joe Posted December 6, 2010 Report Posted December 6, 2010 I was going to wait a little bit longer to post about this but I feel pretty confident where I stand now. Last Monday I got a script for naltrexone 50mg. Before I took it I didn't really give it too much thought meaning I didn't really think it was going to make me feel any different or I was going to have any success with it. I've been on a god damn list of medications for this prior to and haven't gotten much relief from anything. This includes Keppra which I took for maybe eight months and actually ended up in the hospital because of(that whole thing was a real nightmare which I'm not going to get into). I know a couple of people have had success with Keppra but a lot haven't and that's just a fact. I guess I could list some others just to give you some perspective on where I'm coming from as far as trial and error. Others include Abilify(which helped slightly but was probably the only one for my case at least), Asenapine/Saphris(nothing there), Lamictal, Tegretol(bad side effects and no relieve), Topamax, Welbutrin, Klonopin(it's like a little break, most will tell you that but noone has really gotten anything long term), Celexa(SRRI, increased visual) Remeron(a long time ago), Effexor(also a long time ago), some others that aren't even coming to me right now but what I'm getting to is that I've really been through the ringer with this and got honestly say I've played the part of guinea pig to no avail numerous times. So I figure if something helps me since I've been resistant to pretty much damn near everything, it should probably work for most people dealing with HPPD. I myself have been dealing with this fucking enigma for over 13 years now and can't even tell you what it has cost me in so many ways. I'm not trying to cry about it, it's just a fact. But I hope this helps others and that their struggle may be shortened due to it. So I got a script for Naltrexone on monday and like I said I didn't even give it too much thought or really had any confidence something would happen. Well something did happen and it was rather dramatic, more than anything else I have taken! It was incredible. The first time I took it I cut it into four pieces so I only took a quarter of a 50mg tab and it completely knocked me out for about two to three hours, plus my stomach got a little sick but when I got up after that I felt a little bit more in myself so to speak, it was definitely noticeable. I was a little ecstatic but I didn't really want to jump the gun or anything. There's a lot of internet fuss being made about low dose naltrexone, a couple of pages dedicated to it and how it is helping with a wide range of diseases. I guess the next day I took another quarter of a tablet and the same thing, got knocked out for a couple of hours and when I came to I felt more with it. I got a little more ecstatic but still didn't want to jump to gun. I also noticed that my vision had gotten slightly better, like I could tell the difference between shit I don't know like corners where light meets better, like everything wasn't just blended together if that makes sense, especially sunlight. After the first three days I had only taken a total of one 50mg pill and was continually feeling more with it. I was really getting excited about what was happening but like I said, didn't want to get ahead of myself. Naltrexone is used for opiate addiction and I couldn't tell you exactly how it is working but it is working and it's not taking long. I could really feel it "manipulating" things in my head or whatever, it's rather profound. What the Naltrexone is getting at the most is the Depersonalization and Derealization. Shaolin bomber, I know just tried naltrexone not too long ago and that you only took it one time and it was too strong for you and I'll agree, it's a pretty strong med, a lot stronger than I thought it was going to be, really knocked me out at first but really man, give it another try(the knock out has dissipated over the last week too)! I've been on a ton of different shit over the years for this like I was saying to set this up and Naltrexone really helps and I've only been on it for a week. My DP, DR has seriously gone down and my vision hasn't gotten any worse, in fact, it's gotten slightly better, most noticable neon like lights which nothing has helped with that I've taken previously. I'm feeling more organized mentally and just more with the program. There is no way I could have placeboed myself with this and I know that's not what's going on. In total, I've taken three and half 50mg pills for the week as I've increased it rapidly in the last two or three days to see what the effect would be. Right now I don't know if staying with a low dose or an even lower dose like some of these websites advocate would be the way to go or a regular dose is best. Either way this is definitely a beneficial med for HPPD as I've said I've been on everything so if I get relief, others I would hope have to as well. It kind of pisses me off because if you go and look up the old old HPPD board, the stormloader board, Naltrexone is listed as a possible treatment and I never tried it, but I tried all of the others at some point or other. I know too that some people on the Depersonalization boards have tried Naltrexone and haven't gotten anything from it but I don't think this would be the case with HPPD as no offense but a lot of those people's DP lean more to the psychological side or posssibly something else where HPPD etiology is something of it's own, I couldn't talk myself out of HPPD you know? There was a paper written in '97 by Lerner about anecdotal accounts of HPPD being treated with Naltrexone and I've looked everywhere for them on the internet but nothing comes up. So bottom line, Naltrexone working, good, good, good, give it a shot, it would be nice to see this concurred with others. I'll update this as I go a long, if you have any questions don't hesitate to drop a line. It would be nice to see some activity on this board as it literally hasn't moved in over a week. I hope I made this readable enough for everyone. The knock out effect has dissipated over the week too. Good Luck!!!
