Lette

*Husband, iI only have one!! LOL!!!

I feel your pain, luckilly my family and my husbands are absolute ledgends and I couldnt cope without them especially my husband but sometimes with friends I do get the feeling that they are like, 'Oh ust get on with it' not realising that sometimes it takes every last ounce of energy just to sit up in bed never mind get out of it and work!!

I was in hospotal all last week because I fainted during a routine appointment so they kept me in and I fainted again on the tilt table test! They increased my beta blocker from 30mg to 80 mg daily and now I am gasping with thirst, hurts when I pee and im peeing constantly, I either have an infection or the new meds are doing it!!

Hi All, The New Irish Dysautonomia Awareness Blog is up please check it out and feel free to get involved, It is not just restricted to Ireland just based there, loads of help needed as it is pretty bare at the moment and we want to fill it out! Hope to see you there, please leave a comment and get things rolling! THANK YOU! If any of you would like to be involved in the blog writing or the youtube channel videos I can add you as an author, lets get together! :) THANK YOU! Also if you would like me to link your blog in the blogroll, please give me your link and ill add it

Thanks for sharing I will add it to my blog now http://irishdysautonomia.wordpress.com/

I have also had times where I wake from a dream to use the loo or whatever and then continue the same dream when I go back to sleep... that cant be right, can it?

Here is a strange one and I hope this is the right place for it as it concerns medication so I didnt want to post in the chit chat forum, or at least I think it concerns medication!!... I have been having, super, really and I mean really very detailed in depth dreams... I have always been a light sleeper but would always have had some dreams but never to the level of detail and intricacy that I am having them now on a nightly basis. I noticed that once the side effects of all the meds I was on subsided I started having these really vivid, full colour, linear dreams like they would follow a story for what seemed way longer than a usual dream!! I have also managed to have a few lucid dreams where I can control whats going on in the dream, be any character I want and change my surroundings or superhuman talents at will. Sometimes they can be so vivid that I question weather I am dreaming or awake! There are feelings, emotions, tastes, smell, I even feel vivid pain at times... its odd, its kinda cool and an awesome way to have an adventure for free but I have never had them like this before, I am wondering if any of you are the same? Sometimes my dreams can be so active that I can jerk, mumble and moan while my sleaping depending on whats hapening in the dream, my husband has had to comfort me at times or tells me when I wake that I was jumpy or calling out in relation to the dream I was having, this can make me waaayyy more tired than usual when I wake as I have had a very active night!!

oh I can only wish, the side effects of the stuff im on at first were unbearable but thankfully after about 2 months all side effects went away or at least became bearable! I wish I didnt have to take 14 meds a day!

well the growth hormone thingy was explained by my doc so I dunno for sure but better info on it here: http://en.wikipedia.org/wiki/Sleep_paralysis Im glad I havent had it in ages, the worst cases for me are when I feel someone touch me and I turn around and theres noone there... its so freaky!! now I just get that with Midodrine! LOL! and I have gotten the 'Hag' feeling (as described int he artical) sitting on my chest like I cant breath with a feeling of dread! its soooo strange but all down to your brain doing funny things!!

yeah Ireland is very behind the times in the health department :( I am also on a 2 year waiting list to find out if I have Vascular EDS!!! I am really hoping my appointment in 2 weeks can speed things up a bit! Hope you feel better soon

your dog sounds amazing :D I have a little Cavilear king charles as a pet and she can get very affectionate towards me before I faint but she is not trained for it or anything but she is a great little companion :)

Hey s pot, im in ireland too and im having a relapse too, Im vometing every night now and back to napping during the day when I didnt need to for a long time!! I am back to the specialist in 2 weeks so hopefully we will see whats up, im still on the same meds and in my description below, I can have good and bad days but the vometing is killing me and back to fainting too where that had stopped for a few months

I twitch like a drug addict!! only sometimes, when im tired and when I sleep I can get full body jerks enough to wake both me and my husband out of our sleep!!

My resting is usually 63 can drop to the late 40's during that time of the month and when I am active it always raises above 100 and can easily go to 130

My resting HR is usually in the 60's and can drop to the late 40's during my Period, I always get soooo bad during that time of the month!!

I have suffered with it all my life, even long before being diagnosed with Pots, Its your brain releasing too much growth hormone while you sleep which keeps you still so that you dont act out your dreams, some people like us can wake up too early from sleep while the hormone is still being released meaning we cant move and can still see, feel and hear things that is going on in our dreams but see them in the room around you! Its a very real things and its very frightening when it happens. Also when on my back it happens for me at its worst but I dont get it every night, I do sleep on my front now and I find it helps, I dont know what causes it or stops it but it was worse when i was a teenager than what it is now but can be well scary when it happens!!! I sometimes try to scream when it happens but no noise comes out only a strange squeak!! LOL! It scares my husband but thankfully I havent had one in ages!! I get night jerks nearly every night though and my Dr. said that was caused by the meds

Yup!! Happens to me especially when I sleep, I wake with pain in my arms and they are completely dead, then when I try and move them a flood of pins and needles for aaaages its horrible!!!

Ok, get this, I have had ear problems all my life, severe glue ear and 12 operations since the age of 7, I am now 28 and up untill my new meds I was severely deaf in recent years, Bi Lateral hearing aids, sign language interpreter, the works!... I was put on meds in april for pots and since I have had an amazing improvement! I have an appointment in January with my ENT proffessor, I cant wait to see what is going on!!!

I am the same as Sandyshell, I take Midodrine 3 times a day and I sometimes have a nap after taking my second dose from an hour to two hours, no major problems now but when I started taking it there were horrible side effects but they have eased right off now and I have very little problems on it, it is a great drug and mostly keeps me from fainting as often as I did!

yup I get this too and have blurry vision a lot when my symptoms are at their worse, I also get a strange thing at night sometimes, when I turn off the light at night and there is still ambiant light in the room, I am blind in one eye for a few minutes!!! Its really strange but I put it down to lack of oxygen with the pots, it comes back eventually but looks and feels very odd when it happens

Well I have gotten an updated appointment to see my pots specialist so I am going to do everything in my power to get an expediated appointment to find out about EDS when im there, it will be early November so fingers and toes crossed that he will be able to sort something!

I get this too, I can sometimes be perfectly fine then other times which can last for days on end i can vomit after eating or even trying to drink a mouth full of water!!

I dont suffer from anxiety but I definately feel my symptoms get waaaay worse when im worried or stressed about things in general!

I dunno if its adrenaline related but I Jerk something terrible at times, I am not sure what causes it but it can be so bad at night it wakes me and my husband out of our sleep, Also when I am awake my legs or arms will jerk and shake, I look like a strange junkie at times but its since I have been diagnosed with Pots and started on the meds, so it must be related to the meds im oN!!

I have gained a stone since being diagnosed in April, but to be honest its down to lazy eating and reduced exercise since im so tired all the time!!!