Withdrawal - kindling? Please help!

[[ra...]]

I was diagnosed with anxiety disorder about 7 years ago and put on clonazepam.  I took it for a while and then tapered off probably after about a year or so.  I knew it sort of did things to me emotionally - I would be less in control of my emotions, a bit more impulsive, etc.  But it was the only thing that helped the anxiety.  I was off of it for a good long while, no withdrawal symptoms that I'm aware of, and eventually the anxiety came back (again, after a very long while) and I went back on it.  I was on it for only a matter of months and then stopped again.  I was given some several months later but only for anxiety related to flying.  Then I was off of it for a long time.  Then when the anxiety came back, I went back on it for a few months.  Then I felt better so I stopped.  This time I may have had withdrawal symptoms.  I went to an urgent care for what I thought was probably a very bad panic attack, but this time it was affecting me physically (heart rate, etc.).  The doctor thought that I was probably withdrawing and prescribed me enough to taper off of it.  It apparently worked, and I tapered off, and then I was basically fine for over a year.  Then I went back on them when some anxiety kicked back in, first this time I went on ativan, which I'd never taken before, and after that made me a little depressed, I switched back to clonazepam.  Here's where it all goes off the rails.  I took that for a while, then kind of went off it again.  I had some rebound anxiety but it was mostly manageable.  But I went back to the doctor and got some more, three months' worth.  That was three months ago.  The problem I've always had is dose escalation - I will take more than prescribed if I can't sleep or feel some anticipatory anxiety or intrusive thoughts.  I did that this time around, and each time I ended up running out a week or so early.  And each time, the anxiety came back badly.  The first time, I was just seriously anxious.  The second time, I was seriously anxious and having very bad intrusive thoughts and dreams.  I refilled and of course took more than I should have.  This time around - I've been off of them for two weeks - has been the worst of all.  I've been anxious, intrusive thoughts, some depersonalization/derealization, some very bad fears, appetite has pretty much been wiped out, very agitated (having to pace around all the time, etc.), emotional numbness, and really a bad fear that I'm just going crazy and will never be okay.  I have "windows" and during those I make sure to eat something or sit down and relax.  I am still able to go to work, even though I'm not currently as sharp.  But mostly I'm living my life in fear and anxiety.  I think I really screwed myself with the dose escalations.  And I did not taper off.  I have an appointment tomorrow to see my doc, and I suspect I'll end up with more so I can taper off of them.  My significant other has been wonderful to me and wants to help by being "in charge" of my doses, as stupid as that sounds.  I'm really terrified that taking them again to taper will make me worse, but I am more terrified that, if I don't go back on them to stabilize myself, I will just get worse.  (My symptoms, so far, seem to have peaked, and I don't have any physical ones so far - but I don't know if they'll get worse, and I'm terrified that they will.)  Basically, my question is this - should I get back on it to taper properly?  The c/t didn't work for me, obviously.  And now I've got myself convinced, after two weeks off of it, that I'm going to have a seizure and die (my anxiety often presents as hypochondria).  What are the chances that I'm just going to get worse and worse?  I don't want to have to quit my job and I won't have anywhere to go if I do lose it, but I don't feel in control of this.  Should I go back and taper properly, or will that just be making it even worse?  What are the chances, after two weeks completely off, that my symptoms will just get worse or I will end up having serious physical symptoms?  I'm really freaked out.

[Guest [ba...]]

If you've been off for two weeks, I'd personally suggest that you not get any more pills from your doctor.  I think the temptation to up dose would be very great, and the need for a taper is no longer there (since you're already two weeks clean).  I think you'd be better off talking with a therapist about your anxiety instead of depending on pills to do that for you.  The symptoms from kindling like you've been doing are likely to get worse.  Best to just get off of them, IMHO.

[[ra...]]

Do you think I'm just going to get worse and worse?  That's my fear - that this withdrawal is just going to get worse.  I'm only two weeks out - is that long enough off of clonazepam to not need a taper or something to stabilize me?  I'm not as worried about the temptation to up dose - I will do whatever I have to, even having my dose policed, to keep that from happening - but that I will just make this withdrawal / kindling effect worse.  But I am also scared if I don't get any more to stabilize me through this, I am just going to get worse until I can't function.  I don't know if two weeks out from that sort of intermittent but high-dosage use is enough?