1998 Posted December 7, 2010 Report Posted December 7, 2010 OFF SUBJECT/look how active this board is lol. I know the hppd didn't go away hope some ppl come back. Anyways Joe I'm glad that's helping you like I said on Duro's board and I'm going to see if my doc w/ give Naltrexone to me w/ my klonopin. I think they give it to alcoholic's because it makes them sick when they drink (if i'm wrong correct me I'll google it in sec though), so maybe I'll just say hi My name is 1998 and I'm and alcoholic and it will magically fall into my hands lol/ PPL start posting Where Sam, Jay, Gill, mom of 2 and all the others that always have good advice. Maybe it's just come to the point where there's nothing more to say about hppd, because we've learned to accept it and know the only meds that combat it. A lot of the new threads that are started are things we've gone over in the past 10 different x's. Maybe a community center to just talk about everyday life will bring in activity. Or I could just start another Football/Soccer thread lol, my favorite thread ever peace
joe Posted December 8, 2010 Author Report Posted December 8, 2010 yeah, I agree, this board seems completely dead and it's kind of discouraging. I know my HPPD hasn't gone away but I'm still working on it, still trying to find something that makes life easier, what I'm doing now seems to be benefiting. I guess when all the old information was lost it's possible that some people just threw there hands up about it. Something about this board seems a little more constraining too, just my take. It would be nice to see some old names on here just for the sake of it. I guess you can't look this board up by just googling it either. And it kind of sucks for people that may have just gotten this because there was a good base of information to sift through and a "your not the only one" feeling but I guess that's life and it will have to go on.
balance Posted December 10, 2010 Report Posted December 10, 2010 Very interesting! and it's great you have found something that has worked! How hard is this drug to get prescribed? I would like to try it! Any updates are apprectiated, cheers! Also, in regards to the forum not coming up on google search, why is this? I had to remember the name of this board to even find it!
Saga Posted December 10, 2010 Report Posted December 10, 2010 Joe - Although I've never tried Naltrexone it's promising to read what you've written and I look forward to reading more about your experiences. 1998 - Just so you know, many of us are here and simply quiet. As the years pass and things don't really change too much I've become a lot less vocal. This doesn't keep me away though and I still carry around a lot of hope for the future, I just spend less of my time on message boards these days. You, and all who are living with HPPD are never far from my thoughts.
joe Posted December 11, 2010 Author Report Posted December 11, 2010 David set it up so that this site cannot be looked up through a google search. He has his reasons I imagine but I don't know what they are. Naltrexone is helping most with Depersonalization and Derealization. I'm noticing slight improvement with visual symptoms slowly, definitely not an increase in any way and just having the depersonalization marginalized makes the visual aspect of HPPD a lot more bearable/manageable and less noticable. The marginalization of DP/DR seems to be steadily increasing or at least I'm getting more use to not having it so much in the picture and I'm trying to use my brain as much as I can while I'm in the "window" of the medication so I'm reconnecting faster so to speak if that's not over anybody's head. I've increased the dosage of Naltrexone a couple of nights past from 50mg to 100mg, and once 200mg just to see what the effect would be. The more I increased the dosage the more effect it had of DP/DR and visual disturbance but I don't have enough right now to stay at that level of dosage. Being on it doesn't really feel like you on much of anything and you can look that up other places on the internet with med info about naltrexone. It's nothing like SRRI's where you get dry mouth, weight gain, all of that and definitely not like antipsych's. The only symptom I've gotten from Naltrexone is nausea when I've taken it but that doesn't last too long and it's not overwhelming. Taking like a dose like 200mg really makes you feel like you've "come down", it kind of sends you through a whirl. Overall, I feel a lot more centered too and my cognition seems/feels more organized slowly but surely. You could say I've grabbed a new sense of hope as well. I imagine if you wanted to get a script for naltrexone from a doc without too much hassle there was a small study done on naltrexone and depersonalization that you might want to take with you. You could probably say too that you know someone that is having a lot of success with it. This too kind of gets you off having to have the complete HPPD conversation if you haven't had it already. Here's the link to the study's abstract http://www.ncbi.nlm.nih.gov/pubmed/15876908 If you read the study, I would say I've had more than a 30% decrease in DP/DR and I imagine other HPPD patients would as well due to our DP/DR more than likely being more of a chemical etiology, just my take in short. Again, I wasn't even expecting anything to happen when I started taking naltrexone, it just did and it's been less than a total of two weeks so that's rather remarkable. hope that helps, I'll update how I'm doing and I wish you all the best
