Troy

I too used to be a dancer, although I never did it as a career it was still my biggest passion in life, every weekend I would go to rave party and dance my *** off It was very fast style of dancing called "shuffling" alot of tricky moves, slides, kicks, the sort of intesity and tricks break dancers do. Oh god I miss that the most. The other things Ive lost due to POTS: -Friends -Social Life -Goals -Job -Sun Bathing -Independence -Sexual activity -Alcohol and drugs

Unfortunately you cant eat it, the plant material is very coarse and stringy, you would need to have a cow's stomach to be able to digest it. I used to grow my own wheat grass in trays and then everyday I would drink the juice by extracting it in a pestle and mortar, it was a very tiresome task taking up to 15 minutes just to get a shot of juice, eventually after a few months doing that everyday I finally gave up on it.

Hi Sadi, I too suffer from severe temperature instability and know how difficult it is, my prayers go out to you. I have been battling with fevers and hyperthermia for 10 years now. I try to keep my room at a constant temperature of 64 - 65 F which is my ideal. I have both a wall mounted cooling system and a ceiling fan in my room which I use together both in winter and summer. I also wear a cooling vest and always keep a pump spray bottle filled with water at all times and in winter I usually sit outside to try and cool down. My Doctors have experimented with various meds to try and reduce my fevers and overheating, including aspirin and clonidine which is apparently effective for hot flashes in women , although I am a guy, however none of those worked in reducing my temperature. I am very surprised to hear from CHRISTYD that "doxepin" helped reduce the hot spells, as far as I knew there was nothing on the market to control temperature dyregulation, thermoregulation is a very complex matter especially Autonomic induced dysregulation and I would imagine it being almost impossible for a drug to solely act on the hypothalamus and the preoptic thermoregulatory center to stabilise an overheating person. I would love to hear more about it from CHRISTYD as to the mechanisms for doxepin on thermoregulation. If in fact it has such potential I will get myself some asap.

You raise some very valid and interesting points in regards to the "paradox reaction" and the swings in Autonomic system effecting the outcome, I often experience this myself and although I just brush it off as just an adverse reaction I think what you said definetly is a big factor in all this, and I aprecaite you sharing this valuable information. I had not even heard of the term "paradox reaction" but I will be definetly using it now as a part of my vocabulary. I had also not heard that if "vitamins, herbs - smell terrible then you don't need them that day" but this does not suprise me as I believe our bodies have a more instinctive and intuative understanding that preceds our concious minds.

Thank you for your well wishes. Issie your question is not the least insensitive, and believe me I have explored that possibilty of post traumatic stress so many times over the years because it was the very first thing all my specialists and doctors questioned when they were confronted with my uncommon and unusual situation. It is natural for people to look for a more logical answer especially when a situation is as bizarre and unheard of as this but in this case I can assure you there is no psychological factor and I will explain a little as to why... I had been using drugs for many years at rave party's before the overdose incidence had occurred, I had never previously had an unpleasant experience and I had no prior health problems before the overdose. It was that one single incidence 10 years ago when after ingesting a combination of drugs followed by sexual activity when the overdose hit me, I ran for the cold shower to combat the hyperthermia whilst awaiting the paramedics, I lost consciousness in the ambulance, and later was revived in an ice bath and given counteractive drugs to treat the overdose but it was all too little too late as I had already suffered the damage and since that awful day 10 years ago nothing has been the same. Not only did I instantly develop Dysautonomia and these odd sexual problems, I also could not leave my house for 10 months because I had to be constantly in front of a cooling system everyday because I was constantly overheating 24/7, every symptom I had was excessively bizzare and even beyond POTS, I found that every time I experienced an arousal my temperature would fluctuate very rapidly where every single minute it would go up and down giving me a different reading on the thermometer, but when I wasn't aroused my temperature although elevated was gradually shifting throughout the day as it should. So this is only one example and proof that what I have is not of a psychological nature. I also have written several pages of other evidence I show doctors that what I have is in no way related to post traumatic stress, psychosomatic, conversion disorder or and other psychological factor. I would explain all my other evidence and reasosn but it would end up a very long read. I understand my symptoms sound plausable but every one of my odd and excessive Dysautonomia symptoms is a testament that the damage I incured was of an unusual nature and because of this even my Neurologist have agreed that for me to end up so different from you guys there had to be a factor out of the normal and this is where the sexual activity comes in, the fact that not only did I develop dysautonomia directly as a result of a neuro toxic exposure to illicit substances but the fact that the overdose actually occured whilst my brain chemistry was further shuffled by the prolonged sexual activity I was engaged in from the effects of the drugs. Which is why I have ended up so different then average Dysautonomia patient, because that was the only different thing I did. Furthermore since that day I have found myself stuck with adverse reactions and hypersensitivity towards every single opiate, sedative, analgesic and stimulant on the market. So here we have another odd quirk and so many doctors have said the reason why I have adverse reactions to all these substances is perhaps because I had an overdose and now I am having post traumatic stress towards drugs and sex. However after pleading with my neurologist to administer the offending substance under labratory supervision whilst monitoring my vitals he is now convinced there is no pyschological factor as all the respiratory depression, lowered oygen levels, hyperthermia, arrythmias, and my calm state of mind during the reaction proved to him there is more to it...So I finally have evidence now to show the medical world however the frustrating thing is that I am stuck in such a crazy and unusual situation that all my odd quirks can be labeled as post traumatic stress making it difficult for me to find help as every odd symptom has some sort of relation to my initial overdose. It raises the question did the egg come first or the chicken and in my case am I having problems with sexual activity, adverse reactions to all psychoactive drugs and thermoregulation because I had a bad experience 10 years ago on drugs whilst having sex and felt feverish, or...am I having these symptoms because the drug overdose and hyperthermia damaged my hypothalmus, thermoregulatory controls and areas that govern sexual activity leaving me with these odd symptoms and the adverse effects I have towards all drugs is due to messed up brain chemistry and seretonin levels and hypersensitivity from the Autonomic damage ?

