Evie

Hey, Im not part of the US college system but at my uni the prof's have been great. One class gave me a 6 month extention to hand in my work (they basically said hand it in when you are able to do it). I just want to say to rachel that there is no need to feel bad for asking for extra time ... i know it would be great to feel normal and be 'just like everybody else' but the normal kids struggle sometimes let alone people with illness. I realise you have likely heard this all before... just know you are not alone with trying to balance being normal with asking for help

I cant take much ... i am on 150mcg a day ... i went up to 200 but it make me so irritated ... it was like i was all speedy and i could not stop fidgetting and it made me not feel the best emotionally ... yet if i lower my dose i am ok. Have you tried limiting your dose? That does sound horrible ... Maybe its a combination of things .... maybe when you are on holidays you could try florinef again to see how it is without stress as a factor? Everyones different ... I hope you manage to sort out why your body is reacting so badly.

Wow the disability unit didnt inform your lecturers/tutors? did they say that they would? You have had a really rough deal It is nice to hear that you are getting such strong support from some people though.

Oh a fellow aussie! I find i cant take the aussie bushland ... i improved ALOT when i moved into a inner sydney apartment ... if i go to my boyfriends house in bushland/suburbia i tend to get dizzy and faint. I feel bad as his family never see me in my 'better' form. Melbourne has dampness ... maybe its a mould or it could be a plant? Could it even be the tap water? (i get sick if i drink tap water)

I was diagnosed with ADHD for years ... but for being under active not hyeractive. (so i suppose its hypoactive). I use to fall asleep at school as a child and struggled with certain motor coordination. I was on Dexamphetamines for years but took myself off them about 5 years ago. I am not sure that there is a relation between my OI and ADHD diagnosis .. its possible ... however i know i went backwards in regards to learning ability once my CFS/OI hit me a few years ago, so i am assuming they are not caused by each other but can effect one another possibly.

I saw my specialist once every 3 or so months ...however now i have a diagnosis and i am improving on my own she is seeing me next march. So thats a 5 month break. I am in a different country under a different system so i dont think my details are much help to you anyway... that sounds strange that they expect you to see someone constantly? gosh you would have to constantly be on the waiting list

My specialist told me that swimming and yoga are the best exercise for me and not to push it too much or i will just collapse (if i exercise i usually end up fainting) I have been pretty naughty and have not done as much exercise as i should... i do walk alot though. Unfortunately i cant swim in public pools as chlorine makes me feel really ill or triggers asthma. However i think it is less stressful on your body so maybe thats why you can cope better with swimming Can you control your weight through food? (sorry im not trying to suggest you eat too much ... its just thats how i try to maintain weight as i cannot exercise it off like most can). I hope you manage to find some balance ... its hard for everyone when they are unfit ... but its even harder for us when our body wants to conk out doing every day activities let alone a work out. Oh and just a question for those who use tred mills ... do any of you suffer dizzyness from them? if so how do you combat it? I have a gym downstairs and it has all these super machines yet i get really dizzy from using them.. i think its more to do with balance than body stress though..

Hi becky, My mum took her employer to court for stress related stuff and won. It took years and it was really tough on her but in the end i think she wanted to let them know they cant get away with treating people poorly .. even if she lost she still cost them time and energy to think about the matter. I think you are right on the ball about not going down without a fight (of course thats a personal choice each individual has to make) ... Wishing you all the best and sending you thoughts of strength.

I remember when i was orginally really sick with glandular fever, i was also getting brain swells etc ... but there are about 3 weeks that i dont remember much of .. i just remember angels being around my bed ... from that expereince i too dont fear death (just the form in which it may come heh). I realise most people may say i was just having brain swells so was going a bit looney ... I have to say that illness made me more "spiritual" I was thinking of making a post asking if people found they became more spiritual from the expereince of being ill but was worried it may be considerd off POTS type topic. ...

I go through many days feeling "stoned" as my eyesight is all blurry and the light can hurt my eyes too .. then other days im fine .. then the next day i may find it really hard to judge distance so i run into things alot. I have found its all OI related ... but its always best to check with a dr as these sorts of things can by symptoms of so many ailments. Good luck

No we are not alone Cornia When i hit the ground i sometimes have fit like shakes ... i hate it as i am aware and it makes me feel so vulerenable. Like once i fainted at my old house and we had a indoor balcony and one side of my body fell over the top of it while my feet where on the ground on the corridor side. I was having the fit like shakes and could note move or speak and all i could think in my head was OMG PLEASE DONT FALL OVER. Yeh the drs have said i have both syncope and near syncope ... in hospital i would stand up in the morning to get blood pressure taken and after two mins be on the floor .. the nurses kept asking me questions to check i was not "just falling asleep" ... then i had a fit on them and they all freaked out and were like "wow you really cant help it can you" lol Yeh i was just wondering why my brain does not shut off yet most peoples does ... at least now i know im not alone thanks guys!

