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Troy

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About Troy

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  1. Glad to hear you weren't so easily deterred by your symptoms and still found the strength to work through it. Routine is the keyword here and that is the source of the treatment, and sticking to the excercise routine is very important. About 5 years ago I actually made a topic on the benefits of excercise on POTS, it was a theory I discovered from personal experience. I was going to bump that topic to show everyone that I had also made the same mutual discovery on excercise and POTS but none of my past topics from 5 years ago seem to be avaliable on these forums, did they clear our past posts? Anyways the point I wanted to make was that POTS had really debilitated me and I had llost my ability to sweat...until one day I went overseas for a holiday. I went for walks everyday along the sea shore at the holiday resort we were staying at, at first the it was only short walks but eventually I began to be more active with each passing day and taking longer walks. I kept this routine up everyday for 2 months and then suddenly one morning during the walk I realized I had begun to sweat. I was so excited beyond words.... It was the first sweating I had done in 12 years and furthermore I was no longer feeling overheated and i could stay outside in the sun. Miracelously walking and excercising everyday had allowed my body to begin functioning like normal. The main point I want to make to everyone is that it took 2 and a half months of excercising EVERYDAY before I got results and saw imnprovement, so it does not happen right away and improvements do not happen if you get lazy and miss out on the routine, you have to stick with it everyday and condition your body into working in a normal way. Sadly though I got too carried away from the improvements and pushed myself too far by playing soccer and football again which resulted in an ankle injury and put me out of action for several months, soon after I reverted back to my old lazy habbits and once again all my pots symptoms came back, including the overheating and lack of sweat. So now i at least know the potential for improvement is there if I go back into the excercise routine but the trick is to not overdo it and to stick with it everyday.
  2. I can relate to your reply, its exactly my main problem too. Have you tried a cooling vest ? I usually wear one in summer and also carry around a mini hand held fan and a pump spray water bottle, its helps a lot. What you do is spray yourself with water and then use the fan to cool off the water, its awesome and so refreshing, even my friends steal it off me to have a go and they dont even have Dysautonomia.
  3. The patient Liasion arranged me to see the hospital ER manager. Which was great but it would have been better if they also allowed the offending doctor to be present during the interview I had with the department manager so that I could see for myself that he had learnt his lesson.
  4. Yea definetly! Sometimes I wonder if there really are so many people in the world suffering from anxiety that the doctors are so quick to label us with that diagnosis. I also don't understand why is it that when you tell a doctor that you don't suffer from anxiety they don't believe you. Do they really think they know our feelings better than us? I mean come on it doesn't take a masters degree to know what anxiety feels like, we are not stupid or in denial that we can't even realize the existence or absence of anxiety. I know what anxiety feels like because the doctors have made me experience it, and I can now confidently say the feelings I get when Im having an adverse reaction are nothing like the anxiety, fear, frustration, panic I feel dealing with those frustrating doctors. Even when faced with the possibilty of death during an adverse reaction I am still much calmer than when I am faced with a seceptical dismisive doctor. Those doctors make my heart rate shoot up and sadly It just goes to show my biggest fear in life has become dealing with arrogant, mistrusting doctors. I have to try so hard to convince them on every word I say, i don't understand what their deal is to have become such difficult people to deal with.
