Troy

I am extremely senistive to any substance that acts on my ANS so I had to have my endoscopy and colonoscopy unsedated and let me tell you it was very unpleasant. It seems a lot of people with POTS tolerate substances like caffeine, alcohol, anestheisa, opiates, sedatives a lot better than I do but if I have even a small amount of any of those subtances i end up in the emergency room with severe adverse reactions and distruptions in my vitals and body temperature, I am pretty sure you will be fine if they take some additional precaution, my case however is a bit more unique and bizarre.

I also wear a medical bracelet, but mine is to alert paramedics to refrain from giving me any substances that act on my Autonomic Nervous System, Due to my Dysautonomia I am extremely sensitive to all sedatives, opiates, anesthesia, stimulants and if they gave me morphine or ephinephrine for example during an accident it could kill me.

I have hyper version of POTS and anything that tweaks my brian or Autonomic Nervous system seems to cause even a more hyper response. When I tried SSRI's it caused me to become even more overheated and develop fevers, The SSRI's also ruined my sleep and messed around with my blood pressure and gave me more tachycardia. It was horrible for me but it could be different for others and the only way to find out is to give it a try in small dose.

Sylvan, some of what you said sounded familiar You mentioned how experiencing heat stroke left you with continued sensitivity to the heat afterwards, well that is no suprisre to me because in my case increased temperatures and hyperthermia was one of the major causes that damaged my autonomic nervous system and resulted in POTS and left me with ongoing fevers and intolerance to heat for 11 years now. My POTS was caused by my own wreckless and stupid behaviour...when I was younger I used to go to rave party's and take recreational drugs like ecstacy and amphetamines which often caused me to become very hot and dehydrated from dancing for many hours. One night I had a drug overdose which increased my temperature to a near fatal level, my entire body felt like it was on fire and I was burning up and so overheated that I immediately ran for the cold shower and sat under there waiting for the paramedics. They placed me in an ice bath in hospital to reduce my temperature and even though that saved my life it was still not enough to prevent the brain damage I suffered from the amount of high heat my brain was exposed to. When I left the hospital I was no longer the same person and had developed all these new symptoms as a result of the damage to my Autonomic nervous System. I have been overheating for the past 11 years since that day so when you mention how experiencing heatstroke leaves you sensitive to heat I know exactly what you mean. Like with me my neurologist says I have one of the worst cases of heat intolerance they have ever heard of in someone with POTS, and the reason for that is because of how the hyperthermia and the toxic effects of the drug overdose damaged areas like the hypothalamus in the brain which controls body temperature. In your case even though you weren't taking recreational drugs, the medication you took may have still contributed to some damage and the increased temperature resulted in further complications. A bad reaction to medication combined with heatstroke seems to be one of the potential factors in being able to cause POTS, as I experienced myself

I am tempted to try Choline because of how sensitive I am to so many substances. I have ocassionally felt very fatigued and had no motivation to get out of bed or move, this happned just last week and what i did to overcome it was to make my self the first cup of cofee I have had in over 10 years. At first I was worried and prepared myself for the worst expecting the ceffeine would give me tachycardia but suprisingly i tolerated it well and it helped me overcome the fatigued feeling. So if you can tolerate it i would recommend cofee

There are way too many arrogant doctors out there and sorry to hear what happened to you but if you want to hear a shocking horror story then listen to this.... One doctor told me within the first 5 minutes of seeing me that there was no such thing as POTS and then she diagnosed me as having clinical anxiety instead. So I presented her my specialists reports showing a diagnosis of POTS and then even with that paperwork she dsrepectfully dismissed 3 specislaits reports written by my Neurologist, Cardiologist and my Autonomic Specialist (two of which were Professors) . I could not believe how arrogant and narcisistic she was, I became so upset I walked out of there without paying for the consultation and soon as I got home I contacted the Health Services Department to lodge a complaint. When they questioned her about her behaviour she then shamelessly and malicisously lied about the whole thing claiming that I went there and demanded her for Valium (benzodiazepine) and when she refused I aparently became violent towards her :o I then wote a letter to the medical board explaining that she had lied about me and that I could prove she was lying because I was unable to take Valium due to my sensitivity and adverse reactions to depressants, stimulants, opiates and any drug that acted on my ANS. But before I could send the letter off, my family stopped me because they noticed a car parked in front of our house surveillancing us from morning till night everyday for about 2 weeks, a person sat in the car all day long wearing sunglasses. We live at the end of a street which has "no through road" and this car stuck out like a sore thumb. The crazy stalker doctor knew where I lived and was obviously trying to send me a message and scare me off, and unfortunately it worked because my parents did not want trouble and made me call off the complaint report. To this day I am still upset that I let such an evil, corrupt, deceptive, dishonest and incompetant doctor getaway with such behaviour. I hope she rots in ****

