How do you know if kindled?

I see people say they are kindled.

 

Can I ask what exactly it means and how people know they are kindled?

 

What does it mean in terms of tapering and getting off drugs?

 

 

Kindling is a phenomenon resulting from repeated withdrawal episodes from alcohol/benzos/etc.

Each withdrawal leads to more severe symptoms than in previous episodes.

The only solution seems to be tapering at a slower rate.

Yes, but not everyone who repeat withdraws kindles do they?

 

I CT’d for no more than a couple of weeks twice last year before realising a I had to taper.

 

Then tapered too fast and had to reinstate.

 

I have no idea if this applies to me.

 

 

It means that once you are off of these drugs, you need to stay off of them.

 

I don't think this theory has been proven but there is a ton of anecdotal evidence that says it's a real phenomenon.

Yes, but not everyone who repeat withdraws kindles do they?

 

I CT’d for no more than a couple of weeks twice last year before realising a I had to taper.

 

Then tapered too fast and had to reinstate.

 

I have no idea if this applies to me.

 

You are the one who decides if this applies to you or not.

Hi Ajusta,

 

It is very real. 

THere are some very common symtoms that occur with neuro-kindling.  Some of these overlap with tolerance.

 

Intense neuropathic or nerva pain is one such symptom

Having an aura that you are about to seize (it’s a very strange sensation)

 

I read your signature and you are doing it right.  You are maintaining  steady state on a long half life Benzodiazaphine.  I do see that you used a z drug.

Combining a single dosing/day short acting Benzodiazaphines with a z drug is how i got neuro kindled.  For anyone reading this, please try to avoid this.

 

The good news is that you can heal from this, but it takes a long time.  For me it was around 14 months into the slow taper.  We are all different.

 

Once you begin to heal from the kindling, your body will be much more able to heal from the withdrawal and the tapering itself, and you will be able to get off the remaining Benzodiazaphine. Until then you have to be patient.

 

I hope this helps a bit,

Dm123

Thank you!

 

I think I know the ‘aura’ sensation. I think I have something like that quite often but don’t have proper seizures. I seem to have a lot of those very peculiar, uncanny, extremely odd and disturbing sensations like head dissolving feelings etc. Impossible to describe as you know.

 

Can I ask what you mean by ‘a steady state’?

 

Atm when I take my diazepam I initially feel worse then feel a bit better for about an hour or so then start to feel worse again. If I leave it an extra hour a I start to feel a bit better but too long and symptoms start to ramp up.

 

If I take dose at four hour mark I go through it all again.

 

So going through that four times a day atm.

 

Mostly feel a bit better in morning once am past the vibrating/anxiety bit and then take dose and things get worse from there.

 

I think I’m still in the withdrawal I was before reinstated and only thing stopping the full blown 24/7 dystonia, terror of touching and looking at anything and feeling like my brain is dissolving and That ‘I am in the process of dying’ feeling and all the other horrendous stuff.  Is the fact that there is still some diazepam in my system.

 

I can only hope that it doesn’t get as bad as last time which was quite literally unbearable - hence reinstatement.

DM123 you seem to know a fair bit about kindling - I have similar queries to Adjusta so just following this thread for advice...

Recently updose yo try stabilize and work out how to taper and if I’m in tolerance etc...

So lost and docs don’t have any answers, not sure how long to hold or what to do 😳

 

Adjusta hope ur feeling better? X

Thanks D-Train.

 

I am at least not as bad as yesterday which was the pit of hell.

 

Hope you are hanging on in there.

Thank you!

 

I think I know the ‘aura’ sensation. I think I have something like that quite often but don’t have proper seizures. I seem to have a lot of those very peculiar, uncanny, extremely odd and disturbing sensations like head dissolving feelings etc. Impossible to describe as you know.

 

Can I ask what you mean by ‘a steady state’?

 

Atm when I take my diazepam I initially feel worse then feel a bit better for about an hour or so then start to feel worse again. If I leave it an extra hour a I start to feel a bit better but too long and symptoms start to ramp up.

 

If I take dose at four hour mark I go through it all again.

 

So going through that four times a day atm.

 

Mostly feel a bit better in morning once am past the vibrating/anxiety bit and then take dose and things get worse from there.

