BendyScooby

Well, a big symptom was the fact that I was passing out a few times a week. A lot of it was things the doctors observed, like my feet turning gray when I stood for a period of time, my blood pressure dropping when I stood (which showed on my ttt). Also, being hyperflexible helped convince the dr's that it's what I had, since I guess it's a sign you're more prone to having it. I went to Mayo Clinic for something entirely different and ended up being diagnosed, so I guess to a doctor who knows what he's talking about it was pretty obvious that my symptoms matched POTS. It might help to take some information from the internet with you to your appointment, especially if you can find stuff written by specialists. Another thought, did you have a sweat test? I'm not exactly sure how it works, but I had one when I had my TTT and it showed that I didn't sweat properly in some places, which helps with the diagnosis. I hope you can make sense out of this. I'm feeling kind of brain-foggy!

Meg

Thanks...well I'm off to see doc tmr now not today as my appt was changed. So tired UGH. Know what you mean about foggy. Sometimes I think I'd be quite happy to jus stare out of the window all day. Might see if I can print something off. Will let you know how it goes. Haven't had a sweat test. aybe I'll suggest it. I sweat like **** actually.

Needing the loo brings my symptoms on as does being hungry, being thirsty, being tired, being too hot, having a cold or having a period. Don't know if anyone can relate to that?

I've had that in London *** Prof M and just to warn you...it's not nice. It doesn't hurt as such but it's very, very, very uncomfortable indeed. Also when I had my results they came back unclear so it doesn't always guarentee results. I'm going back to London Tomorrow to see the rheumys to see if I an get furher tests.

Maybe you could ask for another TTT and suggest revisiting the idea that POTS could be the problem? Also, do you know why your test result was negative? Because (I think) your heart rate has to go up 30 beats per minute for a pots diagnosis. Mine only went up 27, but due to my other symptoms, I was given a POTS diagnosis. It might be interesting to see how close your test was to giving you a diagnosis. Just a thought.

Meg

I don't know I guess I'll ask. I know I've got it, I've researched into it for a couple of years now but I've never had a definite diagnosis. One of my rheumys rekoned I probably did have it even though it didn't show up in the tests but I need the official stamp so I can get the care I need. Seeing a new rheumy Thusday now, old one has left...great. So getting nervous. If anyone has any experience of challenging a diagnosis input would be much appreciated. I hav to go a long way to see him and spend a lot of money so I need to make the most of it. Can I ask what your other symptoms were Meg and did they show up on testing? x

Howdy folks

sorry it's been like ages since I popped in and now I'm back I want somhing. It's just that two years ago (just to refresh everyone's menroy) I had a tilt table test and 24 hour blood pressure monitor test for suspected dysautomnia as my rheumy thought I was a walking advert for it but tests came back negative. Even though I fanited on the tilt which I thought was an automtic positive result. I also couldn't actually wear teh BP mnitor as my veins were swollen. My Rheumy was astounded by the results and so was I. Since then nothing's been done about it and I've declined rapidly to the point where I'm almost house bound. I also have Ehlers Danlos Syndrome and mental health probelms which doesn't help. My main POTS like probs are fainting/lightheadnss, dizzyness, anxiety, palpitations, excessive thirst, excessive sweating, foggy head and weight loss. I've been tested for other stuff and all the tests came back normal. My GP agrees I need specialist care and I'm due to see my rhuemy on Wednesday so I would appreciate pointers or advice before I go to ensure I get referred again to the correct people and this time get a diagnosis in order to get the treatment and care I need. I can't go on like this I'm 32 and feel like an old lady.

THANKS!!!!

I have exactly teh same problem...been tested for infections and came back normal. I also bleed though after sex and in between periods. Saw a gaenocologust...just have to wait now to see my GP

Yup...been checked for everything a blood test can check for. Evreything came back normal. AM going back to see my GP in two weeks (first appt I can get) and chat to him about it then. Also when I see Dr Hakim (at the hypermobility clinic in London) I'll tell him to see if thre's anything he can do. he originally refered me to the nuero in London so perhps he can refer me back. No way I can wait a year. I'm twicthing so badly now it's hard to eat anything coz the food goes everywhere! I'm not sure if I'm seeing any specific neurologist locally.

ARGGGGGGGGGGGGGGGGGGHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH

I got my letter yesterday from the hospital and it said I have to wait up to a year to see a nuerologist. I'm fuming as I'm having convulsions and my thirst is worse than ever. Also fainting and getting blurred vision. getting worse and worse. I'll probably be dead in a year! there's no point in me waiting that long at all. Besides...how do I know that when I do finally get to see them they'll not just say there's nothing wrong like the neurologist in London did?