I have one of the worst responses to sex that exist in the medical world, in fact a lot more severe then any other POTS patient, and there is a reason why I am one of the worst cases out there...it is a somewhat a sensitive and emberassing story which I dont like to discuss but in this case I'm going to disclose what happened to me although you guys will certainly think I am an idiot for this... I actually damaged my Autonomic System and developed POTS during a recreational drug overdose on ecstacy and methamphetamines whilst a few hours into sexual activity. The fact that I overdosed and developed life threatening hyperthermia during sex whilst my brain chemistry was already flooded with sex hormones released in the brain during sex such as testosterone, vasopressin, oxytocin and dopamine in fact ruined my brain chemistry at its most vulnarable stage during the overdose leaving me with a very unusal version of Dysautonomia. So for the past 10 years whenever I feel aroused I go into a violent and painful muscle spams, hypertenison, arythmias and if I preceed past that point and engage in actual sexual activity I end up with hyperthermia, very rapid hr, disiness, nausea, chills, hypertension and in need of medical treatment, there have been many times where I have ended up in the ER simply for engaging in sexual activity. I have had high temeperature readings in hospital where they were amazed that I could develop without any other signs of infection or virul causes. I have even lost count as to have many near death type experiences I have had simply because sexual activity made me so horribly ill I didnt think I would live through it. I also made a post about the topic of sex and Pots in the past titled: Anyone Else Get Really Ill From Sexual Activity ? http://dinet.ipbhost.com/index.php?showtopic=14427&hl= For me it has nothing to do with the streneous activity or the physical movement from sex, it is all due to the brain activity that sex seems to mess up in me and unfortunately as far as I know there is no cure for this, although I have contemplated that if I could possibly stabilse my brain chemistry by increasing or decreasing my seretonin, dopamine, testostorone and all the other brain chemical levels involved in sexual activity and thermoregualtion I might find some relief however this is risky and experimental.

Other then the vest that has been already mentioned here is what I do..... STEP 1 - ----------- Go out to a hardware store and buy yourself a pump spray nozzle, the heavy duty type that is used in cleaning products that sprays a fine mist for eg. for window cleaning or from the gardening section one for spraying plants. Now see if you can find a smaller bottle to attach it to, something that will fit into your pocket, you may need to clip the tube that sits in the water and shorten it to fit the new bottle. Now fill it with water, attach the spray nozzle and put it in the fridge.... STEP 2 - ------------ Buy yourself a mini battery operated hand held fan. STEP 3 - ----------- Now the final step...every time you spray yourself with water from the pump spray water bottle use your mini hand held fan on the sprayed areas on your body, the moisture and condensation from the spray on your skin together with the air from the fan will give you an amazing cool relief. These two items have become a part of my life, I never go anywhere without them. I hope you can find the same amazing benefits that I do from doing this.

I am glad that it works for you guys but I have to agree with futurehope, crying in facts brings on all my ANS symptoms and the reason for this is that my ANS is so hypersensitive that being excited, upset, angry, laughing, coughing or feeling sad all seems to over-activate and over-stimulate my system resulting in fevers, headaches, tachycardia. For me my best mode is Neutral for everything which is particularly hard when your a passionate person.

