ana_22

Yesterday i ventured out into a department store. Everything was going as well as could be....but then after of about 15 mins walking around my ears started getting really full and popping and i felt i had to constantly yawn to open them up. At home it continued and at times felt as if there was a balloon being blown up in my head and trying to escape through my ears (awful way of trying to describe it i know!!!) but thats how the pressure feels. does anyone experience this?

oh no poor mack...i'm praying for both of you. i hope it leaves him just as fast as it came on.

well it happened again this morning....si i thought i would experiment, i tried to life my hand to scratch my head.....so it felt like my hand was lifting (but in reality i knew it wasnt) anyway i got about half way there and my ear started doing a high pitched ring and felt like it was full of pressure and going to burst (my left ear which has been tested and found vestibular wise weaker than my right) so i freaked out and for real moved my arm to wake my self up. the oly thing i can think as to why this happened is maybe my brain was still alert so not in sleep mode and my vestibular might have been getting too confused trying to work out where i was in space and time.....and couldnt as i was moving an arm but not really moving it....hmmm confusing, weird but interesting!

yes firewatcher! it really felt like i was awake.....but dreaming at the same time. it was kinda cool...like i was in a different world/zone/reality!

i think you should give it a go. i take it and notice a small difference, i think you have to be careful about brands though. i know it doesnt have interactions with lexapro and klonoplin...not sure about nadalol though. i would give it a 6 week trial. what is the does that you were thinking? i take 100mg

Thanks for your replies macks mom- this makes sense as i also have SIBO...& i know this can be caused by dysmotility of the small bowel. is there a way to check dysmotility of the small bowel? everything you say makes sense but i dout ill remember every thing at my next GI appt (in a month) i might just print out your reply and show it to my dr!!! thanks

just wondering if this has happened to anyone & whether it may be ans related. it happened to me yesterday & this morning. i usually wake up at 7.00amish but i try to get a few hours more sleep though its really hard for me to get back to sleep and usually i just lay there with my eyes shut. anyway yesterday and this morning it seems like i slipped into a weird dream state...i was fully aware i was dreaming and knew that if i moved my fingers or toes i would 'come out' of this dream state. i did move a few times to come out of it but found it easy to get back into it. the dreams i was having were just lying in my bed moving my arms and legs (cos it felt weird and floaty like) also walking around and meeting people from my old work. it was such a weird experience....it lasted for about an hour to an hour & a half. i tried to look it up on the net and found something about lucid dreaming but im not sure if this is it.

are they close to proving it with research? can ou measure NE levels in your body easily? or is it a complicated process?

thanks for that watered down version! so basically something has turned off the gene that controls ans? ill have to look into it more.

i dont really understand all the scientific things behind POTS....i know im going to have to research a bit more....i wish i had paid attention in science now....i was more of a arts/design student. BUT does Hypermethylation have anything to do with b12 and stuff that they have been researching in CFS. like the yasko protocal and dr demeeiliers protocol? or am i totally on the wrong track?

i have GI issues. At the start (a year ago) it was very hard to eat anything, no appetite, aversion to food and food smells, nausea, churning, felt like heaps of air in my tummy. It got worse at the start of the year. i felt full eating very little, it was hard to get food down, palps after eating, sometimes full reactions such as sweating bp rises ligt sensitivity. biggest problem though i felt full after eating small amount. it has improved a little after starting florinef but it is still not one of my favourite things to do! anyway i had a gastric emtying scan that turned out normal. i dont know the exact figures though. the dr has suggested a mammotry study as this can diagnos gp too. im not sure whether to go for it. i know there is something wrong with the GI system but the thing is i have a bowel movement every morning (& as gross as this is to share ... its ussually a pretty big BMlike everything i ate the day before comes out) so can it be GP if i have regular BM movemtns? or should i be looking at other things?