If you never previously had an allergy to antibiotics prior to developing POTS then it is unlikely you will have a reaction to them now but having said that it also depends on the type of antibiotic too. I am very sensitive to medications since I developed Dysautonomia and I have some very severe adverse effects to many drugs, however I have never had a bad reaction to the most commonly used type of antibiotics like Amoxicillin, Penicillin and Doxycycline, but I have had a reaction the Antibiotic called "Augmentin Forte" which is an antibiotic containing a substance called "Clavulanic Acid". Although I tolerate penicillin, it still causes problems with my tongue causing thrush as it also kills the good bacteria in my gut, this is why I usually why I ask for antibiotics like "Cephalexin" instead. Unfortunately I am currently going through one of the worst infections I have ever had in my life which consist of a painful ear infection, blocked Eustachian tube, severe vertigo, nausea, fever, infected tonsils, extremely painful body and muscle aches and cold sweats every night and I have been in and out of hospital several times in the last 3 weeks trying to recover from this infection. I am on my 4th course of antibiotics and every time I finish a box my infection takes over again and being on a high dose of antibiotics for 3 weeks has caused me severe stomach aches, cramps and constipation. SO I guess if you are on a high dose for too long then it can still mess with your body especially when you also have POTS.

I am also undecided between two symptoms, either the "temperature problems" (heat intolerance, fevers, overheating) or the "chemical sensitivy" (intolerance to all stimulants, depressant, opiates and any other drugs that act on my autonomic system).

Thanks for reading my rather elaborate rant and I appreciate the support. I am on antibiotics currently and in for a long wait to see the ENT, apparently could take up to 5 months with the horrible medical system in Australia. Tachy, very interesting discussion there but I somehow don't think the doctors I saw were smart enough to consider all the variables you pointed out, they just seemed like clueless doctors. One was a fairly young female Asian doctor who couldn't speak English very well and I had to explain to her that it is possible to get an Ear infection from getting water into your ear hence the medical condition known as "Swimmmers Ear" which is a result of accumulation of water in the ear which becomes unsterilized and results in an ear infection due to bacterial causes. The Doctor also had no idea of the medication named "Serc" which I had to spell to her then explain its like "Stemetil" which is used for vertigo due to labyrinthitis or loss of balance due to ear problems. In a nutshell my point was that I could see my ear problems were due to "cause and effect" however these doctors were trying to convince me otherwise. I find it offensive when you explain a problem with certainty because I was there when it all happened and they weren't, I experienced and watched complications occur progressively following an incidence that triggered it but within 1 minute of seeing me doctors try to feed you all this other possibilities that you know are not relevant. Same thing happened to me when I developed POTS they tried to claim it was just anxiety causing the symptoms, when i got diagnosed with POTS and explained the overdose I had triggered it all they tried to insist it was something else, when I have reaction to medications and end up in the ER they try to insist it maybe another factor causing the reaction such as anxiety, when I develop overheating during summer and seek medical attention they try to claim the fever is probably due to a virus, doctors always seem to undermine my word on my own body, I can go with so many examples where I know my body well enough to realize the cause of the problem but these doctors try to insist on another factor. I find it arrogant and narcissistic on their behalf that they can conclude with such certainty when in fact I know they are wrong. In most cases I believe I know my own body better than them because I have had experience living in it for as long as I have.

I am extremely sensitive to meds, I couldn't tolerate Clonodine or Toprol (Metoprolol Succinate) but then I found the one...its so subtle, it only does what it needs to do without any other side effects...behold the glorious..... METOPROLOL TARTRATE Brand names Lopressor or Betalock I've been on it for 10 years and I'm yet to see any side effects from it, I truely believe it is one of the most gentle and well tolerated betablockers out there, all it does for me is stop the postural induced tachycardia and nothing more or less than that.

