Troy

You presented some great questions and they have been asked before by various specialists, but its a very complex problem, majority of the time (bout %98) my temperature increases, when measured the thermometers verify this, on occasions after sudden temperature spikes the hospital has documented by temperature at 38.1 c without any other causes other than dysautonomia. But then there are times when I develop hot patches on my body areas which are really hot to touch, mainly on my face, inside elbows, thighs, chest, crown of my head but then at te same time my fingers and feet are icy cold other times my oral temperature is really high but ear temperature and under arm are low or vice versa and there are times when my core temperature rises and Im hot all over but other times I overheat only on the skin surface and Im hot to touch but my core temperature is fine although I feel extremely feverish so you see it is a very complicated problem and then there are times (about 2%) when I actually felt hot without an increase. I am a male and I have had reactions to florinef about 8 years ago when I tried it I cant exactly remember the reaction but it was unpleasant so ı havent gone back. Furthermore ı have reactions to any medication that acts on my autonomıc system especıally anelgesics, sedatives, paın kıllers, caffeıne, alcohol, or any recreatıonal drugs whıch ı ceased 9 years ago they all ıncrease my temperature and mess around wıth my vıtals some causıng respıratory depressıon. Interesting you say that, some of my symptoms ceased here on my travel as well which made me think whether ıt had something to do with Australia perhaps the change of gravity pull on the different part of the hemispere or alttitude or aır moisture or timezone etc??

Before I decided to fly I read almost every thread in this forum about air travel experiences from others so I want to thank everyone here for sharing their stories and making me feel reassured that it was possible. I stayed well hydrated like everyone suggested and I was given oxygen for the entire gruelling 21 hour flight and a wheelchair for change-overs. The landings and take off were the worst as the change in pressure gave me some chest pains, and I wore travel socks and did the recommended excercises on the plane to avoid thrombosis and pooling. Due to a severe chemical sensitivity I only take one medication for my pots which is a betabloker (Betaloc) to control heart rate from postural changes. Yes exactly, by that I mean jumping under a cold shower or turning my air conditioner on in the dead cold of winter and being able to comfortably walk around in a t-shirt in 4 c weather or ending up in the emergency room simply due to fevers and temperature spikes purely as a result of my dysautonomia and temperature dysregulation and covering the car window with sheets to avoid sunlight like a some vampire whilst travelling to doctors appointments so I wont go into detail about summer as Im sure you can imagine.

The IV fluids do nothing for me because it seems my body has its own set level on how much fluid it allows for absorbtion any additional fluids send me running to urinate, every time Im given IV fluids I make about 2-3 visits to the toilet per bag of IV or serum, anyone else have this problem?

Thanks for the support guys, the hospitals here give me a serum drip everytime I show up and they suggest a medication called Novalgine (Metamizole sodium) to reduce the fever which I keep refusing....I looked it up and apparently Novalgine is banned in over 30 countries including Australia and the US due to risk of agranulocytosis. http://en.wikipedia.org/wiki/Metamizole As for my hypothalamic temperature dyregulation my autonomic specialist Proffessor Murray Esler and neurologist have both said on many occasions that I am one of the most unusual and worst cases of overheating due to Dysautonomia that they have ever seen. My constant daily overheating has been linked directly to my recreational drug overdose to ecstacy and amphetamines 9 years ago which resulted in immediate hospitalisation and onset of Dysautonomia and the cause is belived to be hypothalamic damage due to the hyperthermia caused by the ecstacy overdose and neuro toxicity leaving me low grade fevers everyday for the past 9 years. Since then this flu is really testing my boundries and I would be suprised if it dosent leave me with further long term temperature complications.

Im currently on an overseas holiday from Australia to Turkey where I have contracted the worst case of the flu I have ever experienced or could ever imagine. Its been 5 days of **** and its getting worse with various hospital admissions and horrible fevers...... I have a continous sore throat, a painful cough ocassionally with flem, runny nose, sneezing, loss of appettite, headache, dizziness, fatigue and my chest xrays show tracheal bronchitis and infection. Worst of all is the fever.....On day one it started with a temperature of 38.3c (100.9 F) and today it was up at 39.7c (103.4 F) I keep waking up in the middle of the night with these fevers spend the next few hours applying ice packs and wet towels to bring my fever down to a comfortable level so I can go back to sleep, but then in the morning it starts over again and lasts many hours. I am very scared for my safety because I have Autonomic Neuropathy and POTS with severe hypothalamic temperature dysregulation that began 9 years ago and my worst symptom for my dysautonomia has been the severe overheating which I experience everyday regardless of air temperature and now I feel like this fever and the flu is really pushing areas in my brain for temperature control to the limit and im concerned its going to leave me with further damage. The country that Im holidaying in is still a developing country and the hospitals here are horrible and they use medications I have never heard of, I have continuously refused medications and injections due to my chemical sensitivity. I have been put on amoxycillin for 5 days but my condition is getting worse, based on my blood test C-reactive protein (CRP) I have a high level of 24.3 the normal being lower than 5 indicating an inflammation or infection so they changed my antibiotics yesterday to Tavanic (Levofloxacin) which I read is a risky fluoroquinolone type antibiotic with very severe CNS type side effects.... Im confused whether my influenza is viral or bacterial and if it is viral I dont understand how antibiotics could help at the same time can a virus cause such fevers or high crc levels. Im reluctant to use the new antibiotics due my chemical sensitivity, dysautonomia andall the horror stories about Levofloxacin. Im regretıng ever going on holiday and feel trapped here in this country with this horrible flu, I would appreciate any guidance