Thanks again guys...Joe I have EDS3. Funny you should menion that coz when I was lying on the table the doc mentioned how slim I was because she couldn't keep the pulse thing on my finger and seemed surprised by it but as I'm Marfanoid and have exremely long and thin fingers as a result she really shouldn't have been. I told my consultant who reffered me about the lack of diagnosis and even he seemed surprised. Maybe the local heurologist will pick something up because the dysautomnia tests were carried out in London.

wow, if your tilt brought on your symptoms and even passing out, i am surprised that they refuted a diagnosis of autonomic dysfunction. what was your pressure? some docs only look at numbers (systolic pressure) and not symptoms. if they cant back up a criteria of a specific condition (such as a 20 point drop in pressure within a minute of being upright, hence the diagnosis of Neurocardiogenic syncope, at least i think that is the "criteria" for such a diagnosis), than sometimes they shy away with diagnosing a person with such a condition. but geez, if you are passing out, there's gotta be something going on! what did you heart rate do with the pressure during tilt table?

Don't know what my heart rate did they didn't say. My blood pressure dropped dramatically though.

Thanks for your help and concern guys. I've had thyroid tests and ECGs. Haven't had an ultrasound on my heart on a few years though. had a full blood count and diabetes tests. yes the tilt table brought on my symptoms including fainting. Have had an EEG too.

They didn't say why they thought I didn't have it. They did a tilt table test, froze my hand, gave me breathing excersises, took my blood pressure and did blood tests. They couldn't do the 24 ambulatory blood pressure test as my veins were too painful.

I was diagnosed last year via a physical exam.

Hi guys,

even though, after my grusome tests in April, they said I didn't have autonomic dysfunction I've ben feeling really ill. I've been fainting, feeling dizzy and sometimes like the room is spinning. I also get a funny feeling in my head and my veins are swelling up big time. I'm also having convulsions, feel irritiable and am constantly tired. The constant thirst is driving me nuts too. I went back to my GP and he's now referring me to a local neurologist.

No I didn't have any of the numbers, results anything. Not that I would haev understood em. Dr Hakim wrote to me telling me that it was normal so I emailed him and he said he thought it was odd and that I should ask them to look into it which I just did so am waiting to hear from them now. It wouldn't bother me too much bt my sypmtoms have been getting worse. And that sezeire (sp?) the other morning was bizzare.

Hi,

they put me on a tilt table while my blood samples (plasma catecholamine) and blood presure were taken. That's when I fainted. I also had some breathing excersises, I had to have my hand frozen and had a 24 hour ambulatory blood pressure and heart rate minitor but I couldn't keep it on as my veins were swelling up so much they hurt. Results came back negative and they didnt suggest what else I might have wrong. Also (I forgot to mention before) the palpitations were coinciding with the twichtes that hapenned the other morning.

Hey guys,

got my results back recently and they say I do not have autonomic dysfunction. So now I basicaly have a lot of unexplained symptoms which is worrying. This morning I also had what can only be described as a seizure. I was twitchling and flaying about madly in bed. My whole body started going into convulsions then my arms started flying about.

I'm sorry you had such a horrible experience with the Dr!!

Seems we all run into lots of bad experiences in dealing with this chronic condition (I know that doesn't make you feel better..just want you to know you aren't alone).

Regroup your energy and focus and stand your ground until you get the help you need.

Would it help if you printed some info from this site or pub med or somewhere else to take in to your Dr?

Hope things improve for you!!

I think that would probably make him hate me even more. He thinks he knows everything. Was very patronising to me. Don't want to go back there. Will wait for test results and then change surgeries. He even said "I don't mind you coming to see me" as if to say "I wish you wouldn't". I've never known anything like it. What a ****.

Just got back form docs...didn't see teh oen I wanted to see I saw the one who was funny with me and he was even worse this time. Gave me a 'ph no not you again' look when I walked in through the door and tried to badger...almost bully me into giving in. I was adamant though and insisted I get more tests done. I told him I'd spoken to Docor Hakim and he said it was unprofessional of him to tell me what he told me...what a ****. dr H cares that's why he suggested I ask for more tests. He then had the audacity to contradict Dr H's diagnosis of EDS. Dr ****wit the GP. There's Dr ****wit there, Dr ****head and Dr****hole. I don't even know what tests he's ordered. Forgot to talk about teh weight loss too!

I need hugs!

Hi there,

Welcome and goodluck.....

I have those same symptoms; everyone of them Of course I have more because I have migraines too, but your not alone. As you can tell!!

I have not been dx yet but they have ruled out being diabetic and the thyroid. I'm still looking for a good POTS doctor in my area. My Cardio doesn't specialize in this, although he is a great doctor, but doesn't know what else to do for me, so I hope to find someone who does.