Finding a decent doctor is such a difficult challenge and I always seem to end up consulting the most idiotic ones. The latest problem started after I went to my usual family doctor seeking treatment for a randomly occurring sound in my right ear. For the last 4 months I have been experiencing sounds in my right ear that resemble many little tiny soap bubbles popping or even more like the sound you hear when you listen to the fizzing bubbles inside a can of coke. The problem was occurring maybe few times a week. So my doctor takes a look in my ear and says it could be wax and suggests ear syringing/irrigation. He then uses a large metal syringe and flushes my ear about 4 times... Immediately following the procedure I can tell something is not right...I have never had any problems with my hearing in the past and going into the procedure I had assumed my having my ears cleaned would make my hearing even better but instead my right ear ends up feeling totally blocked and water logged and everything sounds muffled, when I stand up to walk I feel dizzy, nauseated and every time I take a step I can feel a vibrational echo and fullness in my water logged ear. My doctor tells me it would improve throughout the day but instead when I get home I spend the next few hours with ear pain and trying to unblock my ear by tilting to get the water out but with no success. The pain in my ear continues to get worse and by night time my heads spinning and I end up with a fever and continued nausea. I try to look on the bright side and tell my self at least getting the wax cleaned out probably fixed the crackling ear noises I have been getting for the last 4 months, but my excitement is short lived as the noise strikes back but this time much worse than before and now occurring every 30 minute intervals and lasting the entire day. When I try to pop my ears by blocking my nose and blowing, only the unaffected left ear pops but fails to unblock on the right. The next day I wake up to a taping sound and find out to my horror the sound is actually in my right ear. I have a fever and the entire right side of my head is in pain and my ear feels like its going to explode from the pain and pressure so I head off the the ER and explained the situation about the noise and the other symptoms. To my surprise the doctor blames the dizziness and nausea on the POTS which she can see from my history, I try explaining that immediately following the ear irrigation I haven't been able to walk in a straight line and the dizziness and nausea is unlike anything I get from POTS, she doesn't seem convinced and then she claims the crackling sounds is probably just tinnitus and its fairly common occurrence and nothing to worry. She fails to acknowledge my concerns that the prior to the ear irrigation procedure I was only experiencing the noise phenomenon a few times a week and only lasting a few minutes but now since the irrigation it was a lot more severe and frequent and appeared to be aggravated by the cleaning. She then looks into my ear and diagnoses it as an inflamed and infected ear canal and gives me antibiotics and ear drops. I try explaining that I'm not so much concerned about my outer ear canal problems as much as I am concerned about the constant nausea, dizziness, and the worsening of the sound which to me all feels like an internal ear problem rather then the external ear canal problem yet she brushes it off and sends me home. I find that every time I use the ear drops she gave me my ears get waterlogged again as the drops of liquid fail to expel or evaporate and in the last 3 days of treatment my ears has no continued to get worse. So I went to a different doctor today and explained I developed problems and ear infection following the ear irrigation and have been continuing to get worse but she laughed at me saying there is no way ear syringing could cause any ear problems or infection and it was unheard of. I explained my ear was blocked with water the entire day and my hearing muffled but argued there is no way water could get stuck and it would just come out when you tilt your head. She then began to act sceptically asking how often I get dizzy prior to the ear cleaning. She then concluded my recent ear problems was all just a coincidence and I may have caught an air borne virus of some sort... I am so annoyed right now, its not the first time a doctor has given me the "there is no connection between this and that and its all just a coincidence". That's as logical as claiming 1+1 = 99 I could stick my hand in a meat grinder and she would probably tell me it a coincidence I'm missing my hand because my hand was likely to fall of anyways due to unknown circumstances. T I'm in my mid 30's and I've only ever had ONE ear infection in my entire life and that occurred when I was about 10 years old... Somehow according to her the very moment I decide to get my right ear cleaned for the very first time in my life a virus coincidentally chooses that exact same split second to invade my body, and mind you forget the immediate ear pain, dizziness, the water logged ear blockage I develop as a result of the cleaning, its all apparently unrelated coincidence and all the complications I have progressively and consecutively been experiencing these last few days since the procedure apparently have no relation to my current ill state. Furthermore the virus just happen to be effecting the very same ear on the right side of my head where I had the cleaning without causing any other ill effects on the rest of my body. Meanwhile I am stuck with constant nausea, my heads spinning, I cant drive or walk in a straight line and I keep hearing these stupid crackling noises now accompanied with ear pressure which seem to be getting worse.

