What are the chances of developing tolerance withdrawal?

[[Md...]]

Quick question (followed by a long story that involves my situation).

What are the chances of tolerance withdrawal happening when taking benzos regularly? Are there any established studies or actual percentages on this? Seems somewhat random and rare to me, and it seems like most benzo suffering comes from tapering, especially tapering too fast or quitting cold turkey. 

Now for the long part, which I’ve brought up a couple times on this forum. I just think the context is important to provide an understanding of my situation.

So I suffer from something called Post Traumatic Trigeminal Neuropathy. Long story short, an oral surgeon gave me nerve damage during a tooth extraction back in March.  It eventually lead to a chronic pain condition called Persistent Ideopathic Facial Pain. It’s a rare condition, but happens due to central sensitization. 

Basically, it’s atypical facial pain and the pain from this condition can be so debilitating that many people off themselves because of it. Imagine your head in a vice grip and your teeth/ gums being ripped out by an unseen force. That’s the kind of pain we’re talking about. 

This is basically a neurological/neuropathic disorder, very similar to phantom limb pain. It’s a disconnection between the nerves and the brain, where the nerves are constantly sending pain signals to the brain, again due to central sensitization.

When this first began I had no clue what was happening, and took every single pain killer known to man. Nothing touched the pain. On a whim and out of desperation I took some Xanax, it was an old prescription that my psycho overprescribing GP gave me years ago. I only took it a couple of times, and then left it in my medicine cabinet and forgot about it.

Anyway, out of pure desperation I took the Xanax on a whim and it completely alleviated the pain. I didn’t understand it. I had no clue why an anti-anxiety medication would alleviate such horrific pain. It took me months to finally realize that benzos are potent anticonvulsants, and anticonvulsants are the first line of treatment for neuropathic pain. My GP was too much of a moron to tell me this, and I had to figure this all out by myself.

At that time, i too was a benzo moron (because my GP never informed me anything about them), and so i started taking them regularly, .5mg of Xanax 4 times a day. 

The pain seemed to get better and so I dropped my my 2mg dose to 1.5mg basically overnight. Shortly after that i developed very painful interdose withdrawals. It was like my brains were being ripped out and was just completely turning off. I couldn’t focus or concentrate on anything. 

I eventually educated myself on benzos and told my GP what was happening. Because of this, she cut my dose in half, and also cut me off as a patient, and told me to go to detox.

At this point, i knew i had to find a benzo wise doctor, which I did, and he gradually transferred me over to Valium which completely eliminated the painful interdose withdrawals.

Ive been on 30mg of Valium everyday since (10mg 3 times a day) and we plan on tapering very soon, but my concern is the facial pain coming back full throttle. 

This pain (especially during flareups) is just as debilitating as any benzo withdrawal symptom, if not worse, hence my concern.

So I started thinking, if this pain does come back full throttle, I’d feel like i have no choice but to get back on benzos, because I’ve tried just about every neuropathic pain medication, and they just don’t off any relief. In fact, I’ve joined a lot of atypical facial pain FB groups, and many of those members are also taking benzos to treat their pain (fun fact: Klonopin is often prescribed to people who suffer from phantom limb pain). 

So that’s my background, and I’m having some second thoughts about tapering. 

But my other concern is developing benzo tolerance withdrawal. This seems to be a rare occurrence, but if that were to happen, i could be stuck with protracted withdrawals plus the debilitating facial pain. 

But life is all about pros and cons, and risks and outcomes. So do i slowly taper and try to find something safer to take for the long term while I taper, or do i stay on benzos that allow me to live a normal life without any pain? 

What would you do? 

And is there an actual percentage or average of people who develop tolerance withdrawal from benzos? Is there any established info on this? Or does it just randomly happen? My uncle took Xanax for 30 years and had zero issues with it. 

Sorry for the long post, but I’m trying to outweigh the pros and cons here. 

What would you do? 

Thanks for your feedback. 

[[ia...]]

@[Md...] Hi there. 

I'm going to try to answer your questions

To my knowledge there have not been clinical studies done on benzo interdose WD- I have not personally seen any literature on this but candidly I have not looked at length. They could exist I just have not seen these stats. 

Interdose WDs happen, but generally (not always) if you're METHODICALLY tapering 10-15% 2-4 weeks, maybe even holding up to 6, hypothetically IN THEORY this shouldn't happen. Every body is different and during a taper it can take a couple different methods - until you get into a rhythm. 

