Repair for Central Nervous System Damaged from Polypharmacy?
July 1, 2011 12:56 PM   Subscribe

Who can I talk to/where can I go to find an expert in polypharmacy, particularly with an eye to repairing damage to the central nervous system?

I posted last month about having taken, suddenly, a number of medications for sleep over a short period of time. The list is long, and there's some overlap where there was a benzodiazepine and a sleep aid the same night. Poor judgment, being in a couple of different places with different doctors, and not listening to my intuition about side effects, resulted in me taking a number of meds that work on the central nervous system over the last two months. I am a person who has never used recreational drugs-- unfortunately, or I would have been more in tune with my body's response.

I've talked to two neurologists who think my symptoms are psychological rather than physical. I pass the base-level neurology tests with flying colors (they ask you to name as many animals as you can in a minute). I'm 33, and I've functioned at a very high level as a writer for ten years, and what I know is extreme impairment is not that evident to the doctors. The psychiatrists who prescribed the meds want to prescribe additional meds. I'm experiencing a number of really significant symptoms: anterograde amnesia, cognitive slowing/changes, flat affect (in comparison with my former really vibrant personality), failure of the sleep mechanism of my brain (I don't sleep at all). While these sound like depression symptoms, I've been depressed before, and it ain't nothing like this. My gut tells me I suffered an accidental overdose from the combined effect of medications that act on the central nervous system-- not enough to be fatal, but enough to injure my brain.

At this point I'm willing to do just about anything, go anywhere, to talk to someone who understands that there may have been some real injury and damage, and have some idea about what to do about it. I'm thinking research institution, polypharmacy scientist, neuro-rehabilitation center, etc. etc.

Who/where would you recommend? Assuming for a moment that there is some injury, who would a) acknowledge that possibility and b) know about treatment?
posted by anonymous to Health & Fitness (29 answers total) 4 users marked this as a favorite
Where are you?
posted by By The Grace of God at 1:07 PM on July 1, 2011

I remember your previous question. did not suffer an accidental overdose. You are not brain-damaged. I'm not sure why you're not believing two neurologists on this. Unless you took massive quantities for recreational purposes, and even then... Yeah, this just didn't work like you think it did. A benzodiazepine and a sleeping pill on the same night is not "polypharmacy."

It sounds like you are experiencing a great deal of anxiety about having taken pills and want to be treated for this anxiety (and also for what sounds like a bit of paranoia starting to creep in and settle down for a visit). You are describing psychological symptoms. These symptoms are treatable. Imaginary overdose symptoms are not. If you don't want the psychiatrists you originally saw to treat you now, if you don't want more medication, find a therapist not licensed to prescribe, and work with him or her to sort out the anxiety and related difficulties.

The answer to 'who would acknowledge this possibility,' that you are permanently damaged from a pretty small amount of sleeping pills/tranquilizers, is: quacks. (With the "I'm willing to do just about anything, go anywhere" stuff I want you to be careful of that, and steer clear of the weirder sorts of pseudo-medical whatnot.) In this sort of mini-breakdown you may be vulnerable to all sorts of quackery and cultish crazy, so be careful.
posted by kmennie at 1:22 PM on July 1, 2011 [13 favorites]

From the OP:
Wisconsin currently, but willing to go anywhere.
posted by jessamyn at 1:29 PM on July 1, 2011

I think if you were able to get some proper sleep, a lot of the other problems would go away. Can you approach the problem (with your GP or whoever) as a lack of sleep problem, and see if you can resolve that?
posted by Riverine at 1:46 PM on July 1, 2011 [3 favorites]

You have evidence from two neurologists that you in fact do not have a damaged CNS, so it would be in your best interest to stop focusing on finding someone who will tell you that yes, you are physically injured. That persistent thought is keeping you from being able to focus on the tangible problems of not being able to sleep and depression. Look and see if you can talk to a (non-psychiatrist) therapist or clinical psychologist.
Cognitive impairment SUCKS, and I'm sure it's much more noticeable to you than to others, but psychological distress can be a very real cause of it. i.e., you don't need to have been brain damaged to have the symptoms you're having. Best of luck to you in finding that therapist.
posted by eldiem at 1:59 PM on July 1, 2011

Anon, send me a MeMail or ask the mods to post throwaway email for you.