Wishing you the best,

Amber

I'm really not having a good time of it now and am feeling really down today so I'm going ot have a good moan. The irritability is really bad and bugging the **** out of me. It all started last night at about 10 pm when I started shaking, getting palpitations and sweating and my veins started swelling up again and getting really painful. When that happens the only thing to ease it is to go to be but I couldn't sleep ebcause I was thirsty and irribanle. Am really ****ed off today. That ****ing doctor.

Thanks for the welcome guys...Pers I live in Cwmbran and Becky...good on your doc for looking up POTS. I wonder if the docs come on here and see us slagging them off lol

I doubt very much that my GP knows about the link between Marfans/EDS and POTS. If the silly little man doesn't think there can be a reason for my symptoms other than diabetes and thyroid I doubt he'll know about POTS. I've not been with this surgery long...only since Jan but I've never even had my Marfs/EDS mentioned. Like I said I don't think they even know I'm seeing these specialists.

I live in south Wales Becky and Persephone...sorry to sound dull but what is ANS? Speaking ofhunger when I was a youngster...well...between the ages of 11 and 21...odd...I couldn't stop eating. I has four solid meals a day and snacked like wildfire in between. I remember feeling so desperately hungry in college lecture once I ran out to get food. Didn't put on any weight at all though. Was my thinnest ever infact. Anyways all that stopped about ten years ago and since then I've had this incredible thirst! Also...been noticing lately that if I get a full bladder I get dizzy and as soon as I empty is the dizzyness lessens.

Persephone...that's crazy that doc called you silly for fainting!

Hi there BendyScooby I'm not sure whereabouts you are in the UK. The one autonomic specialist who would be able to diagnose you and who researched most actively is PRofessor Mathias in London. Try and get a referral to him. However, there are more people up north and in Scotland now- Becky who posts here is from near Chester and she has a cardiologist there who diagnosed her with POTS and VVS.

We've all been there- being told we're stressed out, there's nothing wrong etc. My family Dr told me afte rI had my diagnosis that this happens because Drs have to think in terms of probabilities. And the statistical probability of having pots is much less than being stressed/having anxiety.

Once the Dr sees what's up with your bp and pulse, he's bound to be more helpful. Don't give up-- you'll get the help you need if you keep pushing!

Should also add I was drinking up to 4litres of water a day when I was first diagnosed- had even been tested for Addisons, I drank that much! It's a hallmark feature of POTS/autonomic dysfunction.

Yup it's Prof M that I was refered to...had the tests last week. As for my GP (don't know about yours) he said the only thing that can cause thirst is diabetes and thyroid problems...suggesting he had no idea of another cause. That's why he passed the buck to me as I actually said to him "you don't know what's wrong do you?" that's when he said it was all in my head. He actually has no idea I'm seeing Prof M and doesn't even seem to know about my EDS as he kept calling me 'prefectly healthy'. Another thing I get really ****ed off with is when docs refer to me as 'thin'. I mean not only is it insulting and hurtful but I'm actually Marfanoid which makes me look very underweight when actually I'm only about 6 pounds underweight. Incidentally...who tested you for Addisons?

Thanks for getting back to me everyone...when I say I have an aversion to salt I mean I can't eat it because it makes me so thirsty. I can eat it in the day ok...salty things like crips or peanuts or marmite/vegemite but if I eat it at night for supper I'm up all night peeing and drinking. It's bizzare. Especially marmite or vegemite . Makes me thirsty for days. Feeling ill again today. Can't seem to see properly. Surprised I can type actually and pupils all dilated. Feel quite dizzy. Of course it's all in my head! I hope to God that the specialists I saw last month find something and treat it. Just realised there is a GP at my surgey I haven't seen and she is supposed ot be very nice so I might try here and then if she's n good switch surgeries. The specialists were all so nice I wish they were my GPs!

Welcome!

I like your username--as soon as I saw it I guessed you must be an EDS person!

Unfortunately your experience with that doc is a common one for many of us...so frustrating.

As for the thirst--I am always soooooo thirsty. I remember Dr. Grubb telling me that my body 'thinks' it is dehydrated b/c even though I am drinking a lot, it isn't going where I need it and providign blood volume to places like the brain so your body keeps telling you you're thirst and then you just keep peeing it all out! So frustrating. I don't know.

Also, a lot of meds can cause dry mouth and thirst.

I have also been tested for Diabetes Insipidus and was borderline....

Emily

Well that covers just about everything I mentioned apart from thirst...anyone else get thirsty a lot and cannot tolerate salt? Also I find it's very bad just before I get a cold.