Diagnosing Dysautonomia

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Im hoping for some advice , i think i have dysautonomia but my dr keeps implying its stress, even though im not stressed. At my last consultation she said she thinks its my nervous system and said i have orthostatic hypotension aswell as hypertension but doesnt seem to be doing anything , i feel as though im all on my own. Any advice on getting a second opinion? Thanks in advance

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  • Posted

    Hi Danielle, I've been through the exact same thing! They are only now looking into Postural Orthostatic Tachycardia Syndrome with me (possibly the hyperadrenergic kind as I have very high blood pressure too) and I have been fainting since I was 11 (I'm now 21). I think you should have a look at the POTs UK website as that has so much information on dysautonomia, which would help you understand it more (I didn't mention some of my symptoms to my GP as they didn't seem relevant) and they also have a GP section to explain to DRs about POTs as most DRs and nurses haven't heard of it. It also has a link to a list of specialists that you could potentially be referred to, and a list of non-pharmalogical treatments you could try to improve your symptoms (diet, water and salt intake, compression stockings, exercise, etc..) There are very few POTs specialists in the uk as no one knows what causes it and there is no definitive treatment for it yet. They're only looking into it for me now as I have gotten so bad that I often faint when I stand up now, they have said its anxiety for the past 10 years, even though I knew it wasn't!
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    • Posted

      Hi amy, thankyou for getting back to me! Nice to know its not only me i was literally on the verge of giving up and assuming i was never going to get anywhere so like you thought i was just gunna have to put up with it!, im aware there are specialists out there but no idea how to approach them etc. thanks for the website i shall deffo have a look at that. I know what you mean i know im not anxious or stressed when they said that i felt as though they were trying to get rid of me!
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  • Posted

    Hi Danielle, what symptoms do you have that makes you think of dysautonomia? there are many forms of this horrible desease and not many specialists. Are you in the uk or not?

    Lots of people have pots, which is one of the types of dysautonomia, sadly I went through 5 years of tests to finally be diagnosed with a type of dysautonomia that has a very poor prognosis, this is an extremely rare form and only one other person in the uk has the same as me for info, You can search on line, you will find lots of forums mainly from USA.

    You could write a list of your symptoms down and keep a record of anything that affects them and then prepare a list to take to the doctor, but be careful because it is so easy to make the desease fit the symptoms,

    I wish you luck, keep your spirits up for the journey you are embarking on if you do in fact have the desease.

    Andy

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    • Posted

      Hi andy ,

      Thanks for getting back to me , i am indeed from the UK. The symptoms i have been having i wasnt at first aware they could all be related but they are since about the age of 10 i hard reccurant abdominal pain which hospitalised me several times they could never work out what it was causing it and i was diagnosed with abdominal migraines which at the time alot of people hadnt heard of , i would go rigid and clammy with pins and needles in both arms too. I was also diagnosed with chronic constipation. When i was then 16 i collapsed playing football, and was taken to the hospital i was already aware before this i had a fast heart rate , this confirmed it but the cardiologist found no cause and i was discharged. Then a year ago when i was 18 a routine check up showed i had high blood pressure aswell as the hr , again went back to the specialist who ran some tests with no answers , i then started to have black outs id wake up on the floor in random places,nosebleeds , poor appitite , ibs, migraines , excessive thirst, low bp after standing, excersise intolerance were just a few in a long list over the years , when i mentioned them to the specialist i was told it sound like my nervous system but that it was probs just stress and hormones , im not 100% sure they know what it is or have any idea , which leads me to where i am now, still feeling unwell with no answers and no idea what to do now

      Many thanks

      Danielle

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    • Posted

      Hi Danielle

      Which part of the uk are you from? as I said there are many forms of dysautonomia with numerous symptoms and outcomes, a common symptom is fainting after having stood up, I have no idea if I have this because I am permanantly in a wheelchair or my bed and so never stand up. Some of the things you mention could be signs of this and many other problems, there is not a single test that can diagnose dysautonomia because it can show itself in so many different ways, It can affect some people so slightly they never even knew they had it but on the other hand I am severely disabled requiring 24/7 care and have a limited life expectancy. So I think that comparing sympoms will not actually help you, a refferal to a specialist would be helpful if the specialist has experience in this field, I see a Spanish neurologist but I live in Leeds, I know people in London see a private person but he is expensive. Perhaps your Dr could refer you to a cardiologist for a TILT TABLE TEST which could help diagnose POTS which seems to be more common in younger females.

      Again Good luck

      Keep in touch

      Andy

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    • Posted

      Hi , sorry for slow reply! Thankyou so much for getting back to me , I'm from near Norwich . I'm so sorry to hear that i really am can't be nice hence why I appreciate your time. I'm under a cardiologist at the moment but in not finding her very helpful after 5 years she eventually prescribed medication but they've made no difference, I'm now walking around covered in bruises from where I've blacked out, i find my self sitting on the floor sometimes to try avoid passing out. It has definitely got worse it's really starting to get me down. I don't know what to do :s 

      Danielle 

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  • Posted

    I have had dysautonomia for about 32 years now.

    When I was diagnosed it had no name and I was told I had an autonomic disorder and was under the hospital for a number of years.

    It takes a long time to get a dragon use of this condition as with me I was told I was epilepsy and it tock 17 years for me to get that diagnosis.

    Just keep fighting on you get there in the end we

    Are all behind you with the fight just don't give up

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