Oops.. I forgot to thank you for that helpful link, it is much appreciated, thanks

That is so true, we get misunderstood for so many things, there have been times when I have been perceived as anxious for simply writing down the things I wanted to tell the doctor cause of how forgetful I have become and my poor concentration. The worst one is when you consult a doctor who seems like they are in a hurry and rushing the consultation without giving you much of a chance to talk so then you decide if you want to be able to express your situation in that short remaining time you need to fast talk to get your point across but then when you start talking fast they look at you like your having nervous breakdown and you feel like telling them the only reason your talking fast is to cram all the information in there because they are making you rush things with their impatient, rude, arrogant attitude and for stealing your time.

Overheating is my worst symptom, in fact I think I may be one of the worst cases out there due the circumstances that caused my POTS, most people with POTS complain about heat intolerance but mine goes way beyond that, when I have heat intolerance its actually a good day for me, because I suffer with much worse then that on daily basis. On a bad day I find myself with hyperthermia in the middle of winter. I have been hospitalized several times simply due to the fevers I have. Whilst my parents have the heater going in their room I have the cooling system switched on in mine but even that doesn't work sometimes because its such a cold winter here in Australia at the moment that when its anything below 59F my cooling system fails to switch on, so instead I often go outside topless into the winter cold which is currently around 46.5 F temperatures at night attempting to cool down and even that feels insufficient so additionally I often spray myself with a pump spray filled with water. At the same time my fingers and toes are so icy cold they feel numb whilst the rest of me is feverishly burning up. The worst is going under a shower and feeling all the weird sensations of hot and cold at the same time due to the massive differences of temperature and hot spots throughout my body. I generate so much excessive heat that often I can't even sit back into a seat or cushioned chair or lay down on my bed because of the amount of heat that gets transferred from my body into other objects and causes me to feel extremely uncomfortable and overcooked.

I agree with you all, I've also had the silent treatment and the "your very different", or "Ive never heard of that before" and even the unfair statements and their misdiagnosis being documented into my files. Ive had to change doctors several times after finding out the type of information contained in my files. I've even had to report doctors and file complaints after several had brushed me off as just having anxiety and one totally even dismissed my Dysautonomia and the reports I showed them from My Neurologist and Autonomic specialist. Its so ironic that whilst they claim anxiety and stress is the primary cause of my symptoms it is them that is in fact causing me the greatest anxiety and stress with their ignorance, arrogance and stupidity.

This seems to be a re-occurring theme in my life, whenever I mention those more uncommon symptoms to doctors they misinterpret it as me being overly anxious simply because they fail to understand it. They look at you as if your an anxious person who mentions every little quirk in their body making a mountain out of a molehill. I absolutely hate it when a doctor says "you should try not to dwell on it or find something else to keep you busy" as if I'm experiencing these symptoms because I'm over thinking in some way, that's absolute garbage. I don't suffer from anxiety and nor do I have any type of panic disorder and its not like I sit at home all day staring at the walls and thinking about my symptoms, for gods sake Ive been living with this for 10 years Ive learned to adapt and move beyond dwelling on it. The only reason I mention my uncommon symptoms to doctors is because they are the only remaining symptoms that cause me the most discomfort.... The unfortunate thing is I have loads of symptoms that just don't fit the text book definition of Dysautonomia, the latest one is Nocturnal Dystonias where I find myself constantly waking up through out the night in painfully contorted positions and finding my neck and jaw muscles locked up and stiff, I find that whenever I try to move my neck back to a normal position I get a very loud high pitch cracking sound in my neck and jaw followed my severe headaches, same thing happens to my neck whenever my POTS symptoms flare up or whenever I have an adverse reaction to medications, food and other chemicals. Of course when I mention this to my family doctor and the physiotherapist they both tell me they've never heard anything like it and that its probably stress related and I'm over thinking it or I might have Fibromyalgia, which I know for a fact that I don't. I have a feeling that my neck problems and the deterioration occurring in my joints have some sort of a neurological basis, it feels the same as restless leg syndrome except its in my neck, and the fact that the lock ups, the loud cracks and and stiffness only occur directly as a result of adverse reactions, symptoms flaring up or sleep, but no one will take me seriously because they have never heard of it. So how do you deal with the medical world when trying to find answers for your more uncommon symptoms without being labeled as a anxious person, the worst part is once they stop taking you seriously and wrongfully label you for symptoms that are in fact of a serious nature, it just stops any progress in finding help and you have to quietly suffer with it most likely for the rest of your life.