My advice, from experience, is that you need to be a scientist about this. This means, for the time being, setting aside what your gut tells you (this is not implying any craziness on your part, but gut feelings are not science -- especially when the thing being investigated is your own brain).

Do not throw away any hypothesis that have not been tested yet. Prolonged sleep deprivation can feel like your brain is broken. Certain types of affective disorders can feel like your brain is broken (don't disregard this very large umbrella of disorders just because you experienced a particular type of depression at another point).

Step 1. Find a neurologist you trust. If they cannot find evidence of any damage, then you may have to accept one of two things -- that no damage exists or that science is not able at this point to detect the damage. If this happens, be grateful, because actual brain damage is not something that is very treatable.

Step 2. Mitigate the symptoms that you have. This would most likely involve a psychiatrist and a therapist (again, this is not implying craziness on your part, but this is how you approach brain problems that can't be addressed organically -- and we ruled that out in step 1.) Allow these doctors to be wrong. If they say "I think it's X, let's try Y" and you don't think they're right, say "It doesn't feel like that, but I'll give it a trial and see what happens." These are hypotheses to be tested.

From your post, you clearly have a science-inclined mind. Don't forget to use the scientific method.
posted by the jam at 2:04 PM on July 1, 2011 [1 favorite]

I have done what you did--taken a benzo and a sleeping pill on the same day. I have also (accidentally) taken a benzo and, several hours later, had a few drinks. I suffered no symptoms at all, so either your brain is incredibly fragile or this is, in fact, psychological.
posted by liketitanic at 2:25 PM on July 1, 2011

Oh, you're still not sleeping? THAT is the problem.
posted by liketitanic at 2:28 PM on July 1, 2011 [1 favorite]

From the OP:
Re: polypharmacy: I'm concerned because I took some medications as prescribed (Ativan 2 weeks, Lunesta 2 weeks, Klonopin 2 weeks) and also some *not as prescribed* but ok'd by a doctor in the family, including:
Ativan+ Silenor
Ativan+ Rozerem
Ativan+ Trazadone

After this awful cocktail, I tried weaning off everything, and then didn't sleep for 4 days. Then took Lunesta. Then cut Lunesta in half in an effort to wean off, after the pharmacist said cutting was ok (turns out the capsule is not supposed to be cut).

The cognitive effects are actually pretty significant; friends and colleagues are extremely concerned that my personality/conversation are changed, my memory is shot, and I had to take a job leave.

The sleeping thing: my brain actually simply does not shift into "sleep mode." No amount of relaxation/meditation/exercise changes it. It's as though the sleep mechanism is injured.

The jam: I'll memail you. thanks.
posted by restless_nomad at 2:40 PM on July 1, 2011

Sleep will do this. Stress will do this. Lack of sleep all by itself causes stress. Just to add to the stress of it all, stress can cause long term brain changes.
posted by small_ruminant at 2:40 PM on July 1, 2011

Do you have anxiety or anxious tendencies? I'm not trying to discredit your concerns, but when my own anxious thoughts are not in check, I have trouble sleeping as well. It often results in poor focus/memory. I often feel like my brain is failing and attribute it to all kinds of catastrophic things like brain tumors or early onset dementia, neither of which are things I have. But both being things I fear, thinking about them dials my anxiety up even higher causing a not so great cycle of general badness. When I was about twenty I actually went to the ER because of the racing pulse/dizzy feeling that I did not recognize as the physical manifestation of anxiety. I thought I was having a heart attack! After some protest that I should probably get a second opinion because I didn't want to die and that the doctors weren't taking me seriously because I was a woman, I realized that I didn't have much choice but to go home. At this point, I figured I was probably going to die, but was pretty resigned about it. Went to bed and the next morning I woke up and I was...fine. I decided it must have been low blood-sugar or something. A lot of really bad stuff was going on in my life at the time (death of a friend, hospitalization of a parent, relationship trouble). And I went on being ok while I was calm, but when I'd start dealing with or thinking about the really bad stuff it would start back up again. Now that I was looking for it, the connection was easier to see.

