E
emma333
Guest
Hello Bluelighters...
Im really not sure where this post belongs, but I really need some advice here. It feels like Im pretty much out of options. My situation:
A number of years ago I had a tetanus vaccination (DTP specifically, I think) before a business trip overseas. The evening/night after having the vaccination, I remember feeling very hot, sweaty, mentally very weird, and I went thru the whole night without sleep (the day before everything was completely normal, this all happened suddenly). The following day I left for the trip overseas, and I still had some of those same symptoms, a lot of trouble sleeping, but generally less so than that first night.
Fast forward a couple of months, and I am still not sleeping, feeling very weird mentally, very 'wired', cant relax, very agitated (though not "anxious", it is more of a physical feeling). I was having a lot of trouble with work. Soon after I had to quit my job, I simply couldnt work, but thankfully I am supported financially. I have a very supportive family and close network of friends. I feel it is important to point out that these symptoms never varied (other than a general slow decline), while at work, after quitting, or at any other time.
Seen various doctors, had tests done, all they had to offer was CFS or depression, and I proceeded with the treatments that they recommended for each of those, with no help. I started CBT and I am still continuing with that, and while I can see the value in it for some people, it hasnt helped me. I have seen two psychiatrists and neither would commit to any diagnosis or any suggestion of what this is. I have no problem with weakness, pain or fatigue (other than fatigue from poor sleep), and I have no unusual post-exertion symptoms, so that rules out CFS. I wasnt sure what to think at the time, but it is very clear to me now that this is neither CFS nor depression, and my doctor now agrees with me on that.
So a year later and things are getting very bad. Mentally I feel like I an in a moderate benzo withdrawal 24/7 based on what I have read about what that experience is like. I am very uncomfortable physically. My breathing is horrible, I seem to always be hyperventilating, even when not actively focusing on my breathing. My heart rate feels like it is bounding, like it is very strong. I feel extremely wired and agitated, I cant stop thinking (not any specific thoughts, I just cant stop my mind going 1000mph), I am getting constant muscle twitches, and it is totally impossible to sleep without pharmacological help (I have been using trazodone and promethazine, but that doesnt do the trick any more, so now its quetiapine). Essentially I am just doing what ever I can to get through the day, and keeping up with regular tests with the doctor (nothing majorly unusual has showed up, the EEG was abnormal but "nonspecific", not much help there). A number of other tests have been abnormal but nothing has pointed to anything useful.
Like I said before, these symptoms never varied whatsoever (other than the decline over months). I started a fairly rigorous exercise program, walking at least 5 miles almost every single day for a number of months. Before and after those months I had been trying to rest as much as possible, and getting very little exercise. Even with that difference in activity level, there was ZERO variation in my symptoms. There was a period where my doctor sent me to a hospital in another city for a few weeks to have some more tests done, MRI, CT, endocrinology tests etc (I am in a fairly remote location). For these few weeks I was in a completely new environment, totally away from family and friends, and yet again, there was ZERO variation in my symptoms. I made some attempts at starting work again, pacing myself, but not getting anywhere, and I made efforts to socialize (within my limits imposed by this problem) and contrasting that to periods of very little social contact, again, no variation in my symptoms.
At this point I have no doubt whatsoever that this problem is neurological/physiological and not psychological, though I am open-minded to any ideas that I've not yet tried.
I have tried antidepressants of each of the major classes, a few antipsychotics, a few antiepiletpics/mood stabilizers, some of the non-benzo anxiolytics, muscle relaxants, beta blockers, calcium-channel blockers and other heart medications, and many others Im probably forgetting, and none have done anything at all (other than some helping me get to sleep). There have also been a bunch of suggested CFS treatments, supplements etc, but unsurprisingly none of that has done anything.
The only drug that has had any effect are benzodiazepines. I tried a short-acting benzo as a one-off a few times and there was a DRAMATIC difference. Almost all of my symptoms were completely gone during the effect of the drug. I avoided going onto a benzo full-time because of the inevitable tolerance problems. I tried gabapentin, and that also had a fairly dramatic effect, but tolerance set in ridiculously quickly. I am not a drinker BTW.