 

I think I’m still in the withdrawal I was before reinstated and only thing stopping the full blown 24/7 dystonia, terror of touching and looking at anything and feeling like my brain is dissolving and That ‘I am in the process of dying’ feeling and all the other horrendous stuff.  Is the fact that there is still some diazepam in my system.

 

I can only hope that it doesn’t get as bad as last time which was quite literally unbearable - hence reinstatement.

 

Hi Ajusta,

 

For me the aura was a feeling like the inside of my brain was buzzing and short circuiting, if that makes any sense.  I also “felt” like my eyes were ready to roll back.  This typically occurred with minor stress.  Hyperexcitability.

 

I know some have trouble with the valium itself.  It does not agree with them.  It looks like it is keeping you stable, but your body is seeing the drug  itself as toxic.

 

You and I are on both very low dosages ( mine is librium) and it might be withdrawal as you say.  I feel the effects of each cut as withdrawal symtoms but acclimate after around 26-34 days.  Each of us is unique in this respect.

DM123 you seem to know a fair bit about kindling - I have similar queries to Adjusta so just following this thread for advice...

Recently updose yo try stabilize and work out how to taper and if I’m in tolerance etc...

So lost and docs don’t have any answers, not sure how long to hold or what to do 😳

 

Adjusta hope ur feeling better? X

 

Hi D-train,

 

I’m sorry you are going through this.

I don’t know if you are kindled or if it is just wd, but until you feel right, don’t start cutting.  It’s not worth the risk.

 

Dosing 3-4 times a day is good, and you don’t know it yet, but you are healing at that steady state.  Just doing that alone is doing your nervous system a tremendous benefit.  It’s relieving a lot of the “stress” on your nervous system, that occurred with single dosing high potency benzos.

 

I’m now at a low dose and was able to transition to single dosing the librium at an 8 mg valium equivalent

I’m currently at a 3 mg valium equivalent of Librium

 

Once you start healing you can go to 3 xs a day, then 2xs a day, then 1 x a day.

 

The half life of Librium and valium and it’s metabolites are so long that you can do this, providing your nervous system is healing along the way.  You cannot do this dosing change yet.

 

As I said my breakthrough was at 14 months into the very slow taper.

 

I hope this helps a bit.

 

How long have you held at 12 mg?

Thank you DM123 that means a lot and makes me feel much better!

It’s only been a few days back up at 12, I feel like my tolerance is pretty high as the first few days I felt great but it’s eased a little.

I definitely agree with what you said about my nervous system it makes a lot of sense

 

My doc agrees we keep

Things the same for a while to settle...I freaked out after stopping the K and had just been playing catch up til then and getting worse while trying to cut, then got stuck on 6 mg getting worse while having other meds thrown at me so now we’re kinda resetting.

 

What did you taper from originally?

 

Thanks so much for your advice I really appreciate it

Thank you!

 

I think I know the ‘aura’ sensation. I think I have something like that quite often but don’t have proper seizures. I seem to have a lot of those very peculiar, uncanny, extremely odd and disturbing sensations like head dissolving feelings etc. Impossible to describe as you know.

 

Can I ask what you mean by ‘a steady state’?

 

Atm when I take my diazepam I initially feel worse then feel a bit better for about an hour or so then start to feel worse again. If I leave it an extra hour a I start to feel a bit better but too long and symptoms start to ramp up.

 

If I take dose at four hour mark I go through it all again.

 

So going through that four times a day atm.

 

Mostly feel a bit better in morning once am past the vibrating/anxiety bit and then take dose and things get worse from there.

 

I think I’m still in the withdrawal I was before reinstated and only thing stopping the full blown 24/7 dystonia, terror of touching and looking at anything and feeling like my brain is dissolving and That ‘I am in the process of dying’ feeling and all the other horrendous stuff.  Is the fact that there is still some diazepam in my system.

 

I can only hope that it doesn’t get as bad as last time which was quite literally unbearable - hence reinstatement.

 

Hi Ajusta,

 

For me the aura was a feeling like the inside of my brain was buzzing and short circuiting, if that makes any sense.  I also “felt” like my eyes were ready to roll back.  This typically occurred with minor stress.  Hyperexcitability.