Damaged

I'm to blame for developing my POTS, going to rave parties for 5 years and taking ectsacy, amphetamines and lsd almost every weekend so I could dance up to 8 hours eventually resulted in a drug overdose one day, I ended up with severe hyperthermia, brain and autonomic damage and hospitalisation, lucky to have survived the overdose incidence I found myself suddenly with POTS and Autonomic Neuropathy. 10 years on and no improvement and I still feel guilty for having ruined my own life with such risks and total disregard for my wellbeing.

I also have problems going to sleep and often find myself staying up untill sunrise, I found a few quick fixes, antihistamines like "Periactin" that make you drowsy work wonders but your body eventually gets used to it, another one that works realy well in for me is Cannabis, gets me real tired and sleepy if I have it at night.

Elevated temperature always has a huge effect on my thinking and mood, I find that my mind goes into a chaotic state and I cant seem to focus on anything or think straight, I usualy act on instinct when I'm like that and immideatly go for whatever quickest method I can find to cool myself down. Its easier to manage at home of course but those times when I overheat whilst out are the worst, it sends me into a panick mode and I run around like a headless chicken trying to find a way to cool down, often I have ended up in the ER from these temperature problems and even confused the doctors there as to how elevated my temperature gets without any sign of infection or other factors. In summer I usualy cover the car windows with sheets when going to doctors appointments, its so bad that even a little bit of sun on my skin is absorbed like a sponge making me feel sick. Heat can be such a horrible element, as worse as the cold is I would much prefer freezing then overheating, at least when your cold it is easier to find ways to warm up but cooling down or reducing a fever is much more challanging. The heat sensation feels almost sufficating when it encompasses you, and unintentionally every time I get feverish I become easily irritated at everything. Its like when people get really upset and angry they may feel hot however with me its vice-versa, its like the heat sets off emotions that are associated with it, so you end up beacoming angry and irratable without wanting to just beacuse of the fevers. For the first few years I also kept a diary of my temperature abnormalities, I found there were gradual shifts and changes that would occur over longer periods and even temporary miracle cures where a sudden onset of the flue would further elevate my fevers and just when it felt like I wasnt going to make it through it would suddenly reset my thermoregulation back down to a normal level better then previously, but the cure only lasted a week or two until the next flue set in. Unfortunetly even after 10 years of daily temperature problems it doesn't get much easier, you learn to live with the mild fluctuations and mild fevers and use whatever immediate fixes you can find but those larger spikes and drops still feel as horrible as always. Although your temperature seems to have changed from previously what causes you the most discomfort now, is the the heat or the cold?

Temperature regulation is my worst symptom, I have been battling with daily temperature problems for the past 10 years, the only thing I can do is to constantly adjust my environment to balance the wild fluctuations I experience, I have a cooling vest, a pump spray water bottle that goes everywhere with me, a ceiling fan, a wall mounted cooling system and a heater in my room, I contantly alternate between all of them to stay comfortable. What makes it even worse is that I get different temperatures throughout my body, often when I start to get feverish my hands and feet become icy cold and at other times my hands and feet are burning hot, so bad that I have to constantly stop and take my shoes off when Im out walking. I often experience hot and cold sensation at the same time, especially when I go under the shower and find that the water always feels icy cold on my scalp because my head is so hot but the same water feels extremely hot on my fingers toes and other cooler areas on my body. For the past 10 years every night I have to wear head warmer because the crown area of my head gets icy cold at nights but during the day I have to constantly spray that exact same spot to cool it down. On a bad day I have even developed hyperthermia and ran for the cold shower, then sat in front of my cooling system with a wet towel but then an hour later I start shivering and go under the blankets and switch the heater on only to find myself feverish all over again, I have even at times gone outside in the middle of winter and sat outside trying to cool down. I put clothing on as fast as I take them off, its crazy. My thermoregulation is totally messed up.

Omg what a coincidence, I just came online to create a topic about neck problems and then I saw there was already one here ... I have some very odd and unusal neck problems, I find that whenever I take an medication or substance my body is sensitive to it immedeatley effects my neck, what concerns me is that the area that I have problems with is always in that same spot where the neck connects to the skull, so basically the brain stem area where the last disk is, it becomes bery painful, stiff, noisy and inflamed and I find the slightest movement causes craking and squishy sounds. The neck pain always causes severe headaches and the other odd thing is I find that I keep waking up during my sleep to bend and crack my neck and once the tension is released from the painful areas I go back to sleep only to repeat the process many times through out the night. The neck problems started same time as the POTS, i feel certain there is a link because when my pots symptoms worsen so do my neck symtoms.