I was on two benzos concurrently for three years. I started tapering off BOTH concurrently when I started my taper. I cut and held for 2-4 weeks and cut anywhere between 10-25% (probably too aggressive). I had WDs all the way down and didn't 'level off' really - there were not times during my taper that were rainbows and butterfly. It was hard... not brutal. Not impossible - but challenging. See more below as I accidentally submitted this post too quickly.

[[ia...]]

I understand you're looking for a 'definitive number' or 'outcome' to demonstrate or show data that will validate or confirm 'what are the odds of tolerance WD. But I don't know that you will find it. Even if you do...that doesn't mean the data will be consistent with your experience. (I'm sure that you know this already... but my point is.... do not let the desire to 'know things' encroach on your taper.) 

Here's the truth: You cannot fully prepare for what a taper will bring. It truly is, taking it one day at a time. Given your experience - I can imagine with the IMMENSE facial pain and other symptoms - I can imagine you're concerned. I'm not minimizing your questions/concerns, I just want you to be aware that it's hard to plan for the things that happen during a taper and as they come, you will work through them and be ok. Slow and steady wins this race. 

 

I know I didn't directly answer your question. I don't have any data. I would encourage you to not let this concern about TWD drive your decision around a taper. Starting is the hardest part.

[[...]]

2 hours ago, [[M...] said:

 

I would minimize the use to where I barely felt the facial and invest some time looking for a replacement that worked. 

If  I found a replacement great, if not I would stay on benzos. 

I know a long term user without issues too.

But benzos use can go south for anyone.

So again, I would invest time in trying to find an alternative. Benzos hell is hell. 

[[Md...]]

13 hours ago, [[i...] said:

@[Md...] Hi there. 

I'm going to try to answer your questions

To my knowledge there have not been clinical studies done on benzo interdose WD- I have not personally seen any literature on this but candidly I have not looked at length. They could exist I just have not seen these stats. 

Interdose WDs happen, but generally (not always) if you're METHODICALLY tapering 10-15% 2-4 weeks, maybe even holding up to 6, hypothetically IN THEORY this shouldn't happen. Every body is different and during a taper it can take a couple different methods - until you get into a rhythm. 

I was on two benzos concurrently for three years. I started tapering off BOTH concurrently when I started my taper. I cut and held for 2-4 weeks and cut anywhere between 10-25% (probably too aggressive). I had WDs all the way down and didn't 'level off' really - there were not times during my taper that were rainbows and butterfly. It was hard... not brutal. Not impossible - but challenging. See more below as I accidentally submitted this post too quickly.

Thanks for sharing.

I’m personally working with Witt Doering and will be doing a 9 month long taper to prevent any serious withdrawal symptoms. It will be a liquid titration method.

@[...]

I agree to a large extent, which is why i am currently working with a pain management physician who has dealt with atypical types of facial pain before.

My hope is that we can find something that works while I’m tapering IF the pain chooses to come back.

I will say, I’m tired of being on Valium. The depression has lifted quite a bit, but the lethargy and some brain fog got old real fast. 

 

[[Ko...]]

@[Md...] You are in a tough position but from what I have read benzos can turn on us at anytime and also cause a wide range of other health conditions.

You are tapering off 30 mg of valium in 9 months?  I am tapering down from 10 and will probably be tapering for longer than that. I am only at 8.75 so far- I have to go very slowly due to needing to maintain functioning for work.

Valium also made me lethargic and unmotivated. 

[[Md...]]

2 hours ago, [[K...] said:

@[Md...] You are in a tough position but from what I have read benzos can turn on us at anytime and also cause a wide range of other health conditions.

You are tapering off 30 mg of valium in 9 months?  I am tapering down from 10 and will probably be tapering for longer than that. I am only at 8.75 so far- I have to go very slowly due to needing to maintain functioning for work.

Valium also made me lethargic and unmotivated. 

Unfortunately, most of the medications that treat these conditions all come with crazy side effects, but yeah, benzos seem to be the most malignant and really weren’t meant to be taken long term.

Have you had any w/d symptoms yet?

To clarify, it’ll probably be at least a 9 month taper. I believe my benzo psych usually does 5% to 10% cuts every two weeks to 4 weeks depending on how smooth things go. If it’s too much to handle then we’ll slow things down. I guess everyone is different when it comes to this stuff.

This is him, btw. Maybe you’re familiar with him? I know a lot of people on this forum are. 
 

 

Edited November 2, 2023 by [Md...]

[[Ko...]]

yes- I actually looked at working with him but he is not licensed in my state and his fees are really high. My provider will let me go as slowly as want so other than the expertise, I guess it doesn't matter. My main concern is that I need to maintain high functionality and don't want to be unable to work my job.  I could use short term disability but would want to save that for the end of the taper rather than anytime soon.