joe Posted December 11, 2010 Author Report Posted December 11, 2010 here's another study I found http://www.ncbi.nlm.nih.gov/pubmed/10520978
Polly Posted December 11, 2010 Report Posted December 11, 2010 Hi Joe, It's wonderful to hear that you're experiencing some improvements! I have one question - why did you choose Naltrexone instead of Low Dose Naltrexone? I've been reading about LDN and wondering if my doctor would agree to try it. Like you, I've been on medications which have been disastrous for me; the very low probability of side effects with LDN appeal to me. Polly
joe Posted December 12, 2010 Author Report Posted December 12, 2010 I thought about the low dose naltrexone when I started but it just didn't happen that way. When I started I was cutting up 50mg pills into fours to see if a low dose would be the better way to go even though low dose naltrexone is even lower than that. Just taking a quarter of a pill knocked me out at first and at least in my experience I don't doubt that low dose naltrexone probably has some applications for some people. After reading the studies too about DP and naltrexone is seems like higher doses are the way the go and just my fiddling around with it a little bit I notice more change at a higher dose. I don't get a lot of side effects if any on just regular naltrexone. A little bit of nausea but it goes away after awhile.
balance Posted December 12, 2010 Report Posted December 12, 2010 Definatly interested in seeing how this goes, and whether or not it is a permanent or just helping while being on the drug.
joe Posted December 19, 2010 Author Report Posted December 19, 2010 Just thought I'd give a quick update. My DP/DR is practically gone. 80% reduction I guess? My cognition is still improving so good there. I don't notice visual symptoms during the day so much but when I'm in dark rooms I can still see the HPPD. Only thing I really notice during the day is brightness off of street and car lights I guess or at least that's what comes to mind but it doesn't bother me as much at least with DP not so much in the picture and it's a little less bright, definitely not brighter like taking an SRRI in my experience. Over focus on certain objects like someone was pointing out on here has decreased. I always use the example of a cigarette cherry and being able to see every little detail overly. That seems to have decreased. When I look at my hand during the day is doesn't look like it's tripping if you know what I mean. Trails too have decreased but right now that seems more up and down, sometimes better, sometimes worse. I still notice the HPPD in darker rooms but things don't sound so spaced out and distorted if you know what I mean. There's a lot less noise in my head too which is really cool, like everything has really calmed down, a lot more than ever taking antipsych's in my experience at least. I haven't been going on these worry binges either so to speak either where I almost couldn't stop myself and thoughts. I think people can tell around me too that I sound more organized when I talk to them and that I'm not all over the place and just more centered and calm in myself, I feel more calm in myself. Afterimages are down a little bit too but what's weird and like I've said earlier in this post, I notice them more at night or in darker rooms like the underlying visual disturbance/processing is just more apparent in that state. Once a doctor told me that was because my pupil is bigger in darker rooms so your trying to pull in more but who knows, I doubt he really knew what he was dealing with but it kind of makes sense. I feel more connected overall, so far, so good. Want to know anything else, just let me know. joe
robbie123 Posted December 19, 2010 Report Posted December 19, 2010 Just thought I'd give a quick update. My DP/DR is practically gone. 80% reduction I guess? My cognition is still improving so good there. I don't notice visual symptoms during the day so much but when I'm in dark rooms I can still see the HPPD. Only thing I really notice during the day is brightness off of street and car lights I guess or at least that's what comes to mind but it doesn't bother me as much at least with DP not so much in the picture and it's a little less bright, definitely not brighter like taking an SRRI in my experience. Over focus on certain objects like someone was pointing out on here has decreased. I always use the example of a cigarette cherry and being able to see every little detail overly. That seems to have decreased. When I look at my hand during the day is doesn't look like it's tripping if you know what I mean. Trails too have decreased but right now that seems more up and down, sometimes better, sometimes worse. I still notice the HPPD in darker rooms but things don't sound so spaced out and distorted if you know what I mean. There's a lot less noise in my head too which is really