Kindling

Hi.

Could anybody explain kindling to me. Do everybody get it, or only a few and what are the symptoms.

 

Thanks

According to the Ashton manual, if you fail your taper, you can always try again. Some people quitting smoking use up to 8 or 9 times before they succeed.

So is that what it means? Failing your taper?

Some people says it gets worse for each taper you restart.

Kindling is the phenomenon where repeated withdrawals make successive withdrawals more difficult.  It has been demonstrated with alcohol, but is not well documented with regards to other drugs, like benzos. 

 

And no, it is NOT universal, even among alcoholics.

Thanks Builder.... Was confused ..cheers

I suffered very badly from increased sensitivity of the nervous system due to knob-end doctors putting me on different psych drugs for my imaginary withdrawal. Still remember them promising my parents they could take me off 7.5mg diazepam over 2 weeks, on condition they load me up with antipsychotics. I managed to reduce the kindling significantly with a daily microtaper of the diazepam.

Kindling due to substance withdrawal, refers to the neurological condition which results from repeated withdrawal episodes from sedative-hypnotic drugs such as alcohol or benzodiazepines. Each withdrawal leads to more severe withdrawal symptoms than the previous withdrawal syndrome. Individuals who have had more withdrawal episodes are at an increased risk of very severe withdrawal symptoms, up to and including seizures. Withdrawal from GABAergic acting sedative-hypnotic drugs causes acute GABA-under-activity as well as glutamate over-activity which can lead to sensitization and hyper-excitability of the central nervous system, excito-neurotoxicity and increasingly profound neuroadaptions.

I don't think this is the case for everyone. I have withdrawn several times. It's been bad, but not getting worse for each time.

How can Ashton who is a major professional in this field say that if you fail once you can try again and again

How can Ashton who is a major professional in this field say that if you fail once you can try again and again

Hi Miriedl,

 

I'm on my fourth (and last!) benzo withdrawal in 40 years. The first one was CT after 8 years on up to 30mg of V a day and happened in the early 1970's before it was widely known that you needed to taper off benzos slowly. It was horrendous. My second w/d occurred 30 years later, after about only a year on a low dose of Ativan (only 1 mg/day) and I did the Asthon A to V substitution x/o protocol so, due to excellent medical and psych support, I was lucky that is was really very easy. My third w/d, which I only recently (within the last year) realized WAS acute CT benzo w/d, was accidental due to being in the ICU in hospital where I was given massive doses of Cipro, a Fluoroquinolone antibiotic, along with heavy doses of NSAIDs, (a combination which is now well known for causing severe neurological issues for many patients who are also on benzos) for a couple of months while still taking my relatively low dose of Ativan. It took me a LONG time (about 3 years) to start to recover but I thought the protracted sxs were from my hospitalization and illness (caused by surgery gone very wrong) so I did not realize what had happened. My then doc's idea to "fix" things and help me feel better during that time period was to put me on higher and ever increasing doses of A and I ended up in tolerance and interdose w/d and feeling pretty awful.

 

This time when I knew I wanted to get off the benzos and could find a neurologist to help me control my seizure migraines better without having to take benzos, I thought my A to V x/o via Ashton was going to be another relatively easy taper like the Ashton taper I had done before. However, my new primary doc and I realized things were not going very well this time around, so I was referred to a great psychiatrist. By looking through my records together, we realized that I had been in C/T w/d while in hospital AND I was now on my 4th w/d AND that I had been up dosing and down dosing for several years, so we concluded that part of my problem with this taper is probably related to "kindling" of an already sensitized CNS.

