Daily Micro-Tapering Support Group

[[...]]

Thanks. I need to work until the end of January to take advantage of a severance package they offer. Otherwise, I would already be gone. It really is beyond belief how long this takes.

Yes! Go for the severance pay!  :thumbsup: And then you can take a nice vacation. But you must take your computer with you!

 

[[Ma...]]

SG

 

I was also thinking about you and the increased healing that will probably happen once you retire.  That poor engineering brain part needs a rest.

 

Susan

[[...]]

SG- what would you have done differently with the end of your taper? Were you minimally symptomatic and then worse at the end? You say you were impatient at the end- I understand that for sure .. Would you have slowed your rate at the end? And by "the end," how much do you mean? Last third of your dose, last quarter?

 

Sorry for all the ?s but you said if you knew then what you know now.... Just trying to learn what that is. 

 

The length of time this tapering takes is really unbelievable!

[[pr...]]

Yes, I tapered for 30 months and am now 45 months free. I have been symptomatic since I began.

 

I did see that documentary. A lot of time with Ashton and Lader.

i meant to say Shane Kenny. actually in looking at his face and skin, it looks as though he went through a benzo withdrawal. i can tell. for some reason i thought you had tapered for 13 months? my mother tapered over 2 years and she does have some symptoms but minimal and nothing compared to me.

 

Right, Shane Kenny.  I knew the one you meant.  I tapered for 30 months, but it did not do much good.  It is as if I CTed.  I was too impatient and that did me in, especially at the end.  If I knew then what I know now...

 

 

yeah me too. i am so regretful that i couldn't taper more slowly. Polenta says that she should have done a taper lasting 15 years. i am wondering if that would be the right thing to do although i don't know if i could do something like that. i don't know what it is about Shane Kenny's skin and face that kinda reminds me of what happened to my skin and face -- it's just sorta a stressed out look and looks like something just isn't right where Heather Ashton and even though she's older with wrinkles still has a more calm look and energy to her. am i making any sense? it just something i can tell from my own experience. i long for that feeling of calm and perfect health. no symptoms, you know?

[[...]]

SG- what would you have done differently with the end of your taper? Were you minimally symptomatic and then worse at the end? You say you were impatient at the end- I understand that for sure .. Would you have slowed your rate at the end? And by "the end," how much do you mean? Last third of your dose, last quarter?

 

Sorry for all the ?s but you said if you knew then what you know now.... Just trying to learn what that is. 

 

The length of time this tapering takes is really unbelievable!

 

I would have done a symptom-based taper from day one, keeping symptoms near zero at all cost.  If that meant some very long holds I would have done that...months if needed.  IMO, symptoms mean the brain/CNS is struggling to function and remaining in this state leads to glutamate damage, which is a different type of injury and a longer-term deal.

 

I had a rough uninformed taper and was very symptomatic the whole way.  Without rehashing the whole painful story, I got into a place at 3mg V where I needed to updose and could not bring myself to do it.  Instead I decided to press on to zero.  That was a critical mistake...one I am still paying for to this day.

 

One thing I am convinced of: the idea that it takes the same time to fully heal whether you taper fast and heal later or taper slow and heal on the way is not accurate.  In addition to being a lot more unpleasant, the faster more symptomatic taper will take more time.  Possibly MUCH more time.

 

The reason for this added time is that the faster taper has caused additional damage (IMO glutamate damage) that the slower taper avoided...that's where the time savings comes in.  The slower symptom-based taper corrected one injury: lack of GABA receptors.  The faster more symptomatic taper also corrected this injury, but added a new one: glutamate damage...and it can take ages to get rid of this nasty crap.  FWIW, that's what I think happens.

[[...]]

Right, Shane Kenny.  I knew the one you meant.  I tapered for 30 months, but it did not do much good.  It is as if I CTed.  I was too impatient and that did me in, especially at the end.  If I knew then what I know now...

yeah me too. i am so regretful that i couldn't taper more slowly. Polenta says that she should have done a taper lasting 15 years. i am wondering if that would be the right thing to do although i don't know if i could do something like that. i don't know what it is about Shane Kenny's skin and face that kinda reminds me of what happened to my skin and face -- it's just sorta a stressed out look and looks like something just isn't right where Heather Ashton and even though she's older with wrinkles still has a more calm look and energy to her. am i making any sense? it just something i can tell from my own experience. i long for that feeling of calm and perfect health. no symptoms, you know?

 

That day will come for both of us, we just need to remain patient and allow time to pass.

[[St...]]

