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Anyone diagnosed with small fibre neuropathy after cold turkey cessation?


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Has anyone been diagnosed with small fibre neuropathy and dysautonomia after a rapid benzo taper? I'm 3 years back and have severe sensory and autonomic neuropathy mostly in the form of burning pain in extremities, fasciculations, loss of coordination in arms, balance issues, ibs issues, chronic fatigue and brain fog.

 

I've been tested for everything under the sun and haven't found a root cause yet. Was only diagnosed because the skin punch biopsy test showed reduced epidermal nerve density. Considering these symptoms started 2 months after my cold turkey of 0.5mg clonazepam and progressively got worse over the last 3 years, I am forced to believe that the cold turkey cessation is the cause. Probably because of the persistent hyperexcitability induced by the withdrawal or some other mechanism(considering benzos themselves aren't neurotoxic).

 

However, I'm having trouble finding much research on the matter(I've scoured through a lot of journals extensively) that established a positive link.  :-[ If anything, people use benzos to treat neuropathy. Neither does my neurologist agree that it could have been a cause. I have no idea what to think anymore. Is this just coincidence that I developed neuropathy because something else was at play at the same time I quit benzos and that I'm just grasping at straws by making the link? Or is my intuition right and I'm onto something? I feel like there may be someone else out there like me who has been diagnosed with idiopathic small fibre neuropathy that may have been caused by benzos withdrawals.

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Yes, I know someone who has been diagnosed with small fibre neuropathy caused by WD.

I don’t think she is on here though.

 

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I am TREATED for small fiber neuropathy from WD.

The only thing is....I was tested for everything under the sun as well...but I did not get the skin punch test.

By the time I got to it my doc was like "do you wanna do it? Or do you wanna just start the treatment for it and see if it works"

I opted to just try the treatment (amitriptyline)

And bingo, it worked.

 

So on paper I am diagnosed SFN from WD...but never had the real test.

And my doc TOTALLY agrees it was WD

I couldn't even walk or use my limbs properly, and had excruciating neuropathic pain......7 months prior I was a high level athlete who competed on American Ninja Warrior.....

 

So yes, totally WD

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Oh wow. I'm sorry to hear that :/ I was extremely functional too just before this happened but I'm struggling to find a doctor who would agree with me that this is the cause. I mean how hard is it to make that connection? I agree there isn't much literature out there (trust me, I've searched a lot and also have a scientific background), but going from a 2 to a 10 on the disability scale within a few months with the WD being the only thing that changed shouldnt be too hard right?  ::)

 

I'm glad your doctor recognizes these as part of the WD and glad that you found something that works. I've however been to hesitant to try any meds even though I'm prescribed Pregabalin. I mean I took benzos for insomnia and now I have full blown neuropathy. Its easy not to want to trust any of these poisons.

 

Do you mind if I PM'd you to ask you about your specific experience more particular to the kind of neuropathy and the timeline of symptom progression?

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Cc me in pls..

Suspect we might be on a kinda similar journey of exploration, maybe..?  -just lost my face nerves again on top of it all..

Fwiw, and I have specific GI issues this is one of my thoughts on a pathway for ME..

 

Medication and WD (mine) -GI paralysis, -SIBO, leaky gut, histamine/Mast cell activation (or similar(ish)??, -toxicity/inflammatory, -Neuropathy..

Im very unorganised, have a million windows open on my fone atm.. all this has been done on the fly between Drs and hospitals over the last few days.. -So im not much help atm (if ever)..

Though I just tried (out of desparation) a histamine H1 antagonist (over the counter med) for MY situation and im NOT complaining..!!

 

Im following, I guess..

 

 

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[f6...]

Yes, I believe it is possible!!

 

I'm being worked up for POTS right now and my cardiologist said that the benzo and tapering is definitely contributing to the overdrive of the sympathetic nervous system!!

 

There is a chance that it can go away, once I'm done tapering, I'm hopeful!