 

I think what Ashton is saying is that people who try to w/d from benzos and fail, can and do try again (sometimes several times) until they succeed — and there are plenty of studies and anecdotal evidence that support this. However, I'm not sure if kindling from benzo w/d was a known consideration at the time she wrote that, while it has been a known phenomena of alcohol w/d for years. As someone pointed out, a there are researchers (and benzo users) who question whether kindling from benzos is "real" and, since not everyone experiences it (just as some people experience very few w/d sxs from benzo w/d at all, whether it's their first or fifth w/d), "kindling" as a problem from benzos has not been widely recognized outside of the "benzo world". My pdoc, who has been looking into it, believes kindling from benzo w/d is very real given certain circumstances and certain populations of patients. Unfortunately, neither he nor I have ever seen anything that provides any real help for dealing with kindling other than 1.) It's probably best NOT to go through too many w/ds if you can avoid it 2.) going v-e-r-y slowly with w/d might — or might not — make things easier for those who seem to have "kindling".

 

Again, I feel I should stress that not everyone seems to experience this as it seems to be related more strongly to specific patient populations and even those who DO have kindling can and do heal. For me, it was EXTREMELY helpful (but a bit scary) to learn about kindling since it has helped me deal with the challenges I am having in w/ding this time around AND made me absolutely adamant about getting off and staying off benzos and similar meds in the future.

 

Here is a link to wikipedia about kindling from sedatives and hypnotics. I think it does a good job of explaining the basics. http://en.wikipedia.org/wiki/Kindling_%28sedative-hypnotic_withdrawal%29

 

Best,

 

Mo

Mo,

 

good to read some of your story. i believe i am kindling too. same story as you but only about 12 c/ts in my whole life. had been off benzo's 7 years but then got back on with up dosing and down dosing and one detox after another for 9 years. i tried to taper that whole time but couldn't so had to c/t to get off. do you have any suggestions for me to help the kindling other than time and not taking anymore benzo's, psyche drugs or any other gabaergic suppies?

 

thanks, Pretty

There are so many theories on the web. I just don't know what to believe. I've been reading different stories now the last three hours.

 

I know many of you have problems, then again many don't.

 

Kindling seems to be a problem for only a few people (... or could there be other reasons)

 

I don't want to put anyone down as all the symptoms most definitely must be real.

 

I've had so many bad days myself, so i know it's not easy.

 

But these questions still linger in my mind:

 

1. Is kindling happening to a majority or a minority of people.

 

2. Does updosing cause relief or create greater problems

 

3. Will the abstinence level out between cuts.

 

There seems to be no one answer to these questions as we all are different.

 

There are many things here that scare a lot of people (maybe unnecessarily)

 

 

miriedl,

 

those are good questions that i would like answers to myself.

 

Mo,

 

i had started a kindling support group thread awhile back if you're interested.

 

http://www.benzobuddies.org/forum/index.php?topic=117127.0

Mo,

 

good to read some of your story. i believe i am kindling too. same story as you but only about 12 c/ts in my whole life. had been off benzo's 7 years but then got back on with up dosing and down dosing and one detox after another for 9 years. i tried to taper that whole time but couldn't so had to c/t to get off. do you have any suggestions for me to help the kindling other than time and not taking anymore benzo's, psyche drugs or any other gabaergic suppies?

 

thanks, Pretty

 

Hi Pretty,

 

I am certainly no expert and am still trying to wrap my head around the whole "kindling" issue with benzos, but it does sound like it's possible you could have some "kindling" as from reading your story, it looks like you have had a fair amount of off and on use and several CTs...but, I think it's really hard to say for sure whether you, or I, — or any of us — actually has "kindling".

 

My pdoc theorizes that the subset of patients who are most likely to experience "kindling" are probably those who have: more CT w/ds; a history of off and on use; a history of being on more than one benzo or other sedative/hypnotic or psych meds; those that have a history of chronic alcohol use or a history of binge drinking in addition to benzo use. He also thinks there are some individuals who are just more susceptible to kindling due to their genetic make-up and environmental exposure (i.e. a particularly stressful childhood may, or may not, prime the brain and neuroendocrine system to be extra sensitive to benzos, alcohol, etc., due to an already stressed system). There is also some limited research suggesting that individuals exposed to these meds during critical brain development (such as people like me who were put on benzos for seizure control at a young age — I was 11 when I first started benzos) may be at particular risk for kindling and/or may have differences in actual brain development due to the exposure to these and other similar drugs during critical brain development, which may continue in various stages until about age 25!

