Running out of options, but don't know if I should go down this road
March 19, 2013 7:23 PM   Subscribe

What are your experiences with long-term benzodiazepine therapy?

I've suffered from fairly debilitating physical anxiety for several years now. I have to emphasize physical, with seemingly no mental trigger or component (ex. excessive rumination). It feels like moderate and constant akathesia, lasts all day and almost never ceases without drug intervention. It's like I'm crawling in my skin and never comfortable, even when I'm mentally calm.

I've been treated by at least six different doctors for this. I've tried talk therapy and CBT, but it's really ineffective for this type of physical discomfort when it has no identifiable mental trigger. It's like trying to talk away a broken leg. I tried a few different SSRIs. They were effective at eliminating the physical discomfort at high doses, but at those doses they also produced an unacceptable flat affectation in my personality. I could not be very sad, but neither could I really be happy or interested or even laugh. One of my doctors but me on wellbutrin for some reason, which cranked the discomfort up to 11 and drove me to the brink of insanity. I was then placed on a high dose of Buspar which actually did have some positive effect, but one like trying to put out a four alarm fire with a bucket of water. I had been prescribed various benzos for short term use until the SSRIs kicked in.

I recently got a new job and moved to a new city, and desperately needed to get this under control before it screwed up my job and my life in general. I really like my new psychiatrist. But when one of the first options he suggested was long-term benzo treatment I was a little surprised. I know many if not most doctors think benzos should be used for short term anxiety treatment (one month or less). He told me that while he acknowledges this school of thought, he doesn't see any problem with long term treatment if it provides effective relief with few side effects and is properly tapered if I decide to stop.

I know quite a bit about benzos, both through my own treatment with them and because I have worked in various healthcare fields. I know that it is probably the worst drug to withdraw from (tied with alcohol) and cold-turkey withdrawal can be deadly, so I'm not dumb enough to do that. But I've heard so many bad stories of how quickly tolerance grows, and how it can take years to slowly wean off of high doses, and how anxiety can be far worse afterwards even if tapered. I also worry about possible cognitive effects.

Yet benzos are the only thing that make my discomfort go away without killing a different part of me. I'm now taking clonazepam, due to it's moderately long length of action (short acting benzos like ativan and xanax don't cut it because my anxiety is constant and will invariably spark right up again three hours later). Even clonazepam doesn't last long enough so I need to take it twice a day. But I can finally wake up and go to work in the morning without feeling like shit.

I know there are beta-blockers, clonidine, MAOIs, and tricyclics as well. This post is too long already so I'll just say been there, done that for the most part and they're a no go for various reasons.
posted by anonymous to Health & Fitness (13 answers total) 6 users marked this as a favorite
Can you see another psychiatrist for a second opinion? I'd ask around for the best person your friends and physicians know and also be willing to pay cash for that visit.
posted by liketitanic at 7:48 PM on March 19, 2013

I've been on the same low dose of klonopin/clonazepam (.5 mg) for the better part of a decade with no tolerance buildup, but I take it only for sleep. I've also gone off it for long periods with no withdrawal. But this is a low dose for a specific problem, and I don't tend towards chemical addictions, so YMMV.

I'm sorry you're going through this and I hope you find relief soon.
posted by walla at 8:01 PM on March 19, 2013 [1 favorite]

I'm sure physical symptoms of anxiety on the level you describe could easily be caused by some treatable underlyng issue - like thyroid disease, or even a food allergy.

It sounds like you need a very thorough overall physical work-up to get to the heart of the matter. Even if you've tried before, it is time to do it again.

Don't treat the symptom. Find the cause and fix that.

The direction you are traveling would not be good enough for me. It's not normal to experience this level of anxiety, I would want to know the cause!!

I hope you find a doctor willing to put the effort in and work with you.
posted by jbenben at 8:04 PM on March 19, 2013 [3 favorites]

With all due respect to what jbenben wrote, the "cause" could be a genetic problem in your neural circuitry. My top guess is that it's dopaminergic since the skin crawling sensation you describe is very similar to what people experience when they withdraw from opiates, and because you had a strong reaction to Wellbutrin (which is dopaminergic).

Yes, benzos can be ridiculously hard to taper off of. Depends on the dose and person. I would definitely go there only as a very last resort; certainly get a second opinion. Also, benzos are GABAergic, not dopaminergic. They probably work because they have a calming effect on the whole nervous system. However there might be some other drug that helps you more directly.