I don't know what is w/d symptom vs side effect sometimes- I feel very fatigued, have tinnitus, occasional headaches and muscle aches, occasional trembling, mild anxiety,  decreased stress tolerance, and obsessive thoughts. Some depression and anhedonia. 

Do you have to work?

 

[[Ko...]]

Given my age and my children's ages and after reading the horror stories on here, if I knew that I wouldn't develop tolerance withdrawal, I would probably stay on until I was 65 and could start getting Social Security. But that is 12 years away for me and I don't feel good already.

[[Md...]]

@[Ko...]

I think most of those symptoms you’re describing are the side effects from the Valium itself, as I experience most of those, and I haven’t even started tapering yet.

Sounds like you found yourself a good doctor! How long have you been on Valium, if you don’t mind me asking? I started on Xanax back in March, which i tolerated much better than Valium, aside from those gruesome I/D withdrawals. 

And i agree with you about just staying on the benzos until my kids are raised, but tolerance withdrawal is real (though seemingly rare) and apparently can be real hell, so at least with tapering slowly you’ll eventually be able to maintain functionality, while simultaneously be able to heal and get back to your normal self, probably even a stronger version of yourself. 

 

[[Ko...]]

@[Md...] I started klonopin 0.5 mg in April this year- first tried to taper on my own in July due to adverse effects and had scary symptoms- so going into this very anxious.

Do you have to work? That reality is the driver of so much anxiety for me.

[[Ch...]]

On 01/11/2023 at 15:54, [[M...] said:

Thanks for sharing.

I’m personally working with Witt Doering and will be doing a 9 month long taper to prevent any serious withdrawal symptoms. It will be a liquid titration method.

@[...]

I agree to a large extent, which is why i am currently working with a pain management physician who has dealt with atypical types of facial pain before.

My hope is that we can find something that works while I’m tapering IF the pain chooses to come back.

I will say, I’m tired of being on Valium. The depression has lifted quite a bit, but the lethargy and some brain fog got old real fast. 

He is very expensive I wish I could afford him. 

[[Md...]]

55 minutes ago, [[C...] said:

He is very expensive I wish I could afford him. 

I agree. fees are expensive, but i managed to get in right before they raised their prices. 

They also alleviated my I/D withdrawals from Xanax so it’s hard to put a price on that. 

The other cool thing is that if you happen to find a GP you can trust, Dr Josef is willing to teach them how to properly taper you, so you don’t need to keep paying the high prices. Regardless, the startup fees are still pricey.

Or you can try to find a benzo smart doc. I personally couldn’t find one.  They’re usually just really hard to find and lack the same kind of experience Dr Josef has, but I’m sure they’re out there. 

Also, i believe they just launched a universal custom tapering plan. I’m not sure what this entails though. I just saw a video for it on their YouTube channel.

Edited November 2, 2023 by [Md...]

[[Ch...]]

1 minute ago, [[M...] said:

I agree. fees are expensive, but i managed to get in right before they raised their prices. 

They also alleviated my I/D withdrawals from Xanax so it’s hard to put a price on that. 

The other cool thing is that if you happen to find a GP you can trust, Dr Josef is willing to teach them how to properly taper you, so you don’t need to keep paying the high prices. Regardless, the startup fees are still pricey.

Or you can try to find a benzo smart doc. I personally couldn’t find one.  They’re usually just really hard to find and lack the same kind of experience Dr Josef has, but I’m sure they’re out there. 

I can’t find anyone. I am left to myself 

[[Ch...]]

What is he doing for you. I talked to hint but I can’t afford him. 45k for a year

[[Md...]]

1 hour ago, [[K...] said:

@[Md...] I started klonopin 0.5 mg in April this year- first tried to taper on my own in July due to adverse effects and had scary symptoms- so going into this very anxious.

Do you have to work? That reality is the driver of so much anxiety for me.

I do have to work. 

From what i understand, Xanax and Klonopin are the hardest benzos to taper from, so it’s no wonder you’re haunted by that anxiety.

But I’ve read from countless people that switching to Valium and tapering from there was the biggest blessing, and so much easier than tapering from Klonopin.

[[Md...]]

2 minutes ago, [[C...] said:

What is he doing for you. I talked to hint but I can’t afford him. 45k for a year

45K a year?! My goodness. They really raised their prices then. That’s out of reach for most people. 

