Troy

Since I was diagnosed with POTS and Autonomic Neuropathy 9 years ago I have been having the usual symptoms as everyone else but I have also been having a lot of unexplained bizarre symptoms that have me puzzled and concerned, I was hoping you guys can clarify or compare with yourselves and tell me if its normal...... 1- The crown area of my head gets very hot during the day and requires constant wetting and cooling but at night time the exact same area gets very cold. So cold that I have to constantly wear a head warmer (beanie) to be able to just sleep. As soon as my beanie comes off during the night I immediately wake up with a runny nose due to the uncomfortable icy spot on my crown area. How can I experience two opposite extremes as such ? 2- When I walk my feet and hands become very hot and I find that I have to sit and take my shoes off during walks due to the uncomfortable burning sensation to let my feet cool down but when I'm usually sitting at home my feet are always extremely icy cold. 3- When I experience adverse reactions to drugs, medications, food, or when I get excited, aroused, angry or take part in sexual activity I develop hyperthermia or high fevers and my neck becomes painful, crackling and stiff. 4- My body rejects all substances that act on my autonomic system such as caffeine, alcohol, sedatives, anelgesics, opiates, stimulants, SSRI's 5- Since the Dysautonomia there have been unexplained deterioration in my muscles and joints causing torn ligaments and cartilage, can Dysautonomia attack the muscles and joints ? 6- When I sleep I wake up many times to find myself in contorted positions due to aching and restless leg syndrome and I also find my neck and jaw locked up and I wake up many times throughout the night subconsciously clicking and cracking my neck and jaw to release the tension and go back to sleep. 7- I have rapid shifts in autonomic functions where one day I'm drinking fizzy soda drinks to help the bloating and digest the food I ate and a few hours later I am drinking anti-acids to slow the digestion process and control the acid reflux, everything seems to shift from one extreme to the other, from hot to cold, from rapid gut motility to abnormally slow, from hypertension to hypotension, from bradycardia to rapid hearts rates, there is no normal or balance.

I have tried the compression socks that is used for airline travel to prevent thrombosis but I found that any level of compression worsens the coldness I already have in my exteremeties due to restricting blood flow, do you guys have this problem with compression ?

I have been considering naltrexone or naloxone for sometime now to counteract the adverse reaction that I have towards all opiates. I suffer from chronic pain and its been exteremely difficult trying to take the opiates due to my chemical sensitivityso I was hoping I could solve that problem with a low dose of naltrexone but my specialist refused as he said that I could also have an adverse effct to the naltrexone, I'm still curious to try it tho so any suggestions on how much to use at first ? How much was your son taking ?

This is going to sound odd but how a rare it is depends on the person because not all POTS is the same, my version of the POTS is very different then everyone else and extremely rare because of the circumstances that caused mine left me with very different symptoms. For example someone who developed POTS due to a viral cause has different symptoms and a different version of POTS than someone who developed it from a drug overdose such as myself. Because the drug overdose damaged other areas of my brain and autonomic system then the areas a viral infection would so the outcome is also very different, even though the doctors call it POTS, compared to you guys its like I have atotally different illness altogether which is very frustrating for me.

I have very severe case of flushing without MCAD. My face is always hot and its been that way for the past 9 years since I developed POTS, Temperature dyregulation is my worst symptom, In that 9 years there was a only dozen times when my face actually went back to normal and felt cool to touch and I was so excited I was running around the house showing my parents that my fever had dropped after many years, course it didnt last I have my coooling system on everyday, even in winter, and when I'm not I wear a cooling vest and always carry a pump spray water bottle to spray and cool myself down. I have ended up in hospital many times with fevers and hyperthermia and I have been told I have one of the worst cases of temperature problems my Autonomic Specialist has ever heard of, so don't underestimate POTS.

As soon as I saw the title of your topic I knew exactly what you were talking about as I have also been experiencing this for several years. Its like my body over reacts just as someone having a panic attack would but there is absolutely no fear or any anxiety with it. Its more like a symptom, before I take my betablockers in the morning or when I forget a dose my body flips out also in a similar way to a panic attack but then there are times when it occurs randomly even after medication but I thought it was something that just happened due to the Hyperadrenergic type POTS.

Thanks everyone for your responses. EarthMother it definetly feels like my body is having a hyper reaction to the adrenaline and towards the sex homones that are released such as oxytocin, vasopressin, endorphins and dopamine. I already have a very severe chemical sensitivity towards all opiates, sedatives, SSRI's and stimulants so it makes sense that I'm also reacting adversly to my body's own chemicals. I can't believe I hadn 't realised it earlier, in fact the adverse reaction I have towards the mentioned drugs is almost identical in the reaction I have from sex so it all makes sense now, thanks .