  5. My choice wasn't listed so I chose "other" I would get rid of my most bothersome symptom which is either: 1-the drug intolerance and adverse reactions to medications or 2- the overheating, heat intolerance and temperature problems
  6. Hi Lotusflower, I knew you were Aussie soon as you said "Medical Practioners Board" . I actually live in Victoria too in the South Eastern Suburbs. From the two doctors that are abusive towards me I reported one of them to the Medical Practioners Board but later it was decided another agency named AHPRA (Australian Health Practitioner Regulation Agency) was better suited to deal with him and the matter is still being investigated since December 2010. I reported the other doctor to the Patient Laison after he refused me medical treatment and rudely told me to leave and and then quickly labelled me with anxiety without even looking at any of my medical history and refusing to ackowledge anything I said to him about my health. He then crossed the line by trying to push his misdiagnosis onto my family Doctor with his stupid letters. After reporting him I was called into the Hospital to speak with the ER department manager who was very kind and understanding and promised he would speak with the doctor in question... This all happened 4 months ago and just when I thought the matter was resolved...my family doctor randomly received a letter out of the blue last week and it was that same ER doctor still trying to brainwash and concvince my family doctor into believing I have anxiety and asking him to send me to a psychologist despite the fact that a psychologist has already evaluated me and dismised any findings for anxiety. It really annoys me when I told him about having already seen a psychologist, he refused to believe me yet now he is sending requests to my family doictor to send me AGAIN and I bet once again they will clear me of anxiety as the cause for my symstoms or adverse reactions and once again he will refuse to believe the results or that I even went to a psychologist. So the entire thing is redundant. Why is that doctor even requesting for me to be sent to a psycholgist when he keeps refusing to look at any of my medical history or psychologist reports and when he keeps refusing to believe I saw several a pyschologist already and when he keeps refusing refusing that none of them found any anxiety. I could see a million psycholgists and it still wouldnt make any difference because he simply refuses to acknowledge anything i or my specialists have to say. It is clearly evident its him who needs to see a psycholgist because he is behaving like a complete loony. This crazy Doctor is still out to cause dramas for me and I am afraid to repotrt him to AHPRA or Medical Board as I already have an investigation in place for the other doctor and if I make another report then it starts to look badly on me as if I was just complaining about everyone. So it s a catch 22 situation. Thanks for your advice and I agree with you even if a case does not get resolved in your favour you can still find peace in knowing that "the whole investigation/interview process with him would have given him a bit of a fright and would hopefully make him think twice next time" But with the second doctor it seems reporting him to the hospital wasn't enough to deter him frm creating further dramas for me so I may just have to take it higher even if it means it may look badly on me. I'm even considering reporting it to the tv show that investigates unfair conduct such as "a current affair or today tonight" and I'm also going to email all the board of directors for Southern Health and let them know of the discrimination and ongoing problems I've had to endure. I wish I could name and shame the doctors and the Hospitals name on here and Youtube for everyone to see but apparently the rules prevent us from listing names. Thanks for reading all this and once again thank you for all your help and advice. PS> For Corina, The name "Southern Health" is not the name of the Hospital , its just a general non specific name for the chain of many hospitals that exist in the South Eastern region I live in which is governed by a board of directors.
  7. Thank you for your reply. My doctor actually wrote a statement specifically adressing the doctor who mistreated me and in the letter it explained that I have Dysautonomia and I am hypersenitive to medications and that I do not suffer from anxiety and it finished off saying " "he is not a drug dependant person"... Yet when the time came and I tried to show the letter to the doctor who was harassing me he refused to read it or even look at it. It was ironic considering that the letter was specifically written to him to prevent further abuse yet the letter failed to serve its purpose because the person it was adressed to would not read it. That's why I am angry. The hospital has worked in putting together a care plan to prevent further mistreatment, I have a file there explaining everything and I also carry my own folder full of specialists reports but none of it is any good when the doctor wants to acts like a complete bully and ignores all the paperwork designed to stop such behaviour.
  8. Two of the ER doctors at my hospital have targeted me and have have caused me so much distress and anxiety because my ER attendance accumulated over the years resulting 88 ER visits in 9 years. So now two of the doctors there now have a problem with me and they have labled me with anxiety. Majority of the ER treatment was due to Dysautonomia related complications and have no reason for me to be dismissed as anxiety. Most of my attendances have been for Gatroparesis resulting in vomiting, fever and nausea. Other ER trips were due to Gastrointestinal issues causing severe pain, two cases of kidney stones, meningitis, pericarditis, SVT's, neck injury following car accident, knee injury requring crutches and gastro, food poisoning, dehydration following endescopy preperation, severe asthma, hyperthermia, ear infection that turned into a full blown viral condition that took months to resolve and many hospital visits and finally several of them for adverse reactions to my pain medications. During the attendances following adverse reactions to pain medication which Im prescribed for chronic pain, the doctors wrongfully accused me of being a drug abusing junkie and refused to look at my specialist reports explaining otherwise and later wrote a false deragotory discharge report to my family doctor telling him I suffered from anxiety and mental and behavioural problems due to opioids. When I reported the doctor, the news travelled fast in the hospital and the next time I attended the ER another doctor who is his colleague refused to treat me and left within minutes of seeng me. Both of thses doctors have only seen me twice in 9 years and both have never examined me or gave me the chance to explain myself and they have both refused to look at my medical history which contains maany specialists reports. They both made wrongful assumptions about me within the first minutes of seeng me. One doctor labelled me as a junkie whilst the other labelled me with anxiety. When I tried to show them evidence from two seperate psychologist reports stating that I did not suffer from anxiety and that I have hypersensitivity to medications and my symptoms are due to Dysautonomia as diagnosed by my specialists, they refused to look at it. Ironically my anxiety developed over being misdiagnosed as having anxiety. The very doctors that kept badgering me as having anxiety have managed to cause me anxiety when previously I was not even anxious. Now I have been losing sleep over the way they treated me and I'm afraid to seek medical help at the hospital. A few days ago when I developed Gastroparesis again I drove to the hospital and sat in the car at the car park until i recovered enough to go home. I was too anxious to go into the hospital at the fear of seeng those two abusive doctors again. They are so hostile, rude, egotistical, arrogant, insensitive, narcisistic, skeptical, dismissve and have no regard for my wellbeing as they have refused me treatment even when I was exteremely ill and now they are keeping tabs on my attendance so whenever they find out I went to the ER they send my family doctor letters unecessaily stating the current number of my attendance even when they are not the treating doctor that day. One of them even sent my family doctor an anonymous letter about me which even disgusted my family doctor as to their rude immature behaviour. I am really angry, upset and anxious over all this, a part of me is so angry I would want them to experience the same distress they are causing me. I need some help on how I can deal with this situation?
