Evie

They thought you were pretending for attention? how horrible! Did your other drs dismiss the shrinks claims or did they treat you differently after that? deeplyset, i have woken up paralyzed but aparantly thats quite common even in people without pots. Sometimes when its a POTS type thing i will not be able to get up off the bed for about 10 mins but i can wiggle parts of my body but i dont have the strength at that time to lift them up to move. What you experienced sounds horrible .... it could be agood idea to test potassium like morgan suggested or magnesium as thats supposed to help stop muscle cramps ... However i suppose muscle crams are not paralysis are they ... I hope you find some answers .. good luck!

Thanks for your replies! Its good to know that most people recoverd fairly quickly and had no complications My specialist advised that i have it in hospital (like most of you did) so i will have to bug my dentist about that next week when i see him. I dont want to get it done till december as that will mean i will have at least 2 months to recover before i have classes again (i am trying full time next year so need to be as healthy as possible) I suppose wisdom teeth removal is unpleasnt for everyone ... i hear so many scary stories from friends who dont have health problems ... then i thought that maybe the fact that we are use to pain can actually make us stronger than my friends who may not have experienced long term pain. (i hope thats the way it is anyway hehe)

yeh my hands/fingers/feet go blue and tingle or get this strange numb burning sensation. I think for me its due to poor circulation

Sorry to hear, I hope your body picks up soon and you start to feel better. (or as better as possible) Oh stupid bloodwork. I know people always say you should be happy that you dont have many of the diseases or disorders they test for, however that doesnt change the fact that you still feel so sick. They thought i had something semi fixable a few months back ... tests came up positive .. they did them again and they came up negative so i was back to square one. I cried for days as i really wanted one of those treatable/manageable diseases (like most of the people on here want) The dr blamed the lab ..... i blame my body heh .... Does anyone else experience random changes of positive and negative results?

Wow ... yes thats what i am worried about heh. how horirble for you! See our dentist is a family friend ... i know he is alot more gentle than other dentists ..... he doesnt hurt much when doing fillings etc (ive had some horrible experiences as most people have) so i was liking the idea of him doing it as i know he wont just madly drill and break my jaw as i hear they can do at hospitals with the whole quick in and out mentality. However im worried my dentist doesnt understand my whole dysautonomia things (well previously i told him i had CFS ... so maybe he will understand a bit more about dysutonomia) ... it would be done in a small practice with anethetists and nurses etc then there is a major hospital a block away if needed (however all my specialists are at another private hosipital) I guess i will just have to ask my specialist if she can advise on anyone who knows about dysautonomia .. is it commonly understood by anethatists? sorry about spelling heh. also drips etc scare me .... my veins are really fragile and hurt (also prone to not accepting drips so sometimes they want to use veins in my legs eeek) fluids would involve drips wouldnt they? darn why do our bodies need to complicate things so much heh

Congrats on being signed up to a label! good luck with the release! Is that what Mestinon does? rehydrate your bodies organs? (i suposse its a tad more complicated than that)

Hi everyone I need to get my wisdom teeth out but i am chicken. I am worried about the anesthesia effecting my body and for it to take months for me to recover. I was just wondering about other peoples experiences and any advice you may have? I have put it off for over a year now. I figured i am use to putting up with pain so i can handle my jaw hurting, then i thought that maybe i would actually feel better from having them removed and it could be beneficial for me. (i know that sounds really obvious... but the fear of making my OI worse usually overrides jaw pain). I went on the pill a few years back and after three weeks i could not walk. My body is really sensitive to medications. I do realise the pill is very different to anesthetic, yet the fear remains. I am seeing my specialist on wednesday so i will ask her about it. However she isnt a specialist on OI so much (she is a endocrynologist) so was trying to work out the right questions to ask. Thanks

My legs sometimes get to wobbley to hold me up... Is that what you mean? I will walk down the street then suddenly they just start shaking and its either lay down or fall down. (occasionally i can fight it but its quite difficult) Sorry i dont know what EDs is so i dont want to assume i am experienceing the same thing as you.