As I've gotten older and gotten somewhat better at understanding my anxiety, the only physical manifestation I really get is some moderate insomnia when I'm having a bad patch. However, if I don't nip that pattern in the bud, it gets much worse. For me it goes several sleepless nights=impaired cognitive function=more sleepless nights worrying that I am dying=more anxiety=worse physical condition overall=more anxiety! Once you get stuck in that loop, you feel bad most of the time. Because of that, I'm not above cheats. Have a glass of wine and some melatonin. Maybe do a little sexing if you have a partner. (or if not!) Yeah, it's not exactly you beating your body's fucked up sleep cycle fair and square, but it's still you beating your body's fucked up sleep schedule. I personally find if I let myself go for a long time on a bad sleep schedule, it's much harder to break out of than when I pull some strings on day two or three. Also, do you feel cognitively impaired when you're not thinking about how cognitively impaired you are? Like when you're just doing something and actually having fun? As the jam stated, look at it critically and objectively. Back when I thought my own physical manifestation of anxiety was instead my certain impending death, I was thinking about it all the time. The first hint that it might be related to stress was when I realized that when I was really happy (gardening, volunteering, spending time with good friends) none of it was present. Simply put, I wasn't constantly feeling bad when I wasn't constantly thinking about feeling bad. This won't work if you can't stop self monitor though. (OK, I'm out to dinner, I shouldn't feel all cloudy. Do I feel all cloudy? Yes. Yes I do. Fuck, I'm dying.) I never felt worse than when I was lying in bed at night thinking about it.

I guess what I'm saying is that if doctors can't find a plausible reason for cognitive problems OTHER than sleep deprivation, maybe consider the sleep deprivation. It can absolutely make you into a slow-witted zombie. Perhaps consider seeing a sleep specialist to look for underlying physical causes for your insomnia. And another small word on anxiety? It's anxiety, of course you'll think the drugs are destroying you. You have to find something. No drugs? It's probably cancer. Or your terrible personality. It's always something, so be careful when trusting too many negative "gut feelings".
posted by troublewithwolves at 2:50 PM on July 1, 2011 [4 favorites]

The cognitive effects are actually pretty significant; friends and colleagues are extremely concerned that my personality/conversation are changed, my memory is shot, and I had to take a job leave.

Speaking as someone with a sleep disorder, this is from lack of sleep. Lack of sleep will first make you think you're crazy, then actually make you crazy.

What have the doctors said about the actual obvious sleep impairment?

After this awful cocktail

Perhaps laying off the drama when speaking about these issues would be helpful, many people take combinations of benzos/sleeping aids/antidepressants/what have you and do not have damaged central nervous systems.

I totally get that you're strung out right now, and all you want to do is make it better. I've been at least somewhere near there. There were times I slept a few hours a week and I seriously wanted to die, because then at least I could rest. BUT ignoring the advice of what seems like all of the many medical professionals you have seen on this topic because you have it in your head that you have damaged your brain with an ativan and a lunesta combo is not going so well for you.

If you want to search far and wide for a doctor to help, find a doctor that will figure out what kind of sleep disorder you have and how to appropriately treat it. This will most likely involve drugs. They probably won't damage your CNS either. Best wishes.
posted by crankylex at 2:56 PM on July 1, 2011 [5 favorites]

Lack of sleep and stress will absolutely affect you cognitively. I felt brain damaged for months after the bar exam - messing up basic grammar, like tenses and pronouns!
posted by yarly at 2:59 PM on July 1, 2011

So you took two benzos (Ativan, Klonopin) for two weeks each and a benzo friend (Lunesta) for another two weeks. So that's total of six weeks on a benzo or related drug, then weaned for some period you didn't tell us, then didn't sleep at all.

Taking those meds for six weeks and stopping rather suddenly could potentially leave you with insomnia because you're effectively in withdrawal. Your brain is saying, "Hey, where did that stuff that fit my benzo receptor go? Now that I know about it, I don't want to sleep without it."

You're probably not going to like the sound of this, but you might have more success getting some sleep if you go back on one of those benzos (Klonopin is the longest-acting one of that group; Valium is even longer-acting) and doing a longer taper, maybe even a water or milk titration taper. Going back on the dreaded drug might get you sleeping again, and withdrawing more slowly might keep you there.

I am atypical, but after being on Klonopin for six weeks, I had to do a six-month taper to get off of it.

If simply going back on the Klonopin doesn't fix your sleep, and you genuinely cannot sleep without medication, a multi-drug sleep cocktail is not the worst thing in the world. Here's mine.

