the over 2 years - cold turkey - kindling - support group!

hello everyone!

i don't know if a cold turkey/kindling support group already exists but i wanted to start one and talk to the people who have done a cold turkey from kinda large dose's (or any cold turkey) from benzo's and also who know for a fact you are kindling.

i know for a fact that i've kindled from this last cold turkey. i can feel inside my brain. my brain actually feels like a kindling and sometimes roaring fire. (the roaring is i'm sure from that excess glutamate activity).

and i simply cannot take any other medications. and i also really can't take any supplements right. my brain is still too sensitive. last night i took a melatonin that also had GABA & theanine in it and i had hallucinations again and this far out time i have of 25 months. i could feel my brain just whacking out. so, it's only good nutritious foods for me right now. sometimes i will need to take an aspirin when the head pressure is severe and sometimes an excedrin, but that's it!

when i spoke with Baylissa Frederick (also known as Bliss Johns) some months back she did say that people who did cold turkey and who are kindling do have more severe symptoms and sometimes take a little longer to heal but that we do indeed HEAL! so that's good news.

i have seen a tiny bit of improvement with the nerve pain, squeezing neuropathy ( i had a whole body squeezing neuropathy), feet neuropathy, brain squeeze's, brain vibrations, mental OCD symptoms and other mental s/x, cog fog, derealization, depesonalization and more...

some improvement but just ever so slight. i am still house bound and still mostly couch bound, i am able to get up during the evening hours but usually just come on here or sit in my chair and watch TV. so haven't really been able to get back to any kind of old life just yet and still not ready to be out and around people although talking with people and feeling more normal has been happening.

and much more...  and i am 25 months away from the last rescue benzo and 29 months since the cold turkey.

but just wanted to hear from others who did indeed do a cold turkey, is over 2 years out and who has been kindling and some of your symptoms.

thanks everyone!

pretty

Pretty-Daisy: I think I am kindling. From very small doses but kindling nevertheless. I was off and on for 10 years. At 2.5 months out I am a mess. Constant jerking and twitching, sometimes for hours, hot sweats, racing heart and high bp (more under control with propranonol). I would love to talk to others in this situation. I also have a problem with other meds and can take almost nothing. Even a small dose of betablockers (30mgs per day) leaves me with severe leg cramps. It's a choice between that and high blood pressure.

Love Buddy

I think this is a good idea for a support group.

Love Buddy

hey buddy,

well, maybe you are kindling. after being off and on the benzo's for ten years that could be the case. but you are also still very early out. so give yourself some time. i wouldn't take anything else except for good nutritious food right now since you're still so early out.  at 2.5 months you're kinda supposed to be a mess, so you're right where you should be and you're healing now so that's good!

love, pretty

pretty,

I'm 25 months off my last benzo dose and sure that I'm kindled from cold turkey from multiple anti-depressants and a few times benzos too, over 10 years, with a few months gap between meds. Now I realize why I could not go more than a few months without needing pills to be functional. I've never been able to function a full year without needing meds.

I always wondered if there was something inherently wrong with my body and brain, but now it seems that my early c/ts from short duration low dose benzo and other a/d treatment might have trapped me in this cycle of pills.

I was also (mis)diagnosed with fibromyalgia and treated with non benzo pills, now I remember that the symptoms I have now are about the same as I had back then, although the intensity is much severe now. I've lived in a foggy state for as long as I can remember which now I know has a name - derealization/depersonalization, and the tension headaches which all seems so much like how I'm feeling now.

So now, I have 24/7 severe head pressure/tension headaches (the worst and the most brutal), dr/dp (intensity has come down but still scared of going out alone), my vision looks dark, depressing and dull, unbearable muscle pain and fatigue which makes the slightest movements painful and tires me out very quickly if I force myself into walking or any such light activity, terrible insomnia, left leg and foot pain, depression, hopelessness.

Having said that, I do feel some muscle twitches in my body and head quite often, although it is still painful it kind of agrees with the general experience that in protracted cases major healing happens in the 2-3 years period. Probably these are signs of healing, but what scares me is the slowness and uncertainty of when I will be healed enough to go outside by myself and get through a full day without needing to find a place to crash.

it's like deja-vu, all over again.

best wishes with the healing all!