For the past 9 years since I developed Autonomic Dysfunction I have been having some seriously bad responses from sex and arousal. I find that being aroused sends me into uncontrollable muscle spasms and twitching and then if I decide to engage in sexual activity I end up developing hyperthermia and high blood pressures. There have been many times I have gone to the ER directly as a result of sex and many times where I was certain I would die from the horrible effects. The odd thing is that it is not the exertion causing the hyperthermia or the increased blood presure but in fact the reaction my brain has to the chemicals released during sex, even if I dont exert myself at all I have still ended up with blood pressures around 195/100 and tempeartures up to 39c (102.2), when I go to the ER they check for signs of infections as they are suprised at my level of fever and often I dont tell them it was the sex as I find it emberassing so I just say my Dysautonomia is causing it. If I end up preceeding to the point of orgasm then it turns for the worse and I end up with irregular and rapid heart rates for the next 2 hours after and I have to run directly for the cold shower as the hyperthermia becomes very severe, It actually feels like my brain overheats as there is so much heat rising from my head, I just sit under the cold water for 30 minutes and then after I spend another 2 hours infront of my cooling system with a wet towel trying to feel normal again. I dont know if there is anyone in the medical world that can help me with this problem but is there anyone else that is having this type of response from sex ?

Yes I understand very clearly, you could be right I might need to see an Endocrinologist, thanks so much for your help. You are very insightful and I also agree it is probably something like "over responding to hormonal fluctuations" because I find that my body overresponds to everything including medications (hence the adverse reactions), sexual activity, temperature and even the own chemical changes in my own body, if I get slightly angry or excited I overheat severely and feel ill, every morning I also have a weird morning sickness and throwing up because my body cant handle the changes from sleeping to waking up mode, so your spot on. Thanks

Thank you so much Julie, you are very kind, I will look into all your suggestions,

Hi, thank you for replying. Here in Australia we are a bit short on Autonomic Specialists. Ive been seeing Professor Murray Esler who is our version of Dr Grub but he says there is not much he can do for me because my situation is too unusual and that I would need to locate a reasearch scientist and someone working in the field of toxicology and pharmacology to help. Ive contacted various people around the world but it seems no one wants to help. I realise its all my fault that I developed a bizarre twisted version of Autonomic Dysfunction when I overdosed on a combination of ecstcay and amphetamines 9 years ago which resulted in severe hyperthermia and neurotoxic effects damaging the intricate areas of my brain, temperature regulation and sexual function. I probably deserved it but why did it have to leave me with such rare and uncommon symtoms, I feel like God played a cruel joke on me because I was unlucky enough to hit the jackpot in developing such an uncommon version of this illness and now Im tormented by symptoms that no one can diagnose, I feel doomed and the worst part is knowing that if a good team of scientists got together they could work out exactly what has happened to me but I know that I will never find that oppurtunity, even lab rats get more attention then me and here I am a guy who managed dveloped unusual symptoms as a result of a freak accident yet no one can give me the time of day. I live with my parents and they are aware of how frustrated I am with my body, but I dont feel comfortable telling them how desperate I feel as I dont want to cause them grief but at the same time I feel myself slipping as I continue to cause myself adverse reactions everyday. I understand there may never be a cure for my illnes but all I wanted was a proper diagnosis and Im angry at the medical world for failing me.

