Troy

Hi Flop, your very correct in saying I had high hopes for fentanyl, as you remebered I made several posts asking about it, and then managed to get it only to find that I had a allergic reaction to it as well. I too initially thought maybe I was allergic to the adhesive or the additives in the patch but I stuck it on my upper left arm and there was no redness whatsoever there but I broke out in a rash and hives all over my neck and lower face in a different area to where the patch was. So back to square one for me. Nunibenuni thanks for the advice, I have been using Betablockers 3 times a day for the past 8 years, I will make sure I mention that.

Thanks to everyone for sharing their story , its made me realise the that the dysautonomia has a big influence on allergic reactions. Mighty Mouse Im suprised you could actually have bad reactions to allergy shots. I hadnt previously heard of allergy shots, are they made up specifically to combat everyones individual type of allergy ? Can they make up specific shots for drug allergies too? I have made an apointment with an allergist specialist after Dawson and Alicia made the suggestions but its abit of a wait so I wont get any answers for a while. So anything I can learn from you guys untill then would help. Thanks

Thanks everyone for the support and advice, I cant believe I actually hadnt heard of allergists before. I will definetly be seeng one soon. What upsets me is that Im in a lot of pain and I cant even take anything for it due adverse reactions. I wonder if allergists can give me stuf fthat will allow me to be able to tolerate my medications without having bad reactions to them?

Ever since I developed POTS 8 years ago after an overdose to recreational Drugs, I immedeately developed a massive chemical sensitivity and ive been stuck with it ever since. It so ironic that I was once very resistent and had no allergies whatsoever to any sort of chemicals but following the overdose Ive become sensitive and now I cant even tolerate the medications that I need to due to allergic reactions after devloping POTS. Is it the actual POTS that is causing me all these adverse reactions or is specifically the fact that I developed pots after experiencing an overdose to chemicals? Ive heard some sensitivity to chemicals in patients with autonomic problems but theres always other alternatives for them but for me there seems to be none, my body is so messed up I feel like screaming im so angry and frustrated for being so weak and feeling so damaged like something is very wrong with me. I havent been able to tolerate any of the POTS medications like midodrine and fluorinef. I cant take any sort of benzodiazepines or antidepressants I cant have cofee or alcohol or anything that stimulates my autonomic nervous system and efects or alters my brain chemistry in any way. I recently developd a painful joint condition and found that I had severe reactions to all the painkillers my Dr's gave me. Ive had severe adverse reactions to morphine, oxycodone, tramadol, codene so recently I started on fentanyl patches but after the second day I develop allergic reactions to that too. It seems even substance that I can tolerate the first time the second time my body rejects it. Ive had so many near death experinces from adverse reactions, so many hospital visits with difficulty breathing and swallowing, twitching and muscles spasms, hives and rashes, and overheating due to adverse reactions from medications. Im mentally exhauseted , I have no confidence left in my own body, I dont trust it and I dread the thought of having another adverse reaction because each time I question my wellbeing. The Dr at the emergency ward told after my lates fentanyl reaction that I was able to tolerate the medication the first time without incidence because my body developed antibodies to it afterwards and now its sees it as a threat and rejects it. Wy is my body fighting to develop antibodies against it and then rejecting these medications. Im out of alternatives, and I just know im going to continue having adverse reactions to whatever I try cause ive seen how messed up I am, theres is something very wrong with my body and I want to know if its the POTS or soemthing else that makes me so sensitive. I know some of you are going to say you cant take this and you cant take that but you always end up finding alternatives but for me it seems like anything that even remotely stimulates my nervous system or changes its fine balanced state causes me issues. I even have adverse reactions to the changes in my own brain chemistrty and the release of hormones through out the day. I just need to know who can I see and why Im this way.

