First time posting, been a long time lurker here though. I doubt anyone here has answers for me but at this point I think I am posting this merely to share and perhaps not feel so terrible and utterly alone. I am a 25 female. As for my back story,I had always been what you would call a night owl and usually simply could not sleep at night no matter how hard my parents tried to force me. Eventually they gave up and switched me to a online school and that seemed to be the end of the the problem; I would sleep all day and live a happy normal life during the night. I was a strait A student and was happy. Of course I had not way of knowing at the time but my inability to sleep at night from birth was simply the precursor of the disease that would steal my life away from me.
When I turned 16 something started to change, it was very subtle at first, for example I would sleep 10 hours instead of 8, I just started to sleep more and more. We talked about this with my doctor and she said this was a normal thing for teenagers; that our developing brain simply needed more sleep and that when I got older this would stop. Of course it didn't stop but instead took over my life. Soon I struggled to stay awake even during the night time. I would be awake from 1am to about 3am just to do my school work then I would just sleep the rest of the time. At first my parents thought that online school had just made me lazy and spoiled and thought the answer was simply to be stricter until they began to see me literally pass out before their own eyes. Now we lived in a small country town and few doctors so it took till I was 20 years old to finally have the sleep study that would give a name to the thing that had stolen my life away, Narcolepsy.
At first I was optimistic, after all the doctor told me that this condition was super treatable and that will all the stimulates now available that surely we would find the right meds and I would live a normal life. Ritalin, Adderall, Nuvigil, Modafinil, Armodafinil, Methylphenidate , ect. I was put on every type of stimulate at every dose and every combination, but the only thing they managed to do was make my blood pressure high. By the age of 23 I would sleep for days, it had gotten so bad that I would just put a doggie training piddle pad under me because not even bowl movements awoke me anymore. I would awake for maybe 20 minutes every 30 hours or so to eat and drink as much as I could before the darkness reclaimed me. I had given up, there was no hope left for me at this point. No meds worked and while docs tried to send me to therapy but I could never stay awake for a appointment or group so it became obvious very quickly that therapy was pointless for me.
Then right before my 24th birthday I had a bad fall. I passed out while attempting to go down a flight of stairs, I fractured my right hip damaging my right hip socket badly. This was when I was introduced to Norco. At first I insisted I didn't need any pain drugs, because I would just eventually pass out, but the pain crippled into my dreams. Even though I was asleep I was dreaming with terrible pain so I gave in; I still remember looking at that bottle of Norco reading that it would cause drowsiness and laughing because there was no way and in hell anything could make me more drowsy that I already was. I took 2 10mg ate a little something and went to go back to sleep expecting the norm. Oh sweet merciful god, I still remember what happened so well. With in 30 mins it was like the veil of exhaustion was lifted from my head...I felt so alive, so awake, I remember just sobbing in joy because for the first time in almost 10 years I did not feel tired, I did not feel like I was about to pass out, it felt as though my brain was finally normal. I stayed up 2 days strait before I decided enough was enough and that I needed to give it a break (and that was just with taking 6 a day, so it wasn't like I was taking 900 of them or anything).
Norco was a miracle drug for me and when my bottle ran out I quickly scheduled a appointment with my sleep doc, believing for sure he would give me more ( I mean how could this drug be any worst than the other shit he tried to pump me full of?) I mean this was a miracle! I was normal! I could have a life again! Of course when I showed him the name of my new miracle drug he was horrified and said it was surely impossible! Opiates make people sleep! Even though its been scientifically proven time and time again that people with Narcolepsy have very different brains that often react VERY different to drugs than normal brains do. It also didn't matter that this doctor had been seeing me (and drug testing me) for 4 years; he quickly labeled me as a drug addict and pushed me out the door. It became very clear very quickly because of the DEA's war against Opiates that it didn't matter how much of a miracle these drugs were for me no one was going to give them to me for Narcolepsy.
