Evie

Yeh i have thought that could be the case .. that i actually am suffering from low blood pressure and therefore i faint in my dream. Im not sure if thats medically sound or not heh.... maybe the psychologists would think more along those lines hehe

I tend to faint sometimes if i go to the loo in the night (or get up for any sudden reason)... but i think thats pretty normal with OI... its just that my bp is low from laying down. Thankfully i dont have small children to worry about, that must be tough. I also faint in my dreams which is really rotten ... you would think you would have a break while dreaming wouldnt you? lol

I am 22 and have never had a job. Its annoying isnt it heh. I think if you state that you have helped your family in their work then most people would be understanding and think thats pretty normal... Good luck!

Hi morgan im glad your pychciatrist is good! its so much easier do deal with when they believe you and are supportive... I hope you get some answers from drs now that you have a pysc report saying its NOT in your mind. (although I do hear that CBT helps you deal with bodyily symptoms even if they are not caused in your mind so if you do have to go to further psyc appointments i hope they can help your mind help your body .. even if its not caused by your mind? if that makes any sense at all heheh) This must be so tough for you... thinking you of you and wishing you all the best in the world!

I too will edit my post about education ... however i think posts usually do go back to the point of the thread, sometimes we go off tangent but we get back to the point eventually. Good luck with getting attention guys! I hope the people who make shows take it seriously and dont put a psyc spin on it.

Deleted ... sorry dont know how to delete the whole post

Im feeling better and better ... i still have my downs but i recover alot quicker than i use to. I have not fainted since early august. I have had a month where i have only felt spaced out about 30% of the time opposed to 70%. I have not had to have extentions on assesments. I ran to the car the other day... big WOW moment for me. Its not like i am playing sport yet or anything .. but still big improvements Im really excited The last 3 months have been the biggest step forward i have had in 5 years. I hope it continues, still dont want to get my hopes up too high though. I realise others have had a year or so without trouble then its returned ... however i still just wanted to add a bright note.

This may sound strange but i actually like that people dont know about what i have ... there are no stigmas attached or prior assumptions so they actually listen to my explanation. When i told people i had CFS i could tell most people just assumed i was lazy. CFS has the worst stigmas attached to it.... yet i suppose some people out there are more understanding due to the attention its been given. Its a bit of a double edged sword. However, good luck with it

hi dana, i just replied to your other thread and i tried to answer some of the questions there ultimately there is little known about this condition so im afraid we may not be able to answer all your questions (we are asking the same ones though! hehe) And yes ... i would say 99% of us get frustrated ... you are not alone in that department

Hi dana! Alot of people get it from a viral infection or a illness ... as far as i understand one theory is that since you lay down so much your body trains itself to to think that laying down is normal so then when you get up it gets confused and you get dizzy. That is why many drs say "get out of bed and walk no matter what!" , because they think you can retrain your body. Some people get great results with forcing themselves to be mobile. (i am not suggesting you do this ... i couldnt do it when i was first diagnosed, i just looked at the dr like he was asking me to fly to the moon) For me florinef has helped me alot, it helps keep your blood pressure up so you dont get so dizzy. All the medications are very personal so what works for some wont work for others. There are other meds like mestonin and beta blockers, however i dont know much about them sorry. For non medicinal treatments when your dizzy many people will eat salt or sugar, or drink things like powerade. Make sure you are always hydrated. I also found i improved no end when i moved into a house with air conditioning. Most of us are sensitive to heat, others are sensitive to cold ... so its really just working out what is best for you. Here is a list from this site of what to avoid ... it may help give you some information http://www.potsplace.com/what_to_avoid.htm I hope you are one of the lucky ones that manage to recover from this quickly!

For my fibro i find massage helps me no end .... if i dont have one or two massages a week the pain gets quite bad. Thats my advice for muscle or bone pain Although i suppose you would want to rule out other things as im not sure if massage would exaserbate symptoms of other syndromes.

wow! you should make a post about your super ER experience.... i have only read about bad ones on this site Its great when you come across people who have first hand knowledge (apart from a medical degree)

Hi Corina! welcome! Do you know what your body reacts to medicine wise? Im scared of things too ... yet sometimes i think part of my reaction may be more anxiety than a actual reaction ... i fear a reaction so much that i think i may create one. Florinef has helped me so much, i hope if you are able to tolerate it that it can help you.

Hi sorry i am not sure if i have experienced what you are experienceing ... i tend to get vision loss sometimes ... at random times like while i am walking down the street yet i think it is due to a faint like reaction. I am not sure about the heart beating or sudden splitting headache you experienced. Sometimes sudden blood pressure loss does make my head hurt.