[Guest [ba...]]

When I joined this forum, I was told that the window for reinstating was two weeks.  You're at the two week mark, so from what I've heard, reinstating and tapering no longer makes sense.  Another reinstatement could even make it even more difficult for you to withdraw.  That's the way that kindling tends to work for a lot of people.

 

You are correct that 5-6 mg/day is a high dose, and there are many here who would tell you that you should have tapered instead of just stopping like you did.  But you're where you are right now, and I don't think it's prudent to go back on simply to withdraw differently.  I would think that you would probably should have experienced (or are experiencing) the worst symptoms by now.  If you're not completely overwhelmed, I'd be very tempted to stay the current course and stay away from those pills.

 

Hopefully, some others will chime in.  And hopefully, you can have an open/honest discussion with your doctor.

[[ea...]]

This is a personal decision, because we cannot know how you feel. At two weeks, you will soon be past the acute stage. That does not mean things will necessarily get better. You are possibly kindled, at least by your history, and your withdrawal may not get better for some time. This is impossible to predict. The main danger with cold turkeys is having seizures, and you are pretty much past that point. If I were in your shoes (and I WAS!) I would not reinstate and taper. I would stay the course. But again, this is your decision, based on how you feel.

 

Will things get worse and worse? To be honest, maybe. Each person's withdrawal is different. I felt simply awful for well over a month, but I have a 30 years history of benzos, plus 25 years of steady alcohol use. And, I also got off Ambien and two AD's in a fast taper during my cold turkey! Talk about kindled..... The point is that I survived it, and you will, too. Its a matter of educating yourself on what causes symptoms, understanding how benzos work on the nervous system, and learning new techniques for handling symptoms. It can be done.

east

[[ra...]]

Thank you.  I'm now kind of more afraid of the medication than I am what it was treating, but my symptoms now are somewhat close to what I was being treated for, only much more severe.  And now I've added fear of insanity and things like seizures to the list. 

 

If I'm two weeks out from taking high doses for a couple of weeks, have I passed the window of where I'd have something life-threatening, most likely, like a seizure or some such?  That's my biggest fear right now, is physical symptoms like that.  I'm really driving myself crazy.  I'm just at the point of being too overwhelmed.

[[ea...]]

You are most likely past the danger zone for seizures. I say most likely because Im sure it has happened that someone past two weeks seized. But I know its unlikely. Seizures are the only truly dangerous thing about withdrawal.

Everything else is horrible but wont hurt you.

Your deep fear of this is understandable, and actually quite normal for withdrawal. Many of us become almost paranoid about our symptoms. Some people start thinking they have some disease, and run to doctors a lot. Me, I worried I had gone crazy.

It sounds as if your pre-existing issues are being magnified by withdrawal....very common, very normal.

Are you able to distract yourself at all?

east

[[ra...]]

I am not really able to distract myself at this point.  Basically I'm reading about the withdrawal stuff which is possibly making me feel worse - certainly suddenly reading about the possibility of seizures has made me even more freaked out today (I wasn't worried about that one specifically until now).  Some moments I feel like I've reached a peak or plateau of my symptoms and am not getting any worse.  Other moments I feel like I am possibly getting worse and then I get severely freaked out.  I'm truly frightened that I am just going to not be able to function.

 

I do get these feelings of needing to shiver almost, and little muscle twitches/jerks.  Is that normal, or a sign of something serious? 

 

Sorry to ask so many questions...I'm just at a breaking point, and am very lost, and don't know what to do.  I see my doctor tomorrow and don't know what to say.  I don't know whether to reinstate to help myself, or not.  I feel like it might get me through this, but I also know that is a very tempting thought to just take it again, and that I could make myself worse.  From what I'm reading, it seems like it might be worse to go back on it, so I'm leaning towards just continuing to fight this, but I'm so, so scared I'm going to just keep getting worse. 

 

Thanks so much for your replies.

[Guest [ba...]]

Seizures are quite rare, and you're past the main window for having a seizure.

 

Please don't add new fears and anxieties to your current symptoms.  You will be fine.  A lot of us cold turkey.  I joined this group well within the two week reinstatement period, but chose to continue with my cold turkey withdrawal anyway.  I do not regret that decision.

 

The muscle jerks are very normal.  Mine lasted 2-3 months.  They were more of a nuisance than anything else. 