Wow firewatcher that information sounds very closely related to everything I mentioned in my symptoms, thank you thank you thank you almost too good to be true so I wont get my hopes up yet...Im suprised I'd never come across that information before. That article also says "during exercise the rats had their body core temperature, brain temperature and tail skin temperature measured" it makes me sad that even rats have their temperatures measured in a labarotory environment and as a human being no ones even bothered to do those tests on me to figure out my illness. Back in 2004 I had a "24 hour Catecholamines urinary test" checking for thyroid and hormonel changes which came back clean...would that test have picked up anything abnormal in regards to the article you mentioned ? If so I might go back for a second test incase anything was missed... Im also using Metoprolol for 6 years as a Beta Blocker to manage my POTS but I have not used an Alpha Blocker before so I will mention this to my doctor, thank you soooooo much

Hi again, I really appreciate and thank you taking an interest and feel free to ask me anything you like..... I'll tell you exactly what happened, as well as answering all your questions, might be a bit of a long read but hopefully my detailed explanation might help me someday if anyone else or a doctor comes across this.... I would agree with you if you were to think I'm the stupidest person in the world for damaging my own health, I still regret how wreckless I was in the past and pay for my mistakes everyday with the symptoms I'm stuck with.... I was going to rave parties for about 5 years and taking amphetamines, ecstacy and other pills on a weekend basis, mainly for the purpose of being able to dance for up to 8 hours , I know now it was the dumbest thing to do , In those 5 years I had never had any bad response or side effects from any substance and my health was great.... Untill oneday I took a combination of recreational drugs consisting of some amphetamines and pills which im not sure exactly what was in it could've been bad household chemicals for all I know...then went to my girlfriends place and things got a bit intimate. Whilst engaged in sexual activity I suddenly began to burn up with extremely high temperatures which was severe enough to have my girlfriend freaking out at how hot my skin had become and it was the worst heat I ever felt to this day, my whole body went into a pins and needles type feeling, my heart was racing like crazy and I got to the point where I was certain I would die due to the unbearable hyperthermia..... I ran directly under a cold shower which seem to be the factor that saved my life, but everytime I tried to get out of the cold water the intense heat would just sweep over me again and I would have to run back under. We filled the bath with cold water where I lay for up to 2 hours untill I could eventually tolerate steping out without feeling like I was stepping into a furnace or the feeling of death. I was suprised I had survived, but immedeately following that incidence I noticed I was left feeling feverish in the weeks to follow, and found that I could no longer engage in sex without overheating severely, it seemed I had now damaged something in my brain.... A few weeks later I decided to test a small amount of recreational drugs again believing the overdose may have just been a one off incidence but to my horror soon as I tried even the smallest amount I immedeately began to overheat and once again found myself under a cold shower with hyperthermia. Still confused and unable to accept my fate as I had never experienced this before or heard of anyone suddenly developing allergic type reaction to drugs I waited another week before again taking a smaller amount but this time things went from bad to worse...again I developed hyperthermia but also severe chest pains that worsened when I tried to walk or move and was taken to hopsital...the next day the chest pains continued and worsened from exertion, every time I tried to walk or or stand up my heart would race...this was the beginning of POTS... For 8 months I looked for a doctor to diagnose me as to why my heart raced everytime I stood up along with chest pains and why I was overheating so much and why I'd suddenly developed an allergic reaction to drugs and why sex caused me hyperthermia and etc. Every family doctor I went to said it was anxiety related and all in my head when all along I knew it wasnt and never doubted myself, untill one day I typed some keywords like "rapid heart rate standing up" in google search engine and it came up with POTS, I took it to a Cardiologist and asked him to test me for POTS which he confirmed I was correct, sadly enough I diagnosed myself where others doctors had failed. Once I had the diagnosis I went to Prof Esler. I continued overheating severely everyday, I was like a vampire unable to even go out into the sun even for a minute. I spent the next 10 months indoors infront of my air conditioner, even in mild weather I would cover the car windows to avoid the sun during my hospital trips...whilst my parents had the heater on in winter I would sit infront of the air conditioner feeling feverishly ill. Sex became my worst enemy, everytime I became aroused I would go into a severe muscle spasm and tachycardia, engaing in sex was even worse causing me irregular and rapid heart rates and hyperthermia almost as bad as the ones experinced from the overdose, I began to document my temperature and noticed that immedately after sex my temperature became very unstable and would fluctuate up and down at a very rapid abnormal rate...1 minute it would be 38.4c then the next it would be 37.9c and then another minurte later it would be 38.2c bouncing up and down up to an hour before it stabilised. It seemed I had broken myself due to my wreckless mistake with drugs.. In the years to follow I tried seeng many specilaists and tried eating healthy, taking vitamins and anti-oxidents, tried experimental medications without much sucess, There has been little improvement over the 8 years, I searched all over the internet for other people like me but it seems Im alone in this, furthermore whatever allergic reaction I developed 8 years ago due to the overdose still troubles me today when I try to take painkillers fro my chronic pain. I had doctors and people questioning wether my condition was anxiety related as they had never heard of anything like it, I saw psychologists, psychiatrists and neuro-psychiatrist who only confirmed what I knew all along that NONE of it is anxiety related....I have so many reasons and evidence to prove its not psychosamtic if anyone needs further confirmation, To this day Im still looking for answers that no one has been able to provide me yet...so if anyone can help me please comment here or send me a private message, thanks

