Starting to feel stupid for tapering

[[Md...]]

Last March i developed a rare condition called Post Traumatic Trigeminal Neuropathy (not to be confused with classic Trigeminal Neuralgia) after a tooth extraction. This is a very painful and debilitating condition, but I quickly learned that benzodiazepines work excellent for the pain (probably due to their anticonvulsant properties). After weeks of being in agony and bed ridden i was finally functional again, and continued to get better.

Not knowing anything about benzos, i decided to start tapering myself and soon got debilitating interdose withdrawals. My GP at the time had no clue what to do, and not only cut my dose in half, but told me to go to detox. 

This is when i sought out professional help, and have been under Dr Josef Witt-Doering’s care ever since. They did an amazing job with crossing me over to  Valium, which eliminated the interdose withdrawals.

I have been taking Valium since last summer, however, the depression and fatigue was a completely different type of debilitation. I have overcome a lot of the depression, but the fatigue never went away, and actually got worse when i started tapering a little over a month ago using half pills and half liquid via liquid micro titration. The liquid just hits so much harder than the pills. 

I have also started to develop withdrawals from tapering going at 5% every 4 weeks (anxiety, agitation, difficulty focusing). While i realize that these are mild symptoms compared to what many other people are going through, these are still very distracting symptoms that prevent me from even being pleasant around, and i just don’t feel like myself. I suppose this is natural. Afterall, i am tapering.

But this is supposed to be a 19 month long taper (coming off of 30mg of Valium). I don’t feel like i can function this way for that long, not to mention the recovery time it might take after my final dose. No one knows what complications await in store, and i keep reading that it can take years to recover. 

Sorry, but I’m 40 years old and don’t feel like i have that kind of time.

But why i feel really stupid for tapering  (aside from the withdrawal symptoms already starting) is that I’ve yet to find something else to treat the pain, even though i am currently working with a pain management physician to find something. The Valium is still working to treat the pain, but what happens if i can’t find another med that works as well?

The only reason for getting off benzos in the first place was the fear of tolerance withdrawal from happening, but that is a rare occurrence, and many people can take these meds without issue until the day they die (many people in my family have been taking benzos for 30+ years and don’t have any problems). 

Point being, life is all about risks. If i knew that my condition was temporary, then i wouldn’t be so concerned, but the prognosis is ridiculously low (20%). And the pain is beyond debilitating (imagine your teeth being ripped out or your face in a vice grip). It’s basically a type of neuropathy, but in your mouth and face. 

I am now considering just going back to my original Valium dose before the withdrawals started and either staying on them indefinitely and hope that I’ll stabilize or just getting on another benzo, like Klonopin. 

I would love to hear everyone’s thoughts concerning this situation, and also if it’s possible to stabilize either by holding or going back to my original dose. 

Basically, i feel like i jumped the gun with this taper, and should have given it more thought.

Thanks. 

Edited January 18 by [Md...]

[[Li...]]

It sounds like you are in between a rock and a hard place @[Md...].   Let’s hope the pain management specialist is able to help you.

Dr. Mark Horowitz addressed the topics of holding and tolerance in a recent podcast.  To learn more: 

 

[[Md...]]

19 minutes ago, [[L...] said:

It sounds like you are in between a rock and a hard place @[Md...].   Let’s hope the pain management specialist is able to help you.

Dr. Mark Horowitz addressed the topics of holding and tolerance in a recent podcast.  To learn more: 

Thank you! Sounds like holding might be beneficial then.

[[ns...]]

On 18/01/2024 at 12:02, [[M...] said:

Thank you! Sounds like holding might be beneficial then.

Mdfox1, hey sorry to hear about your ordeal. I had trigeminal neuralgia for yrs after a fall. I know the pain from nerve pain in your face and mouth. They put me on gabapentin, baclofen and norco for breakthrough pain. I'm not a proponent of gabapentin but for this kind of pain I would probably do it again. It helped for that. 

Please don't go back up in your dose if u don't have to, it could cost you, one never knows what could happen. Holding is a good plan, please don't feel foolish for tapering. It is good that you're taking your health into your own hands to heal your brain. 

I hope it all turns out well for u!

Ns

[[Md...]]

17 hours ago, [[n...] said:

Mdfox1, hey sorry to hear about your ordeal. I had trigeminal neuralgia for yrs after a fall. I know the pain from nerve pain in your face and mouth. They put me on gabapentin, baclofen and norco for breakthrough pain. I'm not a proponent of gabapentin but for this kind of pain I would probably do it again. It helped for that. 

Please don't go back up in your dose if u don't have to, it could cost you, one never knows what could happen. Holding is a good plan, please don't feel foolish for tapering. It is good that you're taking your health into your own hands to heal your brain. 

I hope it all turns out well for u!

Ns

Thank you. I appreciate that. I’m sorry you have to deal with TN. Did your pain ever go away? 