 

I know some have trouble with the valium itself.  It does not agree with them.  It looks like it is keeping you stable, but your body is seeing the drug  itself as toxic.

 

You and I are on both very low dosages ( mine is librium) and it might be withdrawal as you say.  I feel the effects of each cut as withdrawal symtoms but acclimate after around 26-34 days.  Each of us is unique in this respect.

 

I get a feeling of ‘static’ in head. I first had that 22 years ago when first got ill. I have to get to the floor fast because it makes me feel like a I will pass out.

 

I find the feeling that my brain is not making proper connections more disturbing. It is as if parts of it ‘dissapear’.

 

Thank you for all the hard work you put in on the science. I used to have a good brain - it feels like mush now. Sometimes it literally feels like it is going pulpy - or, rather, that the back of my head is going pulpy.

 

You couldn’t come up with most of these symptoms if you were asked to write the most disturbing body horror film ever made... just beyond hell.

 

 

Thank you!

 

I think I know the ‘aura’ sensation. I think I have something like that quite often but don’t have proper seizures. I seem to have a lot of those very peculiar, uncanny, extremely odd and disturbing sensations like head dissolving feelings etc. Impossible to describe as you know.

 

Can I ask what you mean by ‘a steady state’?

 

Atm when I take my diazepam I initially feel worse then feel a bit better for about an hour or so then start to feel worse again. If I leave it an extra hour a I start to feel a bit better but too long and symptoms start to ramp up.

 

If I take dose at four hour mark I go through it all again.

 

So going through that four times a day atm.

 

Mostly feel a bit better in morning once am past the vibrating/anxiety bit and then take dose and things get worse from there.

 

I think I’m still in the withdrawal I was before reinstated and only thing stopping the full blown 24/7 dystonia, terror of touching and looking at anything and feeling like my brain is dissolving and That ‘I am in the process of dying’ feeling and all the other horrendous stuff.  Is the fact that there is still some diazepam in my system.

 

I can only hope that it doesn’t get as bad as last time which was quite literally unbearable - hence reinstatement.

 

Hi Ajusta,

 

For me the aura was a feeling like the inside of my brain was buzzing and short circuiting, if that makes any sense.  I also “felt” like my eyes were ready to roll back.  This typically occurred with minor stress.  Hyperexcitability.

 

I know some have trouble with the valium itself.  It does not agree with them.  It looks like it is keeping you stable, but your body is seeing the drug  itself as toxic.

 

You and I are on both very low dosages ( mine is librium) and it might be withdrawal as you say.  I feel the effects of each cut as withdrawal symtoms but acclimate after around 26-34 days.  Each of us is unique in this respect.

 

I get a feeling of ‘static’ in head. I first had that 22 years ago when first got ill. I have to get to the floor fast because it makes me feel like a I will pass out.

 

I find the feeling that my brain is not making proper connections more disturbing. It is as if parts of it ‘dissapear’.

 

Thank you for all the hard work you put in on the science. I used to have a good brain - it feels like mush now. Sometimes it literally feels like it is going pulpy - or, rather, that the back of my head is going pulpy.

 

You couldn’t come up with most of these symptoms if you were asked to write the most disturbing body horror film ever made... just beyond hell.

 

Hi Adjusta

 

Regarding steady state it just means maintaining steady blood serum levels if the Benzo.  See my response above.  During initial healing I followed a 3x/day protocol, but as you heal you can taper out the afternoon,then morning dose, because the nervous system regains some of the stress resiliency that it once had.  The nervous system is stressed more, with unstable serum levels.      Valium and librium have such long half lives, that you can taper the daily doses a bit unevenly as you progress.

 

Early on its best to cut evenly between the daily doses.

 

For example. 10. 10. 10

To 9. 9. 9

 

As you progress, at least for me, I tapered down the afternoon dose at one point.  Next the morning dose.  Now I’m left with evening dose.

 

If you are microtapering with a potent Benzo it’s best to keep the dosages even all the way down.  The half lives if these benzos are too short relative to librium or valium (and their active metabolites)

 

 

Regarding the symptoms, they can get so bizarre that I don’t even mention them to anyone anymore.  They seem to pass the more stable one gets.  Asking people to try to understand is fruitless and in my case I found it caused more angst than good.