Thank you everyone for the reassurance, I feel a lot more at ease knowing those of you who've had it havent developed further complications from it. I cant belive how long it actually takes to recover from this nasty illness, feels like forever and im only 1 month into it without any signs of improvement. Cheers for all the well wishes

Ive had POTS for 8 years now but 1 month ago I got Glandular Fever also called Mono and Ive never felt this sick before. Ive continued to get worse due to the Mono and feel very tired and sick all the time with severe sore throat, fevers, headaches, diziness, lethargy and coughing. Ive heard mono can develop into Chronic Fatigue Syndrome. Im now scared this may be the case with me. Ive also heard in some people Mono was responsible for causing their POTS in the first place. So my question is..... For someone whos already had POTS for 8 years, will developing a new illness like Mono cause further complications to my POTS seeng as its already a factor that is known to cause POTS and am I now likely to develop "Chronic Fatigue Syndrome" because of this?

Hello Flop, that is great advice, I also have a ceiling fan above my bed so I will put it to good use, I refreained from using the patches until I got some response on here as Ive heard people have overdosed due to using patches with places like the sauna, electric blankets, even hot shower then going to bed with the patch so I want to be cautious. Otherwise when you are overheated have you felt the patch has effected you differently and what do you do about showers? Mine is the lowest dose at 12mcg patch so Im hoping a bit of extra heat wont make too much of a drastic change to the way I feel on them. Thanks for the valuable information

Today I got prescribed fentanyl patches after the pain managment clinic determined during a allergy test I was able to tolerate fentanyl without any problems. As some of you might remeber me previously where I had discussed my severe chemical sensitivity and adverse reactions to all the other painkillers I had tried. So I purchased the patches about an hour ago but then realised something very important, one of my worst symptoms is my constant feverish and severe overheating, something the Dr's at the pain management clinic dont understand veryy well . The information for the patches say not to wear them when you have a fever as the heat increases the release and absorbtion rate making it dangerous. One patch has to be worn for 3 days so im concerned how will I wear it in bed when I tend to wake up overcooked every morning, and what about the shower and through out the day where you overheat? Whats the coolest place to stick a patch and how do you get around the problems mentioned? thanks

Its somewhat comforting to see im not the only one. My TMJ for unknown reasons gets aggrivated by my POTS symptoms, I wake up in the middle of the night to find my jaw all tensed up and instinctively feel the need to release the tension by cracking it and once i do i can go back to sleep again but it keeps re-occuring many time through out the night. Also happens during the day when my symptoms flare up the jaw muscles feel frozen and make a real sharp loud cracking sound when I open my mouth. I laso get really bad neck pains that run from the back of my neck to my jaw and radiate through my whole head with severe headaches .

I guess everyones different but for me Beta Blockers are absoloute magic, I could not imagine having a life without them. I have POTS and soon as I step down off the bed in the monings my heart flips out until I take a BetaBlocker im back to normal again, I can go outside and do activities that I normally would not be able to without medication. But you have to realise also there are different types of Beta Blockers that act differently and last for differnt lengths of time, Ive tried severeal but just like you mentioned some of them made me feel worse, im extremely sensitive to medications but I found this one Beta Blocker that dosent cause me any side effcts and its very mild but does the job perfectly, its called Betaloc, it dosent last as long as some of the others but its so gentle without side effects im quite happy to take it twice a day instead of ones as you would with other Beta Blockers. Ive been using it twice a day everyday for the past 8 years without noticing any long term side effects. It last about 5 hours before you need to take another. I highly Recomend you speak to your Dr about that particular one.

Thanks Morgan you have hoenstly put my mind at ease and made me feel so much better about going through with this, if you hadnt shared your experience on how well youve tolerated fentanyl i would have worried myself silly going into the hospital.

Hi Alicia, thats a great suggestion, I will aslo ask them to test me for naloxene first so they dont rely on that too much. Yes Fentanyl is an opiod and im not sure if its specified anywhere that its not suitable for patients with POTS but there a few others on this forum who have dysautonomia and are still able to use it. My pain is very severe and getting worse so I think I am out of options as Ive tried every other alternative suggested to me.