I've been seeng Prof Murray Esler for about 6 years now, he is indeed very knowledgeble and a very great and kind person but I think he finds my particular condition a frustrating challange. His been very patient with me and experimented with various drugs to see if it would reduce my overheating but unfortunately there was no sucess, I feel like his given up on me....he wont even return my calls anymore as I think his had enough of me... I guess I can understand why and it is unfair of me to expect him to waste valubale time and resources trying to work out mechanics behind how its possible for someone to who was previosuly able to take all psychoactive substances reacreationally without incidence to suddenly develop Dysautonomia along with a a major significant allergic type reaction and hypersensitivity to ALL pyschoactive substances immedeately following an overdose, and why I have constant overheating and fevers for 8 long years, and why my overheating turns into hyperthermia everytime I develop a reaction to medications or from sexual activity.... The theory is...during the drug overdose I may have damaged areas around the hypothalamus from the hyperthermia and that fact that it happened during sexual activity whilst the brain was in an aroused state only complicated the damage more ... Prof Esler has been great in treating my Dysautonomia buts thats just all his been able to do..., all the other symptoms that bother me more than the Dysautonomia remain undiagnosed and theres nothing he can do about it unless he decides to take me seriously enough to collabrate with other scientists around the world and put me through a series of tests that will probably cost a lot to get to the bottom of the mess im in, and unfortunately Im frustrated that no one has bothered to really investigate a rare condition like mine, if I am infact one of the few people if not the only person in the world to suddenly develope Dysautonomia from a drug overdose and experience exteremely odd and unusual symptoms of chemical sensitivity, contant overheating, hyperthermia from adverse reactions and sexual activity then logic would say that scientists should be interested enough to work out my puzzling condition for the sake of science and humanity but unfortunately in that hasnt happened and im doomed to take this to my grave without ever finding a cure or even understanding it.

Hi, The celebrity with the Dysautonomia... do you mean the yellow Wiggle ? If so, I actually see the same autonomic specialist as he does here in Melbourne. Thanks for your response and reading my rather lengthy frustration...