Regarding glutamate damage, what do you think happens to people who go too fast and then hold, etc.? I'm positive I went to fast during my first taper and then reinstated at a low dose and started again. Am I basically stuck with that glutamate damage until I'm off or are the long holds I'm taking now doing some good if I continue on this more symptom-based taper?

[[...]]

Regarding glutamate damage, what do you think happens to people who go too fast and then hold, etc.? I'm positive I went to fast during my first taper and then reinstated at a low dose and started again. Am I basically stuck with that glutamate damage until I'm off or are the long holds I'm taking now doing some good if I continue on this more symptom-based taper?

 

I would think the long holds are not a waste of time at all.  I think it is a good thing to do.  The thing is, these type of symptoms can take a long time to get rid of.

[[Ul...]]

Well, this is nothing new, but mainly I think it is critical not to push through symptoms.  Cut small, go slow, and do whatever is needed to get rid of them...long holds, updoses, whatever it takes.  Pushing to zero was a huge mistake and the price was very high...much higher than I could have imagined.

 

I think we are all initially injured by the drug in that we lack GABA receptors.  But, IMO, that is not the whole story.  When we ask our CNS to function without enough benzo, glutamate damage results and I think this is the larger problem.  The goal of the taper is to avoid glutamate damage.

SG, does having symptoms mean you are damaging your glutamate? I can never seem to be free of symptoms even with long holds. Symptoms are either disabling or tolerable, but never gone.

 

Gard

 

I'm the same way.  I've been symptomatic for 75 months.  I've forgotten what normal is like and have no expectation of finding out anytime soon.  I would not say that having symptoms is damaging things.  If you have long-term persistent symptoms I'd think you have some degree of damage already, but not that living with it is making things worse.

 

This is the way glutamate symptoms are (if that is actually what is going on).  They will eventually go away, but in the meantime they can be nasty and they persist.  I think you're long hold was a very good thing and I also think it is possible to taper and heal your glutamate damage at the same time.  A careful microtaper that does not allow symptom increase is a good approach IMO.

 

Thanks SG. I'm on the fence now about starting my MT because of the Q taper and the liquefying of the L. I don't know which has caused my neuropathy to flare up so badly. Trying to decided if an updose of the Q is on order or if I should just wait this out (could be the liquefying, not the taper). Leaning toward waiting it out because I'm, so scared of the Q. Already have the start of a cataract and some muscle jerking. My pharmacist said if she were in my shoes, she'd taper the Q first. But it's the only thing that gives me sleep, so getting rid of it isn't an option right now. Would you look at my question on the titration thread? There's more detail there.

 

I confess I don't really understand the glutamate thing. I know messing it up is bad, though.

 

Gard

 

Hey Gard. I don't understand the glutamate thing either, even after hearing SG talk about it some. This whole thing has me pretty clueless. I've had to hold most of this entire year so far due to the challenges (injury, surgery, long recovery with complications, hurricane evacuation, etc.). I've noticed that my sx are no more different now than 9 months ago near the beginning of the hold. Maybe holds just don't work that well for me. I'm just now starting to get back into the taper thing, but the amount each day is mega small and I still have to hold after a few days. Hilary and Donald will be in jail before I get through all of this! Anyway, what is Q?

[[Ul...]]

Regarding glutamate damage, what do you think happens to people who go too fast and then hold, etc.? I'm positive I went to fast during my first taper and then reinstated at a low dose and started again. Am I basically stuck with that glutamate damage until I'm off or are the long holds I'm taking now doing some good if I continue on this more symptom-based taper?

 

I would think the long holds are not a waste of time at all.  I think it is a good thing to do.  The thing is, these type of symptoms can take a long time to get rid of.

 

SG, doesn't the long holds just put us back into tolerance symptoms?

 

Jeff

[[Ul...]]

And Jeff I held my taper from March 1-Aug 31 of this year. Didn't get better, had a few weeks of worse but probably helped in the long run?

 

Hey Liza. I seem to be the only one I've run into that doesn't get some kind of benefit from long holds. They sure seem to work for a lot of people though. It sounds to me like you get some kind of healing from your hold. If so, then stick with it and start the taper when you know it's time! Whatever pattern works, right? I've held most of this year, but not by choice. I would say that the hold has been really bad, but maybe the reason I had to hold was what was bad (life challenges). To each his/her own!! Hang tight.....

 

Jeff

[[Ul...]]

Well, this is nothing new, but mainly I think it is critical not to push through symptoms.  Cut small, go slow, and do whatever is needed to get rid of them...long holds, updoses, whatever it takes.  Pushing to zero was a huge mistake and the price was very high...much higher than I could have imagined.