I'm no doctor (well, not that kind, I'm a scientist) but if you're looking for something that can be used in the long term, I wonder how you'd do on a very low dose of suboxone, like .25 mg. If your problem is dopaminergic, it might help, and it's something people can take for years. It also has an excruciatingly bad taper, but there is plenty of evidence of long term use without much tolerance buildup. Suboxone is very long acting. This would be off label use because it's typically used to treat addiction. However it might be worth a try.

Second, I wonder if drugs for restless legs syndrome might help you. It sounds like you have been taking antidepressants and antipsychotics. Those might be the wrong family of drugs. Before going onto benzos, I might consider trying a bunch of drugs that are normally used for RLS. You can look those up, but typically they are in the class of drugs to treat parkinson's, to treat epilepsy, or RLS-specific medicines. This is because your problem really sounds peripheral - limbs, skin - rather than a generalized mental anxiety.

Lastly, high doses of magnesium might help. Magnesium has a calming effect on the muscles as the balance of calcium and magnesium affects excitability in your periphery. More magnesium = more calm. You clearly have some functional problem. If it's in those peripheral pathways, then magnesium might shift things more favorably. If it doesn't completely eliminate your problem, it might reduce the amount of other drugs you need.

Same with stuff like yoga. I imagine it wouldn't totally clear up your problem, but I'd be surprised if a daily yoga practice didn't reduce the amount of benzos you need to take for the same effect.

Sorry you're going through this, it sounds rather annoying.
posted by htid at 8:58 PM on March 19, 2013 [7 favorites]

Were all six of your doctors psychiatrists? Have you tried going to a specialist (like an endocrinologist) and describing the symptoms without using the word 'anxiety'?

The fact that your anxiety behaves in such an uncommon (well, uncommon in my limited experience with anxiety issues) way and sparks back up as soon as short acting drugs wear off rings alarm bells for me. Plus, you have zero anxious thoughts? I mean, I've known people who would start off with the physical symptoms, but would immediately develop anxious thoughts about what might be causing those symptoms. Yours just doesn't sound (again, to my completely-random-stranger-from-the-internet ears) like a psychiatric problem.
posted by Brody's chum at 9:00 PM on March 19, 2013 [1 favorite]

You might have already tried this and it doesn't really answer your question, but I know a few people(myself included) that have done very well managing their anxiety disorders without meds by way of intense physical exercise. Like, 4-5-6 times a week, 60-90 minute sessions of cardio or hot yoga. It's worth a try anyways.
Also, a hot chamomile infusion works great when you are having general anxiety and are between doses.
posted by tenaciousmoon at 9:09 PM on March 19, 2013

Another anecdote on long term benzo use, again for sleep. It can be just fine. I have gone up since I started in 2005 but that is from 0.5 to 1 Mg klonopin - not a big deal. I don't take it every day, I take out every other day with some longer breaks if I don't need it. My shrink will prescribe this forever. If it ain't broke, don't fix it he says. It's a reasonable approach.
posted by crazycanuck at 9:20 PM on March 19, 2013

the somatic theory states that accelerated heartbeat and jumpy stomach cause anxiety-- the brain attempts to justify the heightened adrenal response by agitated thoughts.

Following up jbenben, are you hyperthyroid? Do you have high blood pressure or rapid pulse?

Moderate your diet-- frequent healthy meals, and include healthy oils in every meal. You might regulate your blood sugar level and calm your stomach. Literally-- a spoonful of coconut oil after every meal and snack, super fish oil supplements morning and night. Magnesium supplements.

I recommend Reddit r/nootropics and r/supplements, there is also a subreddit r/anxiety

EXAMINE.COM summarizes scientific information about anxiety

There is also a mega thread on LONGECITY on treating anxiety safely and effectively, with SUMMARY OF SAFE & EFFECTIVE ANXIOLYTICS.

I have chosen kava as my anxiolytic, but my anxiety is more situational and not constant.
posted by ohshenandoah at 9:39 PM on March 19, 2013

Echoing walla above, I've also been on a low dosage of lorazepam (0.5) for a number of years: I take 1/4 to 1/2 (or sometimes none) first thing in the morning and 1/2 at night to help me sleep. I've gone off of it a handful of times and other than some mild grouchiness for a couple (literally) of days, I've had no withdrawal symptoms. My doctor said the same as yours and he's been proven right (so far!) for the past five years.
posted by hapax_legomenon at 10:01 PM on March 19, 2013

I wish you'd specified your mg/day clonazepam dosage, as it would give us a much better picture of how much room you have left to increase your dose if/when you develop a tolerance and also how long you might need to wean off it if/when you want/need to quit.

