Hi I'm New!

[BendyScooby]

Hi guys...just wanted to introsuce myself. I'm a 30 year old female from the UK with Ehlers Danlos Syndrome type 3 and am also Marfanoid. I have suspected autonomic dysfunction and have recently had tests to find out if indeed I do or not. Have recently been feeling vrey unwell so ws tested for diabetes (glucose test) as I haev excessive thirst, extreme irritiability, weight loss, blurred vision,lightheaded and fainting. Have ben thirsty for 10 years thougha nd always sweat a lot although teh latter has ben under control lately. Anyways by diabetes test came back negative and have other test like kidney functiona nd thyroid done also but all came back normal. Went to my GP today and told him I still feel ill and that I almost passed out in the waiting room. He said " do you think it's psychologocal?" after I told him I was sick of everything being attributed to my anxiety. He also refused to do any more tests. he took my blood pressure and it was low but he said that wasn't important. I walked out and don't intend going back. I've only been there since Januray but theya re hopeless. Have no idea how to handle me and put everything down to being psycologocal or dismoess everything. I sometimes wonder how they ever got a degree. Anyways I just wondered of anyone else here has had the symptoms I've descirbed?

[AJVDK]

Welome! I wanted to drop a line and say hello. Also is sounds like you may have a from of Dysautonomia. Is there another doctor you could see, as it doesn't sound like the one you are currently seeing wants to help.

Here is a lis of symptom of people that have POTS. Some of the one you state are listed, http://www.dinet.org/symptoms.htm. I hope this helps!

Again I am gald you are here!

Amy

[BendyScooby]

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.

[ellepee]

Hi,

I also have been experiencing excessive thirst- it started about 6 or 7 years ago. I was tested for diabetes and everything, always negative and was told that it was probably just in my head..so frustrating! Then almost 2 years ago, I was suddenly hit with a whole bunch of new symptoms. That is when I was diagnosed with autonomic dysfunction and POTS. I still suffer from extreme thirst at times which is such an uncomfortable feeling and keep thinking that it must be tied in here somewhere. I take a lot of salt tablets and can tolerate it pretty well (well, my nausea and vomiting pattern hasn't changed since I've started taking them or anything). I've had to do a lot of 24-hour urine studies and my docs have been concerned with the amount of urine, but they just attribute it to how much I drink...even though I really can't help how much I drink. When I'm thirsty and don't drink I have difficulty processing my thoughts and I wake up every morning feeling extremely dehydrated. But, I canrelate to most of your symptoms.

[Lukkychrm42]

Yup, I'm always thirsty, too. My friends used to make fun of me for how much water I drank, and now that I'm on this high-salt diet, I drink even more! That's pretty common with us, because a lot of us have difficulty retaining water. Do you mean that you don't like salt, or actually can't have it for some reason??

Also, symptoms tend to get worse when we get sick with other things, too. Sorry you're here, if you know what I mean, but glad you found us!!!!

[DancingLight]

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

[BendyScooby]

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

[persephone]

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.

[BendyScooby]

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?

[persephone]

You're marfanoid too? Does your GP not know of the links between Marfans/EDS and POTS? Oh dear oh dear oh dear. This is terrible.

It was an endocrinologist befor eI got to see Prof Mathias who looked for addisons.

It's part of your ANS to feel thirst or hunger, and to digest. So if your ANs is off, then those things will be too. God, that's BASIC physiology. I worry about these people, I really do. The NHS REALLY *****.

[becky]

Howdy,

did i hear my name mentioned?

i had the addisons test by an endocrinologist at the hospital a couple of years ago when i first got sick.

this was the same endocrinologist who told me i was"a silly young girl" for passing out, yeah persephone is right the nhs *****!

i don't have eds and i'm definitely not underweight, in fact quite the opposite! i like the term curvy!!

i have also been sent to see two pscycologists, cos according to my doctors it was all in my head too! god it must be something in the training!

sorry if i'm a little off today, got really bad sore throat, can't swallow properly and i have hayfever! my nose feels like someone has been putting pipe cleaners up it.

anyway, welcome new uk potsy, whereabouts are you?

love becks x x x

[BendyScooby]

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!

[persephone]

Whereabouts in South Wales? My borther lives between Swansea and Bridgend.

Becks- I have the same thing- my throat's like sandpaper and every joint in my entire body is aching

I've had to come home to feel better!

Must chat soon lovey

x

[mom4cem]

Welcome to the group. I hope you find some answers and a willing physician to help you.

[Clairefmartin]

Just wanted to say welcome - and hang in there - most of us have been told its "psychological" when it's not.

Good luck!

[becky]

Hi again,

funny you saying about dizzyness and needing the toilet, whenever i faint as soon as i come round the first thing i need to do is go to the toilet, but i never needed to before i passed out.

anyway, my docs don't know what pots is either, i've changed doctors twice because the ones that i was with when i first was diagnosed still thought the cardio was wrong and that i was depressed and making myself faint!! the second doctor convinced herself that i was on paroxetine (one of my pots meds) because i was really depressed!

when will they get over themselves!

so my new doctor didn't know what pots was but knew it was rare so he said oh i'll just check on the internet, he googled it and obviously this site came up so he had a read and was like, wow, you are going to be an interesting patient.

he straight away got me my medication without questioning it, the last doctor wouldn't prescribe florinef until she had spoken to my cardiologist. he gave me some tablets to help with ibs, he took my bp and hr and was really cool.

I know its really difficult when they won't listen but you have to persevere (sp?) and let them know that you know your own body, if all else fails complain, complain, complain!! that's what i do.

becks x x x

[BendyScooby]

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

[bttrflyamby1981]

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

[BendyScooby]

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.

[bttrflyamby1981]

I'm sorry your having such a hard time right now. Pain is never fun, and when it's all the time it can be overwhelming. Hang it there and know that I will give you uplifting thoughts to try and make you feel better.

I have pain, but mine is mostly from the migraines, I also have carpel tunnel but it only flares up every once and awile.

That time of the month is painful for me, but only when I have a heavy one...usually one every 3 months. This month happens to be a heavy one....but the pain isn't too bad when I take something for it. I get more dizzy too, and feel more drained but I think because I've been dealing with this for a few years now, it feels normal..I don't remember feeling any different. It started when I was 12 and got worse 3 years ago so I deal with it the best I can.

...positive thinking can make you have a better day! Try it!

Amber