cool, like everything has really calmed down, a lot more than ever taking antipsych's in my experience at least. I haven't been going on these worry binges either so to speak either where I almost couldn't stop myself and thoughts. I think people can tell around me too that I sound more organized when I talk to them and that I'm not all over the place and just more centered and calm in myself, I feel more calm in myself. Afterimages are down a little bit too but what's weird and like I've said earlier in this post, I notice them more at night or in darker rooms like the underlying visual disturbance/processing is just more apparent in that state. Once a doctor told me that was because my pupil is bigger in darker rooms so your trying to pull in more but who knows, I doubt he really knew what he was dealing with but it kind of makes sense. I feel more connected overall, so far, so good. Want to know anything else, just let me know. joe hi joe thanks for the update ive just started naltrexone today 25mg to start with so in keen to hear your progress .cheers robbie
joe Posted December 19, 2010 Author Report Posted December 19, 2010 cool, yeah, so far, so good with me. I had to start low too, in fact I started even lower than that, a quarter of a 50mg pill and that took a couple of days to move up on if you've read through my post, I've tried to be rather detailed on the important stuff. I got a little nausea when beginning and the first couple of days definitely knocked me out for a couple of hours at least in my experience and then when I came to, I felt a little more with it, a little more than slightly noticable. That feeling continued to increase over time and now at a higher dosage with no knockout effect it seems to be working well. I really hope it works for you because if this can be concurred with a couple other people than maybe something larger has been stumbled upon. I can unequivocally say it's helping me and I really hope it helps you too robbie. Give it a little time, I hope you'll be pleased and please, keep me updated on what's going on with you. Side effects have been minimal too, I really don't even notice it except the little nausea I get sometimes now about twenty minutes after I take a pill, but that's kind of going away too. please update, good luck joe
joe Posted December 19, 2010 Author Report Posted December 19, 2010 what kind of HPPD do you have Robbie? Is DP/DR a major part of it?
robbie123 Posted December 21, 2010 Report Posted December 21, 2010 Hi joe ive had hppd for 33 years wouldnt say dp/dr are a major problem although i do get mild bouts- maybe some in the early years but it dissipates over the years naturally. not really noticing anything yet with the naltrexone maybe slightly increased visuals and some cold sweats and a little insomnia - 3rd day at 25mls . cheers robbie
balance Posted December 22, 2010 Report Posted December 22, 2010 Very interesting, maybe the naltrexone is suited more for those who have the most problem with dp/dr. Would appreciate any updates from you also robbie, the more the better, this is a very interesting drug.
robbie123 Posted December 22, 2010 Report Posted December 22, 2010 Hi im dropping down to 12.5 mgs and sitting there for a few weeks - been pretty tired with initial onset -feeling more awake today more energy which is the worst symptom of my hppd - no noticable change in visuals yet -not that its a concern either way - if anybodys interested google low dose naltrexone forums( ldn forums ) many many stories of huge succses within the ms fybromilgia and lupus community 4.5mgs seems to be the recommended dose within these ailments. Reading between the lines of the above ailments their does seem to be a thread connected with hppd atleast the physical symptoms ( fatique brainfog muscle aches) etc so some room for optimisim but only a glimmer at the moment -will keep you updated . cheers robbie
LarryC Posted December 23, 2010 Report Posted December 23, 2010 Hi im dropping down to 12.5 mgs and sitting there for a few weeks - been pretty tired with initial onset -feeling more awake today more energy which is the worst symptom of my hppd - no noticable change in visuals yet -not that its a concern either way - if anybodys interested google low dose naltrexone forums( ldn forums ) many many stories of huge succses within the ms fybromilgia and lupus community 4.5mgs seems to be the recommended dose within these ailments. Reading between the lines of the above ailments their does seem to be a thread connected with hppd atleast the physical symptoms ( fatique brainfog muscle aches) etc so some room for optimisim but only a glimmer at the moment -will keep you updated . cheers robbie Robbie, Thanks for the info about the med and fibro. I have fibromyalgia and nothing helps. Can't see me asking my doc for another med right now though. I never had DP/DR so not an interest for the HPPD for me. But good to hear youare having good results. Wish there were more of the long term members on this site. Many have DP/DR and might benefit from this. They would certainly be glad to hear about a med that helps with that symptom which seems to be the most difficult to deal with for them who have posted.