 

So it seems what is "known" about possible "kindling" from benzos is all a bit of a soupy mess at this point, BUT, I do feel that just being aware of "kindling" as a possible issue has been helpful to me, and given my recent experiences, I do believe I may be experiencing it, as does my pdoc, whom I like and respect very much.

 

I have sort of divided my research into this area into two categories: 1.) what might make my w/d sxs and experience easier to deal with and safer; and, 2.) what might be "brain protective" for me in the long run as I go through the w/d and beyond. I have seen a few studies and read numerous anecdotal evidence that suggests for those with possible "kindling", slower might be better for both easing sxs and avoiding protracted w/d syndrome, but again, I think there is a lot of individual variation in this. In addition, I have seen all sorts of supplements touted as being helpful for easing sxs and providing "brain protection", as well as a few medications including Acamprosate (Campral), which I am currently looking into due to the supposition that, in alcohol "kindling" at least, there might be some brain protective action from using this drug. But, I really don't have any info that I feel is solid at this point so I'm afraid I have really have nothing to add to what has already been said. I would like to see more research and discussion on this subject, however, especially given that more and more of our young children are being provided with a variety of medications at a time when their brains are still developing.

 

Just remember that there are many people who have done numerous C/T w/ds over long periods of time and used various other drugs and alcohol and even if they do have "kindling" it seems if they hang in there, the are healing regardless, so I figure that is the good news!

 

Best,

 

Mo

 

P.S. I will be seeing a neurologist in the next month or so who will supposedly be discussing all this in general, and my own history in particular in an effort to make my current w/d as easy and least damaging as possible. However, due to all the variables, lack of research in general, and often contradictory nature of benzos, especially in this area of "kindling", I don't know how much useful info I will be able to get. The neuro-doc will also be checking me again to make sure I don't have anything else weird going on that might be causing the challenging sxs this time. I will report back to the kindling support group for which you provided the link if I learn anything helpful!

There are so many theories on the web. I just don't know what to believe. I've been reading different stories now the last three hours.

 

I know many of you have problems, then again many don't.

 

Kindling seems to be a problem for only a few people (... or could there be other reasons)

 

I don't want to put anyone down as all the symptoms most definitely must be real.

 

I've had so many bad days myself, so i know it's not easy.

 

But these questions still linger in my mind:

 

1. Is kindling happening to a majority or a minority of people.

 

2. Does updosing cause relief or create greater problems

 

3. Will the abstinence level out between cuts.

 

There seems to be no one answer to these questions as we all are different.

 

There are many things here that scare a lot of people (maybe unnecessarily)

 

Hi Miriedl,

 

I do understand it's hard to know what to believe and I can only say that I think you have to believe in YOUR OWN experience and use the information provided by others and the info from research to help guide you when it resonates with your own experience. I have come to the conclusion that there is no ONE right way to do this — I see soooo many different people getting off benzos in soooo many different ways and most, if they hang in there long enough, are successful, regardless of the method they use — with a few exceptions where people have had really bad luck or gotten really bad medical/psychiatric care or just not received the support they needed or have not been able to follow through. So, while "kindling" may or may not be an issue, I think with benzo w/d you just have to keep doing what seems sensible to you and if it's really not working, then try something else, but be aware that it may take some time — and possibly some extra time if, indeed, you are experiencing "kindling". In addition to what I just posted in response to Pretty here are my non-proefsssional answers to the excellent questions you raised:

 

1. It is possible that we see more people on BBs who might be experiencing kindling because if they were not having issues, they probably would not be here on this board. In addition, based on "patient populations" it might be possible that more people are experiencing "kindling" because of the tendency to "poly-drug" patients now days; the exponential increase in use of more medications in younger children and adolescents and the wide spread use of many more types of benzos being available in the last 20 years. However, I still don't think I would say that that majority of people have "kindling". From my own limited research, I think I agree that is appears to be more likely to occur in subsets of patients who fit certain criteria — but it certainly does not happen to all patients who fit that criteria. I do think that by it's very definition, if "kindling" is actually occurring in people in benzo w/d, those people would need to fit certain criteria such as repeated w/d or have a history of poly drug use or alcohol binging. I don't think someone on their first w/d would be likely to be identified has having "kindling".