My pain is a bit different than classic TN. I don’t get any sharp stabbing pain in the side of my face or anything. It’s basically phantom limb type pain (nagging, dull, crushing, etc) that starts in the top of my teeth/ gums, and radiates up the center of my face until it becomes an unbearable flareup. 

Ive had a lot of scans, and they can never find anything wrong, which is usually the case with atypical facial pain.

[[dj...]]

On 18/01/2024 at 12:32, [[M...] said:

Last March i developed a rare condition called Post Traumatic Trigeminal Neuropathy (not to be confused with classic Trigeminal Neuralgia) after a tooth extraction. This is a very painful and debilitating condition, but I quickly learned that benzodiazepines work excellent for the pain (probably due to their anticonvulsant properties). After weeks of being in agony and bed ridden i was finally functional again, and continued to get better.

Not knowing anything about benzos, i decided to start tapering myself and soon got debilitating interdose withdrawals. My GP at the time had no clue what to do, and not only cut my dose in half, but told me to go to detox. 

This is when i sought out professional help, and have been under Dr Josef Witt-Doering’s care ever since. They did an amazing job with crossing me over to  Valium, which eliminated the interdose withdrawals.

I have been taking Valium since last summer, however, the depression and fatigue was a completely different type of debilitation. I have overcome a lot of the depression, but the fatigue never went away, and actually got worse when i started tapering a little over a month ago using half pills and half liquid via liquid micro titration. The liquid just hits so much harder than the pills. 

I have also started to develop withdrawals from tapering going at 5% every 4 weeks (anxiety, agitation, difficulty focusing). While i realize that these are mild symptoms compared to what many other people are going through, these are still very distracting symptoms that prevent me from even being pleasant around, and i just don’t feel like myself. I suppose this is natural. Afterall, i am tapering.

But this is supposed to be a 19 month long taper (coming off of 30mg of Valium). I don’t feel like i can function this way for that long, not to mention the recovery time it might take after my final dose. No one knows what complications await in store, and i keep reading that it can take years to recover. 

Sorry, but I’m 40 years old and don’t feel like i have that kind of time.

But why i feel really stupid for tapering  (aside from the withdrawal symptoms already starting) is that I’ve yet to find something else to treat the pain, even though i am currently working with a pain management physician to find something. The Valium is still working to treat the pain, but what happens if i can’t find another med that works as well?

The only reason for getting off benzos in the first place was the fear of tolerance withdrawal from happening, but that is a rare occurrence, and many people can take these meds without issue until the day they die (many people in my family have been taking benzos for 30+ years and don’t have any problems). 

Point being, life is all about risks. If i knew that my condition was temporary, then i wouldn’t be so concerned, but the prognosis is ridiculously low (20%). And the pain is beyond debilitating (imagine your teeth being ripped out or your face in a vice grip). It’s basically a type of neuropathy, but in your mouth and face. 

I am now considering just going back to my original Valium dose before the withdrawals started and either staying on them indefinitely and hope that I’ll stabilize or just getting on another benzo, like Klonopin. 

I would love to hear everyone’s thoughts concerning this situation, and also if it’s possible to stabilize either by holding or going back to my original dose. 

Basically, i feel like i jumped the gun with this taper, and should have given it more thought.

Thanks. 

I’m sorry to hear this.  I think a lot of people that go through this misery regret ever having tried to stop.  You’re not alone.  
 

The truth is if this is if you have this sort of reaction to tapering, the benzos were going to get you sooner or later, and it was just a matter of time. 

[[Md...]]

8 minutes ago, [[d...] said:

I’m sorry to hear this.  I think a lot of people that go through this misery regret ever having tried to stop.  You’re not alone.  
 

The truth is if this is if you have this sort of reaction to tapering, the benzos were going to get you sooner or later, and it was just a matter of time. 

Thanks.

That was my logic as well, which is why Im almost two months into tapering, and haven’t stopped.

I just have a hard time believing that benzos are the only fix for this. I know there aren’t any surgeries that can help (unlike classic TN), so it’s unfortunately just finding another medication (or medications) that aren’t as unforgiving as benzos. 

Had i know anything about benzos early on, i only would have taken them during flareups to avoid dependence, because they didn’t happen too often.

I guess if anything, benzos have bought me time to find some other type of pain management.

Do you know other people with this condition who took benzos to treat this pain?

Edited January 23 by [Md...]

[[dj...]]

29 minutes ago, [[M...] said:

Thanks.

That was my logic as well, which is why Im almost two months into tapering, and haven’t stopped.

I just have a hard time believing that benzos are the only fix for this. I know there aren’t any surgeries that can help (unlike classic TN), so it’s unfortunately just finding another medication (or medications) that aren’t as unforgiving as benzos. 

Had i know anything about benzos early on, i only would have taken them during flareups to avoid dependence, because they didn’t happen too often.

