Evie

Sorry to hear that the disabilities offices is being rotton, but im glad to hear you are getting support from your tutor. Sometimes thats more important than the other offices as they are the people you have to deal with the most. Im really happy for you that you got someone understanding Best of luck and keep us updated

hi I too have sleep problems and was going wonderfully well on sleeping tablets. However my specialist said they can be quite dangerous long term and cause personality change etc (at the time i was thinking well without them im darn grumpy due to pain from lack of sleep so maybe we shold be worried about the short term personality changes? hehe) Anyway.. she sent me to a hypnotherapist. I was thinking OOOOOKAAAAAAY, righty O then. But hey i tried it, and im actually really suprised at the results. It did not happen over night, however i can say that previously i struggled to get to sleep at night and struggled to wake up in the morning (i woke up at 11 most days) ... now 3 months later i am waking up at 9:30. I have spent years (literally) trying to move my sleep cycle back and this is the first major improvement ive made in years. I admit i am on a very low does antidepressent to replace the sleeping tablets (doxepin 4mg). I just wanted to let you know that sometimes even if the symptom isnt caused by pyschological problems sometimes our mind can help us work around them. I dont know anything about biofeedback sorry, but i know i rolled my eyes at hypnotherapy, yet its done me the world of good. So yeh, maybe try it and see how it goes. You never know what may help you!

Thanks nina Hi amy Sorry just a few questions who diagnosed you and who have you seen so far? they should be able to give you references to other drs. Originally when i was diagnosed with CFS by Prof wakefield at The Prince of Wales Hospital who specialises in CFS. He told me i had hypotention and to get up each morning and walk (this was 6 years ago)... that was bascially impossible for me to do at the time. I suppose some drs know about it but dont tend to help in the treatment department. However he may know more about it now. Since then my local dr put me on florinef and as my cortosol levels were playing up i was sent to a endocrynologist Dr Katherine Samaras at St Vincents who referd me to a Neurologist Dr Garrick who diagnosed me with OI. However i am under the care of Dr Samaras, but as far as i know she does not usually treat OI. I just re-read what i wrote and that could sound quite convoluted. eek. Are you getting any treatment at all for your POTS? Have they ruled out any autoimmune problems or hormonal problems (like do you have tests that may say your cortisol levels or some other levels are out of whack?) I kind of got to her through a back door, im not sure if she takes paitient who would just present with OI (but its worth a check as she really is lovely) A friend of mine goes to Dr schloeffel at Gordon and says he is great. He specialises in CFS. I dont have personal experience with him, but i have seen her make vast improvements under his treatments. Im not sure if he knows about POTS but maybe you could ask his secretary as it does occasionally go hand in hand with CFS (as we know ) Feel free to PM me any questions if you dont wish to go on about it on the board.

Oh wow so much information It was Dr Low not Dr Ho! silly me. I just realised as a international paitient it will be quite costly as insurance wont cover it and it will be in US dollars. eek. I will definately keep all this info in mind and if i dont continue to improve i will consider which dr is most viable for me at the time. Its so confusing when symptoms seem to cross over so many different specialities.

Hi Paige, Wishing you all the best in working out whats right for you xox

I use to have exercise induced asthma (yet now i dont do exercise so i dont get asthma ). Although it did lessen as i grew older and it moved into me just fainting when i tried to play tennis or swim (previously i was quite good). I do have allergies yet since moving into an apartment in the city they have improved (bush is my weakness). Thanks for the yoga advice! ... i keep meaning to do it ... i will do it ... ive been so slack

Yeh this is pretty common. It has taken me about 5 years to not have a flu knock me out for month (now it only knocks me for about 10 days ... still more than average). I too got OI post viral. Originally my ANA and T cells were down however over time they picked up. I dont have any scientific info (or much understanding of it) unfortuantely. Hopefully someone else more knowledgeable on this forum will be able to fill you in Im sorry that i cant give you hints on how to maker her feel better, i too can only think of rest and maybe making sure she lies upright and moves a bit so she tries to stop hypotension setting in further. Best of luck!