 

2. Updosing is another tricky subject and I am not sure how it would relate to "kindling" as I think of "updosing" as a relatively temporary situation and "kindling" as a result of a more long term situation. Like you, I wonder about whether or not updosing to counter act tolerance w/d would cause "kindling", but it is my understanding that updosing for a short term during w/d to correct a cut that went bad may be helpful, rather than harmful. That being said, I have updosed a couple of times and in one circumstance it helped and in the other the issue for which I updosed (elevated heart rate and high blood pressure) resurfaced just 3 days after I updosed so in that case it didn't work. From things I have read, it does seem that patients who spend a number of years going up and down on their doses like I did (I was on a daily "maintenance" dose of 1.5mg Ativan to stop seizures migraines, but due to tolerance I would start to get them anyway so would add an extra 2-3 mg of Ativan on days when I felt them coming on and I did this sometimes several times per week for several years, so I really was going up and down on my dose in a pretty crazy way that may have triggered "kindling" since that is somewhat akin to "binge drinking" with alcohol) may be more susceptible to "kindling", but notice that this is over a longer period of time than a correctional updose during a taper.

 

3. I can only assume that OVER TIME the slower, even taper will allow the GABA recpetors to regrow and re-regulate themselves when doses are more stable (even while cutting and experiencing sxs), and the rest of the body to heal. I am assuming that is what happens eventually to those who do have successful tapers (no matter how many times it took) and go on to heal their bodies and their lives.

 

Best,

 

Mo

Mo,

 

good to read some of your story. i believe i am kindling too. same story as you but only about 12 c/ts in my whole life. had been off benzo's 7 years but then got back on with up dosing and down dosing and one detox after another for 9 years. i tried to taper that whole time but couldn't so had to c/t to get off. do you have any suggestions for me to help the kindling other than time and not taking anymore benzo's, psyche drugs or any other gabaergic suppies?

 

thanks, Pretty

 

Hi Pretty,

 

I am certainly no expert and am still trying to wrap my head around the whole "kindling" issue with benzos, but it does sound like it's possible you could have some "kindling" as from reading your story, it looks like you have had a fair amount of off and on use and several CTs...but, I think it's really hard to say for sure whether you, or I, — or any of us — actually has "kindling".

 

My pdoc theorizes that the subset of patients who are most likely to experience "kindling" are probably those who have: more CT w/ds; a history of off and on use; a history of being on more than one benzo or other sedative/hypnotic or psych meds; those that have a history of chronic alcohol use or a history of binge drinking in addition to benzo use. He also thinks there are some individuals who are just more susceptible to kindling due to their genetic make-up and environmental exposure (i.e. a particularly stressful childhood may, or may not, prime the brain and neuroendocrine system to be extra sensitive to benzos, alcohol, etc., due to an already stressed system). There is also some limited research suggesting that individuals exposed to these meds during critical brain development (such as people like me who were put on benzos for seizure control at a young age — I was 11 when I first started benzos) may be at particular risk for kindling and/or may have differences in actual brain development due to the exposure to these and other similar drugs during critical brain development, which may continue in various stages until about age 25!

 

So it seems what is "known" about possible "kindling" from benzos is all a bit of a soupy mess at this point, BUT, I do feel that just being aware of "kindling" as a possible issue has been helpful to me, and given my recent experiences, I do believe I may be experiencing it, as does my pdoc, whom I like and respect very much.