However I was not quite out of luck yet, I do have endometriosis as well as the beginning stages of interstitial cystitis, so I do have pain problems, I've just always just dealt with them by myself. So off to my gyno I went and even though it took 3 mouths I got into a pain clinic and after my very first visit with this pain doc she gave me a bottle of 60 Norco and said she would see me in 2 weeks. It was perfect...or so I thought. It became very clear very quickly that this pain doc was WAY over booked with WAY too many patients. She said see you in 2 weeks but that actually meant see you in 2 months. At first I didn't think this to be a huge problem I figured I would just sleep away the time when I didn't have my miracle drug but that was back when I was a fool who had now idea what withdrawal was. I complained about the withdrawals to her and she thought that meant I needed stronger drugs, so in within 4 months I went from 4 Norcos a day to 8 a day and 50mg of Oxcy twice daily...Of course as you many of you probably can imagine this just made the PAWS much worst each time she was too over booked or if she got sick or whatever. I got completely and utterly sick of it, I didn't understand why if she couldn't see me more than once every 3-4 mouths why she couldn't prescribe me 3-4 months at a time. Of course I feel stupid for not knowing it wasn't her fault but rather the DEA's doing. But like the complete tard I am after a bad week of PAWs I couldn't take it anymore and I took it out on her....bad idea...really bad idea, maybe the stupidest thing I've ever done. She dropped me like a hot potato and I can't blame her.
SO here I am, cold turkey about a month in. My primary care doc won't give me anything though he swears he is trying to find me a new pain doc, although that will probably take months if its even possible (I'm sure pain docs talk to each other and I'm sure my old one hasn't anything nice to say about me now). My family (which I live with) think I am just a terrible drug addict and want nothing do with me, so I have absolutely no support. I have no way to get myself to any sort of support group because I can't drive and the sleepiness is coming back with a vengeance. I have no money for Rehab.....however and more importantly I don't want to stop! There I said it, I do not want to stop!!! I feel like that statement alone makes me bad or different some how. I come here reading other peoples stories about how bad they want to stop or what they would give to stop and it just makes me feel like...like I am wrong. Does that make me a bad person? Am I just a druggy in denial? The PAWs have started to calm down but I am now back to sleeping 20 plus hours a day. I just want to have a life....is that so wrong? As I type this I haven't bathed in weeks my hair is now in dreds I am sitting in a worn dirty soiled night gown on sheets that are just as fowl and I know that in any moment I will fall back asleep where I will have pain full dreams. If drugs aren't the answer then what is? Is my destiny to really just rot on a bed til I die? I just feel so alone and lost, isolated in a little room, where no one talks to me, no one checks in on me, I could die right now and no one would notice until I started to stink up the place; and I know that sounds dark and depressing but its the honest to god truth.
I try to keep telling myself that I will find another doc that will help me and everything will be okay once I get my miracle drug back, but the DEA's war on opiates is always in the back of my mind, it seems they will not be content until opiates are just strait up illegal period. Then what? On a side note I did order some kratom that should be coming tomorrow or the next day, never tried it before any advice on kratom? Is it really similar to opiates or did I just waste what little money I have on a placebo effect?
When I turned 16 something started to change, it was very subtle at first, for example I would sleep 10 hours instead of 8, I just started to sleep more and more. We talked about this with my doctor and she said this was a normal thing for teenagers; that our developing brain simply needed more sleep and that when I got older this would stop. Of course it didn't stop but instead took over my life. Soon I struggled to stay awake even during the night time. I would be awake from 1am to about 3am just to do my school work then I would just sleep the rest of the time. At first my parents thought that online school had just made me lazy and spoiled and thought the answer was simply to be stricter until they began to see me literally pass out before their own eyes. Now we lived in a small country town and few doctors so it took till I was 20 years old to finally have the sleep study that would give a name to the thing that had stolen my life away, Narcolepsy.
At first I was optimistic, after all the doctor told me that this condition was super treatable and that will all the stimulates now available that surely we would find the right meds and I would live a normal life. Ritalin, Adderall, Nuvigil, Modafinil, Armodafinil, Methylphenidate , ect. I was put on every type of stimulate at every dose and every combination, but the only thing they managed to do was make my blood pressure high. By the age of 23 I would sleep for days, it had gotten so bad that I would just put a doggie training piddle pad under me because not even bowl movements awoke me anymore. I would awake for maybe 20 minutes every 30 hours or so to eat and drink as much as I could before the darkness reclaimed me. I had given up, there was no hope left for me at this point. No meds worked and while docs tried to send me to therapy but I could never stay awake for a appointment or group so it became obvious very quickly that therapy was pointless for me.