I hate the word "Anxiety". It seems to be a word thrown around so loosley everytime ignorant Doctors are confronted with anything they cant explain. I feel like no one understands me due to the cruel complexity of my condition, and I hate being made to feel like I have to constantly justify and prove my self to ignorant people before they will take me seriosuly enough to help or diagnose me. As a result of the growing complexity of my condition I feel like im at a breaking point.... 8 years ago I had a drug overdose from speed an ecstacy which caused me to develop POTS and Autonomic Neuroptahy, following this overdose I was stuck with severe overheating thats been troubling me almost everyday for the past 8 years. Also following this overdose I found myself stuck with a chemical sensitivity which I never had before. Since that day everytime I've tried to take any psychoactive substances even in the smallest amount wether it be alcohol or pain killers or muscle relexants I immedeately develop severe hyperthermia and other adverse reactions. No one understands how I went from being healthy to suddenly developing such a generalised a chemical senitivity just from expereincing an overdose, also no one seems to understand how an overdose lead to developing Dysautonomia, no one understands why im overheating everyday even in very cold weather and why my overheating is worse than others with POTS and why everytime I have an adverse reaction to any medications my overheating becomes worse and turns into hyperthermia. No one seems to understand exactly what sort of damage occured during this overdose and why it left me with such odd and uncommon symptoms. I also developed a deteroration in my joints and chronic pain of unknown origin 3 years ago. Despite all attempts to get a diagnosis no one seems to be able to understand whats causing this or if its related to unusual circumstances behind my Dysautonomia. My doctor was patient enough to trial all different classes of pain medications to manage the chronic pain but every time I found myself having adverse reactions and hyperthermia even at the smallest dose. None of this makes sense to anyone, not even myself. Everytime I've ended up in the ER with hyperthermia and respiratory depression after taking painkillers I've been left frustrated trying to explain my situation to the doctors who assume I have a drug problem telling me to get off the painkillers when ironically I cant even get on them enough to be able to tolerate them. Other times they assume its not possible for anyone to develop such a generalised chemical sensitivity to all painkillers and tell me I'm having an anxiety attack. I hate the word anxiety because I know myself enough that none of my symptoms are anxiety related as im emotionally calm during my symptoms, the only anxiety I have is towards ignorant people who assume wrongfully about my condition. Furthermore I develop fevers and on occasion hyperthermia from sexual activity and even been in hospital one time straight after sex as a result of this, where they found my temperature at 38.4 c, it was quite embersassing way to end up in the ER. Its not the actual exertion from sex that causes the overheating but more so the chemical changes that occur in the brain during the relase of certain hormonses. I hate being such a minority in all this, I hate the odd looks I get in public places like shopping centres everytime I take out my pump spray water bottle to spray myself to cool down which is something I have to resort to way to often to maintain a comfortable temperature level and control the overheating. I cant find anyone else in literature or on the web who suffered the same outcome as me following a drug overdose or even as having some of the more uncommon symptoms like mine and it seems no one wants to spend their valuable resources investigating such a rare condition. All the many specialist I've seen have only bothered to diagnose the Dysautonomia but everything else remains unknown. I need Dr House. Then 3 weeks ago I suddenly developed severe abdominal pain that lasted continuously for 2 weeks which I ended up in the ER again where I had to explain again why I couldnt take painkillers to sceptical doctors. Since then the stomach pains have continued to get worse and remain undiagnosed. Then on top of that over the weekend I developed Pericarditis (inflammation of the heart sac) and ended up in the ER once again dealing with people who are clueless to my medical history. I currently have severe stomach pains, I also have chest pains due to the Pericarditis which Im unable to take NSAIDS to reduce the inflammation due to the catch 22 situation where those meds are making my already painful stomach worse, then I have my dysautonomia symptoms to deal with along with the constant overheating which has becomes worse with all the pain im in, then I have the usual chronic pain as well, and to top it off I cant take pain meds cause of the adverse reactions. I feel like I've hit rock bottom and im so tired of it all that I just dont wanna be here to deal with it. Thanks for listening and allowing me to vent

Flop, thank you so much for looking into this for me. My stomach pains became so unbearable yesterday I ended up going to the hospital E.R, they did various tests and came to the conclusion that the Maxolon had infact caused my digestive condition to worsen and disgnosed me with acid peptic disease and abdominal colic. I have never had stomach pains that have lasted 24/7 before and that have continued to get worse by the day , this morning I am still in agony and I dont understand why its taking so long for my stomach to settle. I will go to my doctor tommorrow to suggest the alternatives you have found, thanks again.

Im so sorry to hear that, that is so horrible but whats even more horrible is the reaction you got from the people you've told about it, its equally shocking that no ones done anything about it. It feels surreal when you find yourself in a situation where something horrible has happened but you cant get justice and find yourself thinking why isnt anyone doing anything about this, the people who should be enforcing justice are either morons trying to cover things up by saving their own backside or they simply dont believe you and want more evidence and which means when that guy should be locked up behind bars his allowed to continue working, and its you who suffers. What a crazy world!!! The best thing you can do in a situation like this is not to give up. Create such a fuss over it by any means possible such as going to the media, news papers, oprah, dr phil show contact other police departments if you have to, go to a legal aid service and contact various departments and organisations out there that will fight for you, do whatever it takes to get justice for whats happened to you, unfortuantely sometimes you have to fight for your right and push things to the extreme to get results which you cant at the moment due to the incompetency of the people you've complained to. When you finally get some justice then complain about all the departments that failed to help you including the police for ignoring a serious matter. When you have finally done all that then you can put all this behind you and look at recovering and the healing process but for now you have a war to fight because if you dont then this monster will get away with what he did to you and most likely offend again. All the Best

