Atalanta's Story

Here’s my current story in a nutshell:

 

Started clonazepam 2 mg nightly around Jan 24 2008; it "turned" on me (severe anxiety/agitation/agoraphobia) about a month later. Down to 1.75 Feb 29 2008; down to 1.5 March 10 2008; down to 1.375 March 14 2008 and holding. Also holding trazodone at 62.5 mg while tapering clonazepam.  Bedbound with Myalgic Encephalomyelitis ("chronic fatigue syndrome").

 

My physical withdrawal symptoms are minimal – well, on top of my illness, which is like the worst day of the worst flu of your life, every day, on top of a hangover, on top of a severe beating, on top of having run a marathon the day before.  I think the clon is sedating me and making me feel even weaker.  This is bad for an already bedbound person.

 

However, the psychological symptoms are awful.  I reached tolerance at my dose and while dosage reductions seem to be helping, I have horrible dreams, depression, and black thoughts.  I know this has to be the effect of the medication, but it is hard to get relief.  (I have basically no distractions: I am too weak to watch t.v., read a book, or talk on the phone. Writing this message is taking almost all of the day’s energy.)

 

A little history: I took Xanax for a couple weeks in 2002 (I was perfectly healthy then.)  Within those two weeks I developed terrible panic attacks and was terrified to leave the house.  It wasn’t much Xanax – don’t even remember the dosage.  I basically c/t off of it because I’d been on it such a short time.  Within three or four days I was saying “Wow, that was weird” and within a week or so I was fine.

 

The current situation: At the end of December I had a very bad relapse of my chronic illness, the worst I’ve ever had, with pain like I’ve never experienced and weeks of severe insomnia.  I went from mostly housebound to totally bedbound.

 

In January I asked my GP for a script for clonazepam.  I had read that it’d been really helpful for people with my illness in terms of neuroprotective effect – keeping the brain from over-firing.  I read this article (http://www.immunesupport.com/library/showarticle.cfm?ID=3154) which makes it sound like magic candy pills and heard positive things from people on online forums.  My brain was not functioning well at all at the time from weeks of severe insomnia and I never put together the thought “Maybe a long-acting benzo will turn out badly for me with paradoxical effects just as a short-acting benzo did.”

 

Well, as mentioned in the first paragraph, it took about a month for it to happen and I started tapering right away.  I am hopeful that my relatively short usage time is on my side. 

 

Thus far I’ve cut .625 worth.  I seem to feel better and function better with each cut, though I’m still really suffering.  My GP wanted me to cut from 2 mg at .5 mg every three days.  I rejected that as insane and dangerous.  A shrink friend has offered .25 a week as reasonable in her opinion given my duration of usage.  I’ve read Ashton and know that it is much slower.

 

I want this stuff out of my system and out of my life, because it is really messing with my head badly and it’s making me weaker and more sedated, but I know I have to be careful. 

 

I guess at this point, I’d like some encouragement and thoughts from others who have been there, and maybe some “If it were me, I would…” sort of thoughts.

 

Does the relative lack of physical symptoms at this point mean I might be able to manage a faster taper than some other folks?  I know that might not be able to be answered definitively.  Every taper, every cut is different, right?

 

When people talk about a 10% cut every two weeks, does that mean 10% of the original dose, or 10% cut of the previous two weeks’ dose? (I hate the idea of the latter…I don’t want to be doing this into the autumn!)

 

I might not be able to respond right away, and I apologize for that.  Thanks in advance for your help.  This is a great site!

 

Hi and Welcome to Benzobuddies!!

 

I know you are having probably the scariest experience in your life right now.  But I promise you it will get better.  I have been where you are and now I am doing much much better.  You can read my story in the "You can do this" topic in the Welcome Forum.

 

I know how these drugs can turn on you...they did me.  Keep tapering and once you are off..things should really start improving.  Hang in there!  You are not alone.

 

Love,

 

Jen

When people talk about a 10% cut every two weeks, does that mean 10% of the original dose, or 10% cut of the previous two weeks’ dose? (I hate the idea of the latter…I don’t want to be doing this into the autumn!)

 

 

 

Well, first of all I'm sorry you've had such a rough ride. But you sure seem to know what you are doing. The above question is the million dollar question, lol! I personally did 12.5% of my original dose. I started at 1.125mg klonopin and tapered by .125mg every couple of weeks. I'm off now about 6 weeks. I was on klono for about 4 months before the start of my taper. My taper took another 4 months.

Some people say it's better to do 10% of each new dose, but to do this you would have to do a liquid titration, which is a little more complicated, and probably not necessary only being on them for 1 month. I just did dry cuts. I had .5mg pills, and quartered them.