joe Posted December 23, 2010 Author Report Posted December 23, 2010 Hope this isn't depressing but it is probably important. Turn back the clock, when I first got HPPD it was coupled with fibromylagia and chronic pain/fatigue. It was diagnosed as I had the pressure points and soreness in my muscles. I guess one of the lay theories behind fibromylagia is that your pain/pleasure sensors get turned around after say a traumatic event(bad trips?). I was lethargic most of the time and couldn't even get out of bed most days. I was literally like that for several years, just horrible really along with HPPD, just willed myself to survive I guess, hard to think about. It's probably worth mentioning that I was in a car accident where I got whiplash while on LSD but I was already dealing with the fibromylagia, chronic fatique, and HPPD prior to that for almost a year, it just made it worse and that was about when I finally stopped the mad track that I had gotten myself onto as a misguided confused teen which I am not now. The fibromylagia dissipated over the years but I would still tire out relatively quick. I still had chronic pain though and bouts of fatigue. We've got a temperpedic bed at my house now and I couldn't even sleep in it without severe lower back pain by morning which didn't make any sense to my girlfriend because she slept like a baby and never had any pain, along with every other person I know that has one. A lot of nights I would end up moving to the couch because it was easier on me. Before I started taking naltrexone I had a script for Gabitril, the GABA reuptake inhibitor. I had pretty high hopes for it because of the supposive GABA connection with HPPD. I didn't last on it long as the side effects were horrible, you should read the profile, it can induce temporary mental retardation if titrated too quickly or just being on a high dose among other things, I'm being serious, look it up, plus it gives you this uncool drunk feeling that you can't shake, amnesia too. It can lower you seizure threshold and just all sorts of crap, it was pretty bad news for me. The one thing I did notice on it if you can call it a positive was that it numbed my nerves meaning like literally all my nerves through my body and I could sleep on the temperpedic without pain just due to not being able to feel almost anything, I couldn't even feel my jaw bite down and what kind of life is that? But the other side effects and just the games it started playing with my HPPD mind which began to snowball were way too much to call it a benefit. I guess it numbed my nerves in the same way Lyrica or something would, It was different but just I don't know anything else to compare it to. That was another reason that when I started taking naltrexone I didn't have much hope for it. Oh boy here we go again with another one I thought thinking of the utter failure Gabitril had just been along with others. But naltrexone hasn't been that way at all. My energy has improved along with brainfog, and just all together being more together. I can now sleep in the temperpedic bed without my lower back killing me by the morning and I just don't know what else I can say about my experience with naltrexone, thank you god! Like I've said before my DP/DR is practically gone as of now, yeah I've still got some visual symptoms, a little less, but the tiredness, off and on pain, and DP/DR are almost non existent. Today I lifted weights and road a bicycle around the neighborhood and it felt good. I guess those pain/pleasure sensors getting crossed up could account for the pain I was experiencing say when I was trying to sleep on the temperpedic as it always seemed to originate from the back left of my head. One of the papers I posted pointed that some theory points to DP/DR originating from or being a factor of disregulation of the opiod system. I guess I'm playing lay doctor but it would kind of make sense that chronic pain, fibromylagia could get lumped in to that as well. In my experience I don't doubt that fibromylagia, chronic pain/fatigue patients are finding relief with naltrexone because you could probably lump me in that group as well, even the doctor that prescribed it to me said they're find all kinds of far reaching applications for naltrexone and the amount of positive feedback from the internet is rather remarkable. I can just talk from my experience, I didn't write shit about the great successes I had with Gabitril because there was nothing for me to say. Everything I've been writing is real, why would I come on here and bullshit all of you people. I'm hoping that by writing this out that hopefully others will not have to go through the long draining sometimes hopeless feeling of trial and error I went through. I want to see progress for everybody and a better way forward for members of this community. I hope this post doesn't get misconstrued or is too depressing, I've had to walk some pretty rough shoes dealing with this. Or for someone to say aha! that's why it would work for you and why it wouldn't for me, man, at least give it a shot. For robbie, when I started naltrexone, it was only 12.5 mg for the first couple of days, that was enough to knock me out for a couple of hours until I came back to and noticed a slight imporvement which steadily increased over time. Even the low dose naltrexone forums say there's an adjustment period so chin up man, stick with it for awhile please before you discredit it. Oh, and it is recommended to be taken at night for the low dose therapy if you hadn't stumbled across that already too. Good luck with it, I'm rooting for you. Robbie, are then fatigue, brainfog your main ailments, if not, what is? I noticed too that I get a little more benefit from taking a good multivitamin than prior. Good luck guys Joe