And yes, not sleeping can do all those awful things you've listed above.
posted by jocelmeow at 3:01 PM on July 1, 2011

"Polypharmacy" doesn't mean...well, I don't know what you think it means. (Definitions here) Those are not "awful cocktails."

You have a sleeping disorder, and it is making you nuts. I speak from considerable sleep disorder experience. You need to abandon the fantasies of "polypharmacy" and "central nervous system damage," accept that you are experiencing psychological side effects from the sleep deprivation, and get help for the sleep deprivation before you end up with more crazy.

Once I had a week where I slept only three or four hours in the middle of the week. It was horrible, absolutely horrible. I went to the hospital and explained that I was starting to fixate on weird stuff (mostly, why did my coffee can say "EXPRESSO" on one side and "ESPRESSO" on the other? One side was French and one was English but how did they translate with the X/S difference and how did language etc etc; I was pretty deeply concerned about this coffee spelling issue), and, help, and they sent me home with a mittful of pills, three different kinds, enough for two nights, and I went home, and took them, and then took the next day's, and felt utterly normal. But I did not sleep; it was just enough to tranquilise the edge off, not enough to knock me out...

This can happen. Lots of people end up with little phases of sleep disturbance where -- well, "my brain actually simply does not shift into "sleep mode." No amount of relaxation/meditation/exercise changes it. It's as though the sleep mechanism is injured" sums it up. It does not mean that your brain is permanently altered, though; that is not what is going on here, and ignoring two neurologists on that is, well, crazy.

I realise that must seem like a lot of pills to somebody who has never taken pills or recreational drugs, but, really, it is not a lot of pills, and you are sounding naive, and insulting no end of psychiatric patients, who have taken much more than that and do not have "brain damage."

It is not at all clear why you went off the medication when you were still having trouble sleeping, and not at all clear why you don't go back on it. I am worried, given the 'saw two neurologists, want a third' rejection of science, the extreme paranoia about a rather small amount of pills, the apparent inability to request and follow appropriate medical help, that you are in a bit of a manic mode from the sleep deprivation. Dealing with the sleep deprivation should absolutely be the priority; I'm not sure what pills you think will be safe or how you can get yourself to a position where you're able to trust doctors, but, there are not other good answers here.

Let's fantasize for a moment that you do not have a sleeping disorder, do not require sleeping pills, but did in fact break your brain with drugs, and you have broken the "sleep mechanism" in your brain. What sort of treatments do you think might exist for that? You would be...sent to a psychiatrist/sleep medicine specialist, and prescribed...sleeping pills.

The only other thing I have to add, and I am sort of loathe to mention it to somebody in such a fragile state, is that sometimes a night on the piss can re-set things. If you are a drinking fellow, hit the pubs, drink heartily, stumble into bed and sleep, and stay in bed with your hangover the next day, just enjoying the mental clarity from the full night's rest. Sometimes that can be enough of a backwash of the filter, so to speak, that you will find your tension has lifted, and you are able to start sleeping normally again, after that one night of drunken slumber. But this is not guaranteed and not without risks.
posted by kmennie at 3:31 PM on July 1, 2011 [9 favorites]

Agreeing with kmennie. If you have fewer hang-ups with alcohol, let yourself get nice and toasty until sleep isn't a problem. That's the more honest version of what I meant by "a glass of wine". Sometimes it takes a bottle, but it's worth the "reset" effect!
posted by troublewithwolves at 3:37 PM on July 1, 2011

I had more, and more vivid, hallucinations and disordered thinking when I was severely sleep-deprived than I ever did when tripping my face off on LSD or mushrooms. Nthing the rec to look at (lack of) sleep as the priority.
posted by rtha at 4:02 PM on July 1, 2011 [1 favorite]

What is your stimulant intake like? Knock them all off and see what happens.
posted by gjc at 6:07 PM on July 1, 2011

Nthing lack of sleep. Can you see a sleep specialist. To me (and who am I but a crazy netizen) that seems like a logical next step.
posted by kathrynm at 4:11 AM on July 2, 2011

From the OP:
Thanks, all. I hear what everyone is saying. And I am certain that sleep deprivation is a big part of it-- because, to a milder extent, I experienced these some of these symptoms before the two-month drug blitz-- that's why I was desperate enough to try medication. I'm a very slight person, who was given pretty high doses. Also, spoke with a doc yesterday who said the combinations weren't a real concern unless they were taken, for example, within the same hour. Which they were.