As far as services go, the first thing they did was successfully transfer me over to Valium, and aside from the side effects of the medication, they did it in a very smooth and comfortable fashion.

Also, Dr Josef is excellent at listening to you and offers you different options when it comes to tapering. He’s excellent at answering emails in a timely fashion and his goal is to make sure that you’re functional while you are tapering. 

Obviously, there’s only so much he can do, but since he has so much experience doing this, I’m assuming he’s more likely to come up with solutions if you struggle with your taper better than anyone else.

All the communication is either through email or Zoom. I honestly don’t know how he has time to build a YouTube channel, while tapering people off benzos. He’s gotta be working like crazy. 

He’s also very honest and trustworthy.

Unfortunately, these are all traits that I’ve yet to find with most doctors. 

I say keep searching and looking for a local doctor that might be able to help. Maybe even stop looking for GP’s, because they’re usually morons, and maybe look for physiatrists or pain management specialists, as they are usually more educated, have a much better understanding of medication, and are generally much more concerned about the patient than your run of the mill GP who are usually nothing more than legal drug dealers and have no idea how to taper people off anything, and have caused more harm than good for many of us.

My last GP didn’t even know what the Ashton Manual was, and tried sending me to detox when ahe found out i was having interdose withdrawals. She had no problem prescribing meXanax, but had no clue how to deal with me when things went south. 

[[Ko...]]

@[Md...]yes my first psychiatrist told me that she would recommend detox if I couldn't handle tapering off .5 klonopin by in 25% increments. So I found a practice through the Benzodiazepine Information Coalition-they are cash only and I have to see the NP once a month. It does alleviate the anxiety of having your provider cut you off abruptly.

 

Sure hope tapering from valium is easier. Are you using the liquid yet? I started at 10 and went down to 9 and then 8.75 last time. I  may keep going down by .25 until the percentage drops get too high. I have a fear of making too large of a decrease and then not being able to function at the level I need to. Not sure how to get around that.  

 

[[Ch...]]

2 hours ago, [[M...] said:

45K a year?! My goodness. They really raised their prices then. That’s out of reach for most people. 

As far as services go, the first thing they did was successfully transfer me over to Valium, and aside from the side effects of the medication, they did it in a very smooth and comfortable fashion.

Also, Dr Josef is excellent at listening to you and offers you different options when it comes to tapering. He’s excellent at answering emails in a timely fashion and his goal is to make sure that you’re functional while you are tapering. 

Obviously, there’s only so much he can do, but since he has so much experience doing this, I’m assuming he’s more likely to come up with solutions if you struggle with your taper better than anyone else.

All the communication is either through email or Zoom. I honestly don’t know how he has time to build a YouTube channel, while tapering people off benzos. He’s gotta be working like crazy. 

He’s also very honest and trustworthy.

Unfortunately, these are all traits that I’ve yet to find with most doctors. 

I say keep searching and looking for a local doctor that might be able to help. Maybe even stop looking for GP’s, because they’re usually morons, and maybe look for physiatrists or pain management specialists, as they are usually more educated, have a much better understanding of medication, and are generally much more concerned about the patient than your run of the mill GP who are usually nothing more than legal drug dealers and have no idea how to taper people off anything, and have caused more harm than good for many of us.

My last GP didn’t even know what the Ashton Manual was, and tried sending me to detox when ahe found out i was having interdose withdrawals. She had no problem prescribing meXanax, but had no clue how to deal with me when things went south. 

I have a psychiatrist but does not believe in tolerance. I was denied car by 3 psychiatrists already. 

[[Ch...]]

If you don’t mind what is monthly fees 

[[me...]]

Hi mdfox1 sorry to hear of your dilemma I suffer from the same condition as you through a dentist doing a root canal I have tried every pill in the book clonazapam worked initially my dentist then decided to take my top teeth out and now the facial pain is unbearable it was a big mistake in the dentist part and now they have just left me to it I tried another restorative fentist but as it's ,50mile away and I don't drive and too I'll to go I'm stuck...I'm glad I'm retired but it's not much enjoyment at the moment I'm more or less bedridden and exhausted. I admire you for working with this condition. one oral surgeon suggested cannabis but I'm in the UK and it's illegal. 

Hope you find a solution🧜‍♀️🙏

[[Md...]]

15 hours ago, [[K...] said:

@[Md...]yes my first psychiatrist told me that she would recommend detox if I couldn't handle tapering off .5 klonopin by in 25% increments. So I found a practice through the Benzodiazepine Information Coalition-they are cash only and I have to see the NP once a month. It does alleviate the anxiety of having your provider cut you off abruptly.