 

Regarding the “mush brain”, it gets better.  Your creativity and drive (dopamine) will start to return, as will your physical energy.  My writing is becoming much more effortless now, than it was 8 months ago.

 

I hope this helps.

Dm123

Thank you DM123 that means a lot and makes me feel much better!

It’s only been a few days back up at 12, I feel like my tolerance is pretty high as the first few days I felt great but it’s eased a little.

I definitely agree with what you said about my nervous system it makes a lot of sense

 

My doc agrees we keep

Things the same for a while to settle...I freaked out after stopping the K and had just been playing catch up til then and getting worse while trying to cut, then got stuck on 6 mg getting worse while having other meds thrown at me so now we’re kinda resetting.

 

What did you taper from originally?

 

Thanks so much for your advice I really appreciate it

 

Hi

 

I just read your profile.  I’m sorry you’re going through this nightmare.

Please give the valium 30 days, to determine if you can stabilize.  I think you can.  Space out the doses evenly like you are doing.

 

Is the baclofen helping, and if so which symptoms is it helping with.?

 

I crossed over from a mess of lorazepam, lunesta and sporadic ambien, all single dosed at night, which was the worst thing to do.  It’s unfortunate, but we cannot turn back the clock.  I can say with confidence that most of the docs RXing this stuff have no idea what they are doing.  I was also on hydrocortisone, fludrocortisone and T3.  These potentiate neurons as well.  I’m off all of it now.

 

I wish you the best and hope you feel better soon. 

 

Best

Dm123

Thanks dm123! That’s very helpful advice.

Yes it’s been a nightmare year, and I wouldn’t be here if I’d kniwn about pAws after being ct’d last year. Sigh, but hindsight is wonderful and we can’t go back, it’s just been a totally wasted year as I’ve been in bed most of it, was unwell before it all stared back in feb.

 

I’ll def take your advice! I think I’m starting to feel a little better but just tired and in pain.

 

Baclofen was added initially to help me get off benzos quicker but it was quite soon after stopping the K and after dropping the V rapidly I lost my shit and reinstated slightly, but got stuck on 6 of V and the Bac has made my muscles waste agdbne very weak. I was a pretty fit healthy 36 year old before this but I am unwell with pain and Neely diagnosed Lymes and arthritis so I’m not quite the person I was. But I’ll get better and get back

 

Bac did help with anxiety originally but it’s eorn off.

 

Wow you had quite the cocktail, that’s crazy, I’m so glad to hear your off and better now. How long did you taper for?

 

Thanks again for your help much appreciated ❤️

dm123 - I am no longer taking the Baclofen.

 

Thanks for you advice.

 

I know diazepam has a longer half-life but it only lasts about an hour and a half at a level that does anything for me now. I am still in withdrawal from earlier this year and the small dose Zi am now taking just eases things very slightly between the symptoms ramping up again.

 

I’m sorry you were on such a horrible cocktail of drugs. Last year a I was taking diazepam, Tramadol, co-codomol, Sertraline, methocarbamol and Zopiclone. I got off of all of them easily until tried to stop the diazepam (and stupidly CT’d the Zopiclone at same time because was so focussed on tapering diazepam forgot needed to taper Zopiclone)).

 

I am having to take co-codomol again when needed because pain in spine freaks my brain out more.

 

Dtrain - I’m s sorry you too are in a big mess. I’m sorting Lyme test atm. Had the rash back in 87 and ME diagnosis since 1996 - had my head in sand about it for years because it’s too scary...

 

I have osteoarthritis of spine but so do lots of people who don’t have spinal symptoms I do.

 

Something else is going on in my spine since surgery but I have been unable to get any answers or help for it for 20 years. The tightness in spine was why a I was on diazepam. It eased it a bit but has been hard to sit and hold myself upright for 20 years. No amount of trying to exercise etc has made any difference. It makes me despair.

 

Prior to withdrawal I could lie down more comfortably and read a book. Now not even that. Rheumatologist says I have fibromyalgia but I am hoping that is withdrawal and not fibromyalgia proper.