Hurtbtain, you are describing what I am feeling. It's awful isn't it. Not knowing if we can be out for a day. I'm like that. I know I am early to be in this group but I do feel my symtoms are severe for the level fo benzos I've been on and I think kindling is part of it.

Love Buddy

Yes Buddy, it is, absolutely awful.

What's bad is it's hard to plan my day, with the fear that just when I'm getting comfortable with any activity, I get flooded by a wave of symptoms which brings me crashing down and makes me wanna hide in a corner, it has happened to me in my previous c/ts and terrifies me.

The people around are also confused by the sudden change in behaviour.

Ditto: I just wish medics would read these pages. There has to be some validation for this torture!

Love Buddy

I'm 25 months off my last benzo dose and sure that I'm kindled from cold turkey from multiple anti-depressants and a few times benzos too, over 10 years, with a few months gap between meds. Now I realize why I could not go more than a few months without needing pills to be functional. I've never been able to function a full year without needing meds.

I always wondered if there was something inherently wrong with my body and brain, but now it seems that my early c/ts from short duration low dose benzo and other a/d treatment might have trapped me in this cycle of pills.

hurtbrain,

may i ask how short your benzo taking was and what amounts? i think it's a good thing that it was a short duration even though i know that other psyche meds/ADs can do just as much damage hence your head pressure and tension headaches which really are signs of healing but i know sure doesn't feel that way.

and yes, i also think the muscle twitches in your body and head are also signs of healings. a lot of people get scared when they have muscle twitches but i welcome them. and i agree with you that for us c/t kindling folks it could be between 2-3 years or maybe more for total and complete healing. i may be looking at between 3-5 years or more.

i'm having a bad time lately because i am still non functional and not able to get the rest i need here in this noisy house with my family. i need a ton of rest still.

My last benzo treatment was 1 month of alprazolam (0.25 mg), followed by a few weeks gap and then 0.5 mg clonazepam (for 3 months, tapered to 0.25 and 0.125 over 2 months and then jumped off), 4 months total in this case.

In the past from what I remember it was never more than 0.5 mg (clonazepam, alprazolam) and never longer than 2 months duration at a stretch, with few months gap and other a/ds in between.

I would struggle with the w/d headaches and fatigue and ask for help and they would hand out clonazepam after trying a few anti-migraine pills which did not improve the aches, so I ended up cycling on-off benzos and a/ds without knowing what was the real cause of the pain.

3-5 years for total healing with no symptoms at all, maybe, but I hope that we be functional and independent before 3 years off.

I can understand about the noise, I live with a loud noisy person in the family, not getting rest when we need it is exhausting.

best wishes!

I can understand about the noise, I live with a loud noisy person in the family, not getting rest when we need it is exhausting.

you do too! it is very exhausting. what does your loud family member do? my brother goes in and out of the front door every 45 minutes to smoke his cigarette and i rest on my couch in the living room just above where i can hear the door open and close all day long. he smokes about 20 cigs per day so he starts at 9:30am and goes until 1:45 am  it's absolutely maddening. i need to find another place to live but i am still so non functional. i still can't even think about working.

well, i have a really long and detailed history with large dose's of benzo's (mostly klonopin) and for the last ten years i had been doing many rapid tapers and cold turkey's one after the other. that's how i believe a true kindling happens. each withdrawal gets worse and worse and kindles the brain. i am still with severe brain squeeze's and vibrations.

Great idea Pretty to start this group.

I am close to the 2 years mark as well, detox is a pain in the neck.

If kindling means one is still half dead, then yep, i guess i am kindling as well.

what a joke, 

He screams on the phone, speaks loud in general, makes irritating loud noises when playing with his pet, picks up a fight and argues with others at home for silly reasons (narcissistic sadistic type) just to get attention and generally creates a toxic atmosphere. Sometimes I've thought about reinstating just out of frustration from living here so I can get out, find a job and rent a place and live peacefully by myself, horrible feeling living with an obnoxious person.

I've read your signature in the past, I'm scared to imagine if I could take such high doses of powerful meds like benzos and opiates and get this far, you are really brave, multiple cold turkeys is a sure way to get the nerves kindled that's what I believe too.