 

But what you are describing is very common in Dysautonomia/POTS patients!

Many of them have SFN and digestive issues etc.

 

I hope it gets better for you!

 

Winnie

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Oh wow. I'm sorry to hear that :/ I was extremely functional too just before this happened but I'm struggling to find a doctor who would agree with me that this is the cause. I mean how hard is it to make that connection? I agree there isn't much literature out there (trust me, I've searched a lot and also have a scientific background), but going from a 2 to a 10 on the disability scale within a few months with the WD being the only thing that changed shouldnt be too hard right?  ::)

 

I'm glad your doctor recognizes these as part of the WD and glad that you found something that works. I've however been to hesitant to try any meds even though I'm prescribed Pregabalin. I mean I took benzos for insomnia and now I have full blown neuropathy. Its easy not to want to trust any of these poisons.

 

Do you mind if I PM'd you to ask you about your specific experience more particular to the kind of neuropathy and the timeline of symptom progression?

 

Yes, you can PM me, I happy to help in any way!

And yes, I understand not wanting another med! I was the same...benzos for sleep then nightmare WD and in a wheelchair for months! Only ended up trying amitrip after trying natural things and then being in such unbearable pain, and couldn't even lift a spoon to feed myself or bathe myself etc., I had to have 24 hr care. It was ridiculous. So yeah, I went for it, and I seem to be a lucky one that it worked for.

But my doc was very careful with me. The start dose for amitriptyline is 10-20mg....we started with 2.5mg and went very very small till I reached 10mg. And that was it. All I needed...a stating or child's dose, lol.

Anyway, feel free to pm me

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Hey rabbit,

Just letting u know I was also diagnosed with Small fiber neuropathy by my neurologist as well. However I had a skin punch biopsy done and it was negative so now the same neurologist says it could be sfn or some sort of “central pain sensitization” of the nervous system. Like u, I was completely normal and active until I cold turked off meds not knowing what would happen. Shortly thereafter I began developing all kinds of sx, chief of which is the paresthesia indicative of sfn. 

 

Its been close to 5 years since developing symptoms and I have had little success in finding relief. For this reason I seldom visit the boards because I only have bad news and I’m afraid of discouraging others from believing they will get better (in no way am o suggesting your case will follow a similar course to mine).

 

While I’m still not sure if what I have is “benzo withdrawal/ or benzo damage/“ or even benzo related — the timing of my illness with my cold turkey still has me questioning - that and the docs have done numerous tests on me (mris, ct, pet scans, emg, skin punch biopsy, tilt table tests, etc..) and so far all come back clean. While no doctor I’ve met (and I’ve seen at least 10 different kinds) seem to connect my symptoms with cold turkey withdrawal - I still wonder.

 

Just like u I was Leary of trying any real drug treatment other than a brief trial of noratryptaline and gabapentin  and Lexapro— all in small doses. None of them worked but I do wonder if I should have increased dosage to give them more of a chance at working. Most recently my doc has put me on 1.5mg of naltrexone— and wants to increase dosage. I’ve experienced little help but may just give in and give this drug a fair shot. “Natural healing” and time hasn’t worked for me. If it is benzo related I think it’s more “damage” for me as opposed to w/d— and would be “protracted” on the benzo forum.

 

Message me if u would like- if he happy to share info. Just letting you know you are not alone and I hope you can recover.

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I do not exclude that benzo with prolonged use can damage small nerves, but in my opinion, neuropathy associated with benzodiazepines is still a central neuropathy, since these substances affect the central nervous system.