  9. I am having the exact same problem right now. The hospital is harassing me and my family doctor by insisting I have anxiety because I have been to the hospital one time to many for Dysautonomia related complications such as developing digestive problems, gastroparesis, medication reactions etc. Two of the doctors there are evil and corrupt and they refused to treat me and told me to go home within seconds of seeng me but then they sent my doctor a "discharge summary report" telling him I suffer from anxiety. I have letters from my neurologist, cardiologists, Autonomic specialists and psychologist all expalining how my sysmptoms are a result of my Dysautonomia and the psychologist report excludes anything for anxiety yet the hospital ER doctors refuse to read the specialists reports and insist on making their own diagnosis without even examining me. Then they try to sabotage my family doctor relations by sending lies to my family doctor. I feel like I am being harassed by the Hospital. I am at my wits end.
  10. Thank you both . I can't really take too much credit because when you dont have many options you just have to put up with the discomfort of what life throws at you. My follow up consultation for results is in 5 weeks.
  11. My Gastroparesis (inability for the stomach to empty its contents) has been getting worse lately causing severe nausea and I am finding that foods I ate 2 days ago are reappearing and still undigested when I vomit. I consulted a Gastroenterologist who arranged for an endescopy. I had to explain to him about my Dysautonomia and how exteremely sensitive I am towards all substances that act on my Autonomic Nervous System and that I would not be able to have anesthesia as I can't even tolerate my opiate pain medication without ending up in the ER with severe adverse effects and distruptions to my vitals. So he agreed I would have the endescopy unsedated. When I arrived for the procedure the nurse and the staff there had no idea about the arrangement I had for my request to not be sedated. When the Nurse was suprised at my request and told me it would be very uncomfortable, I then had to explain to the nurse once again about my condition and then showed her all my history and documents from my Neurologist, Cardiologist and Specialists explaining how I am hypersensitive to many substances more so than others with Dysautonomia and a showed her the results of a laborotary test indicating the adverse reactions I had towards an aministered opiate under controlled setting conducted by my Neurologist. She agreed and said I would still have to speak to an anesthetist and I told her that was fine but I wanted to speak to them before being taken into the endescopy room. Despite my request I soon found myself on a bed being wheeled into endecopy theatre where i was then surrounded by 7 medical staff including the Gastroenterologist who is waiting ready to start the procedure. Then the anesthetist comes in and says "tell me why you don't want to be sedated" I'm lying on my back, seconds away from the procedure and everyone in the room is now looking at me waiting for me to explain to anesthetist why I can't be sedated. Despite trying my best to avoid that exact same scenario by requesting to speak to an anesthetist earlier I still ended up in the exact same nightmare moment. :wacko: I wasn't about to tell him in front of 7 people that 12 years ago I had a drug overdose to ecstacy which damaged my Autonomic Nervous System and left me hypersensitive to stimulants, anelgesics, sedatives, anestheisa, opiates, alcohol and any other substance that stimulates or depresses my autonomic Nervous system in someway. Instead I did my best to briefly explain my chemical sensistivity is a part of my Dysautonomia. So then he asks me; "what happens when you have Anesthesia ?" I replied saying: "probably the same thing that happens when I take opiates to manage my chronic pain, I end up with a distruption in my vitals causing problems with my blood pressure, temperature, heart rate, breathing, muscle spasms etc" He then became sceptical and says: "This is different than opiates, you should be fine, I am just going to give you a bit of propofol" "I then tell him "its not just opiates, I have reactions to all substances that act on my ANS, look if you dont believe me I can show you, i brought in all my documents from my specialists but the nurses put them away in the outside locker and if I knew I was going to have this last minute discussion I would have brough them here to show you" He replies saying "well if your that sensitive than your likely to have even worse reactions to the effects of the endecopy being put down your esophegus and the air we use to inflate your stomach" Now I just wanted to jump out of that bed and smack him. Here I am doing my best to stay courageous at the idea of having an uncomfortable procedure unsedated and here he is putting ideas into my head about having even worse