 

I think we are all initially injured by the drug in that we lack GABA receptors.  But, IMO, that is not the whole story.  When we ask our CNS to function without enough benzo, glutamate damage results and I think this is the larger problem.  The goal of the taper is to avoid glutamate damage.

SG,

 

i agree with you about the glutamate damage. i can tell between the hours of 2-4am for some reason that has been the time when brain changes (for me) take place and a certain revving of the brain and my whole body take place where hallucinations/sleep paralysis have been occurring and messing with my sleep --promptly at 4am i can feel the brakes be put on where everything just stops and i am able to finally relax and fall asleep with normal dreams. it's got to the that glutamate revving. i just hope it's all part of the healing process because one can feel very scared by it and certainly feels like my brain has been hijacked by who know's -- feels like aliens.

 

i saw one of your post on the protracted section i think about the kindling and i put up that link of Perseverance's about the LTP. would love to know your thoughts about the LTP?

 

That sounds familiar.  I don't have hallucinations or sleep paralysis, but it is like my brain is unstable.  All day long I go through better and worse periods as if whatever is supposed to happen is not stable.  It's like my brain does a better job at times, and at other times it just falls apart and things are messed up until it tries again and is able to improve function somewhat.  But I never feel total relief.  Not even close really.  No windows yet.  And some days, like yesterday, are still hideous.  I went to bed at 7:30 last night in disgust just to cut the BS short.  We just have to have faith.

 

Perseverance did a great, great job of researching the problem.  What a gift to BB and the whole community.  I've read all her threads and have read the LTP paper three times.  It is hard to follow, but I get the gist.  I'm an engineer and have always related to science, so some of it did compute, but when it comes to biology I am like a duck out of water.

 

I don't really understand much beyond what I read from Perseverance and other sources.  I just don't relate well to biology.  I have noticed though that we seem to have a lot in common with traumatic-brain-injured people.  We also have a tremendous amount in common with people injured by other psych drugs.  It makes me wonder if there is a common denominator and if glutamate damage is common to all three.  I have to read more about TBIs.  There is more known about them.

 

Sg, what's LTP?

 

Jeff

[[Ul...]]

I'm the same way.  I've been symptomatic for 75 months.  I've forgotten what normal is like and have no expectation of finding out anytime soon.  I would not say that having symptoms is damaging things.  If you have long-term persistent symptoms I'd think you have some degree of damage already, but not that living with it is making things worse.

 

This is the way glutamate symptoms are (if that is actually what is going on).  They will eventually go away, but in the meantime they can be nasty and they persist.  I think you're long hold was a very good thing and I also think it is possible to taper and heal your glutamate damage at the same time.  A careful microtaper that does not allow symptom increase is a good approach IMO.

Thanks SG. I'm on the fence now about starting my MT because of the Q taper and the liquefying of the L. I don't know which has caused my neuropathy to flare up so badly. Trying to decided if an updose of the Q is on order or if I should just wait this out (could be the liquefying, not the taper). Leaning toward waiting it out because I'm, so scared of the Q. Already have the start of a cataract and some muscle jerking. My pharmacist said if she were in my shoes, she'd taper the Q first. But it's the only thing that gives me sleep, so getting rid of it isn't an option right now. Would you look at my question on the titration thread? There's more detail there.

 

I confess I don't really understand the glutamate thing. I know messing it up is bad, though.

 

Gard

 

I'd get rid of the Q first too.  I agree with the pharmacist.  Those drugs just plain scare me.  Vile poisons.  I'm not sure how medicine got to a point where they think any of these drugs are appropriate health care.  I'm sure it has more to do with money than health though.

 

Yes, I wish I could. And that's why I tapered it down to 17mg. But then my sleep started to fall apart. So I decided to go back to the L for awhile. If I can. I'm holding again.

 

I don't think the L is doing anything for me at all. I became habituated to the benzos so fast it was ridiculous.

 

Meanwhile, I'm working on mindfulness (which is 100% contrary to my personality type) and hoping if I get good enough at it, I can reduce the Q again. I also have some yucky EMDR (trauma) therapy to go through starting next month. My doctor thinks there's a trauma component to my sleep issues. I don't know why stuff that happened years ago would come up now after all this time and steal my sleep. I was doing fine with tremendous stress from all sides until a couple of years ago. Gutting it out always worked for me before that!