Lat 3 days I've been in absoloute agony with abdominal and stomach pains, the only thing I have done differently is start on the anti-nausea drug called Maxalon 3 days ago. I was given Maxolon to treat the nausea I get from opioid pain medication but for some odd reason I have ended up with an irregularity and a change in my bowel movements along with excruciating stomach and abdominal pains that last throughout the day. Apperantly Maxolon relieves symptoms of nausea by stimulating motility of the upper gastrointestinal tract and speeding up the process of movement in the intestines. Usually for healthier people who don't have Dysautonomia theres no complications but for someone like myself who already has an abnormally fast movement in bowels can further speeding up of movement due to the Maxalon be the cause of my stomach pains ? I asked the chemist and my family doctor but they were unsure of the association between Maxalon and Digestive symptoms due to Dysautonomia and the stomach pain. One of the major issues I have with Dysautonomia is the excessive shift and imbalance in my autonomic functions, I seem to go from one extreme to the other, like feeling very hot to very cold within minutes, having abnormaly fast bowel movement to having abnormaly slow movement the next day, one day Im bloated due to low stomach acid and the next day I have excessive acid reflux, somedays fast rapid heart rates and high blood pressure to slow heart and low blood pressure, there seems to be a lack of normal balance. I was wondering if Maxolon would have an adverse impact on someone with an imbalanced body functions and if the stomach pain I'm in is related to the medication. Also the Maxolon seems to help me tolerate the pain medication a lot better but is there anything else out there that is as equally effective on nausea without directly effecting the gastrointestinal tract?

Wow, Im sorry to hear you guys have had some pretty bad run-ins with doctors as well, thanks for sharing your stories with me. Seems as though some of the doctors themselves need a good psychology evaluation before their allowed to start practice. Thank you everyone for your understanding and support, it means a lot to me, especially when you face an unfair situation in life that makes you feel alone. When other people are allowed to get away with breaking the rules and being unfair you start thinking "am I doomed to be a minority with my morals, have I just stepped into some surreal dimension or alternative reality where my values of fairness and honesty are not shared by the majority anymore".......and lately I keep facing situations that make me feel like that more often especially when its a large group of people who hold unfair views oppose your compasionate values and your outcasted. Sometimes I feel like I'm trying to reason with cold heartless people. But then as Im losing all hope I hear from people like yourselves who can recognise unfair sutuations and it feels like wow there are still people out there who actually understand me, they share the same morals, values who are compasionate, honest, fair people like yourselves and that it restores my faith in humanity again. Thank you all <3 >EarthMother I share your vies on life exactly as you said. I too believe everything you said about karma and things balancing out eventually in life sooner or later. I also believe even though I did not get full resolution out of this situation to my satisfaction the fact that I complained has caused some awareness and has forced the Pyschiatrist to perhaps re-evaluate her own narrow minded views and how they can jeapordise her own career as a result of patients complaining which in turn will make her more cautious next time a patient asks for help regarding an uncommon issue. So the next person to consult her could benefit from my actions more than I have, and knowing that I still get some satisfaction that I may have made a difference to the bigger picture. As much as that Psychiatrist refuses to admit it... the amount of fuss caused over this situation would have lead to her looking up the words dysautonomia over the internet to at least see if it was a bogus of an illness as she thought it was, that alone would teach her and make her realise that she should perhaps be more humble as a person in life instead of being so arrogant and all knowing...so maybe there was a life lesson for her in there too, although it was a sacrifice and cost at my own wellbeing to make that difference my actions may have even benefited her life journey to grow and learn as a person too perhaps.

My best wishes goes out to Sara, is her fevers autonomic, virul or surgery related?