 

Take care of yourself while you recover.  Eat healthy.  Sleep as well as you can (sleep is often a problem when withdrawing, but not for everybody).  Go easy on excesses for a while (e.g. alcohol, caffeine).  Stay as active as you can.  Basically, live a normal, healthy life, and you'll get through this just fine.

[[ra...]]

Thanks so much, I really appreciate the replies.  I know I'm being very needy and whatnot but I'm just so lost and scared.

 

What's the main window for having a seizure?  I will admit that I am guessing as to being off for two weeks - it could be less or more.  I don't remember exactly when I last took one, that's how bad it got.  But I believe it was around two weeks ago, give or take a few days.  I'm just scared of adding more symptoms. 

 

My appetite has been torpedoed, I can basically not eat at all.  When I have "windows," I will take that opportunity to eat, and I am mostly eating healthy.  I have a wonderful fiancee who is being extremely reassuring and helpful.  If not for her, I'd have been in the ER by now for sure.  But even with her, I'm so scared that I will end up there anyway.  And she's on disability for anxiety/panic disorder (that's how amazing she is - she's helping me deal with this even while having that - but she never went on benzos!) so I don't know what she'd do if I got too much worse.  Sleep seems to be out of the question.  I was given Gabapentin a while ago, but the pills are too big for me to swallow.  But I forced myself to take them a couple of nights, and I take something called Clonidine for blood pressure which also helps me sleep, and what seems to happen is that I'll get sleepy, and fall asleep for an hour or two, then wake up anxious, then fall asleep again, and repeat that cycle all night.

 

I just cut out caffeine the day before yesterday, so I have to wonder if I'm experiencing withdrawal from that on top of this!  But I certainly do not want a stimulant on top of what I'm already dealing with.

 

I just don't want to get worse and I don't want to lose everything.  I took a huge risk without thinking about the consequences with my dose escalation.  Obviously I have an impulsivity problem.  I abused this - though I didn't think of it that way nor did I mean to.  I didn't think about withdrawals.  I had never had them before when I'd just stopped.  I haven't been on this regularly, just intermittently, but the sort of binge pattern has obviously affected me very badly and now I'm dealing with bad withdrawals. 

[[ea...]]

I have read that seizures are more likely to happen in the first 2 weeks. That's why I said you were past the danger zone.

You are lucky to have such a wonderful fiancée. Treasure her!

You're not being needy. This is exactly what this forum exists for....a place where people can voice their worries and fears, ask questions.

Gabapentin is often prescribed in withdrawal. It does have side effects, and sometimes a withdrawal, so maybe its better you couldn't swallow those huge pills.

Clonidine is an excellent drug...given for high blood pressure and anxiety.

Many of us us stop drinking caffeinated beverages. Coffee, tea and many sodas have lots of it. I did for a while, but resumed without any trouble. The main symptom of caffeine "withdrawal" is headaches. I wouldn't worry about that, if I were you.

Sleep disturbances are very common in withdrawal. You are lucky you are sleeping at all! I did not sleep more than a minute or two at a time for the first six months, and after that it didn't get much better.

Stop beating yourself up, please. Look, Im a nurse, and I used and abused benzos for 30 years. I didn't think about the consequences, I think I thought I was somehow immune. Nor did I know how awful withdrawal can be for some people. I had never heard of kindling, either, and I am kindled. I was taught that benzo withdrawal could be dangerous because of seizures, and last maybe a couple weeks. Something like having the flu, I guessed. I was wrong, boy was I wrong. But - most doctors don't know this stuff, either. I have forgiven myself for not knowing the whole story, and have moved on from it. You will, too. But first, stop berating yourself for decisions you made "under the influence." 

east

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I can forgive myself for not knowing or being aware or thinking about the consequences, but this past time of taking such high doses for 10 days or whatever it was was straight up abuse.  I didn't even realize it was happening.  That's scary, that I'm capable of that.  And now I'm paying the price. 

 

Do you think I need to go to an ER or something?  I'm so, so scared of seizures.  I really didn't educate myself well enough on Klonopin being an anti-convulsant.  I'm so frightened I'm going to end up convulsing.  I feel like by now the med is out of my system and I'd have had that already, but just the past couple of days I've developed the little twitches and whatnot.  Are those going to progress into full-blown convulsions or something life-threatening?  Am I past the most threatening part?