LarryC Posted January 4, 2011 Report Posted January 4, 2011 Hope this isn't depressing but it is probably important. Turn back the clock, when I first got HPPD it was coupled with fibromylagia and chronic pain/fatigue. It was diagnosed as I had the pressure points and soreness in my muscles. I guess one of the lay theories behind fibromylagia is that your pain/pleasure sensors get turned around after say a traumatic event(bad trips?). I was lethargic most of the time and couldn't even get out of bed most days. I was literally like that for several years, just horrible really along with HPPD, just willed myself to survive I guess, hard to think about. It's probably worth mentioning that I was in a car accident where I got whiplash while on LSD but I was already dealing with the fibromylagia, chronic fatique, and HPPD prior to that for almost a year, it just made it worse and that was about when I finally stopped the mad track that I had gotten myself onto as a misguided confused teen which I am not now. The fibromylagia dissipated over the years but I would still tire out relatively quick. I still had chronic pain though and bouts of fatigue. We've got a temperpedic bed at my house now and I couldn't even sleep in it without severe lower back pain by morning which didn't make any sense to my girlfriend because she slept like a baby and never had any pain, along with every other person I know that has one. A lot of nights I would end up moving to the couch because it was easier on me. Before I started taking naltrexone I had a script for Gabitril, the GABA reuptake inhibitor. I had pretty high hopes for it because of the supposive GABA connection with HPPD. I didn't last on it long as the side effects were horrible, you should read the profile, it can induce temporary mental retardation if titrated too quickly or just being on a high dose among other things, I'm being serious, look it up, plus it gives you this uncool drunk feeling that you can't shake, amnesia too. It can lower you seizure threshold and just all sorts of crap, it was pretty bad news for me. The one thing I did notice on it if you can call it a positive was that it numbed my nerves meaning like literally all my nerves through my body and I could sleep on the temperpedic without pain just due to not being able to feel almost anything, I couldn't even feel my jaw bite down and what kind of life is that? But the other side effects and just the games it started playing with my HPPD mind which began to snowball were way too much to call it a benefit. I guess it numbed my nerves in the same way Lyrica or something would, It was different but just I don't know anything else to compare it to. That was another reason that when I started taking naltrexone I didn't have much hope for it. Oh boy here we go again with another one I thought thinking of the utter failure Gabitril had just been along with others. But naltrexone hasn't been that way at all. My energy has improved along with brainfog, and just all together being more together. I can now sleep in the temperpedic bed without my lower back killing me by the morning and I just don't know what else I can say about my experience with naltrexone, thank you god! Like I've said before my DP/DR is practically gone as of now, yeah I've still got some visual symptoms, a little less, but the tiredness, off and on pain, and DP/DR are almost non existent. Today I lifted weights and road a bicycle around the neighborhood and it felt good. I guess those pain/pleasure sensors getting crossed up could account for the pain I was experiencing say when I was trying to sleep on the temperpedic as it always seemed to originate from the back left of my head. One of the papers I posted pointed that some theory points to DP/DR originating from or being a factor of disregulation of the opiod system. I guess I'm playing lay doctor but it would kind of make sense that chronic pain, fibromylagia could get lumped in to that as well. In my experience I don't doubt that fibromylagia, chronic pain/fatigue patients are finding relief with naltrexone because you could probably lump me in that group as well, even the doctor that prescribed it to me said they're find all kinds of far reaching applications for naltrexone and the amount of positive feedback from the internet is rather remarkable. I can just talk from my experience, I didn't write shit about the great successes I had with Gabitril because there was nothing for me to say. Everything I've been writing is