ana_22

Try not to worry, bring calming music or something to do to keep your mind off the situation. Also rationalise the situation, if you do have a medical emergency they will land the plane (i doubt it will get to this, but it is comfoting to know worst case scenario!) dont let your thought run away with you. Tell your self this is the worst that could possible happen and if that happens then this is how i will deal with it. when im panicy this seems to relax me as it prevent my mind from running away with what if's! also you may want to let a flight attendent know about POTS and how it effect you. have a safe trip...i know your going to get through it! x

i get a feeling of my vision vibrating or shaking....not what im directly looking at, but things that are on the edges of my visual field. i get blurry vision if im up for too long. & often my eyes hurt

i have only driven short distances twice since getting sick. i feel dizzy most of the time....espesh turning my head (which makes head checks hard!) so i dont drive.

i have just read the Autoimmune Epidemic (good book) and they highly reacomment tumeric...i may try this as soon as i can get my hands on some!

i did this for a week...but pushed my self to hard the last time i did it. i was tilting for half an hour (i dont faint....so i was pushing through feelings of nausea) i crashed badly that night. havent done it since. i think it could be useful. but i would recommend to start slowly.

yay for you!!!! keep it up xxx

im praying for her for a speedy recovery from her operation and an improvment in symptoms through treatment.

i have worn a BP device that inflates every half an hour......im a light sleeper but slept through most of it! not sure how!!!!

i have had a huge problem with eating since i go sick (the last year) i have lost 20 pounds (im at 110 pounds now) i have started Florinef 3 weeks ago, 0.1 dose. my eating has dramatically improved over the last week. previously i had no appetite and would force as much food as i could down, as my stomach always felt as it was pushing it back up. i would also have the full feeling. the smell and sight of food would set my stomach off and it would feel like concrete. over the last week amazingly i have been eating 3 full meals a day without feeling full and no longer does it feel like my body is fighting against food. i even have a tiny appetite which im hoping will get better too! i really hope this isnt temporary. i just wanted to share my improvment due to florinef just incase any of you havent tried it. it certainly would be worth a shot! i will keep you guys posted. fingers crossed this will last! (and excuse my spelling, im at my parent and this comp doenst seem to have spell check!)

Every time i feel the need to go to ER i try to hang on a bit forthe feeling to pass. Its hard. But its worth it as I know how useless ER can be for me. Ive only been a few times, maybe 4 or 5 and 2 of those times was the weekend i got ill (came down with POTS...) I had this preconcieved notion (before getting sick) that sick people go to the ER and get better, or get admitted to hospital and get better....or get admitted to hospital and they find out whats wrong with them (like on the tv show HOUSE!) Unfortunatley through first hand experience I have realised this is incorrect. My ER visits go like this: blood check, ECG, saline drip, maybe hooked up to a monitor if tachy. They all check out ok and my HR ussually stables to around 100 after a few hours and then i am sent home. I hate going there and will now avoid it as best i can. But i know what it feels like to be so scared of your symptoms and just wanting relief. Its a tough one.....but try to hang in there untill the feeling passes. Try and remember times that youve felt as bad and the fact that you pulled through ....you made it. Try let these times comfort you.

yes i never feel 'normal'. theres always a constant symptom to remind me how ill i am.....not that i need reminding. i hope it improves....i hope we all improve

Recently im getting stomach pain after eating, usually the area just under my belly button. its kinda like a sharp pain ache that last for seconds then comes back. im having another scope next week (i had one a year ago which just showed mild gastritis) just wondering if this is common is dysautonomia as its really a first for me.

sounds good! hopefully you will get some answers and treatment to prevent the fainting whilst driving!

did it stay at 105 or go down? just asking cos mine stays in the 100's. but i got my cousin who does not have POTS to do the laying standing BP and while his goes up to 100 at first for a minute it goes back to 75 within the second minute and stays there. best thing to do is go to the DR.....def tell him or her the info you have on POTS and see what they think.....i think a tilt table test would def be beneficial for you.

possibly.....but you would def need to go to a DR to rule out other things. most ppl dont pass out while sitting down but in the world of dysautonomia anything is possible! a way to check for POTS if you have a BP machine is take your BP and HR laying down then stand up and take it in 2 minute intervals.....if your HR goes up by 30 from laying to standing it may be pots.

i recently started taking it. it has lowered my HR. My bp wasnt too low before starting (ranging from 105/75 - 115/80) it has lifted my BP a bit, sometimes it is 125/85 or a little higher. the side effects i noticed are a few mornings after starting it i was tachy waking up, and some days i was tachy-er than usual. but that seems to have settled down. it has done nothing for my standing time before getting dizzy yet....i have only been on it for 2 weeks approx. fingers crossed xx

Ive had D when ive overdone it (by this i mean bending over to fold clothes!) ive got hot and tachy and D.

my vision often feels shakey. sometimes when my eyes open and get first light in the morning my vision flickers.

sending you hugs xxx

Thanks for your replies guys, it sure is reassuring! i havent had any today, hopefully they will soon go away after my body gets accustomed to the meds. just a side note....what are PVCs? i often read people talking about them but didnt pay too much attention as i wasn't having problems with heart rhythm and beats. what do they feel like?

For about 2 weeks i have been having what i think are palpitations. it feels like my chest is sinking then i feel a thump in my chest. usually it happens after eating. so im not sure if it has anything to do with my tummy. Today i had them for about 20 minutes, about 5 in a row then one or two every few minutes. also the majority of hem happen when im brething out, exhaling. i started florinef 3 weeks ago.....so i wonder if its got anything to do with that, my hr has decreased some nights standing in the 80s (used to be high 90's-115) im just a little worried over these episodes. they happen either after eating or if ive been standing up and then i sit down. i had an ecg 2 weeks ago which was ok. but i wasnt experiencing them at the time. can anyone offer opinions/advice? what do your palps feel like?

they have chats twice a month http://potsawareness.blogspot.com/

just wondering for those of you you have gerd..... im trying to figure out if this is what is causing my tummy pain after eating (pain in lower abdo and upper) i also have a tongue that feels (and kinda tastes) like ive soaked it in vinegar. are these gerd symptoms? i hardly get reflux. i used to real bad a year ago, but through elimination diet it has dramatically reduced. though i still get the occasional bit of reflux now and then. if you think this is gerd what helps? thanks in advance guys!

i'd like to believe that we do!!! We need to introduce a clause when joinging this forum...'those who recover or make a good partial recovery MUST report it!" if i ever do ill be sure to post.....i know a couple of ppl have posted that they have made a good recovery. And on another forum people have noted success on an exercise program that has 'cured' them or at least given them back some functionality! more info www.ieemphd.org

Ernie your work sounds so very interesting Erine (out of curiosity again!) just a few questions? How severe were the physical disorders that you have seen that have been 'fixed' by therapy? what kind of therapeutic techniques are used to correct these disorders?