I'll continue to update here on my symptoms in the coming months to give an idea how things are progressing.

I'll continue to update here on my symptoms in the coming months to give an idea how things are progressing.

good, i will like to see your progress. yes, i have been on large amounts and have cold turkey'd many times from large amounts. actually i am surprised i am doing as well as i am. i should be way dead by now.

narcissistic people are very trying to live with under normal circumstances let alone benzo withdrawal. mother is NPD and i have to show a ton of containment. it's not worth reinstating over. soon you will let it all just roll off your back and find your own place. i hope the same for me. i lose a ton of rest because of the NPD disorder. they always have to have some kind of toxic drama around them at all times. not good for someone trying to heal from benzo withdrawal. i don't know how i am doing either?

I would like to hear if anyone on here who has kindled and healed....29 months and pain is still going strong

Hi all,

Thanks Pretty for telling me about your group.  I'm not sure I belong here though.  Maybe I do.  If kindling means your brain/NS is now too sensitized by drug taking and stopping, to be able to handle much of anything, including B vitamins, sugar, caffeine, and especially other drugs. Then I'm kindled.

But its only been 16 months since I haven't taken anything stronger than an aspirin.

I was on SSRIs for over 13 years, mainly Zoloft and Lexapro. They weren't helping all that much with anxiety, but I couldn't stop taking them, didn't know about slow tapering, I would just stop, feel awful a week later and have to start again.  I did finally manage to get off the Lexapro, first in late 2010, then again in early 2011.  I had gone back on it because of stress.

But I was in protracted withdrawal and didn't know it.  I got diagnosed with ADHD and started taking stimulant meds for that.  Maybe that's when the kindling started, because I was reacting badly to those.  Then I started taking xanax occasionally, which I'd never had a problem with before, but I started to get rebound anxiety.  Its difficult to remember the details, but I think I took xanax daily for about 3 months, mostly at night so that I could get a few hours sleep. 

I didn't know what I was doing, was trying to survive, taking these drugs like as if they were aspirin, trying to manage symptoms so that I could manage my life.  In May 2013 I found another site which supports people coming off antidepressants and learned what I had been doing to myself and stopped everything.  A few months previously I had tried to go back on Lexapro, but just a quarter of my previous dose had made me suicidal in 3 days.

I think this is kindling.  It got really bad after I started taking xanax more often.  I remember Christmas 2011, I was taking small doses of it throughout the day so that I could get through the occasion.  Then the next day I didn't take any, but felt like I was dying and didn't understand why.

I'm not completely bedbound/housebound, but most of my life is spent on my bed with computer.  I only leave the house when absolutely necessary, to get groceries.  TV, music, bright lights and most noise is too stimulating.  Last week I ate 2 small pieces of chocolate and some food which possibly had some msg in it and for several days I felt like I was bordering on being psychotic.

Its frightening to be this sensitive.  I've avoided going to the doctor or dentist for almost 2 years.

my brother goes in and out of the front door every 45 minutes to smoke his cigarette and i rest on my couch in the living room just above where i can hear the door open and close all day long. he smokes about 20 cigs per day so he starts at 9:30am and goes until 1:45 am  it's absolutely maddening.

 

When I was in early withdrawal, I used to live with someone who did this.  I didn't have my own room and slept on a mattress in the living area of the house.  He was a shift worker and was often awake all night, going in and out while I was trying to sleep.  But then he stopped going outside and would sit inside smoking, that was worse because of the smell.  It was his house, so I couldn't say anything, I had to get out.  Thankfully, I now live alone with my teenage daughter where I have more control over my surroundings.