When I first damaged my Autonomic Nervous System following a recreational drug overdose, I hadn't fully developed POTS yet but I had all these other weird symtoms consisting of severe chemical sensitivity and ongoing fevers so I substituted the recreational drugs like methamphetamine and ectacy which I used to take in rave clubs and began to drink up to 5 cans of Red Bull per night instead and continuing to go to clubs at which point I suddenly developed full blown POTS and worsened my other Dysautonomia symtoms so ever since then I have been put off by the idea of caffeine as it was contained in the Red Bulls cans I drank following up to my full onset of POTS.

I don't have any fungus on my feet but I have had this problem with my tongue too but mine is more like leisons and white irregular patterned rings on my tongue that burn when I eat something sour or bitter. Some of it is associated with thrush, yeast or fungus, another doctor said it was geogrophic tongue, but a low sugar diet does not seem to help it. Mine gets worse when my immune system goes down, so basically when i get a cold, flue or any other virus my tongue flares up and the it gets covered in white rings. Another thing that makes mine worse is anti-acids. It seems supressing my stomachs acid contents also agrivates it, I dont know why. I can't realy find anything to fix it but sometimes randomly it dissapears for several months on its own and then just comes back without any reason I can detect.

The virus that started my POTS was known as the "recreational drug overdose" On a serious note though...so what happens when someone who developed POTS due to a virus catches the same virus again? Do they just redevelop a worser version of the POTS or will they not be phased by it as they already have POTS ?

Hi Sue1234, I've had a cathecolomine test but not specificaly pheo, but having a quick check online I don't seem to have the excessive sweating found in pheo as I can't sweat at all. Do you by any chance have Pheochromocytoma ? and if so what symptoms does it cause you?

I know how you feel, my party days are over too. Before developing Pots I used to be a party boy going to raves every weekend, indulging in illicit substances and having the ocassional drink and smoke but soon after developing POTS I found my body would no longer tolerate any of it, not even in a miniscule amount. My life changed drastically and I had to leave all the fun things I loved behind me. Nowdays I can't even tolearte my pain medications due to my sensitive ANS and just as you even a a few sips from an alcoholic drink gets me feeling flushed, feverish, tachycardic and unwell. I just be honest and tell people I can't drink due to medical reasons. No shame in that.

Of course you have a right to speak about your interests and whatever else your passionate about but still you need to avoid talking to the wrong people about it, you can discuss your mysticism with freinds with your spiritual leaders and with likeminded people but I agree with "nowwhat" that "we are vulnerable enough with dysautonomia without sharing of mysticism". These so called doctors show enough scepticism and misunderstanding to our medically diagnosed illness of Dysautonomia let alone acepting the idea of mysticims and spirituality. I am also a very spiritual and religious person but those are two topics I never talk about or debate in public unless they display some understanding of it, otherwise speaking to people who have never had a religious or spiritual experience will only think the worst of you and thats fine too if their opinion didn't matter but the people you spoke to had authority and power to do things that caused you grief. They didn't have a right to do what they did just because they didn't agree with your views and I hope you can are able to seek justice and have them punished but in the future for your own safety and peace of mind you should practice a little more caution knowing there are people like that out there.

What exactly happened tearose ? perhaps I missed previous discussions but why were you admitted into to hopsital and if I understood you correctly did they keep you there against your wishes and forced you to take drugs you didn't want? If that is the case thats really messed up. Sorry to hear what happened to you. How did they justify their actions? Also what do you mean by "real and documented Spiritual experiences" do you mean like religious and mystical experiences? if so you need to be careful you don't go discussing such things with doctors and hospitals because they deal with science and medicine, spiritual experiences are something very personal its not something you want to share with the wrong people and non believers and people who deal with scientific facts, thats like preaching about God to and atheist, it can end up causing you trouble and people in authority can impose their own views against your views.