Sure hope tapering from valium is easier. Are you using the liquid yet? I started at 10 and went down to 9 and then 8.75 last time. I  may keep going down by .25 until the percentage drops get too high. I have a fear of making too large of a decrease and then not being able to function at the level I need to. Not sure how to get around that.  

Yeah, most doctors are just ill informed and know nothing about taping, unfortunately. Then they think detox centers are somehow appropriate for tapering off benzos. I was actually speaking to Dr Witt-Doering about this and he said that some of the worst situations he’s dealt with were people who went to detox.

Regarding your fear, I completely understand, and your feelings are completely valid.

I really do believe that fear, anxiety, worry, stress, etc. will only amplify and even create symptoms, unfortunately.

This might sound like a load of BS, but I highly recommend finding a really good yoga/meditation instructor, as these practices are proven to calm and regulate your nervous system, especially when it comes to breathing techniques, which will all help with fear and anxiety. It has helped me a lot, tbh. 

There are other modalities that certain therapists specialize in that can help calm and regulate the nervous system. Even journaling (writing down goals, and how you want to feel for the day), or practicing mindfulness (positive thinking, for example) will help create new neuro circuits in the brain, which will eventually become your new autopilot (You don’t want this fear, anxiety, worry, stress, etc. to be your autopilot).

Again, yoga and meditation are excellent for this, but it usually requires daily practice, and it’s best to have a guide work with you one on one.

 

[[Md...]]

14 hours ago, [[C...] said:

I have a psychiatrist but does not believe in tolerance. I was denied car by 3 psychiatrists already. 

That’s because a lot of psychiatrists are complete morons. I honestly wouldn’t even waste my time with them, as they’ve done more harm than good as far as I can tell.

I would keep reaching out to different types of doctors, or maybe do what Kozmo9 did by finding a more understanding doctor through the Benzo Information Coalition. 

[[Md...]]

10 hours ago, [[m...] said:

Hi mdfox1 sorry to hear of your dilemma I suffer from the same condition as you through a dentist doing a root canal I have tried every pill in the book clonazapam worked initially my dentist then decided to take my top teeth out and now the facial pain is unbearable it was a big mistake in the dentist part and now they have just left me to it I tried another restorative fentist but as it's ,50mile away and I don't drive and too I'll to go I'm stuck...I'm glad I'm retired but it's not much enjoyment at the moment I'm more or less bedridden and exhausted. I admire you for working with this condition. one oral surgeon suggested cannabis but I'm in the UK and it's illegal. 

Hope you find a solution🧜‍♀️🙏

I’m really sorry to hear that. A lot of dentists/oral surgeons are also complete morons with these conditions. Many times they don’t stop to consider that this is a nerve related issue and not a tooth related issue, and this is well documented in the literature. I’m sorry they did that to you. 

Cannabis did not work for me (but everyone is different). I would possibly look into something called Memantine. I believe it is legal in the UK, but is through prescription only. It has been shown to alleviate neuropathic pain, and I actually know one person with the same condition who was able to get off her medications by using this nootropic.

Ironically, there have also been anecdotal reports of people using it to help them taper off benzos. 

Also, have you tried Oxcarbazepine, or Lyrica combined with Cymbalta? Tricyclic Antidepressants also have been known to help. All these medications suck and usually have side effects, but they also seem to be more benign than benzos.

Have you worked with any neurologists, orofacial pain specialists or pain management physicians who have experience with this type of atypical facial pain/neuropathy?

Have you tried a TENS unit, lidocaine injections or SPG blocks? Unfortunately, we have to become our own science experiments with these conditions, but some people have found relief with these.

Btw, there is a new medication that the FDA has fast tracked called Basimglurant that is showing promising results for neuropathic facial pain, and they are even testing it for benzo withdrawals. I’m not sure when it will be released, but since the FDA only fast tracks about 25% of medications, there’s probably something unique about this particular medication. I do believe it’s the only anticonvulsant that targets a specific glutamate receptor (MgluR5), so there could be something very unique about that receptor that may inhibit centralized pain. 

Edited November 3, 2023 by [Md...]

[[Md...]]

14 hours ago, [[C...] said:

If you don’t mind what is monthly fees 

I’m honestly not sure what they charge now, since it seems they raised their prices. I don’t pay any monthly fees either, as the fees are session based. If the taper plan goes smoothly, then i will only need to meet with Dr Josef once every 3 months. Again, he’s also willing to show other  doctors (if you can find one you trust and willing to learn) his tapering methods.