lauralulu

Thank you. I knew you guys would understand, thank GOD I have this forum!

I got the distinct impression he knew (pardon my french) jack **** about POTS! I mean, saying there's no point being tested for it because there's nothing you can do anyway! How ignorant! And he didn't even mention a TTT so obviously he's clueless about it. Which is fair enough, you can't expect people to know EVERYTHING but to just dismiss it the way he did, despite all my symptoms like the bladder and the excess thirst.

Am definitely going to ask to see someone else. Luckily, I found someone who works locally who is listed on the STARS website as having interest in POTS.

I really don't know how to COPE without my bladder medication, I'm freaking out! Before I had it, life was so miserable, I couldn't go anywhere or do anything because I HAD to be constantly near a bathroom, using it every 15 minutes if I was keeping my fluid intake up appropriately; the only way I could leave the house was if I purposely didn't drink water, which is horrid because then I'm dehydrated (and that's no good if I do have POTS!).

OH, and, how could I forget this??

EXERCISE!

"There's a lot to be said for exercise."

????!!!?!!!!!

So basically I've been told to 'fatten up, stop worrying, and exercise'.

Well, how about 50 times a day up the stairs for sodding exercise now I can't take my bladder meds anymore!!!!

So, the summary of my appointment is as follows:

1. I have "Inappropriate sinus tachycardia."

2. It's a benign problem

So 3. Don't worry about it and

4. Fatten up, because my 'build' is making me 'feel it' more.

When I showed him info on POTS and asked if he thought it could be that, or if I could be tested for it- he was dismissive and said

5. You could be tested for it, but even if it is that, there's nothing you can do for it anyway.

Conclusion:

Come off my trospium chloride because it can make IST worse. (Which means I will be back to being chained to the bathroom as I will have to pee every 15-20 minutes).

Forget about it.

I feel incredibly frustrated, angry, ignored, dismissed and upset.

Yeah, that's right, it is oats. I am taking it in tincture form. I bought it from my local herbalist, who make up blends and things. Here's the info that sold it to me: http://www.health4youonline.com/health_sup...ena_bf30308.htm

Since taking it, I certainly feel as though my sleep has been much more restful, so it's so far so good! Just be careful if you get low BP as I've noticed mine has been lower since taking it. Plus I've only been taking it before bed as I find it does make me feel VERY sleepy- but this is good for me as I wasn't sleeping well prior to getting it.

I am personally at the moment trialling Avena Sativa for myself. First experience of it, it lowered my heart rate considerably. It has also lowered my BP but I don't feel bad with that; this mornings reading was 83/54 and HR 72 (sitting), then standing it was 103/78 with a HR of 114 (bearing in mind I took it last night at 9pm and it's now 9.28am). My morning HR would usually be 120-130.

It also got rid of my 'tired but wired' feeling and my 'twitchyness' (sort of like having restless legs- feeling like I constantly need to move/stretch/fidget my legs, and if I don't, I get the twitchyness in my torso too).

So, I'm quite liking it so far.

I tried it because it's supposed to be good for the nervous system and cardiac output.

The waiting is the worst part. I just hope it goes by fast for you and you get answers!

Mine is very very pale/almost totally clear too.

Weirrrrd.

I did ask my uro if I could get tested for DI and his reply was "It's very rare so there's no point."

:/

Not liking that attitude...

I'm like this way myself and have been tested for diabetes over and over again, it's like every time I say I'm thirsty all the time, they test me again. It never feels as if I can drink enough, and I also have an over-active bladder so I can't even retain much fluid in there so I'm forever going to the toilet, even with meds to help it hold more.

So I can't answer your question! Just wanted to speak up and say, you're not the only one! xx

I had some a while ago when I was suffering with anxiety (which was probably actually the onset of POTS I believe now as it happened after 'the virus' I had, after which so many other health issues occurred!).

I was thinking of getting some again and so read about it, and it sounds like it could benefit some of us as it's a nervous system tonic, and can help with poor sleep (yes please!).

Here's some info, in case anyone else thinks of giving it a whirl.

http://www.health4youonline.com/health_sup...ena_bf30308.htm

Iknow a girl that has a condition that I would SWEAR is POTS, yet she is convinced its just 'ME' because he doctor told her so. Frustrating.

That was me for 8 years. Til a FRIEND told me about POTS based on my strange urinary symptoms and at first I, like you, couldn't connect any problems I've felt to standing. Which is ironic because when I look back on a blog I kept, at a time when my symptoms were bad I wrote "I have had to adapt playing games with the children [i was doing voluntary work in a school] to allow me to sit down because I'm so tired all the time but if I sit down I can have a rest yet still engage them in some game without having to run or move about with them!"