I can't say if you will get more physical symptoms or not. It sounds like you are doing a reasonable taper, and I don't see any reason to speed it up, unless you are really feeling well. Some people even only one month on can still have difficulty with a fast taper.

Not sure if you are cutting .25mg or .125? As you get a little lower, like 1mg, you may want to do .125mg cuts. Better safe than sorry. If you  have enough pills and enough time. Now if you are still having paradoxical sx (awful! I had them until I started tapering) you might want to go a little faster. 

Keep in touch!

Linda

Hi Atalanta,

 

Welcome to BenzoBuddies.

 

The 10% cuts every 7-14 days is just a guide. Having said this, we do encourage people to not drastically increase the size of cuts beyond 10%. If the overall taper rate is to be increased, it is better to instead increase the frequency of the cuts, not the size of the cuts.

 

Yes, the size of the cut should be relative to your dose at the time of the cut (the size of cut in mgs diminishes as your taper progresses). At the same though, when you reach lower doses, it will become impossible to make cuts that are 10% or less of your dose, but so long as you are using the smallest dose tablets available in your benzo, this is probably not too big a problem. At lower doses, your natural brain functioning should be the dominant part of the equation, so the increase in size of your cuts (in percentage terms) should not unduly worry you (so long as you have been following a sensible taper plan).

 

I tend agree more with taper plan suggested by the psychiatrist. I suggest though, that you consider cutting 0.125mg at a time, but perhaps increasing the frequency of these cuts - this should be based upon how you react to these cuts. Your overall taper rate might end up very similar to the 0.25mg cut every 7 days (if your were cutting 0.125mg twice a week), but smaller more frequent cuts are generally better tolerated than larger less frequent cuts. The titration of benzos mentioned by Eljay is just a logical extention of this, where very small daily (or near daily) cuts are made to your dose adding up to a reasonable overall taper rate over the week. The chances are though, you will not need to resort to titration because of your length of use of these drugs.

 

I think your GP's suggested taper rate is probably too optimistic. Some (most, maybe) might be able to do this after just a month or so use of benzos, but given your fragile state, I feel a little more caution is due. Though I certainly don't think you should draw though out very long (no longer than need be), because the longer you take them, the more dependant you might become. At the same time though, as you have stated, you appear to be suffering paradoxical effects, so the sooner you are off, the better (but do taper off, of course). You are the best judge of where to strike the balance with your taper rate. Remember, smaller more frequent cuts are usually  better tolerated than larger less frequent cuts.

Thank you so much, Jenilyn, eljay, and Colin.  I really appreciate your thoughts, support and help!

Atlanta

 

I have studied the protocols of the doctor that recommends benzos for CFS(Dr. Paul R. Cheney). He is a maverick and I know several people with CFS that are now much, MUCH worse for trying his program.

 

Klonopin treatment significantly increases basal GH and bluntes plasma cortisol, ACTH, AVP, and DHEA responses to exercise (P < 0.05).

 

This simply means it alters our bodies energy production system and will make CFS worse in some people.

 

It sounds more like you are paradoxical to the BZ rather than tolerant. In this case an expedited detox is best.

 

Sit2Know

 

It sounds more like you are paradoxical to the BZ rather than tolerant. In this case an expedited detox is best.

 

Sit2Know

 

Hi,

I"m sorry, I"m not sure what you mean by expedited detox, but I don't think this is a good idea. I've never seen a rapid detox work out well for anyone.

Atalanta should definitely continue her taper, but doing a fast detox is not the answer. She states she feels better with each cut.

I had severe parodoxical symptoms from my klono. I did a fairly fast yet sensible taper (1.125mg in 4 months), and I felt better with each cut. Yes, I had some really rough spots, but I"m off 7 weeks and doing fine now. 

I think if I had done it much more rapidly, I would be suffering a lot right now.

 

 

Hi Sit2know,

 

As a heads-up, we need to be careful with phrasing around here. I've been contacted by a member that was concerned by your use of 'expedited detox'.

 

It sounds more like you are paradoxical to the BZ rather than tolerant. In this case an expedited detox is best.

 

If Atalanta is suffering with paradoxical effects (from her own words and assessment), then it makes sense that she tapers off as quickly as is reasonable. This will mean balancing withdrawal effects against the paradoxical side effects. I expect this will be quite tricky, deciding whether to speed up or slow down the taper, as the symptoms may be very similar from either cause. I think that everyone, including Atalanta, is of the opinion she appears to be suffering with paradoxical symptoms - then the only rational solution is to taper off.