[Guest [ba...]]

I took gabapentin for years including during some of my withdrawal.  It helped me to sleep.  I did not take clonidine, but I understand that it helps some people to sleep.  In time, you may elect to get off of these meds also, but first you should get through the benzo withdrawal.

 

I'm glad that you have support from your fiancé. 

 

I've also read that the primary seizure window is the first two weeks.  Again, seizures are rare - even during those first two weeks. 

 

Some people stop caffeine entirely.  I stayed with one cup of coffee in the morning, but gave up drinking caffeinated beverages in the afternoon and evening for several months.

 

I agree with Eastcoast about second-guessing some of your past choices.  What's done is done.  Time to move forward.  You will be fine.

[[ea...]]

That's what I said - you are accepting your own responsibility for this mess. That's a good thing! Some people never do this, and spend their time blaming their doctor.

Okay, you made mistakes. You are human. We make errors.

 

You cannot cause a seizure. They happen as a result of (and this is in simple terms, not scientific) overloaded electrical circuits in the brain. They cannot be caused by fear, anxiety, etc. You can put that fear aside. If you went to an ER, there is nothing they can do unless you ARE seizing. They would refer you to your doctor.

 

Some benzos function as anti convulsants, yes. But that does NOT mean that stopping one always causes sezures. The people more likely to seize are those who  1) have a history of seizures  2)come off a  very high dose cold turkey  3)also drank alcohol. Your dose was high but not outrageously so.

east

[Guest [ba...]]

The little twitches are not seizures.  Don't worry about them.  Some for various shakes/tremors that you may experience.  Very normal.  No need to go to the ER.

[[ra...]]

I think in the end my dose was somewhat outrageously high.  I averaged it out, but there were probably days in there that I took more than 6mg.  I'm just scared that being ~2 weeks out and I'm just getting worse.  Today I feel a little worse than yesterday.  So how long do I continue getting worse?  And the most difficult part is - how do I know if it is *me* making myself worse or the meds?!  What are the chances I will end up seizing or driving myself to a heart attack? 

[[ea...]]

Yes, 6 mgs is high but not the highest dose Ive heard of. I was on Klon 6 mgs a day, too, for 12 years. I have met other people who were on 8-10 mgs a day! (Oh, and there were nights when I took MORE than 6 mgs.)

 

There is no way I can tell you when you will feel better. Each person is unique, different, even though we have similarities. And there is no use comparing yourself to anyone else, either. You may just get more scared and worried if you do, and all for nothing.

 

You DONT know if its "You" or the meds making you worse. Sorry, but that's a central question many of us have to wonder about. Me - I went cold turkey, plus got off a sleeping pill and two ADs. I will NEVER know what caused what, and that bothered me a long time. Finally, I just realized that it did not matter, because I was going to heal no matter what caused my awful symptoms. And that's what happened. I slowly healed. I took a long time, longer than most people, but I don't care now. What matters is that I healed.

 

I have already tried to reassure you that you are past the real danger zone for seizures. You cannot "make" yourself have a seizure. That's physiologically impossible, and I am saying that as a nurse (which I am.) A heart attack - that's a little more likely but still quite UNlikely. Do you have a history of heart disease?

 

You have to distract yourself from this stuff. Distraction works, but you have to work at it until it becomes a habit. It works as an anti-anxiety tool as well.

east

[[sa...]]

Please let me know if you decide to reinstate....I am 29 months out from a short reinstatement but yet my fifth cold turkey and I am suffering terrible. I had windows the first year but progressively got worse so please be careful with your decision. I listened to everyone on these forums who told me not to reinstate and taper ( which I never did I was a PRN user) I really wish I would not have listened. If I would have went back on and tapered in 2012 I don't think I would still be suffering. This could go on for years if your not careful. I think about reinstatement everyday,

[[ra...]]