It seems my bad luck never ends, recently I ended reporting a Psychiatrist to the medical practioners board for jeaopordising my wellbeing and causing me stress. Initially I requested my family doctor to send me to a Psychiatrist for some hypnotherapy as I was experiencing severe chest pains and overheating which was interfering with activities outside of home, especially whilst driving a car I would suddenly need to pull aside due to chest pain feeling feverish and and diziness from my POTS and autonomic neuropathy. I've never had any issues with panic attacks, the symptoms were purely physical and direct result of when my symptoms worsened, there was usually no emotion behind the symptoms but it was still taking its toll on my confidence and I needed relaxation and coping techniques to deal with this and to avoid being a threat on the roads for when my symptoms worsened. The pyschiatrist however refused to accept that an illness such as Dysautonomia ever existed, even when I presented documents from my autonomic specialist and my neurologists the pychologist claimed she had never heard of such an illness and that she was also a professional and she would not accept such bogus jargon from other doctors claiming to be specialists. I told her as pychologist she could not expect to be aware of every illness that exists in an everchanging world . She yelled at me saying that she was a Pychiatrist and NOT a Pyschologist and that there was a difference betwen the two. At that point I realised I was talking to an unstable individual. She said I had a classical anxiety and panic disorder and nothing more, and prescribed me antidepressants. I tried explaining to her that my past trial with antidepressants only worsens my symptoms and ruins my sleep (which I usually dont have any issues with) and causes me to overheat more severe than usual because they seem to mess up my brain chemicals which are already unstable. I got real mad and upset at her ignorance, arogance and narrow minded attitude and we started yelling at each other, I left there refusing to pay for the consultation. Later I reported her to the medical board for not helping me despite my efforts to seek help and for further causing me stress and for trying to prescribe me medication that has the potential to make me worse based on her ignorance and wrong diagnosis. In response to the medical board the pychiatrist now decided to falsely claim that I was a junkie who had gone to her to only demand valium ( benzodiazepam) and when I did'nt get it I had become abusive and violent. I became even more outraged that this so called doctor could make such false accusations towards me and was allowed to continue treating other patients when she was clearly a dangerous and unstable enough to lie so balatantly to save her own backside. I became even more stressed at the whole situation but luckily my specialists all knew that at an earlier stage in my life when they prescribed me benzodiazapems I had actually had adverse bad reactions to them and had refused to use them. So I had concrete evidence now to disprove the Psychiatrist. Then my family began to notice a car surveillancing us everyday for around two weeks in front of our house. My parents became concerned that perhaps unstable doctor was involved and decided that if a doctors is capable of lying to such an extent then they are also possible of more or even harm to me and my family as the Pyschiatrist knew all my personal details and my adress. If I was living on my own I would have persued tthe matter to the end but I now had to consider my familys safety and as a result was forced to drop the matter even though I had strong evidence in my favour I sensed that if I presented it she would cause us harm. But I am still greatly disturbed this unstable Pyschiatrist is allowed to continue practice.

Ah the perils of an invisible illness, sometimes its a blessing sometimes its a curse. Often I take great pride in the fact that my appearance looks so healthy for someone who is actually so sick underneath. I try to emphasise my healthy appearance by dressing in youthful colorful sporty clothing, I follow fashion closely, shave every morning, and do my hair with wax which has tips in it, and when I step out of the house to see friends they all comment on how well and healthy I look. I feel like my biggest trick and achievement in life is to look that healthy when infact I am anything but. I guess I feel like the best thing I have going for me in my life is my healthy and youthful appearance, but then there are times when I need assistance from specialists or Doctors for my health problems and often its times like this that looking so well can be a burden, they seem somehat unconvinced that I have so many symptoms. One Doctor even commented saying how well I look for someone with so many complaints and questioned wether infact I had the issues I mentioned. My response to him was that...I too could throw on some dark dreary clothing reflecting how I really feel inside and neglect shaving to the point I looked old and keep my hair messy and walk in to his office with a limp due to the amount of pain I have in my joints which I do my best to hide, but if I did all that then to me that is accepting defeat, and I dont want to throw in the towel yet, just beacuse I make an effort to look well and the fact that I have a condition thats somehat invisible as it effects my vitals that people cannot see does not give anyone the right to assume that I dont deserve the traetment I need. Its bad enough being so sick but then to look as sick as I feel would bring my spirit down even more so I think we have a right to have as many positive things as possible in our lives.

Thank you all for your well wishes and all the help, Theres been some great suggestions here and dont worry I am very careful with the patches, my body usualy warns me at the first signs when the patches start getting overwhelming. Im hypersensitive like that. Thank you for caring though Flop its no problem at all, it takes a lot more than that to offend me, hehe, your right though one of the first things I was told about POTS is that the majority of females have it. I still dont know how I feel about having a condition that mainly occurs in females though rqt9191.. I did everything I possibly could to uncover my overheating symptoms. In the past 8 years that I've been overheating my specialsts have done all sort of tests but maybe they overlooked something, but despite all my efforts all I managed to learn was that temperature and thermoregulations in the brain is still a very complicated matter for science. I even contacted various scientists around the world who study thermoregulation and told them about my situation but there wasnt much they could do, a few suggested experimental medication which I tried like "clonidine for the use of hot flashes in women" might possibly benefit my overheating but that didnt work, I tried aspirin for a while as it has the potential to reduce fever but that was also no good and finallly I tried "Carvedilol" known to reverse hyperthermia in recreational drug overdoses but seems that was too little too late. My specialists have compared my overheating and fevers to some symptoms experinced in spinal cord and brain trauma patients but there isnt much else out there in literature other than the heat intolerance in POTS. Sure I also have heat intolerance which can be a bother in summer but mine goes well beyond that as Im often generating excessive heat even in very cold weather, and every time I have an adverse reaction to any medication, when I sleep, if I excercise or if I get upset, or take part in any sexual activity or even suddenly for no reason I find myself extremely feverish to the point I feel like I need emergency help. This is been going on for too long and im so frustrated with the fact that no one really understands why and with so much development in science it makes me angry that no one really bothering to study to fix me all because my situation is such a minority. Also a lot of my symptoms share similiar charecteristics from other Dysautonomia symptoms, so to be honest POTS is the least of my worries, it hardly causes me any discomfort these days because everything else is so much worse in comparisson to the POTS symptoms, that why when I get asked what I have I say Dysautonomia rather then POTS because I have a whole bunch of other symptoms from other Autonomic conditions next to POTS.

