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aPerfectCircle

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  1. hi everyone. i finally got a dx. i have "central pain syndrome" which is basically nerve damage around the thalamic area of the brain usually cause by stroke or MS but for me it was electric shock therapy from years ago so yeah. its another one of those medical problems doctors turn their heads away from, i've been to four neurologists, each of them took one look at my history and referred me to a psych without bothering. its also another untreatable problems, the only sort of pain that doesnt respond to opiates. they told me dysautonomia symptoms are part of it too. so yeah, yay for me, i'll be burning in **** for the rest of my life. xxoo APC
  2. is anyone taking this? its for epilepsy but my doctor says it might help (he is guessing and admits it.. ) APC
  3. i used to take anything anyone would give me...now im terrified of drugs and medication of any sort in case they **** with my autonomic system. i guess i have my answer for opiates. i can easily stop using them. what about weed? for me personally, i find if my simptoms of heat/burning are mild or moderate, it *really* helps me feel the actual temperature (ie cold at the moment) for a few hours...unfortunatly it makes my heart go crazy. i only recently started getting horrible palpatations again (havent had those for almost a ear) and problems with digestion...although those last two things dont bother me as much as the heat. anyway back to the point. does weed hurt or even affect your autonomic system? i have looked it up on the internet but all i get is "weed is great and harmless" propaganda which i know is not true benzodiazapines? i rarely take these even though i have a lot because i am scared of addiction, i find these really help me for a short time, but do they have any negative affects on the autonomic system? thanks. sorry for the rant. APC
  4. I dont have POTS, I have "dysautonomia" whatever that means I also suffer from migraines. I also have aspergers syndrome which is a sort of autism. they thought my dysautonomia was related to that as one of the major symptoms is sensory confusion and hightened/lowered senses. for instance i can barely smell anything, some foods i cant taste, and some foods overwhelm me. the worst for me is the sense of touch. i cant stand the feeling of things against my skin, even before it was burning....so who knows, maybe i am just crazy
  5. hi thanks. ive seen a neurologist who said he had no idea what the problem was and it was definatly not neurological, i also so a doctor specialising in dysautonomia problems who also said he had never heard of it. i am in australia, there isnt a lot of options. i have tried flurinef, beta blockers, everything, they all helped for 2 weeks then reversed on me. every keeps saying it will pass, but it is just progressing and i am so terrified
  6. i have never posted before. my doctor thinks i might have a problem with dysautonomia, although he has no idea. i have been to one hundred specialists and they have all laughed at me, and told me not to "worry about it" my problem is this. its very hard to explain. it feels like my skin is burning, like someone has set me on fire and im burning to death. i am always so hot i cannot breath and it hurts to have anything on my skin. i cant sleep or lie down because is burns my back, i cant do anything at all. even just sitting here, with no clothes on, in the middle of winter, i am so hot all i can do is scream and scream and scream. i have to work too and its unbearable, all i do is cry and scream it hurts so much and no one can do anything. i dont actually have a temperaure and every doc i have ever been to says they have never heard of it. i dont know what to do. i have a boyf and a best friend i love dearly but i just dont want to live anymore. the worst of it is just about 2 years ago i finally recovered of years of **** from depression and suicide and drug addiction, i finally got my life somewhat together, fell in love, was happy... now i have no relief. NOTHING gives me two seconds of relief. not even a freezing icy shower, or standing naked in the 0 degrees in a hail storm. not weed...not even a high dose of heroin helps. which freaks me out no one understands and i dont know what to do. i have tried about one million meds. i even went of my psyiciatric meds in case that was the cause. i changed my diet, did everything right, abnd nothing helps. the weird thing is sometimes it goes away, completely for a few weeks, and i get a bit of hope, and then hits my back in the face soon after that. there is no correlation between it and stress or diet or anything. i have searched. it started about a year and a half ago, mild...my doctor kept telling me it will go away, it has just progressed, and im terrified it will get worse. i took this week off work. but i cant just stop working. i have about half a million bottle of pills i am ready to take any time soon. i dont want to die, but living in this **** any longer is just not going to happen. thanks for listening APC 2012@nodeception.com
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