Just cry if you need to ... cry cry cry (like you can stop it anyway hehe) Feel sorry for yourself for a while .... its heartbreaking. Similar thing happend to me last semester...I was so sure i was ready for full time...i cried for a week. (and i still randomly cry out of frustration). I was only doing 11 hours and moved down to 6... you were doing 25? WOW! That was one big effort for you I hope that the 6 hours works out for you, and your family sound wonderful (comming to do your laundry etc), here is a big net hug *HUGS* I wish i could say more to make you feel better, I think you were really strong to have tried in the first place... its so scary!

Hi Pamela, My skin gets dry and itchy. Its so annoying! I dont know about hte brusing... it sounds like you get quite a strong reaction. Maybe someone else on here will have experience with it or the cardiologist will be able to help I use to get acne when i was at my worst... mostly around my glands on my throat. I would also get these wierd bumps on my shoulders and chest that are like pimples but they were hard and hurt. At the time we thought it was just a signal of my immune system being weak or too many toxins in my system. I found that stimulants made them worse .... coffee and dexamphetamines and i also find that fludrocortisone can bring them on if i take a higher does. I dont think there is one answer, have you been able to ask your doctors? Usually they will know if acne is a side effect... however we tend to be super sensitive freaks on here haha, so maybe its not a commonly known side effect.

Hi Lizzy Yeh it can be annoying when people constantly bug you about your health when you are trying to be as 'normal' as you can be. On the other side of the coin its annoying when people just ignore it. Maybe you could tell them (in a nice friendly tone ... otherwise they may jump on the defensive) that you will let them know if you are worried about being outside alone and will inform them of your bad times .... but that you would prefer to try and be as normal as possible and not think about poor health in the times that its not impacting on you TOO strongly. I mean it makes sense that when someone asks you those questions that it actually can make you feel worse, as you go inside your body to seek out how you are feeing and you notice all the bits of your body that hurt or feel weak that you may not have noticed before. Stress is a major trigger for me. Especially with school work... however i suppose in someways thats a physical trigger isnt it. It drives me nutty when each time i leave my room or see my parents they ask "hows the essay going" .... it use to trigger a stress response every time they said it and id just scream at them to please not ask me every time i see them as it just freaks me out. They really didnt get it, i understand that it was irrational on my side. Its just that i was already always thinking about it so when people add onto that it does get frustrating. Thankfully i am not as stressed as i used to be (or i think its more that i am healthier so it does not take so much energy to do things). Obviously i dont know you, so i dont feel its right for me to dismiss your drs suggestions. However it does seem that alot of people on this board have been put in the psychological basket and then later found out that it was purely physical all along. That does not mean that its the case for everyone though. Its such a messy thing diagnosis... if one thing in the body goes wrong it effects so many other parts. (personality especially.... why the **** wouldnt you change personalityor at least bring out new characteristics if the whole nature of your body has changed and you have to deal with a whole new world GAH) It sounds like you are on the ball with trying to not let it rule your life...

Heya I know a little about low cortisol as my bloodtests said they were low a few months back, however this is in laymans terms...i could be incorect or missing major parts. Ok as far as i know cortisol is a hormone that is supposed to help wake us up and give us energy. It is also released when we are stressed, it helps with the whole fight or flight response and winds our body into gear. It is usually different levels at different times of the day (higher in the morning and lower at night). If this is low then it may mean that your body is not producing enough and can point dr's to other disorders going on in the body such as pituitary or adrenal or thyroid problems. (at least thats what they checked out for me, you have other symptoms that i didnt so it could change matters). I hope that will suffice until someone more knowledgeable on the matter comes online and fills you in Good luck with your tests! I hope they are able to find some answers for you.

