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Possible Pots/dysautonomia


Angel_2536
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Hi there

I'm so glad to have found this site as it has already made me feel so much less alone ! I am currently putting on a bit of weight after a huge weight loss (50% of body weight). I'm underweight and aiming to get a normal BMI. Since my weight loss my physical health has declined greatly and I've been getting some very strange symptoms. Many of these I've had all my life but I think since I'm undeweight they are all affecting me a lot more.

I have what I believe are many of the POTS/dysautonomia symptoms -

inability to stand for more than a minute or so - crushing chest tightness, light headed, syncope and presyncope

lots of blood pooling - hands and feet when standing

translucent hands/fingers - if i hold them away from my body I can literally see blood draining from them - coldness

extremely intolerant to cold - can't function at all if cold

loss of facial sweating

no appetite

extremely light and noise sensitive

postural hypotension

general low blood pressure

heart rate usually low 50's rises to 115 plus standing

constant fatigue

constant brain fog

stuttering/word finding difficulties

burning sensation in legs

heat intolerance - become stuttery/leg weakness

supermarkets&shops - huge trigger, presyncope, tingling head, complete brain fog/confusion

Loss of shivering

very dry eyes

constant thirst

excessive urination

IBS symptoms/constipation

tingling toes and fingers

some syncopal episodes (standing/one sitting at desk with outstretched arms)

I've noticed that some things make my symptoms a lot worse - caffiene was definitely a trigger for the low blood pressure lightheadedness and this has eased since cutting it out completely. I try to stay well hydrated etc.

Initially I thought a lot of the symptoms were related to the weight loss but even after eating normally for four months and putting on some weight they are all still there, some have worsened. I'm waiting on results of a 24 hour ecg/blood pressure monitor and had a brain ct scan the other day. Routine blood tests have all come back normal.

I'm not sure how best to pursue it with my GP, I already feel like a hypochondriac presenting with all of these strange symptoms. My quality of life is so poor at the moment and I'm off work which is so frustrating. Are there tests that I should ask my GP to refer me for (tilt test?)? I've not mentioned pots/dysautonomia to them yet...not sure how best to approach it....

Is there anyone on the forum that could recommend a private specialist in the west of Scotland who might be able to help with a diagnosis? I don't think I could handle any more "it's just anxiety" diagnosis.

Any advice would be hugely appreciated

Pam

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There are a list of doctors on the dinet.org website. Some are located in the UK. I don't know how far that is from you or if you are able to travel but you might want to take a look at the list of doctors.

Also, you can search throughout the forum for the word "Scotland" and see which other forum members are from Scotland. They might be able to give you some ideas.

Good luck!!

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Hi Pam, welcome at DINET! Although I'm sorry you have reason to be here I'm glad you found us! Have you checked out our physician's list? There are dysautonomia doctors from all over the world mentioned there. Not sure if there's one in Scotland though. Hope you'll find the information and answers you need here, do feel free to ask everything you need to know!

Take care,

Corina

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Welcome Pam! I am sorry to see you here, but also glad to see you found the right place to voice your concerns. I did not even search for doctors as I found this site and just KNEW I had pots. I called my GP And did not ask, but told them to refer me for a tilt-table test. He referred me to a cardiologist he trusted and on the first visit I told him I was 99.9% sure I had POTS. He looked me over and said that I may very well be right and we scheduled the TTT Test and after that, I was automatically diagnosed. You have to be stern, and if you keep running into ignorant doctors that blame anxiety, just move on to the next one. Don't say you assume, but tell them your are highly suspicious of this specific condition. Demand a TTT is what I would highly consider. Best of luck to you and hope to hear your results soon!

-CC

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hi Pam -

I agree, this site is a godsend!

I read your symptoms and so many of them are SO similar to mine. Just wanted to add -- I was finally referred for a TTT by my GP (I'm American but live in England) and was stunned when I finally got the results - they said it was normal, even tho my starting BP (lying down) was something like 78/49. (The clinicians thought they couldn't do the test b/c BP was so low, but the consultant said to proceed.) I was told that the result was "normal" because my heart rate did not increase sufficiently for a POTS diagnosis, and that was the end of it. I was so disappointed - not that I want POTS! - but I thought I was finally going to get some answers to my problems.

However, I had a subsequent TTT about a year later (this one was at Johns Hopkins) during which they administered a synthetic form of adrenaline. Although the diagnosis for POTS was again negative, during the adrenaline part of the test my HR and BP just plummeted (something like 62/40), so I was diagnosed with something called neurally mediated hypotension or neurally mediated syncope. It's another form of dysautonomia, and there's info on it on the home page of this forum.

Just wanted to say this in case you have a TTT and get "normal" results - there are other forms of dysautonomia that they may be missing.

I hope that's helpful. Good luck with finding a diagnosis - keep us posted.

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Hi,

Glad you have found the site. Like you I discovered i had pots 5 minutes after arriving home from hospital - i was discharged after being told i had to accept it was psychological.

I am in the north of England and although my GP had not heard of POTS the local hospital had experience so i got the diagnosis. However they obviously do not deal with as many people as London and some of their understanding of the condition seemed limited and so i am awaiting an appointment in London with Prof Mathais for symptom management and medication. (as a second opinion)

I suppose it depends how debilitating it is for you. At first i was prepared to wait and see and i initially got a bit better but then became worse.

The break through for me was getting Fludrocortisone after i had been ill for a year - why it took so long i don't know but you do need a doctor who can start to go through different medications to find what works.

Best of luck. You can pm me if you want any more uk type info.

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