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Troy

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Everything posted by Troy

  1. Ive been on metoprolol tartrate for 9 years now, I take it 3 times a day just to be able to stand up and function but I have yet to experience any hair loss or weight gain, in fact I need to gain weight cause I have a fast metabolism and whatever I eat goes right through me so I am fairly slim. I also wouldn't mind some shedding some hair, I have a pretty bad case of excessive body hair that even laser therapy didn't work on lol, if only metoprolol effected me the way it did for you guys.
  2. From the advice given here I tried a very small dose today. Unfortunately it made me feel flushed and my cheeks and face became feverishly hot. So from this test today I figured its not a good drug for me because I hadn't even engaged in sex and I was already feeling feverish from it so any sexual activity would have just added to it and increased my body temperature even more. The other alternative is for me to try another type of drug called "Prostaglandin E1" which is not likely to cause any problems with Dysautonomia because it only acts on the area that needs treating, but unfortunately it only comes in an injection form applied directly to the part that needs encouragement and I am not keen on needles especially in such a sensitive area.
  3. Hi, I was just wondering if Viagra is likely to cause any problems for someone with hyperadrenergic type of POTS ? I usually have problems with increased blood pressure and heart rate when I stand up or move. I am also very sensitive to medications and my vitals become very easily effected and I usually get hot and flushed from substances that act on the Autonomic Nervous System so I am a bit apprehensive to try Viagra but I just wanted to hear from you guys first. Thanks.
  4. I too vote yes, I believe the benfits outweigh the risks. Getting the flue in this condition is far worse then possible complications from the flu shot.
  5. Hi Dianne, yes I got your pm when you first sent it and I was going to contact them but then somehow I forgot about the whole thing and then I hadn't been on the forums since and today when I loged in I saw your pm again and I was like "omg thats what I forgot to do" This time I've left myself a note though I will contact them tommorow, thank you very much for that.
  6. I am suprised more people arent as sensitive to medications and other substances as I am because whenever I explain to doctors that I cant take any drug that acts on my Autonomic system I telll them its because my Autonomic Nervous System is damaged and it cant handle things like alcohol, anelgesics, stimulants, depressants, SSRI's, opiates, cannabis and etc but then I dont understand how others with Dysautonomia can tolerate it. Also if it helps you here are some past topic in regards to these discussions...
  7. Excellent question, My sensitivity started after a recreational drug overdose damaged my Autonomic Nervous System. After years of having adverse reactions to medications I also had a cytochrome p50 liver enzyme test but in my case it came back normal. Apparently though for a lot of people the liver enzymes have a significant role in causing adverse reactions, because if your a slow or fast metoboliser it effects how rapidly the drug breaks down and is absorbed into your system.
  8. Hi, excuse my delayed response as I only just saw this message as I havent checked back here in a while. What triggered my drug sensitivity reaction is the same factor as what triggered my Dysautonomia. I was taking recreational drugs like ecstacy and amphetamines at rave party's every weekend for several years and one night I mixed a combination of these drugs and ended up overdosing and developing severe life threatening hyperthermia, I was taken to the ER and placed in an ice bath and although this saved my life the neurotoxic effects and the high temperatures damaged my Autonomic Nervous System instantly resulting in Dysautonomia but also developing this unusual drug hypersensitivity which is somewhat ironic that the drug abuse and overdose resulted in drug intolerance. Thank you for your suggestion in regards to "Choline Bitartrate" , I will give this a try and get back to you how it goes. Thank you also to everyone who responded, Heiferly I will also check out that link, I apreciate that.
  9. Hi and welcome, I am male in my late 20's living at home with my folks due to this disability and I'm also from Melbourne and I have a hyperadrenergic and hypertensive version of POTS and some other autonomic abnormalities for about 11 years now. I haven't heard of Dr O'Callaghan but me and another Aussie guy in this forums see an Autonomic specialist named Professor Murray Esler who works both at the Alfred Heart Centre and Baker Institute, his great. I tried Midodrine an I have heard it helps a lot of people but because of my specific situation where I have an abnormal version of Dysautonomia that is extremely sensitive to chemical substances, drugs and medications I was unable to tolerate it. Postural Orthostatic Tachycardia Syndrome usually has two types, the hypertensive version and the hypotensive version, one causing reduction of blood pressure when standing up (Orthastatic Hypotension) and the other as in my case(Orthastatic Hypertension) where my blood presure skyrockets and my heart rate doubles due to postural changes. but other than the changes in blood pressure all the other symptoms between the two versions are quite similar. Wish you all the best and I look forward to hearing more from you.