Now, the symptoms are much more severe, and more far-ranging, including diminishment of lots of things consistent with the frontal lobe (which is apparently what thorazine acts on, though thank God I never took that): empathy, self-insight, creativity, initiative, autonomy, abstract reasoning, planning, foresight, will-power, determination and concentration. These are shot. Really. And I'm terrified.
There's also the perseveration (another symptom of injury.)

Two months ago, I was someone who was really, really high in all these areas. The bind I'm in now is that I don't sleep at all w/o taking anything (whereas before the meds I was sleeping 4 hrs. a nigh), and they also make me feel more dulled-out. If my symptoms are med side effects or sleep deprivation side effects, they should go away after sleeping. But they don't.

So, a last plea for some direction in terms of repair and recovery of nervous system injury. I hope to God you're all right that there isn't damage, but if there is, I'd like to be able to take humble baby steps toward recovery.

Thank you all again.
posted by jessamyn at 8:35 AM on July 2, 2011

For God's sake, you don't have a nervous system injury - you have the opinion of two neurologists on that, and there's just not really a plausible mechanism for that happening on the regimen you're talking about. Everything you're talking about is completely consistent with extreme sleep deprivation, which at the sleep deficit you're running I would not expect to dissipate after one night's sleep. You need to stop catastrophizing about this because it's only contributing to your insomnia. While I think the recommendation of therapy is seriously overused here, you do in fact sound like you would really benefit from CBT.
posted by strangely stunted trees at 9:12 AM on July 2, 2011 [1 favorite]

If my symptoms are med side effects or sleep deprivation side effects, they should go away after sleeping. But they don't.

Not necessarily, no, they shouldn't. If you're running on very few hours' sleep in any 24-30 hour period, consistently, then your symptoms may dissipate a bit if you get, say, a solid 6 hours of sleep - but they will return in their full glory when you don't get much or any sleep the next few nights. And even if you're sleeping (with or without drugs) four hours a night for several nights in a row, that's still not enough for the vast majority of people, and you *will* experience cognitive decificts. Anxiety will add to this.

In your OP and your updates, you haven't addressed whether you've been to a sleep clinic. You've seen this doc and that doc and gotten this test and that one, all of which have told you that your problems are not drug-related, but you don't seem to have taken the obvious step of seeing a doctor who specializes in sleep disorders, or signed on for a spot in a sleep clinic, at least not recently. Have you done that? If not, why not?
posted by rtha at 9:36 AM on July 2, 2011

I hope to God you're all right that there isn't damage

Don't listen to us on that one. Listen to the neurologists. Two neurologists. There isn't anything to be repaired here.

Doctors are generally going to be pretty cautious about drugs, but it doesn't mean that you were for-real dabbling in "pretty high doses" or on a "drug blitz." You might want to spend some time perusing forums/sites where people talk about taking drugs. "Crazymeds" and "Erowid" come to mind. +1 "laying off the drama when speaking about these issues would be helpful."

It's not clear why you're not interested in the advice to see a sleep specialist, or why you don't believe the two neurologists. My guess is that you are now crazy enough from sleep deprivation that you're dealing with too much paranoia to be able to be rational and listen to the neurologists (or the advice you're getting here). This is analogous to "I fell and my leg hurts, but the doctors told me my leg isn't broken. Nevertheless, I'm hoping Ask can set me up with a cast." It's also not clear what sort of "recovery" methods you think might exist for drug-induced brain "injury"?

"If my symptoms are med side effects or sleep deprivation side effects, they should go away after sleeping. But they don't."

As has been pointed out, all of your symptoms are common psychiatric ones. And it doesn't sound as though you have had any extended period of sound sleep, night after night. We can't diagnose what brought you to the insomnia crisis, but it's pretty likely that there was some stress, anxiety, depression, something going on that brought that about, and there's no reason to think it's gone away. If you are saying that even after a week's worth (say) of regular sleep (with or without medication) you are still feeling very out of sorts, I don't think there's any reason to delay seeking psychological help. You are clearly experiencing a personal crisis.

Try to keep in mind that even if you had experienced brain damage you would still require psychological help at this juncture. You seem to be in contact with a lot of physicians -- what are they telling you?