I guess if anything, benzos have bought me time to find some other type of pain management.

Do you know other people with this condition who took benzos to treat this pain?

No I don’t know anyone with that condition.  Just doing a brief google search, there are other treatments for it besides benzos.  Certain antidepressants and other anticonvulsants. 

[Guest [...]]

Hi @[Md...]

I agree with @[Li...]… you do seem to be between a rock and a hard place.

personally, I think my first port of call would be to simply hold and then reassess your position once you feel more stable. You may be able to think it through much better from that position. 🫂

[[ns...]]

57 minutes ago, [[M...] said:

Thank you. I appreciate that. I’m sorry you have to deal with TN. Did your pain ever go away? 

My pain is a bit different than classic TN. I don’t get any sharp stabbing pain in the side of my face or anything. It’s basically phantom limb type pain (nagging, dull, crushing, etc) that starts in the top of my teeth/ gums, and radiates up the center of my face until it becomes an unbearable flareup. 

Ive had a lot of scans, and they can never find anything wrong, which is usually the case with atypical facial pain.

Yes mone did go away after radiation for an acoustic neuroma.  They weren't connected. I'm sorry for what your dealing with, i know it's miserable. They never found anything on my scans either except later the neuroma. I fell and hit my head and face and then the pain started. So grateful it's gone! I guess you've researched treatment. There is gamma knife and gabapentin etc, 

I do hope u find relief. No one should have to suffer that kind of pain.

Take care

Ns

[[Md...]]

42 minutes ago, [[n...] said:

Yes mone did go away after radiation for an acoustic neuroma.  They weren't connected. I'm sorry for what your dealing with, i know it's miserable. They never found anything on my scans either except later the neuroma. I fell and hit my head and face and then the pain started. So grateful it's gone! I guess you've researched treatment. There is gamma knife and gabapentin etc, 

I do hope u find relief. No one should have to suffer that kind of pain.

Take care

Ns

I’m glad you no longer have it!

Unfortunately, Gamma Knife usually doesn’t work for this condition either. I knew one person who had that procedure 4 times to find no relief. 

So glad you were able to eliminate your TN though. Such a debilitating condition.

[[Md...]]

45 minutes ago, [[W...] said:

Hi @[Md...]

I agree with @[Li...]… you do seem to be between a rock and a hard place.

personally, I think my first port of call would be to simply hold and then reassess your position once you feel more stable. You may be able to think it through much better from that position. 🫂

Thanks for your feedback. 

[[Md...]]

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

No I don’t know anyone with that condition.  Just doing a brief google search, there are other treatments for it besides benzos.  Certain antidepressants and other anticonvulsants. 

Yes, these are the medications mainly recommended. I have tried many of them already, but wasn’t able to find relief. That was almost a year ago though, and my nervous system was in complete shock, so those meds might be worth re-exploring. My GP at that time prescribed me a handful of meds that made me feel awful (Cymbalta, Lyrica, Buspar, and Doxepin). The ER doc also prescribed me Tegretol, which was horrendous. None of them worked, i figured it made more sense to just take one poison that worked as opposed to a handful that had no impact. 

[[dj...]]

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

Yes, these are the medications mainly recommended. I have tried many of them already, but wasn’t able to find relief. That was almost a year ago though, and my nervous system was in complete shock, so those meds might be worth re-exploring. My GP at that time prescribed me a handful of meds that made me feel awful (Cymbalta, Lyrica, Buspar, and Doxepin). The ER doc also prescribed me Tegretol, which was horrendous. None of them worked, i figured it made more sense to just take one poison that worked as opposed to a handful that had no impact. 

Part of the issue may simply be that they started you on doses there were entirely too high for someone with a fragile nervous system.  Taking normal doses is just overwhelming and can make you feel awful. 
 

Did they suggest amitryptyline?  It’s what was often used for pain before Cymbalta.  The typical does of that is 50 to 100mg, but it comes in 10mg tablets.  And you can even start by breaking that in half.  As they say here, “start low and go slow” when trying a new medicine.  Really have to ease your way in. 

[[Md...]]

18 hours ago, [[d...] said:

Part of the issue may simply be that they started you on doses there were entirely too high for someone with a fragile nervous system.  Taking normal doses is just overwhelming and can make you feel awful. 
 

Did they suggest amitryptyline?  It’s what was often used for pain before Cymbalta.  The typical does of that is 50 to 100mg, but it comes in 10mg tablets.  And you can even start by breaking that in half.  As they say here, “start low and go slow” when trying a new medicine.  Really have to ease your way in. 

Thanks for your feedback. Good points.

Yes, i have tried Amitriptyline. Ironically, it was even prescribed to me before all this stuff went down by my GI doc for IBS.

Anyways, most people I’ve spoken to have had much better luck with Noritriptyline (same class of drug as Ami, but a little stronger for nerve pain), so I might try that. 

 

Edited January 24 by [Md...]