 

Gard

 

Not sure what you like to read, Gard, but this book is proving to be really helpful for me: https://www.amazon.com/Body-Keeps-Score-Healing-Trauma/dp/0143127748/ref=sr_1_1?s=books&ie=UTF8&qid=1478562876&sr=1-1&keywords=the+body+keeps+the+score  You may want to read some of the reviews from buyers. I first got this book from a library and then later purchased it. I'm only about 1/4 of the way through it, but it definitely addresses trauma problems and how they manifest themselves. I follow Dr. Kelly Brogan a lot. She's a psychiatrist who treats people with NO meds. She used to use meds to treat people a while back, but she learned from a mentor that meds were/are really messing people up. She not only helps people get off meds, but she also helps them lower their toxic loads (processed "fake" foods, toxins in personal care products, clean air, etc.). She's had huge success with even the hardest cases like schizophrenia and the like. I recently got involved with one of her Facebook groups where we're all going through the process of getting off meds and lowering toxins and carcinogens in our lives. Check her out sometime http://kellybroganmd.com/  Someone in the FB group told me about "The Body Keeps the Score". Hugs!

[[ga...]]

Jeff, Q is Seroquel (quetiapine).

 

Gard

[[ga...]]

 

 

Not sure what you like to read, Gard, but this book is proving to be really helpful for me: https://www.amazon.com/Body-Keeps-Score-Healing-Trauma/dp/0143127748/ref=sr_1_1?s=books&ie=UTF8&qid=1478562876&sr=1-1&keywords=the+body+keeps+the+score  You may want to read some of the reviews from buyers. I first got this book from a library and then later purchased it. I'm only about 1/4 of the way through it, but it definitely addresses trauma problems and how they manifest themselves. I follow Dr. Kelly Brogan a lot. She's a psychiatrist who treats people with NO meds. She used to use meds to treat people a while back, but she learned from a mentor that meds were/are really messing people up. She not only helps people get off meds, but she also helps them lower their toxic loads (processed "fake" foods, toxins in personal care products, clean air, etc.). She's had huge success with even the hardest cases like schizophrenia and the like. I recently got involved with one of her Facebook groups where we're all going through the process of getting off meds and lowering toxins and carcinogens in our lives. Check her out sometime http://kellybroganmd.com/  Someone in the FB group told me about "The Body Keeps the Score". Hugs!

 

Thanks, Jeff. I just put a hold on it in our multi-county library system and will wait for it to be sent to my itty bitty library. I don't know if I will be able to read it, though. My brain is like mud these days. Maybe little by little. The reviews were interesting.

 

Gard

[[...]]

I would think the long holds are not a waste of time at all.  I think it is a good thing to do.  The thing is, these type of symptoms can take a long time to get rid of.

SG, doesn't the long holds just put us back into tolerance symptoms?

 

Jeff

 

Have you checked out the Long Hold support thread?  They are getting some good results.  It can be a long slow process.  Perhaps I am not remembering, but I don't think there are any that are worse off.  They all seem to do better eventually, although getting worse before getting better seems to happen sometimes.  Does this apply to everyone?  I have no idea, but it seems to apply to most.

[[...]]

Sg, what's LTP?

 

Jeff

 

Long-Term Potential.  Basically, I think it is a neuron that is stuck in the 'on' state.

[[wa...]]

Hi.  I am getting ready to switch to water titration. Milk irritates my gut. Here is my plan: 75 ml of water, add .75mg of clonazepam. Remove .2 mls of mixture daily (.002 mg/.75=.0027 per day x 30 days = .08 which is an 8% reduction monthly. So 75, 74.8, 74.6, 74.4, etc. Does this sound reasonable? Need to go slow. Nervous system taxed. Need input to make sure this sounds right. Ran it by SG57 but just want to double check. Should I hold when i first switch ro liquid before tapering?

[[...]]

Thanks SG for reply. I'm trying to do a symptoms based slow taper but symptoms are never really zero. They fluctuate and can be fairly minimal at times but not really zero for any extended length of time. The problem is that even when trying to do a minimally symptom based taper, sometimes bad symptoms still come. Then what to do- hold? I've updosed in the past but then going back down is even harder. Can one really keep the symptoms at bay? It seems like a certain rate works for a while and then you have to go slower by you don't know when you have to go slower until the symptoms get bad. They don't always gradually worsen. Like I can feel great one day and BAM- hell the next day and it lasts...

I'm still trying to figure it out but haven't yet. I was doing great for a couple months but now back in a wave. I will say I think external factors play a huge role- it's not just the cuts. I think the body is very sensitive in w/d and external stressors can flare sx's. Even if it's not a major stress- just being really hectic can do it.