Do you have friends who can help guide you through the medical system? A GP who can steer this treatment for you a bit? Given how much you are listening to the advice here (that is, not at all) I'm wondering how many of the physicians you are visiting are telling you what we are (that is, things that do not fit the brain-injury fantasy), and what their advice has been, and if it has been dismissed, or...? If you have a GP you trust, ask him to help guide you towards a sleep specialist/psychiatrist/both; if you do not, do you have a friend who could be tasked with making the appropriate phone calls to find you ditto? It seems you are so bogged down in the idea that you might fly off to a "research institution, polypharmacy scientist, neuro-rehabilitation center" that you are ignoring the real and more urgent needs here.
posted by kmennie at 9:46 AM on July 2, 2011 [1 favorite]

A great forum that regularly fields questions like this and has a number of very knowledgeable and experienced posters is the neuroscience section of
posted by blargerz at 10:47 AM on July 2, 2011

From the OP:
Yes, I have been to a sleep clinic. It was actually the first place I went when I was having trouble, and he said, "It doesn't seem that severe; try keeping a sleep diary." I hadn't conveyed the seriousness well enough. Later that week I saw a shrink, who gave me Ativan, which made me extremely anxious and freaked-out, but while on the drug, I didn't realize that it was the medication that was causing this reaction. The bad med decisions afterwards were while I was taking Ativan.

Went back to the sleep study some week later, and they tested my sleep while taking Lunesta. (I *did* sleep while taking Lunesta, but also felt *extremely* depressed and cognitively impaired.) The report said my sleep was "mildly disturbed"-- I woke up 114 times in the night, once for 25 mins. I only had one delta phase (slow-wave sleep) and my REM was all over the place. The doc who gave me the report said, "see a shrink."

I am seeing a shrink, who suggests depression is the root here, and he has given me meds, which I am trying. I slept ok two nights ago, but not at all last night. He said he "hoped there wasn't damage" but wasn't sure what to do about it if there were. I saw a counselor who assured me that the brain eventually recovers, even from high doses of drugs, but it can take a long time, and requires sleep-- which allows the brain to heal. Because I can't sleep w/o a med that disrupts natural sleep rhythms (slow wave sleep), it seems like I'm in a real bind.

The neurologist did basic neuro testing and concluded that there were no neurological disorders (i.e. Parkinson's).

The last doc I spoke with said that it was concerning to take two meds within an hour of each other (which I did for five nights), but he wasn't sure about the effects.

Re: extent of impairment. I'm talking extreme. I can speak about the topic of my situation, but I can't generate other ideas, and my personality is totally altered. I looked up drug side effects, and found that what most closely matches my experience is the effects of thorazine (see above). No insight, motivation, creativity, personality. Because I can't talk about this issue, the docs I've seen have trouble understanding the extend of the impairment. Can't do easy Sudoku, which was a snap. Can't remember conversations I've had.

Yes, friends have helped significantly over the last two months, and I am now with my family.

Yes, I'm sure sleep is a big part, but in insomnia (as I've experienced before this clusterf*), even depression-related insomnia, the body does crash and sleep eventually, and mine is not doing that. It's more like what jocelmeow describes.

I wonder, jocelmeow, do you feel rested/cognitively normal after your sleep cocktail?

Yes, psych issues I'm sure are what led to the initial insomnia. yes, sleeplessness is causing a host of other issues. And yes, there are still lingering doubts that bad decision-making and seeing multiple doctors resulted in some nasty combo.

It seems like there could be a non-zero possibility that on the spectrum of *no* problem from medication and, in the case of Heath Ledger, a toxic overdose, there could be damage. The Lunesta, for example, was not supposed to be cut, and I've read that switching drugs quickly can also do damage.

Crisis: yes. I actually don't know if I'm going to be able to go resume normal life. I hear what everyone is saying, I really do. And I appreciate your time and concern... And I'm giving the shrink route a try. I also have deep and lingering concerns that the part of me that is responsible for "what makes a reason human" is just shot. I realize this sounds overly dramatic, but my friends who who have known me for years and years are extremely alarmed at the drug combos and alarmed at the state I'm in now. Which is why I still want to, while addressing the other concerns, find someone who might be able to shed light on the third possibility, beyond just sleep debt and psychology.
posted by restless_nomad at 11:00 AM on July 2, 2011

Then I am really sorry, but I am not sure you will get the answers you are looking for here. You sound like you're in the midst of, or verging on, a total psychological breakdown, but it is not because you have damaged your central nervous system. It is because you are extremely sleep-deprived and can't accept rational explanations. Your distress is clear and I am so sorry. But I don't think you will get the answers you want.
posted by liketitanic at 12:20 PM on July 2, 2011 [4 favorites]

Whether or not you have CNS damage is not an important question to answer, because it does not change the action you need to take. If you did indeed have CNS damage, there would be nothing your doctors could do to directly fix the damage.