Things have continued to deteriorate, all the same symptoms, but it really feels near-unbearable. A couple of months ago I started a regime of clonazepam plus an NMDA antagonist to try to prevent tolerance (all done in conjunction with my doctor, he has been very open to suggestions of medications). It helped a little to begin with, but at this point I feel worse than I did before I started it - basically I think the problem is just continuing to deteriorate anyway. The GABA drugs just arent helping anymore, regardless of dose. I dont think tolerance is playing a huge part in things since the general pattern of deterioration has continued as it did before I started these drugs.
I am now (with my doctor) trying a spray-and-pray approach with antimicrobials and the like. No help so far. Along with that I am continuing to have tests done but there arent a whole lot left that look possible to have done. My doctor doesnt really have any more ideas.
A significant chunk of my life has now passed since this began. I dont really even think about resuming a normal life and going back to work, even though I continue to try to test if I am capable of any of that. I just want to be able to sit down and relax, to switch off. Or to just lie down and get some proper sleep. I dont remember how that feels since this all began (other than those one-offs with the benzos). I remain rational and I try not to get bogged down in anxiety and hopelessness, but suicide is beginning to look like an option if things continue to get worse and there is nothing I can do to control the symptoms. I dont think emotion is playing a big part in this, I just genuinely cant see any other option if things really do get fully unbearable and uncontrollable, which based on the past few years, looks like a possibility. If I were to end it, I would make sure to give myself at least a couple of months to make sure that it is the right thing to do. I am not one to make decisions impulsively. I know that psychologists/psychiatrists will break confidentiality and are obligated to report any suspicion of suicide, so Im not sure who else there is to talk to about that side of things.
I guess I am just looking for any advice at all on what I should do. Everybody on this board seems very knowledgeable on pharmacology and perhaps neurological disease. I really dont know what to do other than to keep holding on as long as possible until I have no choice but to kill myself.
Im really not sure where this post belongs, but I really need some advice here. It feels like Im pretty much out of options. My situation:
A number of years ago I had a tetanus vaccination (DTP specifically, I think) before a business trip overseas. The evening/night after having the vaccination, I remember feeling very hot, sweaty, mentally very weird, and I went thru the whole night without sleep (the day before everything was completely normal, this all happened suddenly). The following day I left for the trip overseas, and I still had some of those same symptoms, a lot of trouble sleeping, but generally less so than that first night.
Fast forward a couple of months, and I am still not sleeping, feeling very weird mentally, very 'wired', cant relax, very agitated (though not "anxious", it is more of a physical feeling). I was having a lot of trouble with work. Soon after I had to quit my job, I simply couldnt work, but thankfully I am supported financially. I have a very supportive family and close network of friends. I feel it is important to point out that these symptoms never varied (other than a general slow decline), while at work, after quitting, or at any other time.
Seen various doctors, had tests done, all they had to offer was CFS or depression, and I proceeded with the treatments that they recommended for each of those, with no help. I started CBT and I am still continuing with that, and while I can see the value in it for some people, it hasnt helped me. I have seen two psychiatrists and neither would commit to any diagnosis or any suggestion of what this is. I have no problem with weakness, pain or fatigue (other than fatigue from poor sleep), and I have no unusual post-exertion symptoms, so that rules out CFS. I wasnt sure what to think at the time, but it is very clear to me now that this is neither CFS nor depression, and my doctor now agrees with me on that.
So a year later and things are getting very bad. Mentally I feel like I an in a moderate benzo withdrawal 24/7 based on what I have read about what that experience is like. I am very uncomfortable physically. My breathing is horrible, I seem to always be hyperventilating, even when not actively focusing on my breathing. My heart rate feels like it is bounding, like it is very strong. I feel extremely wired and agitated, I cant stop thinking (not any specific thoughts, I just cant stop my mind going 1000mph), I am getting constant muscle twitches, and it is totally impossible to sleep without pharmacological help (I have been using trazodone and promethazine, but that doesnt do the trick any more, so now its quetiapine). Essentially I am just doing what ever I can to get through the day, and keeping up with regular tests with the doctor (nothing majorly unusual has showed up, the EEG was abnormal but "nonspecific", not much help there). A number of other tests have been abnormal but nothing has pointed to anything useful.