Does anyone do exercises to improve thier breathing ability? (or strength of mucles around chest) If so has it helped your situation much? I have a theory of whats causing my OI (or is a major component). I think it may be i dont breathe properly. When i started getting sick a rib in my chest popped out of place and it was quite painful. It has never gone back into place but has stoped hurting as much. The drs were all a bit confused by its appearance. Then i got glandular fever and treatments focues on my immune system. I found when i was quite bad i didnt have the energy to take deep breaths and now i find that if i get a massage and get rid of the pain in my muscles around my lungs i can breathe better and therefore feel better. (sounds obvious i know) So just thought it may make sense that it could cause most of the feelings od dizzyness or weakness etc (unsure if it would lower blood pressure but i think it would)

Thanks so much guys Yeh i still dont know what 'group' i fit into.... i just had a situation where when i stood up id get dizzy or faint (especially in mornings) and i occasionally randomly fainted. Other times i just generally feel lethargic and stoned (i dont smoke pot so thats not the cause of that feeling heh). My eyesight etc tends to be foggy etc. (but i dont need glasses as other days its fine). Also just have general muscle weakness that varies from day to day. That all fits into a OI catorgory? I hope so .. at least this way i sort of have an idea what im treating... with CFS im in the dark. However i was worried i would fix my bloodpressure and then i dont really know what to do next if im not all better.

Hi Maureen I dont have any extra advice to add i just wanted to say that one of the most helpful things you can do is support and believe in your niece. From your post it sounds like you are really doing that already and that helps sick people so much, especially when its a not a very mainstream illness. I hope you find the right drs for your niece, best of luck!

Thanks for the responses! where is Dr Robinson stationed? Dr Grubb is in Ohio is that correct? Yeh. I suppose if i did stop improving or got worse my drs could try other meds. Its always nice to dream that there is some dr out there who has special capacity to understand my body and help me fix it or see something that other drs have missed! (yeh keep dreaming lol). However if he has info before the other docs it may be worth it (or be a guinea pig in a triall). Does Dr grubb treat CFS Symptoms too? My drs think my CFS was caused by OI ... i hope they are right ... yet there seems to be so much more wrong with our bodies and its reactions that i dont understand how they correlate to OI. (like our chemical sensitivities etc)

Thankyou kristen ... thats a sweet thing to say I hope you manage to get back to school in time, or that you work out whatever is best for you. Money is such a stress grrrrr BTW for all those who think i may appear super active... you are just seeing me at the end (or hopeful end) to a long bumpy road. It did take me 4 years to do a one year course and its taken me a year and a half to do first year of uni, so i by no means want it to look like im crusing through while being ill (not saying that you think im crusing ... i just remember when i was bedridden and id read about people doing all this stuff and id think heck how did they manage that?). I hope you are able to go to your daughters graduation Finrussak! i will cross my fingers for you

Hi everyone Because it looks like i will be comming to the states next year i thought if i have not fully recoverd by then i may as well see the top docs while im over there. However i dont want to waste their time. I am under one of the best neurologists in Australia and a wonderful endocrinologist who really fights for my case (i dont officially fall under her yet she still treats me even though her waiting list is 4 months long). I can handle part time study and occasional exercise these days. This is such a huge improvement on previous years. If i start to go backward my drs said there are ranges of treatments to go by (and they have given me lots to read by dr grub and dr ho i think it was)... so they are in touch with these drs research. My main question was do these drs try 'new' things that my drs may not be aware of yet? Or do you all basically get similar treatments just slightly varied to your personal responses? Have anyone of you been on the road to recovery then gone to these drs and they have helped you yet again? or is it the case that most people go to them at thier worst as they are the best and then they recover ?(hopefully) From the sounds of it i will have to book way in advance so i just need to work out if its worth it or not. sorry also who has helped you the most? is it dr grubb or are there other drs you would recommend? .... i was previously under the banner of CFS so if anyone knows any super drs who know about both OI/NCS and CFS please let me know