I think i have had that feeling. I felt extremely nauseas (sp?) constantly for about three years. It would feel much better if i lay down. However mine was situated mostly in my throat, it felt like i was constantly gagging. Thankfully this passed ... Have you tried different diets to see if its a food alergy? I wish i knew what was happening in my body when i got that feeling ... but ive never really found out. All i know is that a change of diet helped (gluten and dairy free) and that it passed over time. (also i think it may have been due to really swollen glands... which sounds obvious but a doctor never said thats what caused it) sorry i cant be of more help. Hopefully someone else has more answers for you. However just letting you know you are not alone in feeling sick to your stomach

oh congratulations thats wonderful that must feel wonderful to be getting on top of your anxiety! Did you get classes you enjoy and a good timetable? (sorry just thought id throw in some normal non health related questions)

haha oh no .. it does get embarassing sometimes ... i remember i was helping out at a conference and the head academic lady (who thought she was super important... so everyone was running around after her) ...she kept asking me about sound equipment ... i could not remember the word for headphone or microphone so i just sort of stood there making strange noises and signs with my hand for about two minutes ... she gave me lots of strange looks... i better not want to study or work at her university anytime soon haha. For a similar reason my year 10 chemistry teacher thought i was really slow (plus i use to drop things all the time due to shakyness caused by chemicals) and would talk to me like english was my 2nd language. When i nearly toped the class in our year 10 exams she was so shocked she said "Wow eve you did so well!" in front of the whole class in this "wow i have a really super retarted girl in my class" kind of suprise. I feel really sorry for people who do suffer retardations or strokes as it must be annoying to have people talk to you like you cant understand 24/7. I dont understand people who are stoners .... i spend most of my time trying to make sure my mind is fully funcitonal... they try to avoid it.... oh im so jealous .. if only we could swap minds. (without the addiction)

Yeh i agree the best way to make it go is to try and sleep it off ! ... however this has a negative side long term as your sleep patterns get screwed up and then you may find it hard to sleep at night and hard to be awake in the day. Have you found this has happend to you linda? or have you managed a way around it .... please share it with me if you have! hehe. I spent years sleeping until 11am to try and make sure i didnt have so much pain and brain fog. No i am slowly working to push my time clock back so i can wake up before 9... ive made it to 10am ... well the past two days i have .. its so exciting, i hope it lasts. So yeh, just letting you know i too know this feeling. Its really horrible. Especially around times when you really need your brain (like exams or essays). I think mine gets really bad when i am stressed and exgahsted (sp?). Usually at the end of semester. However over time i am getting it less. My personal way of helping it is drinking earl grey tea ... i think its my answer for a caffine addiction. I wish i had something more medical to advise

Im heading to the US for exchange next year .... im terrified! hehe. I rely so much on my parents and boyfriend when im sick, yet i would really like to know that i am capable of doing it alone (or at least i gave it one giant big shot) So if my parents are in Australia i cant fall back on them. Such a scary thought. I have improved alot since the drs upped my fludrocortisone... yet i have never had to live by myself or do four subjects (in australia for my course 3 subjects = full time). It looks like i will be going to University of Texas-Austin, Boston college or North Carolina - Chapel Hill. Has anyone got any advice on these options? Susie, in my research i came across this website. I dont know how much truth is in it since i know little about the US college system but it may be able to help you find colleges that are disability friendly! http://www.newmobility.com/review_article....2&action=browse I guess you would have most likely have already googled that yourself though. Illinois looked really good .. shame its in cornfields, not sure there would be many nanny jobs there.

For me it has gotten better, however i have always been a bit dyslexic (sp? ... yeh great one ... cant even spell the label lol) and since i got sick it became alot worse. I find writting is the worst for me. I write words all jumbled up and its really messy. I type in exams and it helps me alot. So yes cognitive impairment can get better.. im not sure if it 'goes away' though. lets hope it does ... maybe when i get better i will no longer have dyslexia haha

I crave water in the night alot. I have since i was born. However isnt this fairly normal? (feel free to tell me ive been strange since birth hehe) I spent years trying to avoid salt due to high cholesterol so it is a bit strange for me now to go out with the aim to eat it. I am worried about my cholesterol levels actually. I will have to ask my dr if the salt intake is ok or not. I agree with taylors mum that cravings can be our bodies way of telling us what we need ... i just wish mine didnt tell me i need chocolate so much