Like I said before, these symptoms never varied whatsoever (other than the decline over months). I started a fairly rigorous exercise program, walking at least 5 miles almost every single day for a number of months. Before and after those months I had been trying to rest as much as possible, and getting very little exercise. Even with that difference in activity level, there was ZERO variation in my symptoms. There was a period where my doctor sent me to a hospital in another city for a few weeks to have some more tests done, MRI, CT, endocrinology tests etc (I am in a fairly remote location). For these few weeks I was in a completely new environment, totally away from family and friends, and yet again, there was ZERO variation in my symptoms. I made some attempts at starting work again, pacing myself, but not getting anywhere, and I made efforts to socialize (within my limits imposed by this problem) and contrasting that to periods of very little social contact, again, no variation in my symptoms.
At this point I have no doubt whatsoever that this problem is neurological/physiological and not psychological, though I am open-minded to any ideas that I've not yet tried.
I have tried antidepressants of each of the major classes, a few antipsychotics, a few antiepiletpics/mood stabilizers, some of the non-benzo anxiolytics, muscle relaxants, beta blockers, calcium-channel blockers and other heart medications, and many others Im probably forgetting, and none have done anything at all (other than some helping me get to sleep). There have also been a bunch of suggested CFS treatments, supplements etc, but unsurprisingly none of that has done anything.
The only drug that has had any effect are benzodiazepines. I tried a short-acting benzo as a one-off a few times and there was a DRAMATIC difference. Almost all of my symptoms were completely gone during the effect of the drug. I avoided going onto a benzo full-time because of the inevitable tolerance problems. I tried gabapentin, and that also had a fairly dramatic effect, but tolerance set in ridiculously quickly. I am not a drinker BTW.
Things have continued to deteriorate, all the same symptoms, but it really feels near-unbearable. A couple of months ago I started a regime of clonazepam plus an NMDA antagonist to try to prevent tolerance (all done in conjunction with my doctor, he has been very open to suggestions of medications). It helped a little to begin with, but at this point I feel worse than I did before I started it - basically I think the problem is just continuing to deteriorate anyway. The GABA drugs just arent helping anymore, regardless of dose. I dont think tolerance is playing a huge part in things since the general pattern of deterioration has continued as it did before I started these drugs.
I am now (with my doctor) trying a spray-and-pray approach with antimicrobials and the like. No help so far. Along with that I am continuing to have tests done but there arent a whole lot left that look possible to have done. My doctor doesnt really have any more ideas.
A significant chunk of my life has now passed since this began. I dont really even think about resuming a normal life and going back to work, even though I continue to try to test if I am capable of any of that. I just want to be able to sit down and relax, to switch off. Or to just lie down and get some proper sleep. I dont remember how that feels since this all began (other than those one-offs with the benzos). I remain rational and I try not to get bogged down in anxiety and hopelessness, but suicide is beginning to look like an option if things continue to get worse and there is nothing I can do to control the symptoms. I dont think emotion is playing a big part in this, I just genuinely cant see any other option if things really do get fully unbearable and uncontrollable, which based on the past few years, looks like a possibility. If I were to end it, I would make sure to give myself at least a couple of months to make sure that it is the right thing to do. I am not one to make decisions impulsively. I know that psychologists/psychiatrists will break confidentiality and are obligated to report any suspicion of suicide, so Im not sure who else there is to talk to about that side of things.
I guess I am just looking for any advice at all on what I should do. Everybody on this board seems very knowledgeable on pharmacology and perhaps neurological disease. I really dont know what to do other than to keep holding on as long as possible until I have no choice but to kill myself.
No benzo use at all until what I mentioned in my first post, where my doctor prescribed some temazepam (i think) for short term help with sleep. Never abused them, if anything Im a bit wimpy with dosages, never going above what the doctor recommends. All medications that Ive taken have been thru my doctor, and Ive always followed his instructions with the dosages.