Thanks for all the well wishes. Zaks27, my initial diagnosis was POTS as well as having an uncommon version of Autonomic Dysfunction. My primary care is Professor Murray Esler who is an Autonomic specialist here in Australia. I always bring record from my specialists and Neurologist but the idiots (excuse my language) always refuse to read any of it. Thats why Im so upset, they are all too happy to pass judgement without reading any of the documents. Yes I have also seen a cardiologist who found the same results as the specialists due to symptoms caused by POTS such as excercise intolerance, cardiovascular effects due to postural changes and additionally mitral valve prolapse, but I have not been tested by a cardiolisgist during one of my adverse reactions to the medication. Only my Neurologist did a table tilt study whilst he administered opiate to document the effects of the adverse reaction and even he was too afraid to tilt me after he saw how much the adverse reaction distrupted my vitals so I dont think it would be safe for a cardiologist to do a tress test whilst im having an adverse reaction because even standing up is much worse that usual during one of these episodes. The hopital staff wouldnt even read the results from found by my neurologist where I he explained the distruption in my vitals caused from the opiates administered during the table tilt test. I am sure they are all going to get whats coming to them once the complaint I lodged goes into action.

Mack's Mom, I just had a look online at MCAD's and I ssee some similarities except that I went through the same problems whne I was trialling tramadol and I was ending up in the ER quiete often. I also tried anti-histamines to see if the reaction I was having was aresult of histamine release and could be blocked but unlike an allergy or anaphylactic reaction the drugs adverse reaction did not respond to antihistamines. I will still mention MCAD to my specialists, it might be worth getting it checked out. Thanks. Tachy Phlegming, yea I had my neurologist do a test on me during the adverse reactions and has documeneted it but it does little good when medical staff cant be bothered reading anything I present to them.

Thanks for the advice guys, I understand my behaviour may seem odd that I am puting myself at risk to get pain relief, I will have to rethink my methods and prioratise. I guess this topic was more of a vent as I really feel like the circumstances I find myself in are always uncommon and against my favor, I just feel like life is mocking me by causing me to end up in the most frustrating and unlucky situations, I have faith in God but I always end up feeling like I just got punked, its hard to explain but I guess you have to be me to understand.

Okay the reason why I am taking this medication and putting myself at risk is because the pain gets really severe to the point where I am willing to risk my wellbeing to stop it I guess. I know it may sound bizarre but thats the case. I tried to find alternative therapy before I got to this point, I tried every other option, from pain specialist clinic, acupuncture, physiotherapy, hydrotherapy, gabapentin, pregabalin and every other pain relieving drug on the market but my body is just too sensitive to these substances and they all caused a reaction. There are some days where I can tolerate the medication with minimimal adverse effects but its so random I never know when I'm going to be effected badly. I don't expect much from the hospital, only basic level of care for them to check my vital to make sure I'm not in immedeate danger and to allow me to wait until it passes.

