Can Extreme Symptoms Be Fatal ?

[Troy]

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.

[juliegee]

(((((Endure)))))

More later. I have few ideas.

Julie

[MomtoGiuliana]

Your situation sounds somewhat unique, as you say. Your forum name says it all. I am so sorry there aren't answers for you. I wish I had some. Have you seen an autonomic dysfunction specialist at one of the research/university hospitals?

It is normal to feel desperate when faced with scary, disabling unexplained symptoms. Do you have someone you can talk to about how you feel emotionally?

Let us know how you are doing.

[Troy]

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.

[juliegee]

Endure-

You are dealing with way too much. I'm really sorry. You do NOT deserve this illness. Noone does. You didn't OD and I suspect you are here for an important purpose- which may not be apparent to you yet.

We have other members, whose dysautonomia showed up, after using recreational drugs. Maybe post about that and see if you can find any similarities.

I wonder if you have other things going on as well as the autonomic irregularities.

"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."

I have a disorder called Mast Cell Activation Disorder/Syndrome (MCAD or MCAS.) All of the things you have listed above are known triggers to folks with this disorder. Tylenol and Fentanyl are the best pain med to use if your mast cells are over-reacting. Wild autonomic flucuations and that severe shaking that occurs when BP drops are a part of anaphylaxis. (BP surges and tachyacrdia can also be a part of this.)

Check out The Mastocytosis Society Website: www.tmsforacure.org to read and learn more about this.

We also have another member who has a disorder that prevents her from metabolizing meds properly. I think she is missing an enzyme. her symptoms looked a lot like MCAD and sound like yours. Maybe post & ask about that too.

I suspect that you can get better and that your docs haven't quite gotten to the bottom of things yet. No one cares more about getting you better than YOU. Do a little research in these areas & see if any of it fits.

I know the world is better because you are here.

Julie

[Troy]

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

[anna]

Ok well let's start by saying DO NOT GIVE UP please! My kids have a tentative POTS diagnosis but their Dr.s have not been able to put together all their weired and not so wonderful symptoms their Paediatrician has removed them from her case load explaining to them that see will be more than happy to see them if they have any thing that she can help them with!!!!! We rely on folk like you to battle on in hope that one day we will find reasons for my kids being like they are. Sorry to burden you like that, quite a tall order me thinks!!!! But I think we each slowly but surely chip away at this whole ANS stuff finding new leads here and there and hopefully one day some one will get it!!!

I realise you do have quite a lot going on in your body, the high random temps could be auto immune type reactions, they could be endocrine in nature I have met other people on other boards with over heating issues, some have auto immune conditions so that might be a lead! My kids can have some very scary low temps, they tend to be worse when it is hot out, seems like their hypothalamus is out of sink with life. My kids have EDS and we are thinking maybe they have some sort of microvascular damage that is causing their odd responses to life.

Re the sensitivity to these meds, I wander if it is linked to your random high temp's some form of over response going on! Have you ever had a endo look at your symptoms? My mum has very odd responses to most of the meds you mentioned, she was able to drink wine etc. up to her early thirties then not even a drop or she loses strength in all here muscles! Her GP still disbelieves my mum when she says even baby asprin makes her have odd symptoms mainly big drop in BP, she has high BP but has reacted badly to all the meds the GP tried with exception of a water med that she takes daily all the other meds made her BP rise or drop too way much!!! She can not go near any one with perfume on without flushing and having loads of weired symptoms, it is soo odd. On the other side of this was my dad whom had an very very odd response to all the stuff you mentioned, he had a massive tolerance to all these things, he could drink loads of alcohol and would still be standing when all around him were out cold, he would drink loads of small black Italian coffees no giters, pain meds did not work for him neither did sedatives, this was sadly proved when he had cancer and palliative care Dr. told us he had never in all his 40 year career ever seen any one need so much sedation as my dad and he admitted that it seemed pain meds did not work on him either, it transpires that this might have been because he had EDS and was in pain from a young age.

Now down to the whole arousal thing I cannot help but think this is an response to adrenalin. I have essential Myoclonus (a form of muscle spasms) which my Dr.'s think is very much adrenaline fed, when I have sex I trigger a bad myoclonic episodes, I also flush for hours and my BP and HR are all over the place and most always I become presyncope, I thought that this was normal for us but looking around I do not think it is !!! The whole chemistry around inappropriate arousal I should think is very complex but I would hazard a guess that you are over responding to hormonal fluctuations, this might be an endocrine issue me thinks. Sorry I have waffled a bit but I hope you understand what I am on about! Please take care.

[Troy]

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