Thanks dm123! That’s very helpful advice.

Yes it’s been a nightmare year, and I wouldn’t be here if I’d kniwn about pAws after being ct’d last year. Sigh, but hindsight is wonderful and we can’t go back, it’s just been a totally wasted year as I’ve been in bed most of it, was unwell before it all stared back in feb.

 

I’ll def take your advice! I think I’m starting to feel a little better but just tired and in pain.

 

Baclofen was added initially to help me get off benzos quicker but it was quite soon after stopping the K and after dropping the V rapidly I lost my shit and reinstated slightly, but got stuck on 6 of V and the Bac has made my muscles waste agdbne very weak. I was a pretty fit healthy 36 year old before this but I am unwell with pain and Neely diagnosed Lymes and arthritis so I’m not quite the person I was. But I’ll get better and get back

 

Bac did help with anxiety originally but it’s eorn off.

 

Wow you had quite the cocktail, that’s crazy, I’m so glad to hear your off and better now. How long did you taper for?

 

Thanks again for your help much appreciated ❤️

 

Hi dtrain,

 

I’ve still got a small bit ways to go on the librium.  So far 18 month slow taper.  I could have sped it up, but would have spent the same amount of time recovering and in much worse shape, and it might have ended up protracted.    I always bring up Stevie Nicks.  She did a fairly quick detox off a very large amount of clonazepam, and she spent 2 years post recovery.  She’s better now but the recovery was not pleasant.

 

Best

Dm123

dm123 - I am no longer taking the Baclofen.

 

Thanks for you advice.

 

I know diazepam has a longer half-life but it only lasts about an hour and a half at a level that does anything for me now. I am still in withdrawal from earlier this year and the small dose Zi am now taking just eases things very slightly between the symptoms ramping up again.

 

I’m sorry you were on such a horrible cocktail of drugs. Last year a I was taking diazepam, Tramadol, co-codomol, Sertraline, methocarbamol and Zopiclone. I got off of all of them easily until tried to stop the diazepam (and stupidly CT’d the Zopiclone at same time because was so focussed on tapering diazepam forgot needed to taper Zopiclone)).

 

I am having to take co-codomol again when needed because pain in spine freaks my brain out more.

 

Dtrain - I’m s sorry you too are in a big mess. I’m sorting Lyme test atm. Had the rash back in 87 and ME diagnosis since 1996 - had my head in sand about it for years because it’s too scary...

 

I have osteoarthritis of spine but so do lots of people who don’t have spinal symptoms I do.

 

Something else is going on in my spine since surgery but I have been unable to get any answers or help for it for 20 years. The tightness in spine was why a I was on diazepam. It eased it a bit but has been hard to sit and hold myself upright for 20 years. No amount of trying to exercise etc has made any difference. It makes me despair.

 

Prior to withdrawal I could lie down more comfortably and read a book. Now not even that. Rheumatologist says I have fibromyalgia but I am hoping that is withdrawal and not fibromyalgia proper.

 

Hi Adjusta,

 

Untreated acute Lyme is what got me started in this mess.  There’s a big problem with the CDC.  They have no sense of logic,

 

Acute Lyme they acknowledge as an emergency

Treated acute Lyme that transitions into chronic Lyme, they sort of recognize.  They don’t believe long term antibiotics can help

Untreated acute Lyme that goes into chronic, they have no protocol or opinion on. (Last time I checked which was a few years ago).

 

That last point, untreated acute Lyme that goes into chronic is a black hole.  That’s the bucket I fell into.  Bloodwork was done far too late, at 1.5 years out.  RNA testing showed all the usual coinfections.

 

It’s as if they do not recognize any Lyme diagnosis that is confirmed by testing outside of the acute window.  This is very problematic because many times once a person transitions into untreated chronic Lyme, the immune system is so beaten down that the patient comes up with negative antibody tests.

 

My bloodwork was all positive but tested far too late.

 

I did go on 1.5 years of antibiotics and antiparastics which did help in the recovery.

 

I hope you can get the treatment for your Lyme.

 

Best

Dm123

I’m so sorry to hear that.

 

I don’t know if a test will show anything after 30 years since the rash.