 

I have sort of divided my research into this area into two categories: 1.) what might make my w/d sxs and experience easier to deal with and safer; and, 2.) what might be "brain protective" for me in the long run as I go through the w/d and beyond. I have seen a few studies and read numerous anecdotal evidence that suggests for those with possible "kindling", slower might be better for both easing sxs and avoiding protracted w/d syndrome, but again, I think there is a lot of individual variation in this. In addition, I have seen all sorts of supplements touted as being helpful for easing sxs and providing "brain protection", as well as a few medications including Acamprosate (Campral), which I am currently looking into due to the supposition that, in alcohol "kindling" at least, there might be some brain protective action from using this drug. But, I really don't have any info that I feel is solid at this point so I'm afraid I have really have nothing to add to what has already been said. I would like to see more research and discussion on this subject, however, especially given that more and more of our young children are being provided with a variety of medications at a time when their brains are still developing.

 

Just remember that there are many people who have done numerous C/T w/ds over long periods of time and used various other drugs and alcohol and even if they do have "kindling" it seems if they hang in there, the are healing regardless, so I figure that is the good news!

 

Best,

 

Mo

 

P.S. I will be seeing a neurologist in the next month or so who will supposedly be discussing all this in general, and my own history in particular in an effort to make my current w/d as easy and least damaging as possible. However, due to all the variables, lack of research in general, and often contradictory nature of benzos, especially in this area of "kindling", I don't know how much useful info I will be able to get. The neuro-doc will also be checking me again to make sure I don't have anything else weird going on that might be causing the challenging sxs this time. I will report back to the kindling support group for which you provided the link if I learn anything helpful!

 

 

Mo,

 

i definitely know that i am kindling. i can feel it in my brain. you know what a kindling fire looks and sounds like? that's exactly what my brain feels and sounds like. it's been 32 months and i am still with very severe head/brain symptoms. they are my worst symptom by far.

 

i took my first benzo (valium) at 15 years old. i took my first drink of alcohol at 13 years. old. i drank kinda like binge drinking all through my teens and 20's. i was on benzo's and opiates for 15 years from and the last 5 of those 15 years i got up to 200mg valium, 20mg klonopin, 30 vicodin. i was such a bad case that i literally had to write my own prescriptions. i worked for doctor's and took their pads and wrote my won scripts for 5 years. i had to write 3 scripts daily for my dependency and yes i did finally get caught thank God. i did have a seizure though but somehow i got off everything including alcohol for 7 years and was in AA for awhile.

 

in my 7th years being clean and sober i started experiencing very disturbing neurological symptoms that scared me and i had no idea that it could have been a setback from being on benzo's the first time so i went to a few neurologists and took all the tests and they diagnosed me with MS -- and put me back on klonopin of which i had large dose's and did a lot of up dosing and tapering too fast for the next ten plus years until this last cold turkey in 2012. i have done 12 c/t's in my whole life and that is just way too many. --  i could have still been healing from the benzo's but i had to do it all again because i didn't know anything about benzo's. and during that time i was on a lot of different benzo's (mostly klonopin) and intermitent use of large dose's of soma and opiates again. i really don't think i even have MS.

 

i am off everything now but still quite a mess. still house bound after 32 months and still mostly couch bound. i do think i am healing but it's ever so slow and sometimes i feel this could take me a lifetime. i am so sorry i had to do this to myself. i love my brain and i want it to be perfect again. i sure hope that neuroplasicity does exist and i am going to read Norman Doige's books "The Brain that Changes Itself" -- God, i hope it exists.

 

i was also going to look into Campral but haven't been well enough to even go to my pdoc to talk about it. if you find out anything else about it and if you start taking it and it does you good, please let me know? so you have heard that it's neuroprotective for the brain? i had heard that it helps to mop up the excess glutamate. are you still tapering from valium or ativan or both? how is your taper going? there is another buddie on here named Mozart8181 and she is having a really tough time and really could use some help with her taper. i really love the way Ellen2012 has done her taper using both klonopin and valium and asked her to be in touch with Mozart.

 

yes, join me on the kindling thread if you'd like and i definitely wish to hear more about the Campral.

 

Pretty