I only recently decided to get a HR watch and see if 'there could be anything in' what she was saying and then I saw with my own eyes HR increases of 30 and 40bpm from laying to standing.

And then so many things made sense- including feeling so tired and having to 'rest' so much more than anyone else I've ever known.

HR doesn't go above 130? What that's crazy!! lol Pity for the potsies, maybe we should complain on grounds of discrimination!

No no, you don't have to be sorry for your feelings, they are perfectly valid, and while it's true that yes, there are other people who have it tougher, it doesn't mean you shouldn't feel what you do, or have no right to.

There's always going to be someone worse off but that doesn't mean you can't be sad about what your own personal limitations. I can understand perfectly why you were feeling that way. I am glad you've talked yourself around, but never feel like you have to apologise for getting low or fed up about things! It happens to EVERYONE from time to time and just because there are orphans or people with cancer or whatever, does not mean that we should all go around thanking our lucky stars. We can still sometimes feel like poo about the cards that have been dealt us, even if they aren't as bad as cards dealt to others, y'know?

Caprycilic acid can help in treating yeast overgrowth. It's a tablet, you can buy it from herbalists/health food store kind of places. It's made of something from coconut and the tub smells lovely and coconutty! (I stick my nose into it every time I take one coz it smells gooood lol).

Acidophilis is good too, as well as natural yoghurt.

Thanks for the advice! I often suffer with that tired but wired feeling, it gets really annoying. I spent many years not getting to sleep until 5am, despite feeling exhausted and going to bed at 10pm! I'm nowhere near as bad as that currently, chamomile tea helps, but lately I feel in need of an extra something as it's taking me a while to get to sleep and I'm waking up countless times.

Thanks- I was considering trying melatonin but haven't really heard or read that much about it as yet. Might just give it a whirl...

Good luck on the 12th! Hope you get answers and, more importantly, some treatment!

Would that be at the Hallamshire hospital? Good luck with the appointment, I hope you can get the answers and treatment you need, closer to home especially as I know how invaluable that must be!

Really?? Support groups in Sheffield? I'm SO near there it's practically on my doorstep! If you know or hear anymore about this, please let me know!!

Yep I know of them, just never knew they contained b-vits too! I bought some today and munched a bowl full, they really do taste of marmite- quite nice! Didn't have too many as I am slightly wheat intolerant but I can get away with it in small doses so I wanted to try them anyway.

I also got some pretzels and some lucozade, I slept better last night and feel much better today, even though my tachy is pretty bad! I'm taking it easy, drinking lots and my mind is so much clearer, which is a relief!

Thanks for all the advice !

I agree! This site is brilliant, everyone is so kind and helpful and UNDERSTANDING! *hugs all round!*

Hi!

There's a few UKers here who no doubt will introduce themselves. I'm in similar situation to you, not diagnosed yet, awaiting some tests, albeit through only my small, local hospital though so not sure how conclusive they'll be... we'll see.

Good luck with your tests anyway, the people here are all very friendly and welcoming and you can learn a bunch! xx

Okay, that's great!

The thirst I have had for the past 2+ years and have in that time had numerous blood tests for diabetes, pretty much every time I've mentioned it to my GP, they've decided to run blood work for me. It always came back fine.

It did once show I had a "glandular fever type of infection" (last year) which I wasn't even aware of (I was just super tired but then I guess I am used to that on and off and so was assuming it was another dip, even before I was aware of POTS and what not, I'd have times like that and times when I felt relatively okay and had energy).

That's going off an a tangent mind. Thanks for all the advice! I slept much better last night and so far this morning, feel much better than yesterday.

I have no idea what they are either but am now most curious!

Thank you for all the tips and advice, I will write them all down tomorrow (my brain aint functioning well at all short term memory wise, I am having multipe "senior moments" lol) and give them a whirl!

Twiglets contain B-vitamins?! Well that's something I never knew!

Thanks, these are both great ideas. I will look have a look for those tablets to keep in the cupboard for times like these!

Yep, I have been snowed in (earlier last week) AND today ICED in. Fed up with it! I went out for a short walk yesterday and although I felt better for getting some fresh air, it's such hard work in the snow!

I feel a little better for eating a tin of tuna and a packet of the saltiest crisps I could find in the cupboard!

I also find I get worse with this before and during my period. Maybe my hormones are whacked (I recently had a coil fitted- 3 weeks ago today) and it's making me more symptomatic!

I'm so glad to have found this forum though, it really helps to have a place where people understand and can help!