I think it can be really really hard to keep sx's at bay the entire taper like some BB suggest. I wish I could figure out how to do it bc I would do it! I agree - I get impatient but going too fast just makes it take longer.

 

SG- how do you recommend preventing sx's from getting worse? As an engineer, maybe you have a good idea of a specific plan? Track each sx everyday and look for increases? So hard to know sometimes!

 

Thank you for sharing your story and hindsight.

[[Ma...]]

Hilary and Donald will be in jail before I get through all of this!  Quote

 

VERY LONG LAUGH. THANK YOU

 

I feel the same way.  Pretty much a way of life for a long time.  ACTUALLY I THINK OF IT A LITTLE LIKE JAIL.

[[...]]

Thanks SG for reply. I'm trying to do a symptoms based slow taper but symptoms are never really zero. They fluctuate and can be fairly minimal at times but not really zero for any extended length of time. The problem is that even when trying to do a minimally symptom based taper, sometimes bad symptoms still come. Then what to do- hold? I've updosed in the past but then going back down is even harder. Can one really keep the symptoms at bay? It seems like a certain rate works for a while and then you have to go slower by you don't know when you have to go slower until the symptoms get bad. They don't always gradually worsen. Like I can feel great one day and BAM- hell the next day and it lasts...

I'm still trying to figure it out but haven't yet. I was doing great for a couple months but now back in a wave. I will say I think external factors play a huge role- it's not just the cuts. I think the body is very sensitive in w/d and external stressors can flare sx's. Even if it's not a major stress- just being really hectic can do it.

I think it can be really really hard to keep sx's at bay the entire taper like some BB suggest. I wish I could figure out how to do it bc I would do it! I agree - I get impatient but going too fast just makes it take longer.

 

SG- how do you recommend preventing sx's from getting worse? As an engineer, maybe you have a good idea of a specific plan? Track each sx everyday and look for increases? So hard to know sometimes!

 

Thank you for sharing your story and hindsight.

 

I'd invest the time my body was asking for.  I know that is a challenge, since the process is already much too long.  Go to the Long Hold thread and try to get a feel for what you can expect.  Then you can decide if it is worth it for you.  You might be a harder case or you might just need a good long hold to stabilize things more.

[[jr...]]

Hi.  I am getting ready to switch to water titration. Milk irritates my gut. Here is my plan: 75 ml of water, add .75mg of clonazepam. Remove .2 mls of mixture daily (.002 mg/.75=.0027 per day x 30 days = .08 which is an 8% reduction monthly. So 75, 74.8, 74.6, 74.4, etc. Does this sound reasonable? Need to go slow. Nervous system taxed. Need input to make sure this sounds right. Ran it by SG57 but just want to double check. Should I hold when i first switch ro liquid before tapering?

 

Klonipin is not soluble in water. if you dissolve your med in 5ml etoh and then add 70 ml water , you will have a solution that is .01mg/ml.

[[St...]]

Regarding glutamate damage, what do you think happens to people who go too fast and then hold, etc.? I'm positive I went to fast during my first taper and then reinstated at a low dose and started again. Am I basically stuck with that glutamate damage until I'm off or are the long holds I'm taking now doing some good if I continue on this more symptom-based taper?

 

I would think the long holds are not a waste of time at all.  I think it is a good thing to do.  The thing is, these type of symptoms can take a long time to get rid of.

 

 

What I mean, though, is what happens with the glutamate damage? Do I heal while I hold? And what does that mean for the rest of the taper? Only continue if you're not symptomatic?

[[...]]

I would think the long holds are not a waste of time at all.  I think it is a good thing to do.  The thing is, these type of symptoms can take a long time to get rid of.

What I mean, though, is what happens with the glutamate damage? Do I heal while I hold? And what does that mean for the rest of the taper? Only continue if you're not symptomatic?

 

IMO, yes, you heal when holding. They can be persistent so it can take a long time to get rid of them, but I think once you do you set yourself up for a better taper.

[[St...]]

I would think the long holds are not a waste of time at all.  I think it is a good thing to do.  The thing is, these type of symptoms can take a long time to get rid of.

What I mean, though, is what happens with the glutamate damage? Do I heal while I hold? And what does that mean for the rest of the taper? Only continue if you're not symptomatic?

 

IMO, yes, you heal when holding. They can be persistent so it can take a long time to get rid of them, but I think once you do you set yourself up for a better taper.

 

So if you've had a taper with symptoms the best thing you can do is to try and continue as symptom free as possible? Including possible updoses to avoid glutamate damage?