SeraBear,

if you're that sensitive to the B vitamins, sugar, caffeine and other drugs - you may be kindled. and if you became psychotic after the MSG that too could be another way to know if one is kindled. i became psychotic after having some melatonin that had some GABA in it. i think it was the GABA because i am okay when i take melatonin by itself.

here is the Wiki descriptions of kindling withdrawal:

http://en.wikipedia.org/wiki/Kindling_%28sedative-hypnotic_withdrawal%29

also, let me describe my long term detailed history which may make more sense of how a person can really become kindled.

when i first started benzo's in the 90's i was a periodic for awhile and then the last 5 years i actually got up to 200mg valium, 20 mg klonopin, 30 vicodin. i had to take this amount every day to support my habit and interdose withdrawal don't ask me how i took that much or how i am still alive?

i also wrote my own prescription for 5 years because i had to write 3 prescriptions a day. i worked in Doctor's office and Radiology to take the prescription pads. i finally got busted thank God and went off to jail. yes i had a seizure when i didn't have any of my meds to take. somehow i got off all of that became clean and sober and started going to AA meetings.

i was clean and sober for 7 years. in the 7th year i started having some very weird and horrible neurological problems. i had no idea that it could have been from all the benzo's and other drugs i was on before. i got diagnosed with MS and they put me back on klonopin. i thought i would be able to control it and not get caught on it but that wasn't the case. after about 1 1/2 years of taking it as prescribed i started taking a lot -- about 22mg klonopin and i was also back on bunches of vicodin and a vicodin cough syrup of which i was very addicted to.

so i got scared and started trying to taper from the klonopin and opiates in 2004. it was one rapid taper from another. i would rapid taper and then go back up again. and i would do this for 9 years. in 2005 i started going into detox to try to get off both benzo's and opiates. the doctor in the detox got me on suboxone and i would be between taking suboxone and vicodin and the vicodin cough syrup. it was just such a mess. it would be back and forth and every single January i would go back into a detox and do another cold turkey from both the benzo's and opiates. and i mean, large dose's of both. it was one cold turkey after another., and then that wouldn't work so i'd reinstate and try the whole year to taper from both yet again.

that's some major kindling.

so this last cold turkey i had rapid tapered from about 3mg klonopin (sometimes it would be up to 6mg) over a period of 3 months and then i was on 30mg valium, 2 mg xanax and 1750 mg soma and that is what i did the cold turkey from. and still to this day have no idea how i survived it? but i did, and hopefully i am healing. Uggg, now i don't feel so good right now writing about all of this has made me quite nauseated.

anyway, that's a major kindling and i can feel the kindling in my brain. it just seems so revved up all the time and it's forever squeezing with this horrible vibration that runs through it. hope that i am healing from this.

oh and i tapered very slowly from the suboxone and now completely med free.

Pretty,

Thank you for telling me about this. I think it will be helpful.

jc

Pretty,

You've been through a lot, thank you for writing about it, I'm glad you survived and are recovering now.  I still don't know for sure if I've got kindling, but I'm very sensitive and react badly to many things I was fine with before.

SB

Hello.

Good idea to start this support post for

us kindlers. Thanks Pretty! Just reading

through I am a definite for kindling & the

sensitivities that go with it. Any food/drink

with any kick in it; caffeine, spices, garlic,

MSG, sugar, vitamins, chilli, just to name

a few. My sensitives also include violent

TV content, loud noise, negative personal

interactions, crowds, pushy individuals, too

much computer time and many others.

Some are so weird (& unpredictable!) that

I don't really like to mention.

My benzo/medication timeline has many

cold turkeys from a variety of drugs, taken

mostly to combat chronic back pain. However,

now as I have a better understanding, I was playing

a 'sick' game of medical ping-pong. In essence

I was a medical experiment upon which I put

too much trust in too many doctors, naively

thinking that there was some method in their

approach.

Other than valium (4 years!) these include

tramadol, oxycontin, gabapentin and panedeine

forte. Almost all of these I abruptly withdrew

from. Others I undertook a rapid taper. And now

I am, together with you all, waiting out time,

trying to survive the consequential side effects.

Thanks for sharing your personal journeys.

Pete

hi pete,

nice to see you!

i think you might be the longest out on this thread. have you noticed any improvements at all? i sure hope so.

Hi Pretty.

Some noticeable improve this last six

months but lately I have returned with

difficult symptoms.

Anytime I push life, or even the anticipation

of such, I seem to be kicked back into

symptomatic overdrive. Today is such a day.

I attempted a coffee mid-week & that

has left me feeling highly sensitised.

I should have known better but sometimes

I have an overwhelming urge to challenge

my delicate situation. And, as is the case

here, I mostly end up on my backside.