 

I understand 'expedited detox', but wish to make clear, this does not mean 'as quickly as possible'. It is more that you, Atalanta, should try your best to speed up the process, and get off as quickly as is reasonable and manageable.

 

Sit2know, 'detox' is word best avoided, as I'm sure you realise. Not only is it used in the promotion of many pseudo-scientic practices and therapies, it is also associated with 'rapid detox', 'detox centre/clinic', etc., and they have a bad press around here. 'Expedited detox' can be easily misconstrued to mean 'rapid detox'. Those places are normally to be avoided at all costs. Although, we have had one or two members that suffered severe toxicity (poisoning - it is rare), and a very rapid 'detox' under supervision is these circumstances is the only reasonable course of action. People can usually expect to feel dreadful afterwards, and perhaps for some considerable time, but under a life threatening situation, this is reasonable.

 

Atalanta, I am not suggesting this is your situation at all. I would expect that you doctor will have already done this with you if s/he suspected toxicity/poisoning. You would feel fantastically ill if you were in this situation. The only sensible solution to paradoxical side effects is to taper off as quickly as you reasonable can manage.

 

Anyway, I just thought I might try and clarify what people might mean. I hope I've represented everyone reasonably well.

Just wanted to say "Good Luck" Atalanta. Despite everything you still seem to have a good head on your shoulders. Well done!  :thumbsup:

 

Tony

Wow.  All this fuss about little ol’ me?  Thanks for the thoughts, everyone.

 

Yes, it’s hard to know whether it was paradoxical symptoms or tolerance withdrawal. After this process is over, I will not be messing around with any more benzos, believe me. 

 

Despite a little nausea, which could be from other supplements (I have some documented Krebs/citric acid cycle problems we’re trying to help) I am doing fine.  A bit jittery, but both hubby and therapist (who makes a housecall weekly as I am too ill to go out) say I am looking better, less anxious, less agitated as the numbers are coming down.  This is a relief.  I know each cut is its own animal, but I am glad that the distance I've come thus far has resulted in feeling better overall and not worse.

 

Wow.  All this fuss about little ol me?  Thanks for the thoughts, everyone.

 

Well we're caring people! http://content.sweetim.com/sim/cpie/emoticons/00020144.gif

Despite a little nausea, which could be from other supplements (I have some documented Krebs/citric acid cycle problems we’re trying to help) I am doing fine.  A bit jittery, but both hubby and therapist (who makes a housecall weekly as I am too ill to go out) say I am looking better, less anxious, less agitated as the numbers are coming down.  This is a relief.  I know each cut is its own animal, but I am glad that the distance I've come thus far has resulted in feeling better overall and not worse.

 

 

Hi atalanta,

This is really good to hear!

Keep us posted on your progress.

Having an awful day today.  So tired from my regular illness and feel like a total wreck.  Been at 1.25 for four days now and don’t know what to do.  I wanted to drop to 1.125 after tonight.  It is so hard to tell what is my regular illness and what are drug symptoms, seems impossible to tell difference between paradoxical and withdrawal.  I’ve been better after each cut, it seems, but I’m feeling so depressed today and because I’m bedbound and so weak there’s just nothing I can do to get relief or distraction.  I feel like this drug is constructing my own personal hell around me…okay, this is a bad day. 

Wish I knew what to tell you. All I can say is we're rooting for ya girl!  :thumbsup:

Thanks.  Have had a little nap and am feeling a bit better.  Mornings are the worst with both this illness and the drug.  Yesterday was stressful because Mom arrived to help...any change is hard. 

 

I don't want to go too fast, but the agitation and fear, oh, it takes away so much of my energy.

Thanks.  Have had a little nap and am feeling a bit better.  Mornings are the worst with both this illness and the drug.  Yesterday was stressful because Mom arrived to help...any change is hard. 

 

I don't want to go too fast, but the agitation and fear, oh, it takes away so much of my energy.

 

Yes it does. It feels soul destroying doesn't it? But it's not permanent. That's they one thing we mustn't forget. Once it's over, we do get our faculties back. The human body isn't perfect but it pretty darned impressive how it can recover from this kind of trauma.

http://content.sweetim.com/sim/cpie/emoticons/0002020C.gif

T

I tried to make a cut last night to my bedtime dosage - down .125 to .5 - and failed.  I woke up in the middle of the night - earlier than my usual middle-of-the night dosage, which is .625 - and had a splitting headache.  I took the cut portion then but the rest of the night's sleep was pretty much ruined. 

 

So I not onlly failed at the cut but I took .75 in the middle of the night, and fighting that down to .625 was really hard.

