arachnoiditis

[mille125]

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Looking for pearls for treating this condition. Getting more patients now and I am truly humbled. Nothing from my bag of tricks works.

Any thoughts from the experienced docs?

 

[camkiss]

I’ve had some success with buprenorphine 2mg SL BID. Max dose Lyrica as tolerated. Clonidine 0.1mg at night if BP will allow it. Benfotiamine and alpha lipoic acid.

 

[mille125]

I’ve had some success with buprenorphine 2mg SL BID. Max dose Lyrica as tolerated. Clonidine 0.1mg at night if BP will allow it. Benfotiamine and alpha lipoic acid.

Thanks...Haven't tried buprenorphine. Haven't had success for lyrica or clonidine.. What is the difference between benfotiamine with lipoic acid vs just taking a MVI? Is the B1 absorption that much difference and does it make a difference?

It is very humbling and one of the only conditions were my deep bag of tricks is giving my nothing. My usual go to treatments for complex neuropathic pain syndromes are SCS and scrambler. Both should be good in theory. 3 of my last 4 SCS trial failures were all arachnoiditis patients. I am batting .000 for scrambler success in arachnoiditis.

. Makes me wonder if it is the bat or the batter or just the game?

 

[GorillaPanic]

Notoriously the most difficult patients to treat. I got lucky one time with a patient who had tried everything under the sun, and came to me after her SCS implant by another doc never worked after a year. She had tried everything BUT a TCA, so I started her on nortriptyline 10mg and told her to uptitrate by 10mg per week for 4 weeks until 50mg/day and then hold steady until follow up. She rolled her eyes and left. Two months later I saw her in clinic and she told me “you know, last time I saw you I thought you were full of **** when prescribing me another antidepressant… but this is the best I’ve felt in years and I wish I had seen you before the doc who put this worthless device in me.”

Of course, her story is a rare success, but still a good reminder to not skip over the basics because once in a while you’ll get lucky. I’ve also had many fibromyalgia patients feel “the best they have in years” on nortripyline, very underrated med.

 

[mille125]

Notoriously the most difficult patients to treat. I got lucky one time with a patient who had tried everything under the sun, and came to me after her SCS implant by another doc never worked after a year. She had tried everything BUT a TCA, so I started her on nortriptyline 10mg and told her to uptitrate by 10mg per week for 4 weeks until 50mg/day and then hold steady until follow up. She rolled her eyes and left. Two months later I saw her in clinic and she told me “you know, last time I saw you I thought you were full of **** when prescribing me another antidepressant… but this is the best I’ve felt in years and I wish I had seen you before the doc who put this worthless device in me.”

Of course, her story is a rare success, but still a good reminder to not skip over the basics because once in a while you’ll get lucky. I’ve also had many fibromyalgia patients feel “the best they have in years” on nortripyline, very underrated med.

Agree wholeheartedly about nortriptyline. Have had a lot of success with it especially in vague abdominal pains but alas.....strikeouts in arachnoiditis.

 

[camkiss]

Thanks...Haven't tried buprenorphine. Haven't had success for lyrica or clonidine.. What is the difference between benfotiamine with lipoic acid vs just taking a MVI? Is the B1 absorption that much difference and does it make a difference?

It is very humbling and one of the only conditions were my deep bag of tricks is giving my nothing. My usual go to treatments for complex neuropathic pain syndromes are SCS and scrambler. Both should be good in theory. 3 of my last 4 SCS trial failures were all arachnoiditis patients. I am batting .000 for scrambler success in arachnoiditis.

. Makes me wonder if it is the bat or the batter or just the game?

I think the lipid solubility of Benfotiamine really helps absorption and efficacy and a couple of studies showed synergy with ALA.

Regarding nortriptyline- as others mentioned, I’ve had some success there as well. I’ve also had two women come back and tell me they can’t take it because of hypersexuality. One said she was about to jump the butcher in the grocery store and hump his leg! I laughed and she was dead serious.

 

[Gnarvin]

I think the lipid solubility of Benfotiamine really helps absorption and efficacy and a couple of studies showed synergy with ALA.

Regarding nortriptyline- as others mentioned, I’ve had some success there as well. I’ve also had two women come back and tell me they can’t take it because of hypersexuality. One said she was about to jump the butcher in the grocery store and hump his leg! I laughed and she was dead serious.

Wow I have never heard of that side effect with nortriptyline!

 

[cowboydoc]

According to AI, high doses of opioids are the only thing that really works in this condition.

 

[Ducttape]

maybe due to AI scrolling through Reddit posts?

 

[Ferrismonk]

I think the lipid solubility of Benfotiamine really helps absorption and efficacy and a couple of studies showed synergy with ALA.

Regarding nortriptyline- as others mentioned, I’ve had some success there as well. I’ve also had two women come back and tell me they can’t take it because of hypersexuality. One said she was about to jump the butcher in the grocery store and hump his leg! I laughed and she was dead serious.

Usually TCAs do just the opposite.

 

[Ferrismonk]

According to AI, high doses of opioids are the only thing that really works in this condition.

Thank you Dr.Tennant.

 

[clubdeac]

What about ketamine infusions

 

[mille125]

According to AI, high doses of opioids are the only thing that really works in this condition.

I am never the perpetrator of such an approach but a lot of them come to me already near or over 200 MMEs.

Pain still very high as you might guess.

 

[mille125]

What about ketamine infusions

I had a few people in fellowship (many moons ago) who responded but have had no personal luck sense.

 

[NVO]

Notoriously the most difficult patients to treat. I got lucky one time with a patient who had tried everything under the sun, and came to me after her SCS implant by another doc never worked after a year. She had tried everything BUT a TCA, so I started her on nortriptyline 10mg and told her to uptitrate by 10mg per week for 4 weeks until 50mg/day and then hold steady until follow up. She rolled her eyes and left. Two months later I saw her in clinic and she told me “you know, last time I saw you I thought you were full of **** when prescribing me another antidepressant… but this is the best I’ve felt in years and I wish I had seen you before the doc who put this worthless device in me.”

Of course, her story is a rare success, but still a good reminder to not skip over the basics because once in a while you’ll get lucky. I’ve also had many fibromyalgia patients feel “the best they have in years” on nortripyline, very underrated med.

I also had a somewhat similar story with TCA. Young male with terrible testicular pain. You know how some chronic pelvic pain patients are. Tough to treat. Urology ruled everything out. Tried all the meds other than TCA. Was gonna plan for some US guided nerve block. Started on nortriptyline and titrated up which completely took the pain away. 0 pain. He went backpacking and forgot the meds. Pain never returned. Now completely off any pain meds, dont have to see him again. Sad sometimes that the success stories are the folks that don't return to your practice.

 

[GatorCHOMPions]

I've had similar rare success stories with nortriptyline as well as topiramate, not for arachnoiditis but other difficult to treat conditions.

 

[Taus]

I've had similar rare success stories with nortriptyline as well as topiramate, not for arachnoiditis but other difficult to treat conditions.

Same