Recently after seeng pain managment specialists they decided that for my pain they will try an injection of a painkiller called Fentanyl on me under supervision in hospital. They have decided to try fentanyl after I experinced adverse reactions to all the other pain killers, I was also very keen on trying the particular painkiller after it was used on me during surgery without incidence. I have POTS along with a chemical sensitivity, although i wanted to try fentanyl to see if i could use it without adverse reactions but now that the hospital has asked me to come in this Friday I dont feel so sure. I feel scared for my wellbeing, what if I have a severe fatal allergic reaction, am i making a mistake? but I need to do this because I am in a lot of pain. They have told me that they will use a dose suited for my age, weight, height but what about the fact that i have a chemical sennsitivity and im not as healthy as the avarage person my age due to POTS? They've said that if I have an adverse reaction they can reverse it using other chemicals like "naloxene" but Im concerned if it came down to that I could even have an adverse reaction to the 'naloxene" itself. I dont trust my body as it has let me down so many times in the past. I feel confused and I dont know what i want right now, if I dont take this option I dont know what else I can do as I have tried so many other avenues already and if I do take the risk and nothing bad happens then this fentanyl could imrove my life and give me an option i could use in the case of an accident or emergency as there is none at the moment due to adverse reactions to all the other opiods. On the other hand what if it all goes wrong and I dont make it beyond this Friday.

Lucky you! Im quite envious of people who can sweat now as I really miss it. I used to be able sweat heapz but once I developed POTS I just couldnt anymore. There was only a few times over the past 8 years where I was actually did sweat a little bit and that made me feel good, it felt like my body was working again, it feels healthy but when u cant sweat then you really get a sense something is wrong and your body isn't functioning properly.

Ive also had severe neck problems and pain since I developed POTS but I was never sure why and how the neck was involved with the symptoms or wether others had them too until I came across your post. I can relate to what people are saying in here, my neck pain is also in the area where my skull connects to the spine around the brain stem area. Thankfully enough the neck pain isn't there everyday but when it does happens it becomes one of my worst symptoms. I ve had it on and off for the past 8 years and it seems to flare up when my POTS symptoms occur , my neck ends up becoming very stiff, sore and achy, and I find myself bending it in every direction and trying to crack it to relieve the pain but that ends up making it worse, almost everytime I get the neck pain it ends up giving me migranes too. The neck pain feels like it has some neurological basis and when I apply pressure on the neck area with my thumb or fingers it gives me a weird sensation sort of like when you the gums in your mouth swell during a cold and u push on the swelling with your tongue and you can feel that sensation in your brain or when you run your fingernails ona blackboard its that sort of nerve and sensitive brain feeling, hard to explain..... I dont think theres much that can be done for it , put personally I find some relief from it lying down in a dark room for 30 mins to an hour. Good luck and best wishes!

Thank you everyone, I havent tried the above options youve mention stellakitty, mainly cause Ive been so cautious in trying new medications and I was only stuck on the idea of fentanyl because the aneshteitist said it was used in my surgery without complications but I understand that alone isnt enough to validate its use in me and I do belive you that it is more addictive than heroin. I will consider the other medications you have suggested as long as it gives me the same standard of pain relief I experinced from painkillers which allowed me to get on with my day but hopefully without the adverse reactions. Flop I also second Deucykub's comment that you are very insightful and most likely right in what your saying so I will try and be patient for other alternatives but in regards to tackling chronic pain I am willing to endure most of it by keeping as busy as I can at home and with activities and if I can find an alternative medication that relives most of the pain then thats a bonus for me but for times in my life where I need to go out to family events and other functions which require me to walk around then I would be quite content with a faster acting and shorter lasting relief like fentanyl but I guess I have to stop thinking that way.

Wow, Im envious and admire everyones motivation to push on with life and actually work after developing such illnesses. Personally Ive been unable to do this and put my whole life on hold due to my condition. I have heard about working from home schemes but have been sceptical and reluctant to take the step, and the search Ive done online has not convinced me of how legit it is, so I would appreciate if anyone could give me some information about working from as I do not know the first thing. By the way I live in Australia so does it make a difference wether the organisation you work for at home is international? Kristen I will take you up on that offer, Thanks