Wow thanks so much for the replies ... it makes me feel better that there isnt a school that everyone is saying DONT GO! Im planning on going second half of next year. So that would be sept-december 2006. (i think thats your first half of school?... in aus we go via the actual year due to being in the southern hemisphere) The exchange program works like this, i write three options and order them in preference and depending on competition they will try and get me into my highest preference. Aparantly it changes from year to year what is most competitive, however berkely, UCLA, Georgetown and Boston are usually quite up there. (they usually let law students go to boston i think as its supposed to be known for its law college?) I think i will go 1. Austin 2. Boston 3. Chapel hill and shall see where i end up *eek* Im still frightend that im throwing myself in the deep end. Yet i really want to prove to myself that i can do it alone (or semi alone considering my parents are helping with most of the financials). Has anyone here gone away to college after they were diagnosed? (i guess your not on the other side of the world from your support group though heh..in some cases i suppose its still a vast distance). Was it scary? did you manage it? Oh also i was wondering about the dorms, it seems that they are mostly shared with a roommate? I was wondering how well that works. I really need my sleep so was thinking of paying extra for a single room yet i dont want to put more financial strain on my parents unless i really have to. I thought maybe having a roommate would be a big part of the 'college' experience and be beneficial to my trip or it could be totally horrid. I realise it would depend on person to person but in general would you say having a roommate works well for people with pots or should i avoid it? (sorry i realise that is most likely a personal preference question its just that i am a only child and have not lived with other people much. I did board at school for a short while but i had my own 'cubicle' so it was not a shared room as such, boarding drove me nutty due to all the rules and regulation of time)

oh i love oxford! i had a friend doing Undergrad there and we visited her once. Im glad you are enjoying it so far best of luck! what are you studying? (sorry if thats already been coverd)

Oh i love woods! I have heard the campus is pretty. I thought it was inland i didnt realise there was a beach nearby Im lucky as my grade will be transferred as a pass or fail ... so hopefully i wont fail anything. I have never failed anything before and usually get really decent marks ... im just unsure about not having my support network around me and how much of my marks i should assosiate with them heh. Has anyone who has studied found the disability units helpful? In aus i get alot of help so hopefully it will transfer over (notetakers and computers in exams and sometimes extentions if i have a major brain fog)

Yeh i heard texas was known for parties too .. that was my main reason for wanting to go there lol (in the hope that it would be less stressful academically if i do get sick) I want to try for georgetown the following year (although my lecturer said that another student went there and found it alot easier than where i am atm which suprised me). Im not too worried about drs knowing about POTS as such .. i am more NCS and i think i should be ok and can bug my drs back home if i need to. I am more interested in the people and if they were friendly or not(especially if i fainted in the street). I realise you get idiots everywhere but i thought there may be areas that are more 'friendly' than others. I was worried about getting around boston ... i know that i would have to live in an apartment off campus and if i was tired i didnt want to have to travel far to classes. However since i was 12 i always dreamed of going to college on the East coast (Brown was my dream .. i didnt think about $ back then lol). Is boston very hilly? Someone told me NC was humid while texas tended to be more of a dry heat is that correct? thanks for the offer of finding out stuff for me, i appreciate it! if i can think of less general questions i will keep you in mind

Hi everyone! Since alot of you are from the US i thought it may be a good place to ask about these areas. I am applying for exchange the second half of next year and was looking at universities in these places. (Uni of Texas-Austin, UNC Chappel hill and Boston College) I was worried about workloads and heard that Austin has the most laid back atmosphere and it allows me to live next door to the university if i wish, so i have made it my first choice. I was wondering if its very hilly or anything else that is non pots friendly? (i realise its hot... i cant seem to win though .. i either get heat or snow) Sorry i know it seems a bit of a random question i just really have no idea what to expect from these places and looking at thier websites doesnt tend to cater for many POTS concerns. I was also wondering if a city like boston would be a bit more threatening if i happend to faint or get dizzy compaired to a College town, i am not sure if attitudes towards people change much from place to place. I would be grateful for any advice on any of the options. Thanks so much