I was just wondering what everyones experience was when they faint. I have heard that most people blank out and then wake up on the ground Yet when i faint i am aware that im going down and am aware that i have fallen but i cannot move my body or make sounds, my mind however is awake the whole time. I was just wondering if thats a common expereince or not? Im not sure if it makes a difference or not to my general health situation... does anyone know? thanks

Hi Cimyss Welcome to the site! I dont actually have POTS and have not gone to a cardiologist so i am not going to be a good source for advice. I just wanted to welcome you and let you know that others will be able to give you good advice (just in case you are waiting around the forums for a response and have you recieved one yet). Best of luck with the vist, i hope they have some answers for you and your daughter

How horrible for you! Ive been fairly lucky yet i have had people yell at me when i hit the ground as they assume i am on drugs or something (i want to scream at them but i cant move or speak at the time). Another time i was sitting down in a popular food court in sydney and everything was spinning around me, my boyfriend was on his way to 'save me' from the other end of town (he managed to get there and find me in less than 5 mins .. i was quite proud of him) ... but anyway i was crying and my head kept falling to the table and nobody asked if i was ok for quite some time ... finally a lady asked if i needed ambluance .. she was lovely. But the amusing thing is that she looked like a bikie ... she had a shaved head and a leather jacket, all the 'nice conservative' looking families around me just ignored me. People can **** sometimes ... yet other times they are wonderful ... *sigh*

At least others that responded mentioned how much of a twat his response was ... i think those comments are seen by the majority to say more about the person who made them than who they are aimed at. I am a mod on a large forum and sometimes i let those comments slide purely because it shows others what they are really like and the majority of the time they will be put in their place by thier peers. (i like it when that happens ) Does the large post help you any? the one that talks about going to certain officals within the uni and your legal rights? or have you tried all those routes? Maybe you should seek legal aid? that may force them to pay attention. Im so sorry you are having these troubles .... i really am thinking of you xo

No you are not a freak It is hard for people who dont see us in the 'tough' times to understand. My dad saw me in the tough times and still found my moods hard to deal with and i think he took it somewhat personally. (its understanable if they have not experienced health issues i suppose) I cant blow ballons up let alone blow bagpipes!

Hi Melissa, Wow the logistics for getting around your university sound really tough. I thought by law all areas had to be accessible for disabled paitients? Or does the unsafe van count as access? maybe you could explain your situation to the councellers and maybe one of them could meet you somewhere that you can access safely? given its the councelling unit you would like to think they would be compassionate. Hang in there! i hope your ear feels better soon from the antibiotics... i hate taking too many antibiotics to .. but ear infections are SO painful and thankfully they react to medication well.

when i use to feel constantly naseaus (sp?) and my body hurt alot i use to get REALLY irritated and get pretty rotton to be around. (my poor family). Once those feelings subsided so did my moods. I always put it down to toxins being stuck in my body and making me feel ill and body hurt .. and they also affected the mind... i still get it from time to time but on a less regular basis. Migranes can also make me go whacky. Hopefully yours will pass with time *fingers crossed* .. or hope you may get some answers at how to deal with it in the meantime.

Hi Julie, You mentioned that you wish it was fibromyalgia as it can be fixed, i was just wondering what treatments there are for it? (i suffer from it and as far as i know there are none... maybe i am out of the loop) I use to be diagnosed with CFS and i think i understand what you mean by it feeling like you are walking through mud. Each step i use to take i would have to concentrate really hard on as it was such hard work to put one leg in front of the other and to keep going. Of course these things are hard to explain with words and you may be experiencing a completely different feeling, however he may be right that its connected to CFS. Best of luck with the further tests. I hope they find a treatment plan to help you deal with your neck pain! (amoung other things)

Well a big thankyou to michelle! (im sure alot of people have said it, but i have not previously as i was not aware, so i thought i should send a shout out to her) Maybe we can find someone famous to help hehe. Im sure there would be at least one famous person out there who may have slight symptoms. *goes hunting*

Good luck with the further tests .... maybe if its not POTS then there may be some more answers and more knowledge on how to treat it... i hope that they find some answers for you. Waiting for answers is so stressful.. wishing you all the best

In previous posts where i have said i like the fact that people dont know about OI related stuff as it avoids preconceptions i was not trying to be overly negative. I realise we all want the right information to be sent out there to avoid false stigmas overriding the 'offical' information. I think its wonderful that you are all working together on this I have qualifications in marketing .. while im no WIZZ (although due to OI/CFS it took me 4 years to do a 2 year course so i do feel like i have double the qualifications so am a semi wizz hehe) if you ever need help or another perspective feel free to ask! (or im offering right here hehe) Its pretty much common sense but the best ideas are often the most simple and most easily recognisable. I keep hearing the name Dr Grubb, is he or any other dr responsible for organisting DINET? ... are there any specilist who would be willing to 'back up' the cause? People seem to pay more attention when a dr is involved. Teal was the colour of my school uniform haha. It can be a nice colour, not sure about being head to toe in it though

Ok as far as i understand the body creates cortisol to wake you up and give you energy.. you should have more in the morning and less at night ... so if its the other way around then it could make your sleep patters wonky and that could lead to trouble functioning 'normally'. I hope thats correct.

I have no idea what my records say (i dont think i want to know eeek)... i think the system in Aus may be a little different as when i have moved drs i have never had to give old records. When i go to doctors lately i tend to be a mess .. for some reason i find talking about everything really emotional and i just want to cry ... i must look like a complete nutball. Good luck with writting your letter Even if it does not give you the response you are wanting at least you know that you 'stuck up' for yourself. It must be tough being a dr though, i find the best ones are the ones who have sufferd illness themselves.

Hi, I had low cortisol levels and low thyroxin so my endo thought i would have a pituitary or adrenal disease. It covers pretty much all the OI/CFS symptoms. However when i got the tests done again they came back negative so that lead to my OI diagnosis (in consultation with a nurologist). So yes as most have said it does follow the symptoms When i came back negative my endo was so excited .. i cried ... i wanted to have a pituritary disease so it could be treated. Good luck with the treatment or tests ... i hope you find some answers