My body is such a mess I dont even know where to start with this but I really need help from you guys....we all have our quirks and odd symptoms but for the most part our minds are put to rest by the diagnosis we received and knowing that others have the same symptoms and discovering our limits and knowing what to expect from the illness and that our symptoms are just a result of the condition, however I do not have that comfort because I'm still in uncharted territory and my body is still doing weird unexplained things outside of the illness I was diagnoised with, I dont understand why I am so different from everyone else... We all have fluctuations in our vitals due to certain factors but mine are quite extreme. For the past 9 years I have battled with fevers above 38 c that often occur randomly even in the middle of winter, and usually the colder it gets the more my fevers increase, which is unheard of. Unlike others with POTS my fevers are not caused by external tempearture, its my body that constantly generates excessive heat which is only worsened by warmer environments so I have to keep my room at a constant 20 Celcius both winter and summer for me to be able to cope. Furthermore I am allergic to ALL sedatives, anelgesics, stimulants, opiates and even alcohol, if I take even a small amount of these substances I end up with hyperthermia and seriosuly messed up vitals. Again unheard of, I know most of you guys have some chemical sensitivity but who else has a reaction TO ALL THE SUBSTANCES I MENTIONED ? How can I have such a broad spectrum sensitivity to everything that acts on my Autonomic system ? Furthermore the advers reactions I have also cause very bizare symtoms unlike anything I've ever heard of.. Sexual activity and arousal also mess up my vitals, I often end up with hyperthermia and muscle sapsms from just being aroused, THIS MAKES NO SENSE! If I preceed past the point of arousal then I end up in a state requiring emergency treatment due to dangerously and severely fluctuating vitals. I often feel like all thses odd symptoms I have bring me very close to death. How far can your blood pressure and heart rate and temperature increase or decrease before you cross that fine line resulting in fatality ? I just wish I had a normal version of the POTS and Autonomic Neuropathy I was diagnosed with like everyone else but I dont, I have a bunch of weird symptoms that no one can explain and everyday I feel like I'm cheating death.... Today for example I took my usual dose of 5mg oxycodone for chronic pain, I measured my blood pressure before the medication it was at my usual 125/70 and a heart rate of 68 bmp and tempearture 37.4c everything was normal, then 45 minutes later the adverse reaction started I measured my blood pressure again now it was 178/93 with a heart rate of 46 bpm and temperature of 38.4c ...THIS MAKES NO SENSE !! How can my heart rate drop so low whilst my blood pressure increases so much and my temperature increases by over 1 degree ? So I went and lay down trying trying to relax and doing breathing excercises but whilst that droped my blood pressure down to 155/80 it had a worser effect on my heart bringing it even lower to 36 bpm, I honestly thought I was going to die and I felt like it too. I was about to take an extra dose of betablocker but I realised that could bring my heart even lower so I just went under a cold shower and just sat there for 30 minutes until my sympotoms settled back to normal and my temperature came down. 1 hour later I felt sexually aroused which seems to occur inappropriately in my case due to messed up brain chemistry from a drug overdose I had 9 years ago (long story) well anyways the arousal sent me into severe muscle spasms as it usualy does and fevers again I tried to ignore it yet it got too intense so I tried to take care of the sexual urge but imideately upon attempting I found myself feeling like I was going to die again so I went checked my blood pressure and this time it was up to 193/102 and my temperature was now 38.9c , I got really freaked out and lay there contemplating wether I should call an ambulance but then 10 minutes later it settled again however the arousal feeling did not, so eventually I was able to take care of the sexual business but with great risk as everytime I felt aroused it directly effected my Blood pressure and temperature, the odd thing is though its not the exertion but the actual arousal messing up my vitals WHICH MAKES NO SENSE cause if you search online you will see all the people experiencing complications from sex is due to the exertion that further messes up their pre-exsiting condition unlike the arousal thats making me ill. Then right after the orgasm I found myself very dizzy with irregular heart and severe palpitions and checked my BP again and this time I found that it had droped from around 190 drastically to 102/55 and now I was battling hypotension with heart rartes around 159 bpm which is exactly the opposite of what I had hours earlier where I had dangerous hypertension with low heart rates. Im starting to lose sleep over all my unexplained symptoms as it causes me so much anger, hatred at my body and great frustration. Every specialist ive seen acknowledges that my case is unusal but non of them actually take the time to work it out. Someone please help me.

Thanks for all the information, but I would really like to know from those of you who had bad reactions how much you actually had before it made you feel horrible, this is really important information for me so I know wether it only takes 1 puff to end up feeling horrible or several puffs because if i can figure out that nothing bad will happen from a single inhalation then that would be a great start to managing and controlling the reaction. cheers

Excellent information, thanks very much, unfortunately here in Australia there is no marijuana clinics, as far as I know its all illegal so its harder to get the medical variety as opposed to street, I envy the the United States for their system.

Thanks Tammy, that is very helpful and exactly what I wanted to know

Thanks, your help is much appreciated, I was wondering when you did have a horrible reaction was it of just one puff or more ? Because I believe I too would have the same reaction as you did and thats why I have decided no matter what I will not have more than just one small inhalation, however if your bad reaction was off just one small inhalation then in that case I dont think I will risk trying it at all, Im looking forward to your answer, thanks.

Thanks for the tip, I found a topic titled "Cannabis, No judging!!" , A few on there mentioned the worsening of HyperAdrenergic symptoms. In that case I still need an answer on betablockers as it was not specifically covered, I would like to know if it is safe for someone whos been on betablockers many years to ocasionally take a double dose to compensate for say a heavy bout of excercise or activity or smoking pot ?