Thanks for sharing your experience im sorry to hear it was so unfortunate but Im glad to hear that you have overcome your addiction, well done! I dont mean any disrespect but it is more likely for someone with a no abuse history to get addicted on a substance due to inexperience rather than someone like me who has suffered the ultimate consequence besides death as a result of using drugs. I have had first hand experience in the real damage drugs are capable of, it has ruined my life and im reminded of it everyday with the constant overheating and the vast amount of symptoms. I am stuck with a life long illness because of drugs, I have lost my abilty to work, to study, my social life, my friends, my independence, my partner, my goals and most importantly my health, if there is one person on this planet who realises the real danger about abusing and using drugs and addiction..its me! I would have been luckier to die instead of suffer a life long fate because of them. I appreciate your good intentions but belive me there is no chance I could ever be addicted to any substance after what Ive been through. Even when I was trying out the painkillers the Dr's gave me which I had adverse reactions to, I was only taking 1 recomended dose only once every two weeks just so I avoided addiction, thats how cautious I am nowdays, I am also willing to put up with the daily pain just for the sake that I do not get addicted to painkillers but if I did take it it would strictly be on minimum usage and only when the pain gets unbearable and I trust and have faith in my own judgement that I can do this without gaining any tolerance.

Hi Ajw, Yes I have tried anti-inflammatory medication but every single one has irritated my stomach, even on my good days I already experience issues with my digestion and acid reflux and stomach pain but also regardless none of the anti-inflammatory meds helped with the pain. The pain is constant and severe and its in bothe ankles, both knees, hips, shoulders and neck. Its a solid ball of pain that radiates from the core of my joints outwards, it interrupts my sleep, I find it difficult walking, crouching and moving around and it has limited my activities greatly as if the POTS itself wasnt bad enough. Its aggrivated by physical activity no matter how light weight. There was no evidence of arthritis even though Ive had many tests. It is not post surgery pain as the pain started suddenly in all my joints and is of the same nature and sensation. I have torn ligaments and cartlige in in all my joints from the waist down but no explanation as to why im experiencing these, the joint problems are still undiagnosed and of an unknown nature even though I have seen rheumatologists, physiotherapists, orthopedic surgeons and neurologists. Ive tried many avenues like hydrotherapy, physio, heat wave ultrasounds, strengthening excersises, massage therapy but none helped , Ive found that painkillers helped the most despite the adverse reaction I felt no pain when I have taken them but instead I was more pre-occupied with dealing with effects of the adverse reaction =)

Hi Flop, You are right, I can see that from the Dr's perspective it is a safety issue but from my perspective I feel like Im being denied a medication that has the potential to make life easier for me and if only I could tolerate the painkillers that were already trialed on me i could be living a much more comfortable life right now but im missing out on this all because it comes down to a matter of trust, understanding and communication between me and the Dr's. I dont know if I tolerated fentanyl because I was under the anesthesia at the time but how am I supposed to know if fentanyl is an option for me unless im allowed to try it? if i have an adverse reaction to fentanyl then at least I can add that to the list of meds which I'm unable to take, and I belive it should be my right to know what i can and cant take especialy in the case of an emergency. What if I had a car accident or a serious injury...shouldnt I be allowed to explore avenues on what Im able to take in such a case ? Even worse what if they gave me one of the painkillers thats already caused me adverse reactions while I was unconcious , it could end up being fatal. I feel like im being denied the right to figure out this important information about myself. The adverse reactions Ive had towards the painkillers so far include difficulty and slowed breathing, feeling like I cant get enough oxygen, difficulty swallowing, feeling itchy all over, my throat feels tight and constricted, I have muscle spasms and involuntary twitching in my jaw, thighs and chest, feelings of confusion and just a miserable sick feeling and severe overheating, so bad that I end up going under a cold shower and need to stay in there for a long time that even when i think its safe to come out the heat sweeps over me again and i have to jump back in there and basically questioning if I will live through it.

Thanks everyone! I feel a bit more at peace with my overheating symptom knowing that its commonly shared trait with the condition we have.

