK page and get as much info on the symptoms as you can. Are you hypermobile to any degree? I think there's some info on hypermobility tests on the POTS UK site. There's a strong link between POTS & hypermobility and the POTS nurse told me that they think a large percentage of people diagnosed with CFS are mis-diagnosed and actually have POTS!

Drinking plenty of water (nurse said 3 litres a day) & adding an extra teaspoon of salt a day into your normal diet can some people, but you really need to have your symptoms investigated first so you can be sure that's the right approach for your individual circumstances.

Oh, and the nurse told me to go gluten free too!! Do you have any gastro/IBS symptoms??
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Re: POTS

Postby ..:: lisa ::.. » Fri Aug 08, 2014 8:23 pm

Hi

TNK* wrote:from what i can gleen from the article in the link, POTS is another term used for Mitral valve reflux???


I'm not sure, I haven't heard that term before.... I have had an ultra sound of my heart and structurally its fine, it just gets carried away when I move haha!

Moobaloo wrote:
Go on the POTS UK page and get as much info on the symptoms as you can. Are you hypermobile to any degree?

Oh, and the nurse told me to go gluten free too!! Do you have any gastro/IBS symptoms??


Yes I am, I found this http://hypermobility.org/help-advice/hy ... ton-score/ I can do all except bend my knees and elbows backwards, my family also considered me double jointed as a child, I was a good gymnast and before I got ill I was a dancer....

I do have IBS symptoms too, I've always had a dodgy bowel, I have either constipation or the runs, very rarely normal, I saw a dr about 17 years ago who told me to eat sunflower seeds with yogurt......

I was only 18 at the time and thought that was a load of crap, so I thought I'd just stop eating what was causing it, I thought I had narrowed it down to milk, it was the only thing I had every single day.

Maybe its all more connected than first thought.....
—(••÷[ I may ramble at times as my train of thought has crashed. Please be patient and bare with me ]÷••)—
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Re: POTS

Postby Moobaloo » Tue Aug 12, 2014 2:00 pm

I think it's very, VERY likely it's all interconnected and I think you need to find a doctor that will listen to you and take you seriously.

It sounds like you may have a fight on your hands where your GP is concerned, but remember you have lots of support on here whenever you need it!! I think your doctor needs to realise that a lot of your symptoms could possibly be managed much better than they currently are if only you had a proper investigation.

Good luck, let us know how you get on x
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Re: POTS

Postby ..:: lisa ::.. » Tue Aug 12, 2014 7:52 pm

I will do and thank you so much for your replies :twodrinking1:
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