  10. Perhaps my doctors technique on my upper endoscopy wasn't as refined and gentle as yours because from what you describe as being "fine" is surprising to me. I too just imagined as "it sticking a tube down where food normally goes down" but it was far from it, the tube was fairly thick, size of a garden hose, instead of inserting it gently they just showed this thing right in, I was gaging and trying not to vomit and along with the air was pumped in I began to belch extremely violently, more like a combination of throwing up and belching simulatneously, it felt like my insides were trying to escape out, then my heart began to pound rapidly, not from fear but more from the procedure triggering and causing a rapid response , I tapped my doctor on the shoulder and pointed to my heart trying to indicate a rapid beat and hoping he would take the tube out, it was a nightmare. Soon as they pulled the tube out then they prepared me from a lower endoscopy of the bowels, I thought that would be better but all that air they pumped into inflate the bowels felt painful and the deeper they explored with the tube the more pain I felt.
  11. I know how you feel, due to my severe adverse reactions and hypersensitivity to all autonomic depressing and stimulating substances I had to actually have my colonoscopy and gastroscopy without any sedation and I dont mean to scare you but it was horrible, like some form of torture. But you gota do what you gota do.
  12. Alcohol makes me very ill and causes me severe adverse reactions even when I try a very small dose, but then again I have an odd version of dysautonomia where my body will not tolerate any substance that stimulates or depreses the autonomic system such as sedatives, stimulants, SSRI's, opiates and other anelgesics. The very first sysmptom I experience with alcohol is a high fever, flushed and hot face followed by distrupted vitals, rapid pulse and feeling horribly unwell.
  13. I don't think the problem occurs because people become dependant on it and experience symptoms when they miss a dose, the problem occurs because in the absence of betablockers you get to really see how bad your POTS is. For me betablockers is absoloute magic, without it I cant stand up, walk, excercise, move or do anything for that matter, once I take my betablocker I feel slightly normal and I can do some physical activities without my heart and blood presure flipping out and without feeling flushed. If your POTS however isnt as bad that you cant function at all without betablockers then I think its better you dont start on it.
  14. My Autonomic Specialist recently recommended Moxonidine claiming that he has had good results in treating the hyperadrenergic type of Pots and that it also has a sedating effect in larger doses. Moxonidine is initially used as an anti-hypertensive drug licensed for the treatment of mild to moderate essential hypertension but it has other uses and functions which may benefit POTS. It is a very selective agonist only binding to certain receptors and causes a decrease in sympathetic nervous system activity and its even more effective then Clonidine in some cases. I am however a bit apprehensive to start on this medication without getting more information from you guys, the problem here is that for the most part my blood pressure is great. My blood pressure only increases when I stand up, move or exert myself, but this is very easily controlled by a dose of beta-blockers which I take everyday to manage my POTS symptoms. This is where it gets complicated... it is only when I take a substance that my body is sensitive to such as any sedative, analgesic, opiate, alcohol, or a stimulant that I experience a hypertensive crisis and a severe adverse reaction, which is where I think the Moxonidine may come in useful and this is why I think my specialists recommended it. But I fear he may have underestimated me, because my hypertensive adverse reactions are very wild, unpredictable and fluctuate greatly, so for example if I take an opiate drug to manage my pain I experience bradycardia with heart rates around 44 bpm whilst I have hypertension with a bp of 173/94, but then within minutes my bp drops and rises again, in such a case I cant take betablockers at the risk that it may further slow my already slow heart rate. So I am not sure what Moxonidine will do to my unpredictable fluctuating vitals, I think it may stabilize my bp when its high but how much will it effect my already low hr?
  15. If you have a diagnosis then it is best to use specific terms to define your condition but if like me however you have a bizzare version of autonomic dysfunction with only a partial diagnosis and a whole bunch of undiagnosed symptoms effecting your vitals and autonomic function then its best to say "Dysautonomia" as I always do.
  16. I agree that some people just dont get it, my doctor has said on ocassion that if people with physicaly limiting disabilities and missing limbs can work that I should be able to too but that is just plain WRONG...at least people who are missing limbs are able to still go out in summer and tolerate the heat...I overheat even on the best of days due to my specific situation and different version of POTS. Its just so frustrating trying to explain these limitation to people who can't think beyond their own values.
  17. Yea I have no problem with the specific beta blocker "Metoprolol Tartrate". I agree with what you say and over the past 10 years it has become more apparent that all these odd symptoms are a result of imbalance in my brain chemistry such as dopamine, seretonin, adrenaline and problem with the receptors in the brain which seem to be easily effected by further factors such as medications, stress, heat and etc. Its hard to fix such a problem because it is uncertain which particular hormones or brain chemical is causing symptoms due to excessive release and which ones are causing problems due to insufficient relase, for example if your serotonin levels are low and your experiencing depression you take SSRI to build up your serotonin levels but in my case I seem to be experiencing the opposite due to excess serotonin and if I happen to take SSRI's or opiates it just makes everything worse. So for my situation it is difficult to play around with my brain chemistry trying to stabilize and achieve optimum levels. This is why I also believe regular exercise will stabilize brain chemistry the natural way by releasing hormones like endorphins, adrenaline, dopamine etc and over time it will help stabilize things, this is something I am working on in the long term.