Anecdata: I was on 1mg/day for 19 months before weaning myself off it last month by splitting my dose in half (0.5mg/day) for three weeks and then in half again (0.25mg/day) for the final week. I finished a couple weeks ago and so far there have been no withdrawal symptoms, although it's recent enough that I could still experience rebound anxiety in the near future.

Personally, the biggest drawback of taking the medication was the hassle of trying to find a new psych doc to continue renewing my prescription after I moved to a new town and lost my health insurance coverage. After seeing 9 people at 4 clinics I realized that the hassle of trying to be allowed to continue to take my medication was causing me more anxiety than the medication itself was mitigating, and that's when I decided to just wean off it instead. Fortunately, I was able to use the time I was on the medication to make some life changes that eliminated many of my anxiety triggers.

IMO, the tradeoff of being able to function so well on clonazepam is your vulnerability to the possibility of abruptly, arbitrarily losing access to your medication. So although you could probably take benzos for many years before maxing out your tolerance, plan for it to be short-term and use this time to eliminate anxiety triggers from your life. For example, hunting for a less-stressful job.
posted by Jacqueline at 12:45 AM on March 20, 2013

i would really shy away from ever taking clonazepam long-term. i'm not well-versed by any means on the specifics of what you are going through. however, please make sure you exhaust every single option — even if they seem trivial — before you rely on a benzodiazepine for relief. having withdrawn from both a shorter term benzodiazepine (lorazepam) as well as clonazepam, i found it to be a huge difference. going off of clonazepam was an incredibly awful thing to do. if you can find a way to not be on it, then that is the ideal choice as far as i am concerned.

not everyone experiences tolerance at the same rate, but when it does reach up on you, it can be unmanageable. will your doctor raise your dosage past the recommended levels because what you have isn't cutting it? will you be able to find another doctor if the first will not? do you have access to safety nets in case something goes wrong with your access? will there be legislation limiting benzodiazepine prescription as it becomes more controversial and a new class of pharmaceuticals ushers benzodiazepines out like they did to barbiturates? in the end, they offer a tremendous amount of help. perhaps you won't meet many of the negative side effects and situations. on the other hand, if you do, they are awful. best of luck in feeling better!
posted by figure eight at 5:03 AM on March 20, 2013

I take clonazepam long-term (many but not most days), have probably been on it for 7 years or so. My daily limit is 2mg. I'm sure these things vary from person to person, but I don't have any fear of this drug compared to some of the others you mentioned (and some you haven't), which I have taken and tapered off due to appallingly awful and unbearable side effects.

I consider myself to have a somewhat addictive personality and I truly don't feel in any way addicted to this drug. It also has no noticeable bad side effects for me. I have gone without taking it, sometimes for long periods, and I never had any withdrawal symptoms (other than, uh, well I have anxiety, so sometimes I'm anxious, but not any more than when I started taking it). I don't see anything wrong with your psychiatrist's plan.

It noticeably improves my quality of life (work, social, general *dealing with things*) without making things worse (that I can tell anyway, who knows super long-term?), and that's ultimately why I take it.

Like, what you said here?

But I can finally wake up and go to work in the morning without feeling like shit.

Exactly. Exactly how I feel.

Good luck with your decision.
Anxious-person fist-bump.
posted by xiaolongbao at 1:35 PM on March 21, 2013

First it sounds like you need a full physical if you haven't had one.

Personal experience... I take 1.5mg of Klonopin a day, have for years, have gone off during insurance gaps and lived to tell the story.

Besides the cheep health care, I'm glad I'm in Korea, they're not so hung up on benzo==bad. If I'm having an exceptional bad day (few and far between) I can walk into the office, talk it out then get 5 mg of Valium in .5L saline (or sometimes nothing if talking it out is enough).

I trust my doctor. I see him weekly (my choice) more because my depression doesn't respond to anything.

Everyone is different. YMMV, etc.
posted by kathrynm at 4:24 AM on March 23, 2013

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