Do you know what type of OI they are studying? i know a cardio Dr in Melb is doing research into OI and panic. the video i posted is a new one it was a current affair last week....i just happened to have it on channel 9 last week and saw it...he looks really well. rama i think there is a fundraising event called cocktails for a cause coming up really soon at the alfred are you going by any chance? im not (due to health).....just wondering if you are!

Greg page ws recently on australian TV... the video can be seen here. looks like he is doing well if he is able to perform a couple of concerts! good news and gives hope http://video.msn.com/?mkt=en-au&brand=...sn&tab=m164 the video is on the bottom left corner

i would totally do it if it was going to cure me!

thank you for that! i had a reaction to an antibiotic last year a couple of day after i became dysautonomic. i had gone to the ER and they had said you have a UTI (though the cultures or testd never showed that.....this was my first experience of ER and their 'get you out of the door asap policy') i took one antibiotic there and another the day after. the day after i had immiediate diareah and a huge invrease in HR & adreniline. it would not go down and i was pacing the house i felt so full of nervous energy. anyway i got my sister to drive me back to the ER and they took my pulse and asked if i had ever suffered from anxiet....stupidly i said yes (even though i knew this wasnt anxiety) anyway they made me sit in the waiting room for 8 hours before giving me a valium and sending me home. by then my HR had calmed down some. i dont know the antibiotic namebut i still have the box though its at my parents house.....im going to have to check it when i go there. i wonder if this was some kind of reaction to the antibiotic.......

Hi Emma! Welcome....shame we had to meet like this (on this forum i mean) hehehe seriously though this forum is an excellent resource! Be sure to keep us informed about your progress xxx ana

how did you go? when do you get some results? at first i misread your post i thought you said you were going to be there for 3 weeks!!!! i thought what on earth could you do for 3 weeks! what kind of tests did they do?

pretty much the same. im struggling to function most days (wash, dress, eat) i can walk tiny distances. im starting miodrine soon hopefully it will help with something.

Jana, i am thinking of you & your mother. i hope all turns out better than expected. just a side note....what kind of dr tests for amyloidosis? is there a particular specialist that tests for it? ive been meaning to bring this up for ages but your topic post reminded me thanks

Dana stay strong for your kids. I know this is hard but its not PERMANENT! im not sure how the US legal system works but alot of people have given you advice on how to get legal support to fight for your kids. This situation WILL improve!

I was on cipramil and then lexapro in 2004 for a year. I got sick in 2008. sometimes i think it may be related. when i was on lexapro i would get night sweats and sometimes i would have these weird spells where my heard would speed up and id get dizzy but it would pass within ten minutes or so. once i was having blurred vision at work and drove home was completley tachycardic and was sweating and couldnt think straight, dnt know how i made it home alive....i thought i was going to have a strke or something but in hindsight the real threat was i could have crashed the car, sometimes i think maybe using the anti dep may have left permenant damge and caused me being ill. OR maybe i had a weak autonomic system that was further weakened by the anti dep. Or maybe its all just a coincidence? Dont know.

thanks guys! am looking fwd to trying it. so just to get it straight....it didnt realy lift your BP up?

im thinking of asking my cardio to try miodrine. i have significant pooling in legs and sometimes arms. the only thing is my bp is not VERY low....it usually runs 100/70ish but can be as high as 130/90 to as low as 95/70 depending on what im doing. just wondering if anyone with a similar profile has tries miodrine and whether it has helped? from what i have read the results are pretty instant? so would i get a feeling of success or failure within a day? or can it take longer to see overall effects like florinef? thanks guys x

hang in there! it will get better. Time heals those types of wounds. Maybe its better that most of the stuff is his...you dont want his stuff hanging around and reminding you of him!

oh im in australia...its winter here! i leave the heater on and window open in winter makes it warm enough but 'cool' enough too, if that makes sense! the bag was directly on the heater and the meds are in a glass bottle....so who knows what kind of temps it got up to in there!!!! i was just reading on the net that some meds can be damaged by heat...(hot cars, certain areas in aeroplanes, hot houses) im trying to find my script so i can pick up a new bottle from the pharmacy.