 

I am going to get the Armin Lab test done as that seems most likely to find it if it is there.

 

My understanding is that if you had the rash that definitely means infection.

 

What I am not sure about is whether it can clear without treatment or if it is likely to have been the cause of my illness all along rather than ME.

 

If I do have it it is definitely in my nervous system.

 

The UK don’t recognise chronic/late stage Lyme either and will only give 2 weeks antibiotics as far as I am aware. If a test shows it up I need to see a specific neurologist at a private hospital but I am largely housebound, can’t even sit most of the time, and not well enough to travel there so have no idea what I would do.

 

Laura on here says treated her sisters Lyme with this https://www.jnutra.com/shop/product/borrelogen/

 

But not sure there is any evidence that would work. Dr Myhill mentions Stevia but the study on that was in vitro so dubious.

 

Also treating it in withdrawal seems like a nightmare because even without withdrawal it makes people even more unwell during treatment.

 

I just hope I somehow don’t have it despite the rash.

I’m so sorry to hear that.

 

I don’t know if a test will show anything after 30 years since the rash.

 

I am going to get the Armin Lab test done as that seems most likely to find it if it is there.

 

My understanding is that if you had the rash that definitely means infection.

 

What I am not sure about is whether it can clear without treatment or if it is likely to have been the cause of my illness all along rather than ME.

 

If I do have it it is definitely in my nervous system.

 

The UK don’t recognise chronic/late stage Lyme either and will only give 2 weeks antibiotics as far as I am aware. If a test shows it up I need to see a specific neurologist at a private hospital but I am largely housebound, can’t even sit most of the time, and not well enough to travel there so have no idea what I would do.

 

Laura on here says treated her sisters Lyme with this https://www.jnutra.com/shop/product/borrelogen/

 

But not sure there is any evidence that would work. Dr Myhill mentions Stevia but the study on that was in vitro so dubious.

 

Also treating it in withdrawal seems like a nightmare because even without withdrawal it makes people even more unwell during treatment.

 

I just hope I somehow don’t have it despite the rash.

 

Hi Adjusta

 

I have heard of borrelogen but never used it as part of my protocol

 

The stevia studies are questionable.  As you said they were in vitro.  Also the relative dosing for killing off the bacteria is very very high.  I don’t know if those huge doses are tolerable for long term treatment.

 

I’m glad you are getting tested.  I’ve never heard of the Armin lab test, but if it’s an immune based antibody test with the standard bands, I do hope it is sufficiently sensitive to detect minute amounts of the relevant bands.

 

Best

Dm123

Hi,

 

This is the Armin stuff https://www.arminlabs.com/en/services/tick-borne-diseases/lyme-borreliosis

 

I am hoping to get the Elispot, Antibodies and CD57 tests done.

 

I keep putting it off because I think finding out I do have it might push me over the edge.

 

Hi,

 

This is the Armin stuff https://www.arminlabs.com/en/services/tick-borne-diseases/lyme-borreliosis

 

I am hoping to get the Elispot, Antibodies and CD57 tests done.

 

I keep putting it off because I think finding out I do have it might push me over the edge.

 

Hi Adjusta, thanks.

 

I wish i knew what the actual blood test looked like, ie what exactly they are measuring and in what units.

 

But this looks very good, from the website above.  ELISA is basically useless.  I had the Igenix.  Even igenix has some question marks as to its validity.  Igenix is a sensitized western blot type antibody test.

 

PCR testing is the best by far to my knowledge, but i don’t know much about the Elispot. From below, it looks similar in sensitivity to the PCR.  PCR also has very low false positives. ELISA has high false negatives.

 

It looks like the technology is improving with time, which is good news......

 

I do understand. Diagnosis is always difficult.  I wish you the best.

 

Quote

The EliSpot is between 20 and 200 times more sensitive than a conventional ELISA.

The EliSpot displays a similar sensitivity as a RT-PCR (Real Time PCR) analysis, but detects the secreted protein instead of the mRNA (messanger RNA).

End quote

Thanks!

 

 

Biggest sign os when u have worsened CNS symptoms. Worsened "gooey" sensation, worsened light and Sound sensibility, worse tinnitus, anxiety, Braun fog and so on.