Glad you said that becuase yes, i often feel down, it drains so much energy i cant be bothered to do anything, aches and pains can hardley be felt as i could care about them when i feel down. <{POST_SNAPBACK}> I suppose thats where depression comes in. Aparantly its a common symptom of depression to have no feelings. Although after a while i just found my emotions came back but i didnt have the energy to express them. Id feel mad but didnt have the energy to scream. So i dont think its all depression. Thankfully it passed as i got healthier, i hope it does for you too baby boy

Hi Dayna At the beginning i think i spent about two or three years constantly suffering Nausea. Thankfully its much more rare now. I went on a gluten and dairy free diet and that helped me alot. I still get nausea when i faint but its not constant like it use to be. I realise yours could be a completely different cause so of course you should check with your dr if you are wanting to try it.

yeh When the bad periods got shorter it was not so bad. But at the beginning when i knew a bad period would set me back months (well after i got back enough energy for emotions) i would be really upset. Now they dont tend to be so long so i dont get so upset. Has anyone else found that when they are really bad even emotions take energy? to much energy to really feel them? I remember that was the strangest thing for me .... not having emotions. They slowly came back one by one as the pain and total exsaustion (sp?) went away

Patti! I was 6 weeks prem, got broncitis every year for about 3 or 4 years (had to go on fludrocorisone for it once and was never the same after that) then caught glandular and from then on its been a real struggle. Your daughters start of her illness sounded familiar to mine so just thought id share that (however i think you are right that it could just be a viral thing and the continuious sickness lowerd the immune system allowing for more virus's to get in)

Patricia, I remember when i was a teen going through this. For quite a few months i could only eat rice and fruit juice. Previously i had LOVED icecreams and cakes and pizza etc. For some reason i would always ask my mum if i could eat things, i knew that the answer would be no, but i wanted someone to get cranky at. I wanted some outside force to be the one stopping me from enjoyment so i could be mad at them. I was struggiling to know where to aim the anger or blame. I know it sounds really stupid, and i still get annoyed every now and then but thankfully i got over using my mother as the sounding board of my frustration. I realise your daughters anger is over much more than ice cream.(as was mine obviously... ice cream and cake was just what brought it to the surface) However maybe its just a similar thing, maybe she isnt really mad at you, she is mad at her situation and you are unfortunately the target of her frustration. Luckily i grew up and realised my health is my responsibility. Its just hard as a teenager as when you are younger your mother always looks after you when you are sick. Usually as a child you recover from your flus/colds etc. It can be a tough jump when all of a sudden your mum cant fix it all for you. I dont know your daughter or you of course so obviously i dont want to assume to know whats going through your minds. I am just speaking as a teenager who went through CFS and OI. There is alot of anger there and i did occasionally take it out on my mother, but deep down i knew it was not her fault. I just didnt know how else to vent it at the time as i didnt have the energy to punch walls or scream. I hope the situation improves for both you and your daughter.

Oh wow thats wonderful! I know when i use to find reading too hard it was very depressing as i love reading. Thankfully i am able to read again. I am so happy that you are able to enjoy books again too My fave book is Mists of Avalon by Marion Zimmer Bradley, its the King Arthur tale written from the females perspective. Its not wishy washy fantasy, its solid fantasy (if that makes sense? heh) I recently read The Red Tent by Anita Diamant. I found it took me a little while to get into but once i did enjoy i really enjoyed it. Its about Dinah from the bible, Its again a story told from the females perspective. Its quite a interesting new take on a familiar story. "Lost to history by the chronicles of men, here at last is the dazziling story of Dinah, Jacob's only daughter in the Book of Genisis. Moving panoramically from Mesopotamia to Canaan to Egypt, The Red TEnt is robustly narrated by Dinah, from her upbringing by the four wives of Jacob to her growth into one of the most influential women of her time. In seeking to preserve her own remarkable experiences, as well as those of a long-ago era of womanhood, dinah tells her story in this beautiful, thought provoking novel." What types of books do you enjoy? I may be able to tailor suggestions to your taste