I've contacted the manufacturer several times for information, they are fully aware of my situation, and even have me on record in their data but they havent offered to help with medication supplies in any way. Oh well I think this issue will be getting resolved soon anyways as the government has decided to re-evaluate my situation. Thank you all for your help

Thanks Sunfish for thats storage advice, my patches are the Durogesic patches made by the Jannsen-Cilag company, they also come in a foil envelope packaging, the original piece of plastic their attached to devides in half as you peel it off, sort of like some of those band aids, so its difficult to re attach it back to the original part as its no longer in one piece after peeling it off. But putting it back in the foil was a great idea. Miriam thanks for your help, but just as Flop explained the Medicare here in Australia refused to fund my medication more than one patch every 3 days. Flop, great advice, that was next on my list, I was going to write a letter to the health minister, I also sought some legal advice and complained to the Human rights and equal oppurtunity board and the Commonwealth Ombudsman here but to my suprise yesterday I received an email from the Medicare saying that they have now decided to re-consider my appeal even though initially they had refused it. All they request now is a letter from my Autonomic specialist explaining why I need one patch a day and telling them how severe my overheating is. Getting that letter from my specialist is the easy part as he knows and always says how my overheating is the worst his seen and how uncommon it is to be that severe even for POTS. By the way Im a guy.

If your feeling courageous then just send them an email with this link...... http://dinet.ipbhost.com/index.php?showtopic=11046 If your not then just send them this one... http://www.dinet.org/ if they really care then they can just read it for themselves instead of you having to explain the reason.

Thanks for the advice , sometimes the simplest solutions can be the best ones. Well both your ideas sounded good in theory, I rang the manufacturer to ask if I could cut the patch into 3 parts but unfortunately they told me not to as it could be unsafe, but to be honest I dont know why its an issue, the patches I use are just a very thin clear plastic matrix strip with no gel or resorvoir, but anyhow woulda been perfect if I could have cut it but I'll have to take their advice not to. As for the second idea of re-using the same patch for 3 days by taking it off and reapplying it..well im testing that out tonight to see how it goes, I asked the manufacturer about that too but they couldnt give me a definete answer on that, they just said to try it and see but to avoid putting it in the fridge so I'll try a small air tight container instead but somehow I have a feeling its going to dry up by the 3'rd day, oh well one way to find out, i'll post back in 3 days with the results, thanks for all the help.

I actually have two types of overheating, one where my skin surface becomes very hot and the other where my core temperature overheats. The area on my arm where I stick the patch is sometimes icy cold but then suddenly my temperature spikes and the area just continues overheating untill it becomes very hot to touch, ive been told by the pharmacists at the Durogesic fentanyl company that as long as your body temperature is fluent and consistent its not an issue to be running warmer but if you suddenly go from cold skin that the patch has adjusted to and and increase to a few degrees higher in temperature , then the sudden change does influence the patch. Thats what exactly what happens to me, often when I overheat with the patch on I end up becoming dizzy, nauseated feeling like throwing up followed by respiratory depression and feeling ill, when I check my blood pressure and pulse in that state I find that my heart rate has dropped from my usual 85 bpm to around 51 bpm along with a low blood pressure. I have often ended up at the local hospital this way from the fentanyl patches. Most of the time my core temperature is around 38c or above but when I overheat that goes to around 39c to 40c's and my skin temperature gets even a lot higher then that and lasts for many hours. I have often woken up in a state of panic from my bed and rushed directly to a cold shower after feeling like I had just suffered severe heat stroke. When I get overheated on the patch or if I exceed the 12 hours that my body is able to tolerate I start feeling the adverse symptoms, so even if heat was not an issue I cannot go above using the patch for longer than 12 hours as I still begin to experience adverse reactions particularly with my vitals and develop a rash. When I get this way I take the patch off but if I was asleep I could not do that. Once I took the patch off right before bed and when I went to sleep I kept waking up gasping for air as I experinced severe sleep apneoa and my breathing kept stopping. This fentanyl is the only thing im close to being able to tolerate for pain, if they took that away from me there is absoloutely nothing else left I can take for pain as my Doctors have been patient enough with me to try everything else out there. My temperature problems are unlike most of the other Dysautonomia patients here. Since I overdosed on recreational drugs 8 years ago overheating and fevers have been my worst symptom, the sufficating heat radiating from my body makes me feel irratable and angry all the time, I feel like im stuck in a constant sauna I cant escape from or shake of the feeling off. Even in winter when its raining I just sit out in the cold and watch the steam rise off me, there is something very wrong with my temperature, I have posted here a few montsh ago about it ... http://dinet.ipbhost.com/index.php?showtopic=10123&hl= <---skip to the 3rd paragraph

