Frogga,

So sorry you have to go thru this- You can always vent here!

I forgot, have you had ketamine and or HBOT- Do you think you are having seizures when you pass out?

Deb

aww hugs hon.. painless ones..
give me some hints and I will start researching for help, dysautonomia.. the part that makes you pass out what kind have they diagnosed?

I spent the day searchin through the clinical trials but I just don't know where to shorten the parameters, your Dx and SX etc.. POTS yes I think but alot mores going on too.. you can IM me if you like, there are so many promising studys being done now.. I just need to try help you somehow, have you told your doctors how bad it's gotten?

I bet it's a weight off your shoulders to be done the term even if the tests werent great.. mabie you will be able to rewrite them later when you are more stable and can concentrate.. or just leave it and know that you did your best, you are an incredible young woman and I am proud to call you my friend.. we all are here for you hon as I hope you know..

this is a sanctuary isnt it. I am so glad you have James and Ben and others there with you.. it will get better my friend and I will light a candle for you tonight Rosie.. a vanilla one.
Sandra

Rosie,
Much love and understanding to you as always
Tayla

It's been along time girlie since I have been on here to speak to you. I haven't forgotten about you. In fact, I sent you a private message. You should have it in your inbox on this site.

You were always there for me to give me such good advice with love and support and I would like to do the same for you. I apologize that you haven't gotten any better. Seems like you have been getting worse...

When is your semester over? When do you get a break? Seems like you are overloading yourself...

My thoughts and prayers are with you always...I am always here for you!!

Heather

Hi Frogga. You're one of the strongest people I know and you should be giving me advice. I read all your posts and never seem to know what to say. This time I believe I do.

You need to think about yourself first until you can get back to square one. Diet is critical probably with this condition so at least try to get your diet fixed back up. Get some rest and exercise and relax once in a while. You can't save the world yourself.

Best of luck. Perhaps no one deserves it more.

Thanks all of you! It's nice not to feel so alone with all of this.. it's been pretty isolating..

This is going to be a short generalised reply...

Firstly I went to see my GP about it (PCP) and he doesn't know what's happened or why. NHS won't do an MRI scan as an emergency (apparently). So have had some blood tests done (though amusingly I passed out 8 times on the way to the surgery (6 minute walk from my house) and it was him that (nearly) passed out when I had the blood taken!! Bizzarely had no neurology work up. I'm passing out slightly less - apparently about 40 times today including one where I fell from my wheelchair onto the floor! However I'm getting amnesia episodes where I can't remember what's happened or conversations I've had etc which is pretty scary!

Sandel - thanks so much babe... problem is in the UK you wait years for some appointments and there's very little you can do to hurry them up! So though the GP reckons some type of autonomic disorder and I'm positive on a tilt table test I haven't seen the consultant yet. Otherwise, much more emotional, low blood pressure, high pulse, low blood sugar levels, dizziness, loss of vision/ double vision, paralysis, extreme exhaustion, amnesia/ amnesiac episodes, frequent faints (40+ day) and fits (5+ a day). Increased pain... inability to go over any form of bump or movement of my back and neck so can't tolerate any form of step at all. I love vanilla - thanks babe!

Hey heather - I haven't got a PM from you??! how are you doing? I finish this semester in the Summer but have a couple of weeks off at Easter. I've just cancelled some of my work for now and will just try and take it slowly.
Much love and thankyou ... this thing is scaring me quite alot!!

Love ya

Frogga xxxxxxx

Frogga,

So sorry you have been going through all this. My deepest sympathy lies with you. I don't understand why you're passing out this often, I hope there is a reason and cure to stop this. It must be so difficult for you...yet you keep trying. What an inspiration you are...

And James, what a guy to have on your side, huh?

Hugs and well wishes for you both through this difficult time.

GHL

Hi Frogga,
I'm so sorry your going through such a diffcult time. It must be awful to be passing out so many times during the day. Hopefully the doctor will be able to help you soon so you can start to feel better. I will be praying for you that things improve for you. I will be thinking of you. Take Care

Laraine

Hey Frogga,

What happens if you turned up at an Emergency room describing your symptoms? They should have a duty of care that does not enable them to deny you treatment. What the heck is going on there?
Here you would have been admitted and had EVERYTHING necessary. They are liable for you if they send you away unchecked and something goes wrong.
You need to be contacting your member of Parliament, you need someone to be your advocate.
The nurse in me says your symptoms are serious and NO doctor worth his salt can say otherwise and pretend it isn't happening

I can't believe that your health system can be so bad that they can turn you away, send you home without doing every test that is needed to find the cause
I am shocked that this occurs in a country which is not exactly third world.

Please , please go to an Emergency department and refuse to leave.
Love Tayla