Thank you guys for your well wishes, I would just like to add though that I dont want to put off anyone that would potentialy benefit fron Cannabis to avoid it simply due to my reaction but it is worth mentioning that for people who have slowed digestive motility where things arent flowing or working as they should it could possibly help stimulate the digestive tract whilst relaxing other parts but for someone such as myself who suffers from an unstable overactive system where everything is already in a chaotic hyperactive state whereby symptoms shift and fluctuate from one extreme to the next it was really a bad choice.

I had been contemplating the use of cannabis for sometime now as a form of alternative therapy to manage my chronic pain, one of the main reasons for wanting to try it was due to my unusual version of Dysautonomia whereby every substance that acts on the Autonomic System was causing me severe adverse reactions such as sedatives, analgesics, stimulants and opiates. I had enough of countless emergency room visits and near death experiences after taking opiates for my pain... So I finally tried Cannabis and it turned out to be a huge mistake, Whilst I was afraid it would cause issues with my vitals which ended up at blood pressure 197/106 ( a new record for me) and hr at 129 (not so bad) it turned out to be the least of my worries as that the major concern which I least expected was in fact my gastrointestinal system. I found that in the past week every time I smoked cannabis it was totally messing up my digestive tract by increasing movement and resulting in acid reflux, intestinal spasms, vomiting, frequent belching and regurgitating mouthfulls of food and stomach acid. It just got worse and worse after every trial, and last night I was in agony and constantly waking up to run to the bathroom and spit out stomach acid and today I've been having stomach pains all day long even though I haven't tried any cannabis I feel so nauseated almost as if I have motion sickness. The last time I got this was as after trying the anti nausea drug Maxolon which apparently increases the rate at which the stomach and intestines move during digestion and the rate at which the stomach empties into the intestines effecting the lower esophageal sphincter and increasing gastric antral contractions. I already have problems with rapid gut motility so taking a drug that also speeds up movement resulte in many months of agonising stomach pains, gastroinsteianl problems and distrupted bowel movement making me pledge I would never try Maxolon again but now it seems Cannabis had a very similar effect and it feels like it might be months before I regain stability. After looking online today I found many others complaining of similar digestive problems on cannabis and and explanation that cannabis can actually worsen symptoms of gastroesophageal reflux disease by decreasing resting pressures of the lower esophageal sphincter. So it seems the damage is done and I just wish there was way to reverse the process.

Obviously a lot of us require the use of beta-adrenergic blocking agents to control heart and blood pressure symptoms but there is so much different types on the market and after reading your responses I began to ask myself if I am on the right or the best type of betablocker to control my symptoms. I have been on a betablocker with the active ingredient "Metoprolol Tartrate" for the past 9 years , without my betablocker I am unable to stand up, walk or function without my heart doing back flips but the problem with the betablocker I am on only lasts 5 hours before I have to redose. In the past I tried other betablockers that lasted longer but they just made me feel ill, so my question is how does one find the right betablocker and what are the main differnces between all of them ? Also the most important factor for me is to find a betablocker that works rapidly, when I forget to take a dose or when I'm away from home and my syptoms begin to act up I need a fast cure instead of waiting around 15- 30 minutes for the betablocker to take effect, is there by any chance an iv form of betablocker to use in emergency situations for rapid relief ?

I have the exact same problem, I used to often complain that I was no longer able to play some of my favourite video games or watch movies that contain exciting scenes. I found myself getting too engaged and my body flipping out from it, especially with video games my heart would become too rapid so I had to give it up unfortunately.

Thank you so much everyone, you guys have shared some very useful information. I do infact have hypermobility as mentioned and I had never even considered Ehlers Danlos Syndrome but it would be worth getting checked for that too seeng as it is a possibilty. Broken_Shell, this is something I am emberassed about because it was big mistake on my part but before I developed Dysautonomia I was heavily into the rave scene and dance party's, I used to take ecstacy and amphetamines to help me dance all night sometimes up to 8 hours, I was lost in the world of partying and drugs until I had a drug overdose one day that damaged my Autonomic System and then my life was changed overnight, it was huge wake up call.

Thank you so much, your response means a lot because those unexplained symptoms add to the frustration and now knowing that some of it it is shared by others who have Dysautonomia has made me feel at ease, so #2, #6 and #7 are covered , anyone else have the others ?