It ended up kind of out of my hands.  Here's what happened last night:

 

I was able to drive home from work, and my anxiety kept coming in waves.  I ended up, over the course of the next few hours, getting to the point that I was dizzy, feeling faint, couldn't think or speak very well, and felt so agitated.  My fiancee called an ambulance.  They came and took my vitals, which were pretty bad.  They took me to an ER.  I was absolutely honest with the doctors there.  They told me I was experiencing withdrawal, but I hadn't experienced the major physical symptoms so far, which was good, but I needed to get calmed down or I was putting myself at risk with my vitals like that.  They gave me an injection of 2mg Ativan.  I didn't want them to do it, but it seemed the thing that would help, and they insisted, and within a few hours I had calmed down.  Some anxiety beneath the surface but I felt closer to my baseline.  My fiancee stayed with me for the night - they kept me overnight for observation.  I was able to sleep, even in those uncomfortable beds with no pillows, and even with things stuck all over me.  This morning they moved me to the psych area.  I spoke to the psychiatrist who basically told me I needed to get help for the anxiety in the withdrawal symptoms.  At one point it seemed they might keep me all day for observation and to make sure I got stabilized, but in the end they decided to go ahead and discharge me.  They gave me 8 doses of Librium @ 25mg/dose to try to get stable and taper those.  I just got home - after 15+ hours of this - and though the Ativan seems to mostly be out of my system, I was able to eat first, and I took my first dose of Librium a few minutes ago.  I don't know this one but it seems it's prescribed for withdrawal from alcohol which I hear is similar.

 

So that's what happened.  I am going to call around to find a new doc that will hopefully take me right away - I'm not sure someone will take me on an emergency basis like that, but I've got to try.  I feel way better than I did yesterday - though of course I got no actual "feeling" from the injection last night, and I just now took the librium so it hasn't had time to take effect yet.  So that's what happened.  I was well on the way to giving myself a heart issue, my vitals especially my BP and pulse were off the charts.  Luckily, even last night, besides the extreme anxiety (which isn't new for me, withdrawals or not), I've never had any other symptoms of this stuff.  Hopefully I didn't just make my situation worse, but under the circumstances it didn't seem I had much choice. 

 

Any thoughts, greatly appreciated.

[Guest [ba...]]

My only thought is to try to find a therapist instead of a psychiatrist.  The former doesn't tend to prescribe drugs; the latter does, all too often.

[[ra...]]

That's why I don't really want to go back to where I was going.  They tend to prescribe drugs like it's nothing.  The first time I went they immediately told me I should be on the clonazepam, even before I'd finished talking about my symptoms.  And it was way too easy for me to keep going back.

 

Do you think the incident last night will have helped me in the long run, or hurt me?  Right now, because I can function, and I'm not debilitated, and my vitals seem to be mostly normal, I think it may have helped.  But in however many days it takes me to finish the librium - I have 8 25mg tablets, which I suppose could last me 8 days if I only took one a day - am I just going to be back where I started?

 

The problem is, how can a therapist help with physical symptoms like that?  My vitals were so bad that I was really putting myself in danger.  I don't want to just end up back there.

[Guest [ba...]]

I'm no physician (or therapist), but benzos are not curative.  They're not like antibiotics that kill the malady.  Benzos treat symptoms, not causes.  In the case of short-term travel or short-term grief, they may mask the worst symptoms until the situation (e.g. acute grief) has cleared itself away.  That's not generally the case for chronic anxiety.

 

I'm glad that you feel good today, but whatever was causing the physical symptoms is probably still there.  It's just masked under a layer of drugs.  Or perhaps, since you're calm, your physical issues are not an issue right now.

 

I do not know the cause of your anxiety, but I do know that anxiety can manifest itself physically as well as emotionally.  These are situations that should be discussed with a professional.  I just wanted for you to try somebody who wasn't inclined to shove a pill into your mouth to make it seem like everything was all better.

[[ra...]]

Yes, that makes sense - and I would like that as well.  I would be in a much better frame of mind to see someone and be able to talk to them if I was not in a heightened place.  Right now I think the doctor's idea in giving me something was to stabilize me - which seems to have been done somewhat, though I am still fighting some measure of anxiety - and let me slowly taper myself with this to see if I can get back to some level of functioning.  If I'd kept getting worse from last night, there was no way I would be able to function.  I was debilitated.  I'd be done.  I don't like the idea of reinstating, but after it was calculated that I was likely less than two weeks out from the last dosage, and the long half life of clonazepam, the idea of getting me stable seems sound.  I can deal with my anxiety and depression when it is at my baseline level, which isn't a good level, but the rebound anxiety went beyond that.  I assume that rebound anxiety is common.

 

I think what happened will be for the best.  I believe I will get better.  I hope that I am right.