Yep, four years off benzos now, and

I have improved. I am working 10 hours

a week, which is sometimes a struggle,

but a major achievement in terms of

my recovery journey. I am a teacher & now

only work with small groups or individuals.

Any large classroom work is beyond me.

So, as with everything, there is now often

small adjustments to how I operate in the

world. Otherwise I am too easily overwhelmed.

Occasionally I think that this might be ongoing,

or at least a long time, but hopefully as time

passes not so incompatible with a meaningful

engagement of life.

I am slowly (& reluctantly) learning not

to be attached to any specific timeline.

Benzo withdrawal makes its own time.

Kindling days indeed!

xPete

Completed 25 months...list of symptoms at present...

persistent s/x that last 24/7->

severe head pressure - burning, squeezing, pulling, tight band, twitching. my scalp muscles spasm a lot these days, they pull and get tight and then release -repeatedly

insomnia - lucky if I get more than 4 hrs a night, usually it's less than that, sometime 2+3 hrs with few hours gap in between

dr/dp - dark depressing oily vision, sometimes blurry too, gets worse and more noticeable with physical activity

fatigue - tired all the time, culprit seems to be the adrenal system

foot pain - nerve pain in left foot, gets worse when I walk.

wavy symptoms ->

dry mouth, throat

burning inside legs

nausea - feels like I might vomit after physical activity

anxiety - gets bad in social situations especially when I have to talk, also by noise and other stimulation outside

GI issues

depression, suicidal ideation

rage, agitation

tightness around belly

Will add more if I can recall.

Yesterday while speaking to my neighbours in a group I started to feel severe anxiety, my legs and arms were shaking, speech was slow and confused, voice was shaky and weak, heart racing, head pressure got worse, was  looking for reasons to excuse myself.

I've also started to worry more about the future - job, relationships etc, like I'm more aware of the things that I'm missing and should be doing, but can't do anything about it, the sense of urgency about time is quite strong.

hurtbrain,

i have pretty much everything you just described and the same exact time out. just finishing my 25th month and headed toward the 26th month. actually the last few days the brain squeeze's and vibrations have been just a little better so i'm hoping for continued improvement with that.

but i still have:

severe head pressure, brain squeezing, brain vibration and other brain (glutamate activity) s/x

dry mouth and throat to where sometimes out of the blue i will just start choking and it's a bad choking where i cannot breathe

dr/dp -- i woke up from a nap yesterday with some depression and i usually do not have depression.

i have fatigue but it's coupled with feeling amped and wired which affects my sleep

i had a little over a month with severe insomnia to where i was going insane but it has eased up with broken sleep,

i'm happy if i can have about 20 minutes straight sleep with a dream (REM) just a little that's how bad it was.

my brain still can't stay under in that slow (deep 4th stage) sleep stage/wave.

but i have been having a few out of body (Astral Projection) experiences again which feels really really peaceful and a nice break from being in the physical body. i have had many out of body experiences for many years but couldn't have them for over 2 years since this last cold turkey and just started having them again -- i hope that is because my brain is healing.

and still have:

constipation

bladder irritability - i always feel like i have to pee but then i just sit on the toilet for a long time until something trickles out.

and then sometimes i won't be able to hold it.

tightness/squeezing around belly, torso, chest, knees, legs, feet (horrible full body neuropathy at times)

and i'm sure a lot more but feeling just a tiny bit better the last 2 nights so hanging on to that,

i too worry about the future and pretty much freak out when i think about working again. i literally haven't worked in about 12 years because of the long tolerance withdrawal and now trying to heal from the cold turkey. i will have to ease into it gradually and i will have to be having many windows.

i'm so sorry you are still feeling all these horrible symptoms.

i sure hope month 26 will lift a lot of our symptoms. another buddie that i talk to frequently said that was the month where he felt a lot of things lift. so hang in there!

pretty

Yes pretty. Hoping for some progress in month 26. We just have to get through this time no matter what.

The only real OOBE I had was in my acute w/d. Felt like my soul had left my body and was staring at me confused, waiting for me die, not able to decide if it should go back inside my body, with a bunch of crows outside waiting to feed on my carcass, that was too scary. Never knew it could be a pleasant experience as well like in your case.

take care.