Then right before my 24th birthday I had a bad fall. I passed out while attempting to go down a flight of stairs, I fractured my right hip damaging my right hip socket badly. This was when I was introduced to Norco. At first I insisted I didn't need any pain drugs, because I would just eventually pass out, but the pain crippled into my dreams. Even though I was asleep I was dreaming with terrible pain so I gave in; I still remember looking at that bottle of Norco reading that it would cause drowsiness and laughing because there was no way and in hell anything could make me more drowsy that I already was. I took 2 10mg ate a little something and went to go back to sleep expecting the norm. Oh sweet merciful god, I still remember what happened so well. With in 30 mins it was like the veil of exhaustion was lifted from my head...I felt so alive, so awake, I remember just sobbing in joy because for the first time in almost 10 years I did not feel tired, I did not feel like I was about to pass out, it felt as though my brain was finally normal. I stayed up 2 days strait before I decided enough was enough and that I needed to give it a break (and that was just with taking 6 a day, so it wasn't like I was taking 900 of them or anything).
Norco was a miracle drug for me and when my bottle ran out I quickly scheduled a appointment with my sleep doc, believing for sure he would give me more ( I mean how could this drug be any worst than the other shit he tried to pump me full of?) I mean this was a miracle! I was normal! I could have a life again! Of course when I showed him the name of my new miracle drug he was horrified and said it was surely impossible! Opiates make people sleep! Even though its been scientifically proven time and time again that people with Narcolepsy have very different brains that often react VERY different to drugs than normal brains do. It also didn't matter that this doctor had been seeing me (and drug testing me) for 4 years; he quickly labeled me as a drug addict and pushed me out the door. It became very clear very quickly because of the DEA's war against Opiates that it didn't matter how much of a miracle these drugs were for me no one was going to give them to me for Narcolepsy.
However I was not quite out of luck yet, I do have endometriosis as well as the beginning stages of interstitial cystitis, so I do have pain problems, I've just always just dealt with them by myself. So off to my gyno I went and even though it took 3 mouths I got into a pain clinic and after my very first visit with this pain doc she gave me a bottle of 60 Norco and said she would see me in 2 weeks. It was perfect...or so I thought. It became very clear very quickly that this pain doc was WAY over booked with WAY too many patients. She said see you in 2 weeks but that actually meant see you in 2 months. At first I didn't think this to be a huge problem I figured I would just sleep away the time when I didn't have my miracle drug but that was back when I was a fool who had now idea what withdrawal was. I complained about the withdrawals to her and she thought that meant I needed stronger drugs, so in within 4 months I went from 4 Norcos a day to 8 a day and 50mg of Oxcy twice daily...Of course as you many of you probably can imagine this just made the PAWS much worst each time she was too over booked or if she got sick or whatever. I got completely and utterly sick of it, I didn't understand why if she couldn't see me more than once every 3-4 mouths why she couldn't prescribe me 3-4 months at a time. Of course I feel stupid for not knowing it wasn't her fault but rather the DEA's doing. But like the complete tard I am after a bad week of PAWs I couldn't take it anymore and I took it out on her....bad idea...really bad idea, maybe the stupidest thing I've ever done. She dropped me like a hot potato and I can't blame her.
SO here I am, cold turkey about a month in. My primary care doc won't give me anything though he swears he is trying to find me a new pain doc, although that will probably take months if its even possible (I'm sure pain docs talk to each other and I'm sure my old one hasn't anything nice to say about me now). My family (which I live with) think I am just a terrible drug addict and want nothing do with me, so I have absolutely no support. I have no way to get myself to any sort of support group because I can't drive and the sleepiness is coming back with a vengeance. I have no money for Rehab.....however and more importantly I don't want to stop! There I said it, I do not want to stop!!! I feel like that statement alone makes me bad or different some how. I come here reading other peoples stories about how bad they want to stop or what they would give to stop and it just makes me feel like...like I am wrong. Does that make me a bad person? Am I just a druggy in denial? The PAWs have started to calm down but I am now back to sleeping 20 plus hours a day. I just want to have a life....is that so wrong? As I type this I haven't bathed in weeks my hair is now in dreds I am sitting in a worn dirty soiled night gown on sheets that are just as fowl and I know that in any moment I will fall back asleep where I will have pain full dreams. If drugs aren't the answer then what is? Is my destiny to really just rot on a bed til I die? I just feel so alone and lost, isolated in a little room, where no one talks to me, no one checks in on me, I could die right now and no one would notice until I started to stink up the place; and I know that sounds dark and depressing but its the honest to god truth.
I try to keep telling myself that I will find another doc that will help me and everything will be okay once I get my miracle drug back, but the DEA's war on opiates is always in the back of my mind, it seems they will not be content until opiates are just strait up illegal period. Then what? On a side note I did order some kratom that should be coming tomorrow or the next day, never tried it before any advice on kratom? Is it really similar to opiates or did I just waste what little money I have on a placebo effect?