On top of my Autonomic problems I suffer from severe disabling chronic pain throughout my body in all my joints. Unfortunately the chemical sensitivity I have makes me intolerant to painkillers so I end up in the E.R. with allergic type reactions and difficulty swallowing, breathing, irregular heart, muscles spasms, rash and digestive issues with all the different painkillers I had tried. Then I got lucky one day and discovered a pain medication called "fentanyl" that I could tolerate better than all other painkillers, It comes in the form of patches that you stick on your skin. The recomnded use for one patch is 72 hours (3 days). At first I also had some bad reactions to this as well from as little as wearing the patch for 3-4 hours but I did manage to desensitise myself to it enough eventually so that I could tolerate one patch for at least 12 hours before I started getting adverse reactions from it. The patch allowed me to get some of my life back and participate in simple activities I couldnt do due to the pain I feel when I move. But there was also another catch, the patch is heat sensitive, and having a fever or a hot spa, sauna, electric blankets increases the rate of absorbtion making it risky for overdose. My Pain managment clinic doctors overcome this problem by allowing me one patch a day rather than the 3 days so I could take the patch off before bed and avoid causing myself harm as I get overcooked in bed and wake up feeling sick as aresult of my Dysautonomia. Unfortunately Im one of those Dysautonomia patients where overheating is my worst symptom, I have been admitted to hospital purely due to heat related symptoms, even in winter I have the air conditioner on, I am not simply heat intolerant but more so that I overheat severely and become feverish regardless of the external temperature. Now I found out that the Department of Health is denying me further use of the fentanyl patches as it does not comply with their guidelines to use one patch for 3 days. In their excuse for denying me they responded saying "A person will not receive excessive drug release from the patch if the body is running warmer than usual" but the actual "conusmer information sheet" that comes with the medication says "tell your doctor if you develop a fever as the amount of fentanyl absorbed by the skin increases" So here we have a massive contridiction and Im being denied a pain free life based on a stupid contridiction that is so easy to disprove, but the government department refuses to acknowledge their wrong despite the manufacturers statement and all the information out there on the web. I feel like Im being discriminated against by the department of Health because they fail to understand the details of my Dysautonomia. I have alreday appealed and its been denied. Any suggestions on what to do?

I just got back from the hospital after a terrible confrontation with the Doctor in Er and im feeling overheated and sick from the stress and anger. I hate being so different, everything thats wrong with me is so uncommon and complicated. I dont even know how to explain it in words but here it goes....Im allergic to all opioid and narcotic painkillers. I dont know why this is, maybe my Pots or Autonomic Neuropathy is causing me this chemical sensitivity but everytime I use an opioid painkiller I have a severe adverse reaction and believe me ive tried every single painkiller one out there. I only found out my allergy to painkillers after I developed unknown problems with my joints and was prescribed them for chronic pain. I have detereorating joints and have ended up with torn ligaments and cartlige in both knees and ankles for no apparent reason. After taking abreak from painkiller i recently decided to restart on them in an attemp to desinsitise myself to painkillers as the I was no longer able to tolerate the daily chronic pain. Even at small minuscule doses im still experiencing adeverse reactions and tonight I ended up at the Emergency room. I tried explaining to the Doctor of my situation but he chose to believe that my uncommon situation was just another opioid addicted person with problems. He kept telling me I needed to cut down on the opioids as if I had an addiction problem. I tried explaining to him that the only problem I have with opioid is that I cant take them without having an adverse reaction and I only started taking them again recently in the past 2 weeks in an attempt to desinsitise my body. How could he be telling me to cut down on something which I havent even managed to increase yet? It was so crazy and absurd, I once again felt that familiar feeling of disbelief at finding myself being the victim of someones ignorance, generalistion and speculation. He then proceeded to tell me that joint paint dosent warrant painkilers an I should just get out an walk 2 hrs everyday and get some oxygen into my lungs! I have problems walking or standing up longer than 10 minutes and here he is telling me that he dosent believe my situation is bad enough to be taking painkillers and that I have a opioid dependancy problem when infact my problem is the opposite. Im just so angry right now I cant even get to sleep, Im thinking of going into hospital tommorow and making a complaint to the hospital manager.