real, why would I come on here and bullshit all of you people. I'm hoping that by writing this out that hopefully others will not have to go through the long draining sometimes hopeless feeling of trial and error I went through. I want to see progress for everybody and a better way forward for members of this community. I hope this post doesn't get misconstrued or is too depressing, I've had to walk some pretty rough shoes dealing with this. Or for someone to say aha! that's why it would work for you and why it wouldn't for me, man, at least give it a shot. For robbie, when I started naltrexone, it was only 12.5 mg for the first couple of days, that was enough to knock me out for a couple of hours until I came back to and noticed a slight imporvement which steadily increased over time. Even the low dose naltrexone forums say there's an adjustment period so chin up man, stick with it for awhile please before you discredit it. Oh, and it is recommended to be taken at night for the low dose therapy if you hadn't stumbled across that already too. Good luck with it, I'm rooting for you. Robbie, are then fatigue, brainfog your main ailments, if not, what is? I noticed too that I get a little more benefit from taking a good multivitamin than prior. Good luck guys Joe Hi Joe, Thanks for this post and your personal message. Could you list some links that talk about Naltrexone and fibro and chronic fatigue? I would like to print out and take to my doctor. Thanks, Larry
Polly Posted January 4, 2011 Report Posted January 4, 2011 I'm starting Naltrexone today. My doctor has told me to take 50mg every other night for the first week, then 50mg daily. I'm hoping for relief from fibromyalgia, phantom eye pain and headaches; and praying for some decrease of my hallucination. Joe and Robbie (and anyone else), how are you doing? LarryC, my doctor (neurologist) is very familiar with the use of Naltrexone to treat pain; it didn't take any convincing. (And if it doesn't work, we'll go back to his drug plan, which we'd talked about for an hour before I mentioned the Naltrexone.) Polly
joe Posted January 4, 2011 Author Report Posted January 4, 2011 here's a journal link for naltrexone and fibromyalgia http://www.ncbi.nlm.nih.gov/pubmed/19453963 if you just look up naltrexone and fibromyalgia plenty of links will come up with articles that might be just as good as this journal entry, I imagine chronic pain/fatigue too.
joe Posted January 4, 2011 Author Report Posted January 4, 2011 I seem to be doing fine with it. I partied way way too hard on new years and it has taken a couple of days for me to pull myself back together which would probably be the case regardless for me with that much alcohol and bud, my tolerance is probably pretty low. The doctor told me not to drink too much while I was on it and I did that, really cut loose on new year. I didn't get sick or anything like that, and I didn't really feel any different when I was getting messed up, just the next day or two my vision got a little disorganized but that may have just been from the smoking, just really over did it, hungover in general. I seem to be coming back to baseline though but I slept for like two days, probably fairly normal. So yeah I'm still doing good with it, I wouldn't quit it or anything like that, not really having any side effects. Another positive I've noticed on naltrexone is that my craving for things like food and cigarettes have decreased. I don't want to smoke as much which is cool because I want to quit this year and I'm not over eating. It's not that I don't have an appetite or anything I just don't over eat which was something I seem to do on other meds and I haven't gained weight, I've actually lost a couple of pounds since I've been on naltrexone. I don't think it's effecting my metabolism like SSRI's or antipsych's would. So there's another positive, at least for me because I was overweight. I read somewhere that naltrexone cut cravings for cigarettes but was only effective in helping females to quit smoking but I can tell a difference too. anything else, just let me know joe
robbie123 Posted January 7, 2011 Report Posted January 7, 2011 Update- stopped taking the naltrexone 25m just before christmas because i new i would be drinking on and off right through until about the 3rd jan and i didnt want to be drinking on any meds-so i started again last night 25m- mild hot and cold flushes nothing of concern and a huge increase in cevs (closed eye visuals) coming from the minds eye which also increased brain fog and that strange feeling like pressure behind eyes and definate increase in temporal lobe activity and a touch of insomnia the whole night, no significant increase in afterimage static or outward visuals- but this med is affecting hppd in the closed eye state and seems to be aggrevating the minds eye if you know what i mean- will carry on at 25m for a while . cheers robbie
LarryC Posted January 9, 2011 Report Posted January 9, 2011 What s considered a low dose? What dose has been effective for pain for those who have taken it for fibromyalgia and other pain?
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