Hi Sunfish, I am very glad you have responded to me about fentanyl, because I do have some questions and I do not know anyone else whos tried it. First of all I should mention that I am very cautious nowdays trialing new medications and I dread the effects of having another adverse reaction, I always take a fraction of the dose of any new medication my Dr prescribes just to be on the safe side, so with fentanyl if i was prescribed it I would not put myself in any risk as I would try it only in very small doses. I am aware fentanyl comes in patches and it takes up to 12 hours for a patch to be absorbed so this is why I would never use patches because if I was to have an adverse reaction it would be difficult for my body to overcome the efects of something that has been building up in my system for that length of time. This is why the only fentanyl I would be willing to take is the 'Fentanyl Oral Lozenges". The Fentanyl oral Lozenges are said to be absorbed very quickly last only 2 hours which is perfect for me as I would only use it in extreme painful circumstances as Im willing to tolerate the avarage level of chronic daily pain without medications. im also very cautious in the sense that I do not want to be addicted to any meds so i would try and minimise my use and take breaks in between using an addictive medication. The question I wanted to ask you was... I have also read many times from various sources and as you have mentioned that fentanyl is only suitable for patients with an opiod tolerance, but I have not been able to understand why this is, so if I was to break a fentanyl lozenge into 10 parts and only consume 1/10 because I do not have an opiod tolerance and due to my cautious nature, then would that still be a problem for me to use in very small doses despite the lack of tolerance to opiods?

Thank you to everyone for sharing their experiences, it has helped me decide for now I would rather not take this particular antidepressant, its correct that Amitrypline is a tricylic not an SSRI and as Flop mentioned it has the potential to cause tachycardia and arrhythmias in some people (which I didnt know untill now). Personally for me iregular heart beats and tachycardia was one of the primary reasons that made me avoid driving a car by myself and going places alone, I have now improved slightly that I can do those tasks again, so if i was to start experiencing heart symptoms again as a result of the tricylic antidepressant it would ruin every progress Ive made. I think for now I will leave this medication as my last resort. Although I have had adverse reactions to all the different types of painkillers ive used so far such as oxycodone, codene, morphine, darvocet and tramadol, apparently during my knee surgery the anestheitist was able to use a painkiller called fentanly with me without any incedence, so ive been trying to convince doctors to try fentanyl on me but they keep refusing stating to me that its more suitable for severe pain in cancer patients. If I was allowed to use this I would only take a smaller amount enough to help with the pain. but it frustrates me that im being denied medication that has the potential to help without the adverse reactions.

I have been refusing to take the antidepressant Amitriptyline which was prescribed to me by a doctor at the pain managment clinic for my detereorating joint problems as he belived that particular antidepressant also had pain relieveing properties. I initially developed POTS due to a chemical exposure to recreational drugs in the first place and ironically I now have this severe chemical sensitivity and have not been able to tolerate any of the POTS medications and Ive been unable to take any painkiller due to the adverse reactions. I hear about others with POTS drinking cofee or alcohol and it amazes me that they are capable of that as I cant tolerate any sort of stimulant, smells, fumes, smoke, food additives, and many medications. The last time I took an antidepressant since I developed POTS it totally ruined my sleep and further distrupted my symptoms causing me to overheat more so than usual. I even have adverse reactions to the changes in my bodies own brain chemicals and hormones that are released through out the day which are also responsible in inducing wake and sleep modes, digestion and temperature regulation. So to someone who is alreday constantly severely overheating regardless of how cold it is outside and has issues with an unbalanced autonomic nervous system it makes no sense for me to use antidepressant that have the potential to further mess around with my seretonin, sleep, temperature, apetite and etc. when those factors are already distrupted and unbalanced enogh as they are. I had an argument with the doctor who prescribed me the antidepressants trying to explain to him that ive already had bad responses to them in the past and why I couldnt take it but he refused to accept my reason and wanted me to try it. Can anyone else tell me am I wrong to think that antidepressants can further distrupt and worsen my symptoms when I already have such a severe chemical sensitivity, overheating and experience adverse symptoms due to the chemicals changes in my brain?

Thanks very much for that valuable information Pat. I apreciate you taking the time to find it. I will show some of that information to my neurologists to see if he thinks any of it could be factors in my overheating. I also would be quite interested in contacting the people who wrote those articles for further information.