Worrying that there is something wrong is not serving any functional purpose right now: it is not helping you get better. Actually, focusing so much on your symptoms (e.g., seeking out multiple opinions, Googling symptoms on the internet) could be causing them or making them worse. If I sit here and say to myself, "I think there's something wrong with my leg," it WILL start to feel strange. If I am forgetting things chronically and say to myself, "my memory is seriously impaired," I will be unable to remember things that I could otherwise remember. The thing is, people will dismiss this as being "all in your head," but pain, sleep, memory, personality, etc. are all in your head to begin with. Here I emphasize: your experience of your symptoms is valid, regardless of whether they have an organic cause.

All you can do now, given that you do not and cannot know whether there is damage and if there is, what it is like, is focus on caring for yourself (by addressing the sleep issue, balancing your eating, making sure you're staying active, doing things that give you a sense of mastery and control) and addressing your anxiety (through therapy and probably medication). If there is damage, this will likely help mitigate the symptoms you are experiencing. If there is not, this will likely help mitigate the symptoms you are experiencing. It's win-win.
posted by quiet coyote at 12:42 PM on July 2, 2011

a last plea for some direction in terms of repair and recovery of nervous system injury.

As a person with MS I can assure you that current medical science does not provide a way to repair damage to the central nervous system. To quote Wikipedia on the subject:
While the peripheral nervous system has an intrinsic ability for repair and regeneration, the central nervous system is, for the most part, incapable of self-repair and regeneration. There is currently no treatment for recovering human nerve function after injury to the central nervous system.[4] In addition, multiple attempts at nerve re-growth across the PNS-CNS transition have not been successful.[4] There is simply not enough knowledge about regeneration in the central nervous system.
Since repair is out of the question, that leaves recovery. Perhaps you could find some leads through The Brain Injury Association of America.

Alternatively, you could go with the hypothesis that you are experiencing side-effects of your sleep disorder. Is it possible to get in-patient treatment for your inability to sleep? Given the extremity of your situation, that might be worthwhile.
posted by alms at 4:19 PM on July 2, 2011 [1 favorite]

OP, I do feel rested after sleeping through taking my half-dozen drugs. I feel I sleep better now that I'm on a combination of things than when I was taking one at a time. And I am quite small myself - 111 lbs. As for the cognitive issues, there is some decline associated with my illness, but I feel quite alert when I wake up in the morning. Maybe a touch foggy in the first hour if I've taken the second round of pills a bit late. It takes two rounds of pills to get me through the night - I take the second bunch between 3:45 and 5:30 a.m. and wake up between 9 and 10 a.m.

What happened to you with the Ativan - feeling anxious, instead of feeling relaxed, as it makes most people feel - is a paradoxical reaction. I do still think that if you came off the six weeks of benzos/Lunesta suddenly, that part of what you're experiencing that feels like something is wrong with your brain could be being in benzo withdrawal, in addition to the effects of sleep deprivation. I can't say that for sure, of course. Here is a comprehensive benzo withdrawal symptom list (it is a sort of scary list for its hugeness, I'll admit - most people will not get anywhere near all of those) and here is a support website I used when withdrawing from Klonopin. See if any of that seems like it fits what's going on with you, and if so, talk to your doctor about managing it.

Please don't be afraid to work with a doctor to find meds that will help alleviate the insomnia. If the Ativan made you feel anxious, tell your doctor that. There are plenty of things to try that are not part of that family. (The things listed in those two tables in my blog entry that I linked are possibilities your doctor may mention.) But find something that will help you sleep. You need to sleep. I was terrified to start taking pills when my insomnia first started - I hadn't taken medicine for anything for years. But I've found a set of things that work quite well and that I tolerate without issues. You can do the same - and it's entirely possible that once you get into a pattern of sleeping again, you'll slowly be able to discontinue the drugs.
posted by jocelmeow at 5:04 PM on July 2, 2011

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