I'm considering trying medicinal Marijuana for my chronic pain and to relieve some stress, however I wanted to speak to you guys first as I am unsure how my body will react due to my POTS and Autonomic Neuropathy. The problem with me is that I also have an unusual chemical sensitivity to all analgesics, sedatives, stimulants or any other substance that acts on my autonomic system. For the past few years I have failed to manage my chronic pain because every opiate pain medication I have tried has caused me severe adverse reactions resulting in trips to the ER with fevers and hyperthermia, muscle spasm and jaw clenching, irregular heart and abnormaly and rapidly fluctuating BP but mainly hypertension around 180/95 accompanied with a bradycardia heart rates around 45 bpm, increased head pressure causing headaches and neck pain, confusion, agitation, respiratory depression and feeling very unwell. My Autonomic system is totally messed up, even one glass of beer makes me very feverish and feeling horrible. Before I developed POTS 10 years ago I smoked pot a few times and it was great however I am unsure if in my currents state if I would have an adverse reaction ? I'm mainly worried about it messing up my vitals such as blood pressure and heart rate so I'm considering taking an extra dose of my betablockers, is there likely to be any issues with the interaction of the two ? I can imagine you guys disapproving of my actions however I have my reasons and Ive had enough of being in pain all the time both emotionally and physically, I really need to do this but I need advice on what to to expect if things go bad and how I can minimize experiencing adverse reactions. thanks.

Hi, I too have POTS but I am also confused with some of the terms used such as... -Othastatic Hypertension (postural hypertension) -Orthostatic Hypotension (postural hypotension) -Orhastatic Intolerenace -IST how are these all different than just POTS ?

This medication sensitivity is the most troublesome out of all my symptoms. I have an adverse reaction towards all sedatives, analgesics, stimulants, opiates and even alcohol. This makes it extremely troublesome and upsetting as I suffer from chronic pain and need painkillers. I have tried many times to take painkillers in small doses and ended up in the ER with adverse reactions, this never used to happen to me either before the Dysautonomia. I think the cause of this problem needs further investigation by specialists out there.

Thank you Carinara, thats a very kind and generous offer, Im ok though as I speak fluent turkish as well. I am now on the way to recovery I feel like nuch better except for a nasty cough. I feel like I`ve just come out of an all out battle and it will be some time before Im back to my usual self.

Thank you Carinara, I am so thrilled that I too stumbled upon the same realisation discussed in your topic and even made the same thread. . I really believe there is something more to this phenomenon that needs investigating. Maybe even a pots cure is hidden within this. I can now happily let this thread be closed. PS: Im going to request my autonomic specialist do a table tilt test on me without my medication the next time I develop a cold, if the results show a significnt improvement then he may take this seriously enough to begin investigating.

wow!! so there were others in a previous thread who experienced the same thing?! if anyone could find the link I would appreciate it. let me make something clear tho, I too have been bed ridden for the past 3 days and have literally had the worst time of my life and experienced severe palpitations a lot worse than when I didnt have the flu however the last 2 mornings when I got out of bed my heart didnt race at all, everything else was still exteremely bad and later in the afternoon I had a horrible episode with my heart but still the fact that I missed out on the morning episode is amazing for me....could it be certain chemical changes in the body during sickness or maybe the body is busy fighting off the illness that it somehow reduces the effect on other symptoms for a short instance???

For my POTS I take Betablockers every morning just so I can get out of bed and function without my heart racing out of my chest but to my suprise Ive noticed each time I get sick with a bacterial or viral illness, a cold or a flu I find that an odd miracle occurs where my postural symptoms temporarily dissapear, especially in the mornings whe I step out of bed without my heart racing. This usually occurs in the first few days of the illness and I often find that I have forgotten to take my betablocker for a few days without being troubled.... but then when the heart symptoms do occur or come back during the illness they are much much worse that even the slightest movement sets me off and has me tachycardic....so I guess what Im saying is of course the cold or flu worsens my POTS symptoms like others however there are moments in there where my postural symptoms totally dissapear and I have noticed this time after time over the years..can anyone else explain the mechanics behind this or verify the same expeience?

Thank you all for your support and well wishes, I think your prayers did me some good as I spent my first night in 6 days without experiencing a high fever. Im still very run down and ill but at least the fevers gone for now. masumeh thank you for your great advice, and you are so correct about the ER, it was horrible, they requested that I pay first which was fine with me but then their computers were down so they coldnt process payemnet so they refused to treat me until they were working again so I had to wait an hour with high fever inside the ER without treatment. It was also very unhygenic, the nurse was rolling a cotton ball around in her hands without gloves which she used on me after she pulled out the syringe. Soon as Im well enough I will consider an emergency travel back.