  18. I am surprised you say that because I also noticed the similarities between serotonin syndrome and my symptoms whilst checking online, especially when I have adverse reactions, but I am not sure how to be certain about it or to exclude it.
  19. Clonidine acts on the area of the brain to reduce the effects of hot flashes. Use that together with a spray pump bottle filled with water and put in the fridge to cool down, buy a held hand fan and whenever you feel hot spray the worst effected areas of your body with the water and then turn on the fan for an added cooling effect.
  20. I actually diagnosed myself with POTS None of the doctors I went to were able to figure it out, so for the first 6 months every single doctor labeled me as anxiety when I insited that my heart was only racing from movement and standing up, and that I didn't feel an emotional component. Eventually I searched online in google for the keywords that matched my symptoms, such as "rapid heart" "standing up" "movement" and it came up with the condition "POTS". I then took it to a cardiologist and said " I think I may have POTS" and asked for a table tilt test. It turned out I was right, I ended up diagnosing myself, its now been 10 years and if it was for those idiots I would still have no diagnosis and still have the word "anxiety" shoved down my throat.
  21. OMG!! that sounds so promising, in fact its exactly what I was after, ever since my overdose 10 years ago I have been having so many symptoms that just dont fit into anything and all my attempts to find answers only make me realize how uncommon my situation is. The only problem would be that I live in Australia an that link you gave me seems to be based in the US but I will try my luck anyways. Thanks
  22. Thanks so much for your advice and for that interesting link, sounds like your advice has potential, I will be mentioning the recomended meds to my specialist. Thank you.
  23. Sorry to hear your having similar problems, personaly I find some comfort when I know I'm not alone in these symptoms, so I would like to know is yours also towards every substance that acts on the autonomic system as well including all the class of drugs Ive mentioned above and whats the full list of symtoms you get during an adverse reaction ? Just knowing others have this too will put my mind at ease especially if they are exactly what I have. Like with me opiates cause, respiratory depression, bradycardia with hypertension followed by rapid heart rates and irregular heart beats, difficulty swallowing, muscle spasms, hyperthermia and fevers, confusion, agitation, headaches, a presurised feeling in my skull, throbbing veins in my temple, neck stifness and a weird horrible feeling.
  24. I know that most of you have some intolerance and sensitivity to drugs but my case is so absurd and extreme that even my Neurologist and Autonomic specialist were skeptical at my claims. I spent years telling them over and over again that I have adverse reactions to every class of drug that has a stimulating or depressing effect on my Autonomic System, such as all sedatives, alcohol, all narcotics and opiates, all analgesics, anesthesia, all stimulants, cannabis, and all SSRI's. My specialists kept telling me it maybe pyschological or anxiety but I know its not. Every time I take any of those substances even in a small dose I was ending up in the ER. At one point I was visiting the ER several times a week when trialling with opiate based pain medications. I trialled every opiate available on the market trying to find one my body could tolerate and in the end they all failed. After complaining and nagging my Neurologist he finally agreed to monitor me for the adverse effects of the drugs whilst doing a table tilt and autonomic test in his laboratory, on that day I chose the opiate Oxycodone which I took only 5 mg's. He table tilted me and tested all my vitals before the effect of the drug and then once the adverse effects began and he saw the immediate changes in my blood pressure which went up to 178/94 whilst still laying down, and my heart rate at first dropped to 44bpm but upon tilting it went up to around 145 bpm, I began to have the severe tremors and muscle spasms in my legs and jaw as usual due to the adverse effects of the Oxycodone, my temperature went up by a degree and I got the usual severe headaches and neck stiffness. I was calm during the whole incidence and there was absolutely no emotional component, he was finally convinced that it has nothing to do with anxiety and he was quite surprised to see the severity of the adverse reaction. Now that all of it has been documented and I finally I have proof, nothing is still being done about it. I was asking him to at least publish it in a medical journal so that maybe interest from the scientific community could offer me some help but he doesn't believe it would be effective. I keep telling him my case is unique and that ever since I developed POTS due to a overdose on recreational drugs resulting Autonomic damage I have been stuck with this intolerance to drugs, so there is a lot more to this whole situation and the reasons how I developed this sensitivity from an overdose is the key to uncovering this and understanding the type of damage, but no one is willing to investigate it further even though I believe the technology out there exists to figure this out. I fear I may have to take my unusual quirks to my grave even though my unique situation has a lot to offer to the scientific community.
  25. My extremities are always icyc old due to pots, mainly being fingers, toes, ears, tip of nose and etc. People who shake my hand usually comment how cold it feels to them, and the odd thing is whenever I overheat and feel feverish my extremities become even colder. I'm not sure what you mean by cold "sweats" though ? personally I can't sweat at all due to the ditruption in my sweat glands Pots has caused me, but I can relate to the coldness you mentioned and I think its the same for most with POTS.
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