I dont want to be labelled crazy at 22 There are some psychologists out there who sepcialise in helping people deal with pain/chronic illness .. it makes sense. I mean lets say someone was abused, they may go see a psychologist to help them deal with the issues it caused and would not nessicaily seen as crazy. People with Chronic illness and pain have a whole heap of stresses and expectations to deal with, you dont have to be crazy to seek help (and they dont only help crazy people). although crazy is a annoying word ... those people with a mental illness are sick too. I personally think it must be one of the toughest illnesses to deal with.

I avoid dairy and gluten but am not celiac. My specialist said that the tests can be a bit off and so some people may be intollerant but they dont come up as cealiac. (they just dont have a MAJOR reaction). She just said do what makes you feel better (as long as your vitamin/iorn/calcium etc levels are good). I would advise you try avoiding the food and see how you go and next time you go to the dr you get a blood test (just remember that you will have to eat the naughty food to show a reaction in the blood test). Good luck! Hang in there if you do go on the diet ... it took me so long to learn to follow it .. it really isnt THAT bad .. but at first it seems like its impossible.

I cannot find you! give me more hints! hehe are you part of a college? if so what one? or are they mostly for undergrads .... im not sure how it works. I have seen inside oriel (sp?) and the one they used to film harry potter hehe they all looked really pretty though!

Happy 21st! have a wonderful day! i hope you feel up for celebrating

Im glad you had a good experience with her, i hope that it is able to help allieviate some of your syptoms

Hi morgans husband! i wish both you and your wife well in this tough time.... i dont want to forget how tough this must be on you as well as her. I too get paralysis that may last 10 mins. I have found my muscles need to be massaged strongly to be woken back up. Of course morgans body may be completely different but i just thought i would mention it as you never know what may help

I have to say that in some ways my OI/NCS diagnosis was a relief .... its a much nicer box to be stuck in than CFS ... people tend to roll their eyes at you when you mention CFS at least with POTS and POTS like illnesses they tend to have never heard of them so there is less stigma. That is my positive spin on it. I admit i was hoping to have a more mainstream illness. Sorry you are having a rough time. Are you getting treatment though? like the drs are trying to sort out what works best for your body? I hope they find some ways to help you achieve some normality... if they are not treating you then there is a list of drs on here that everyone tends to rave about As you have mentioned ... at least your not alone on here I was not sure if you were asking for a treatment plans? oh well here is mine anyway hehe My drs aimed to start me out on the least medication as they say other meds can have not so nice side effects like wieght gain and migranes etc so they just put me on florinef 1st ... plus non medicinal treatments, I am going to a hypnotist to help with sleep problems and going to a psychiatrist who specialises in anxiety and depression associated with long term illness (but suprisingly the hypnotism has done WONDERS in the department too much to my suprise). They also sent me to a physio who was lovely yet i cant really afford to do it all at once. I also get massages at least weekly. I have improved greatly .... yet if i go backwards there are other meds the drs can try (i think people on here take things like betablockers and mestonin .. i dont know much about them though sorry). I think alot of my recovery has to do with knowing i dont have cancer or some horrible disease ... as previously i always felt there must be something wrong to have me feeling this way, at least now i feel like i have a face of what i am tackling (even if the face is a little shady). (although when i was first diagnosed with CFS a sepcilaist told me i had hypotention and told me to fix it by walking and getting out of bed early .. 4 years later a local dr gave me florinef which helped MAJORLY and 2 years later new specialists explained to me what OI is and how it could be the whole cause and tailored medication for me. You are right when you say that most drs are clueless ... i wonder if i would have saved years if i had been treated for low BP in the first place instead of just stating "you have it".... drs can **** )

Yeh i did get a whole bunch when i was about 5 years old ... but i have not had the booster shots since. (i was supposed to get them but decided not to and my schools never really botherd to check) However if i go on exchange i have to get them done, im just not sure if the ones i got as a 5 year old count or not. So if i have to get new ones i will a little scared (im always paranoid about anything setting me back as i am sure most of you can relate too, but i realise to the outside world i just sound paranoid)

Happy Birthday Emily

Hi this is a bit off tangent but i am supposed to get immune shots for Measles and small pox etc. I was just wondering if thats a similar thing to flu shots? is it risky for people like us? (i have avoided them for years ... i got my rubella and i tripped right out.. it was such a strange reaction .. it was before i was ill too) Some people have suggested getting one at a time to stop the immune system being shocked all at once. I get quite sick if i use antibiotics ... i sets me back for about 2 months. I have no idea if these are similar or what.

Yay! Congratulations thats wonderful news. My Neurologist told me that one of the best ways to get over POTS or OI was to fall pregnant as it can increase the blood flow and allow you to get your body out of its old conditioning. (my boyfriend was not too keen on this method of treatment lol) I realise from reading this board that many find pregnancy tough but who knows maybe you will be one of the lucky ones that experiences a double miricle (or tripple if you have twins hehe) xoox