I've been made to look like a complete anxious hypochondriac trouble making fool in the presence of the hopital staff. I have this really weird messed up problem where I can't tolerate any substance that acts on my Autonomic Nervous System and I am extremly hypersensitive to any stimulants or depressant and I end up in the ER quite often whenever I take my Opiate based pain medication for my chronic pain. Now I am having problems with the hopital staff because they have come to recognise me and they feel that my reasons for attending the ER is unnecessary and too frequent and now they are treating me with scepticism. I have been labeled and documented as having anxiety attacks by triage nurses during my severe adverse reactions and one nurse even refused to treat me when I felt like I was going to die during the distruption in my vitals. She told this wasnt some one stop shop and that I shouldnt keep coming to hospital so often and told me she didnt believe i was having an adverse reaction and that i was just being anxious. I don't even suffer from anxiety but I feel it is very dangerous to dismiss a patient having life threatening adverse reactions as having anxiety. I had to report two of the nurses to the medical boards, my whole situation has become one big drama and everyone there looks down on me when I walk in for help. Ive had problems with one ER doctor who I also had to report because he called me a junkie and told me to stop abusing my medication when in fact I can't I have reactions to even the minimal dose. To make matters worse everything seems to be working against me, like some sort of force or God if you will is mocking me and making me look bad by causing events to appear against my favour. Whenever I have a severe reaction at home by the time I get to hospital and they check my vitals everything is back to normal and then they dismiss me as having anxiety. When I do get to hospital quick enough and they see elevated heart rates and blood pressures then again they lable me as having anxiety, so I'm ****** if I do and I'm ****** if I don't. Everything about this mess is a catch 22 for me, no matter what I do it ends in trouble... Furthermore the adverse reactions vary greatly, one of three things happen... 1- bradycardia (heart rate below 45) with hypotension (bp below 100/60) 2- bradycardia (heart rate below 45)with hypertension (bp above 190/90) 3- rapid heart rates with hypertension (bp above 190/90) Usually it always starts off with feeling sleepy and then I find my breathing is supressed and whenever I close my eyes I wake up gasping for air and when I check my heart rate I find it very low and my blood pressure very high and my head feels like its about to burst from intense pressure in my skull and my whole body goes into a violent twicthing and painful spasm, and I have fever and flushed face with icy cold extremeties. But for some crazy reason the hospital staff never get to see this bceause when I do get there fast enough for them to see it I'm either denied treatment or told to take a seat and wait without them even checking my vitals or when they do check my vitals by that time everything has settled and my vitals appear normal even though I'm still feeling unwell. thye dont understand that the adverse reactions vary in nature and in intensity and theat the reactions are quite short lived. The nurse I reported and have ongoing problems with who labelled me as having anxiety has never seen my during one of those slowed heart rate and respiratory depression episodes listed in numbers 1 & 2 above. Ive tried telling her I am not anxious and if I was my heart rate would be falling below 45 bpm as anxiety does not cause bradycardia but she says my vitals appear fine because they are fine whenever she checks me at the time. Someone up there really hates me, my life has turned into one of those movies where everyone thinks a person is lying or guilty and the only person who knows the truth is the person themselves and they are on a quest to prove it to others. Its like taking a car to a mechanic after experiencing problems but when you try and show the mechanic the problem does not show itself but soon as you drive out of there the problem reappears again. My whole life feels like that. To make things worse I feel so uncomfortable going to hospital I try to put up with the adverse reactions at home which means they dont see the worst part and when it gets to a point where I can't tolerate it anymore I rush dowwn there but by then everything is settled back to normal and it makes me look bad so now I try to get there as soon as I feel unwell but because God hates me it happens that my adverse reaction at the time is one of the more milder ones and when they check my vitals they dont see any problems. ****** if I do, ****** If I dont. I know if I dont go to hospital then out of chance its going to be one of the more dangerous severe reactions and If i do choose to go to hospital its going to be a milder reaction, thats how it always happens. All they see is a person who keeps coming into hospital claiming to feel unwell and expressing that their life may be in danger but none of them are seeing it. But I have witnessed time after time all the dangerously fluctuated vitals measured at home and felt all those intense sensations caused by distruptions in my vitals and the adverse reactions, often my mind is calm and I dont even feel anxious. I'm just so frustrated that everything is working against me. I'm so angry that I am just so tempted to take double my dose and go in there and show them how bad things can really get for someone with my sensitivity so they take me seriously the next time I need help, but of course I wont do that.

Anxiety causes sweating so if there was some relationship between pots and anxiety why is is that some of us have lost the ability to sweat when in fact anxiety should induce pesrpiration? I know your not saying it aply's to everyone but even for those of you who do have pots associated with anxiety, how does anxiety lower vlood volume and how does anxiety cause blood pooling and cause poor vasoconstriction of the veins in the legs from postural changes? Lately when ever i get an adverse reaction to my pain meds and end up in the hospital they try to pin it on anxiety but when I challange them and ask why is it that the adverse reaction is causing me bradycardia and lowering my heart rate to 42 bpms when in fact if it was anxiety it should increase, they cant answer my question yet they still insist on anxiety, thats how foolish doctors can be, they deny the evidence with their selective hearing just sothey can act like they are right.

I am exactly the same, but I have to ask... do we have to much adrenaline or are we just hypersensitive to the normal release of adrenalin in our bodies ?