Sandy DiVa

Hi, Im the new girl who is commenting on very old posts lol Sorry about that! i have yet to locate a search feature so please forgive me if this has been asked. for those of you who do not experience low blood pressure, or fainting and dizziness AND taking an opioid pain medication do you find that the opioid helps your symptoms? I have been prescribed Oxycodone since 2015. I immediately noticed a difference in my flushing, sweating and of course, pain when starting this medication. To this day, i can tell when its time for my next dose because i start getting sweaty in my face well before the pain is back full force (or even half force). I also start getting the chills and feeling like im going into mild withdrawal just 3 hours after i took my medication which is impossible. is this just a coincidence? Or is the oxycodone controlling my symptoms to some degree? i did learn that the half life of oxycodone IR is 3 hours (not sure what that means tbh not a doctor here) if that means anything to anyone. I have an experience to share that made me start thinking about this. Because of misused cdc prescribing guidelines (the writers of the guidelines came out stating all the ways the guidelines had been misused back in 2019) and years of restrictions on opioids in the US, you cannot fill your prescription even an hour early. Meaning i NEVER have “extra” pills. I take them as prescribed exactly when i am supposed to. But one time, in all these years, i had a flu or virus that caused a lot of vomiting. I ended up sending 3 pills down the drain over the course of a day meaning i was short that month. I didnt even think about it, i never had to before, so i didnt adjust the timing of my doses accordingly and was, at first, confused as to why i didnt have enough of my script to last until the next morning. The last dose i took was at 4pm. By midnight i was in agony, i couldnt stop sweating and my bp was very high. But my heart was why i was so scared, id never felt it beat in the pattern it was beating so i went to the ER and told them what happened and that i have dysautonomia. They gave me my medication and kept me until my vitals stabilized. I was still missing a dose of my medication but i was able to endure the pain and mild symptoms until the pharmacy opened. not only did this experience make me think that maybe opioids control my symptoms, but it also made me very scared of ever stopping them now that my body has developed a dependency to this medication. I dont think a broken ANS could survive withdrawal like a healthy person could. just my thoughts but am curious if anyone else gets any symptom relief while on opioid therapy for pain. I can’t believe im just now finding this forum. Its been an hour and I’ve already learned so much from all your posts! I cant wait to learn more!

HOW do you get weekly IV fluids? Ive been trying to get them for the past year and my doctors dont know how to order them either!

Just thought of a very unique symptom...BRAIN ZAPS. these terrify me and usually happen if im exhausted and starting to fall asleep or unable to fall asleep. ill literally hear and feel a zap in my head. Its awful but they go away as soon as i get some sleep

I realize this question is 7 years old but maybe he will see this. i was diagnosed with dysautonomia in 2018, after searching for a diagnosis for 14 years BECAUSE i experience no dizziness, lightheadness or fainting. my symptoms include inappropriate sinus tachycardia, exercise intolerance, heat and cold intolerance & a “broken internal thermostat” (more below), upper body sweating with ANY exertion, even just standing (and even without sometimes due to hot flashes or external temperature), shortness of breath, flushing, chest pain, IBS, fatigue, brain fog, widespread pain and well, im sure im missing some symptoms, but my MAIN complaints (in no specific order theyre all equally awful) are: sweating in my face, chest and back Tachycardia and chest pain Exercise intolerance shortness of breat HIGH BP (not low) temperature abnormality ive never fainted or come close to fainting from this condition. I get lightheaded no more than the average person (maybe 4 times in 44 years lol)and i dont think ive ever been dizzy for no reason (carnival and playground rides have made me dizzy thats about it). The temperature thing is also linked to MOVING AIR. I can still sweat profusely when its 32°F/0°C outside if theres no moving air. I live with 2 fans in my face at home, one on each side of my head, and instantly feel too warm when they are turned off. Its about how i feel, not the actual temperature. The world feels like its 20° warmer for me than it is for everyone else. But i also cant handle cold temperatures. My muscles will literally convulse with sudden cold. My body need a lot of time to acclimate to a drastic temp change like going from my warm home to my freezing cold car. heat triggers my symptoms. Im much more symptomatic in summer and winter than i am spring and fall (i live in philadelphia for context). ive gone into heat exhaustion in 80°F weather just by walking to the corner store and back again because humidity also plays a huge roll. I think the misconception is that all Pots is the same. I believe there is a second, very rare form of POTS and i have it lol seriously though, i have the symptoms of Hyperadrenergic POTS but NORMAL norepinephrine levels. I dont have the low blood pressure of Normal POTS that treatment is tailored around. If i increase my salt its not good! I feel like my blood is defying gravity and pooling in my waist UP. Its feels horrible. So ive been sitting in limbo between to conditions that i dont fit into enough to treat. How do you treat high blood pressure that goes back to normal when you lay down? I really am starting to believe that i have a rare form of POTS that has not been defined yet. i have been functionally bed ridden for 4 years now. Everyday, I get out of bed and drive my spouse to work and come home and return to bed. I get out of bed to do my shopping, dr appointments, visit family for an hour, etc etc etc. but when im home, THE ENTIRE TIME IM HOME, i live in my bed because this is the only place where i feel even remotely “normal”. Where i can control my pain, the temperature, and i can be laying down which decreases symptoms. To make matters worse, we are now living in poverty because of my condition. SSDI (now will be SSI since the denials have stolen the insurance i paid for) has denied me 3x because of lack of diagnosis, then we think you can work, then youre too young to be sick (they actually put we take many factors into consideration when determining eligibility and AGE was one of them). I was the bread winner in the family. Now im a burden. i dont wish this “life” on anyone. Im a prisoner in the maximum penitentiary that is my body with no parole or pardon. This really sucks.