 

And I had horrible nausea all morning this morning and was badly agitated too.

 

I guess I'll go back to .625/.625 tonight and see if I can get a couple good nights of sleep back and hope for some better days before trying again.

I'm so sorry.  :'(

Atalanta -  Sounds sensible to me.    You are already down to 1.25mg/day from 2 mg/day, a 38% reduction, and are certainly NOT a failure.  I think the only way you could fail is to give up and you are not doing that, you are just stabilizing.  It's your body and only you can know what you can tolerate. Hope you are able to get some good rest.  Do you ever take any sleep aids, eg Melatonin?  I take up to 6 mg a few times each week and sleep pretty well. 

Thanks, Beeper and TPirog, I really appreciate your messages.  You can sense how discouraged I am at not being able to "succeed" in this at the pace I want to.  You're right, I've cut a big chunk, and I'm focusing instead on that I still have more than half the distance to go and I'm still feeling really anxious and agitated.  That's not necessarily helpful, is it?  I just wish I could get some peace.

 

I've been bedbound for three months now, on this drug for two months, tapering it for 21 days, and every day I wake up and have trouble appreciating my life.  The days are so long and empty when all you have the energy to do is lie here and sometimes turn the computer on for a little while on a good day.  Yes, I think the drug is adding to my depression.

 

Here's my current sleep regimen:

 

A couple hours before bed:

Calcium and Magnesium supplements

 

8:30: 1500 mg GABA (I know there is some controversy about this.  It definitely makes me feel relaxed.  I notice it makes my fingers tingle; seems to be common and to pass without trouble.)

9:20  .625 mg clonazepam, 6 mg melatonin

9:40  62.5 mg trazodone

Fall asleep between 10 and 10:15, generally, awakening at least twice during the night.

 

On night awakening, usually between 12 and 1:45 a.m.:

750 mg GABA

6 mg melatonin

.625 mg clonazepam

1/2 a Vicodin (gives me some upsetting dreams sometimes but I sleep longer, wake up in less pain, and don't need Tylenol during the day)

 

I've been discouraged when I had to slow down. When I cut from 4 to 3.5 mg valium I freaked and had to updose back to 4. I stayed there for a whole month! It sucked, but here I am now down to 1 mg. There is hope Atalanta!  :thumbsup:

 

T

Hi atalanta,

I truly never looked at the total length of my taper during my taper. I just looked toward eahc of  my next cuts as little triumphs. It makes it more doable, and gives you little victories along the way. Just think of each cut as leading to new and more healing.   

Hi,

 

Forget about the increase in dose. A truly one-off dose is not going to cause you any problems.

 

Just stabilise back at your dose 0.625mg for a few nights, and you should feel fine.

 

We could look at titration if you like. This will allow you take make imperceptibly small reductions to your dose. Let me know if you are interested.

Hi there!

I promise the best thing you can do it not worry about when you will be off.  I used to battle that ALL the time...I still have moments...but once I stopped worrying about that and focusing on each day as an ecomplishment, I feel so much better about the process.  Believe me I get how you feel.  I want to have a baby and it is going to take me over a year to get off this stuff so that I can be functional...while tapering.  I titrate and love it.  That is just my 2 cents.  Lots here drop .125mg and .0625mg and hold for a couple weeks.  It is a potent little pill.  I am sorry that you are suffering right now but it will get better 

T

Thanks all.  I wouldn't be in such a hurry if the "settle my brain" pill hadn't turned into a "pro-anxiety" pill.  It's making my underlying illness worse, and the longer I stay bedbound because of the lethargy and anxiety it's causing me, the more muscle mass I lose...and I am down to 113 lbs. from 117 at Xmas and was 135 before I fell ill almost four years ago.

 

I need to be able to get out of bed so I can walk to the bathroom, get my own food, sit up...all things I could do at the end of 2007.

 

Also, my husband has been offered a new (much better) job on the other end of the country, much closer to our families (we have no one here where we are now) and somehow I have to get there at some point.  My mom has arranged an air ambulance, but I still have to get well enough for that.  I'm too unwell at the moment to even be driven to the lab two miles away to have blood drawn.

 

I have a long way to go once I get of clonazepam...and unfortunately I have one of those illnesses where, well, you just have to test and try stuff and maybe it'll work and maybe it won't and maybe it'll make you worse (which is what the clonazepam has done).

 

Anyhow, this is getting pretty personal now, so I'm moving to a blog...would you believe for years I used to keep a food blog that was even featured in our paper?  That was just last summer I was doing that...I even met some famous chefs that way...

 

http://www.benzobuddies.org/forum/index.php?topic=7711.0