reactions if I dont have anesthesia and trying to scare me into submission when he dosent realize how easily he could kill me if I agree to be put under. I am already feeling nervous at having an unsedated endescopy and in my nervous state I am then expected to accurately recite my medical history and convince his sceptical *** that I do infact have a real valid concern as to why I cant be put under anetheisa and I had to do it without showing him my documents, whilst laying on my back staring at the ceiling seconds waway from the procedure and not only convince him but also the 7 eyes surrounding me all glaring at me waiting for me to give everyone a valid reason why I should not be given Diprivan (propofol, the same substance that killed Michael Jackson). They put me in a horrible situation and it made me furious that it could have all been avoided if I had been given the oppurtunity to talk to the anesthetist before being taken in to the procedure room like I requested. It's a moment where I need to be at my most relaxed and calm state as they are about to put a garden hose sized tube down my throat and inflate me and I have the fight all the gagging and retching and on top of it all I am being pressured by a septical, clueless anesthetist who just wont take no for an answer. He kept trying to pressure me into being sedated when he has no idea about my medical history or even what Dysautonomia is and hasnt even bothered to look at any of my paperwork. Part of me made me wish I could have said yes just so when he did kill me he could have learnt a valuble lesson to be more thourough and to never underestimate a patient. Even if I was going to have anestheisa that trigger happy, clueless, sceptical, insensitive anesthetis would be the last person on earth that I would allow to put me under. He looked like new graduated rookie and he acted even more like it. He made me appear as if I was an over-reacting anxiety freak to everyone in that room. I am proud to say though, I did not even flinch when that tube was put down my throat and they told me it was the best they have ever seen anyone tolerate an unsedated endescopy but the only bad taste left in my mouth that day was from the way I was treated by the anetheitist and how unwilling he was to review my medical records.
  12. I know exactly how you feel. I went through the exact same stage. Mine was triggered when my POTS got worse and I was having all these abnormal bizzare symptoms unlike anything documented in POTS. I was developing hyperthermia suddenly during the day and my heart would become irregular and I haveing episodes of SVT (Supraventricular Tachycardia) severe nauseau and it would randomly hit me at anytime. I was finding myself suddenly having these severe symptoms whilst driving my car and I would have to pull off to the side of the road and just wait there for it to settle so I could recover eneough to drive to the hospital ER. Few times I called the ambulance and eventually these episodes started to take its toll on me and I got the point where I could no longer be by myself. I had to ask my parents to take me wherever they went or vice versa. I could no longer be at home bymyself but at some point I decided to substitute my parent's company for the safety of having a mobile phone on me at all times.
  13. My Dysautonomia is so excessively random that there is no way for me to answer this question. Sometimes I have 7 bad days in a week, other times I have 7 good days and anything in between.
  14. Great post. Unfortunately one thing I have learnt over the years is when you have specific symptoms that are unique and personal to your Dysautonomia then no doctor wants to bother investigating further. I've written to so many specialists and research scientist when I first developed POTS and I was overheating with severe fevers everyday and experiencing very odd symptoms like spasms and hyperthermia from sexual arousal and a whole list of other weird symptoms but none of the doctors were interested in investigating further to figure out why my body was reacting in such an unusual way. I thought having such unique symptoms unlike anyone else in the world would gain the interest of the scientific community but it did not. All the reserach is going into common illnesses. No one seems to care in wasting time or funds on people with rare and bizarre conditions.
  15. I diagnosed myself using the internet when those poor excuse for doctors brushed me off as anxiety. I knew my body and symptoms well enough to know it wasn't anxiety so I went online to google search engine and typed in the words "heart racing when standing up" and one of the results during the search was about POTS. So I then searched for a neurologist in my area who was also specialising in Autonomic Disorders and I took my self-diagnosis to him asking him to do a table tilt test for me. He then confirmed I was correct.
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