I am doing my undergraduate major in history and minor in philosophy and womens studies. I was wanting to do psychology and then help adolescants with chronic health conditions but i could not keep up the hours involved. Its not bad though as I love what i am studying and my lecturers are so supportive. Both my parents are academics and i hope that i can pursue that line of work *thinks about the years of study ahead* At the moment i am doing two subjects a semester. Thats 6 hours a week. I tried 11 hours last semester and collapsed in a tutorial, it was rather embarassing as all i wanted to do was get out of the room but i couldnt walk so i kinda crawled out the door heh. I think i am getting better and it may help if i push myself so I am going to try 3 subjects next semester and thats 9 hours. *fingers crossed* Then after that im applying for a exchange to University of Texas-Austin.... i will have to do four subjects and be on my own. I feel like its something i really need to do to gain independance but i am terrified i wont be able to handle it. (if anyone knows anything about Austin please let me know! ... i may make another thread about it, i want to know if its pots friendly or not) My advice is keep trying. I have tried to do full time 3 times now and the first two times i had to drop out for a semester yet last time i managed to just drop a subject (psyc). I figure thats an improvement Its really heartbreaking each time you have to pull back yet i have found it really is two steps forward and one step backwards. Atm i am very variable, the past week has been a bit rough yet i have found i can still push myself further than i use to be able to and the recovery process is getting quicker. I ran down a hill the other day (ok a short hill but still i was excited). Apart from that i avoid exercise's other than walking or stretching. I have never had a job so im not very helpfull in that department. I feel a bit pathetic about that, 22 and have never had a proper job. I am applying to become a mystery shopper! i hope i get it, as i can choose the hours and take it when i feel up to it or have breaks from class. What do you enjoy doing/learning? Its so hard to know our limits .... i make plans in the hope that i will be able to achieve them, yet i try to have a backup in case they are too ambitious (it doesnt stop the emotional roller coaster of not knowing unfortunately) . Good luck with finding your limits and then trying to break them

haha yeh jessie spencer was the hearthrob boy in neighbours when i was about 14. I am glad he has 'made it' in the US industry, so many teen actors leave australia and end up waiting tables in hollywood.

I had a local a week ago and i was fine the following day but after that my CFS/NCS has been playing up. Its a tad depressing after being on such a nice recovery for the past few months. Thats life i suppose Yesteday i had one of those times where my muscles all go to sleep and its tough to move ... i dont know what its called however i assume its a common POTS type symptom. Have any of you found that local anesthtics (sp?) have messed with your system a bit?

I have been on other forums where new people get ignored, its really horrible. However i have found this board isnt clicky, so please dont think it was a personal thing against you being new. I tried to respond to your question about cortisol (sp?) a few weeks back (i think that was your post?), i hope you foudn some answers in regards to that area. I have not been on this board as much lately as i have had lots of essays and study, it seems alot of people have been out of action lately ... im sure we will all do our best to make sure we dont miss your posts in the future

haha yeh it amazes me when people think you are making yourself sick and you have that much power over your body .. you would think if you had that much power you would be able to make yourself healthy ... i dont know why people are so keen to assume we WANT to be sick ... its just irrational. *sigh* Glad your neurologist was able to give you some answers deeplyset

I am about to go to the dentist now actually! I think i will get a local and some fillings today, i have this week off class so i thought it would be a good chance to see how i went with a local. Gosh I could not imagine having my wisdom teeth out with just a local, im glad it worked for you! ... i have suggested it to my dentist but he advised against it .. i will bug him again today heh. Last time i saw him i had CFS diagnosis so now that i have OI it may change things in his mind. I have printed out the what to avoid part of this website to show my dentist in regards to the anesthesia. Its good to know that pretty much all of you were back to yourselves in a week. Thanks guys i am not so scared now

I think i get that type of headache... if i stand up or turn my head its like someone has punched me in the head the pain is so sudden .. yet if i am still its basically fine. Sometimes the pain is so hard that i actually scream "OUCH" ... if im in public it confuses people around me heh. Sometimes i get them with migranes (where i see flashing lights etc) other times just on thier own randomly. ... im really not sure what causes it .. i am on florinef and i had not realised it could cause problems before.