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Yeah I lean toward Arnold53’s position. In the end I think your best course of action rabbit is to insist on getting tested at least to rule out other possibilities. Don’t let doctors dismiss your symptoms. Then decide if their treatment (which will most likely be more meds of a different sort) is best for you. Keep us posted.
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Thanks for you reply Joe. Your story reads almost like mine! I guess we'll never know if this was benzo related :/ Like you said, it could be something else but ignoring the timing of the incidence of symptoms is something we cannot ignore even if the doctors do. Cause they are trained to go based on existing medical literature and I can bet that theres no study out there that forces people to CT b long term benzos use to see if they develop neuropathy
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I agree too. I've tried to research into this matter but found nothing that implicates BZD WD in peripheral nerve damage. But I did find a study that shows prolonged glutamate increase in the insula region in the brain can infact damage small fibres without actually even damaging the receptors in the target region in the brain.

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5741296/

 

Another point I echoed in the comment before this was we'll never find a study that could establish that link because (unlike other peripheral nerve damaging drugs like alcohol, chemotherapy drugs, floxies, etc for which there's plenty of research done) you'd have to forcibly study people who have CTd after long term use. Thats a dangerous entry criteria for a study and I'm sure no same person would entertain that

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This stuff is so hard to work out.. :( Im about to see a fresh Dr to address the sudden (or not so sudden really) loss of face nerves in a Bells Palsy type fashion.. I just cant get the swelling around the back of my jaw, Tmj, sinus, ear, to reduce.. Im having more success poking Vicks up my nose than the Prednisone they insist on..!! The swelling didnt appear as such until day 9 post incident, and it all started for the second time post a brain event 2 yrs apart..

 

This im pretty sure is from systemic inflammation, and ties in with some pretty dominant foot neuropathy, also with a possible contributing trigger of an ingrown tie nail we been working on for near a year..

I have to check on the exact definition of small fibre, but if it can present as the fine sting, burn, stab, jab, prick, ant bite, and numbness, perhaps with circulatory issues, redness, fluid, muscle tone type stuff, then thats been on the increase too.. 

 

I can compare to an extent the neuropathy from a torn sciatica, and resultant foot drop from the accident pre meds, and while quite similar in many respects, its not nearly as problematic unless the nerve is physically impacted on, -usually by a GI bolus at a certain point within my colon combined with surgical stricture from the rupture and changed orthopaedic structure..  This resolves 100% and instantly once the pressure on the nerve is relieved.. -In fact it cycles with peristalsis contractions..

 

Im just rambling, -early AM with RLS, and worried about how the hell im going to get the new (temp) Dr to even listen..

I get that we have to get the swelling down around the facial nerve, but It might be prudent to look at the WHY..!!?? Im pretty sure in this instance its stemming from bad shit getting in my blood via the GI, my personal ongoing problem, and then an immune/histamine response, but thats my personal pathway, if true.. That does not exclude a central issue as well, as I mentioned to Arnold (I think) ages ago.. Hell, it doesnt exclude the release of stored (cellular) glutamate from damaged cells, or perhaps even an aspect of the dreaded NO OOH NOO (or whatevs) cycle, or even a dopamine component as can be seen with some movement disorders..??  I just get lost on it all as there seem to be so many possible pathways and the body is beyond complex.. Without specific testing and professionals that give a shit and have time, it really is a shit show..

 

Thanks.. Dont mind me, -I think im all vented out, for now..

-Self diagnosed to death, but at least I tried.. :(

 

:)

 

 

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This stuff is so hard to work out.. :( Im about to see a fresh Dr to address the sudden (or not so sudden really) loss of face nerves in a Bells Palsy type fashion.. I just cant get the swelling around the back of my jaw, Tmj, sinus, ear, to reduce.. Im having more success poking Vicks up my nose than the Prednisone they insist on..!! The swelling didnt appear as such until day 9 post incident, and it all started for the second time post a brain event 2 yrs apart..

 

This im pretty sure is from systemic inflammation, and ties in with some pretty dominant foot neuropathy, also with a possible contributing trigger of an ingrown tie nail we been working on for near a year..

I have to check on the exact definition of small fibre, but if it can present as the fine sting, burn, stab, jab, prick, ant bite, and numbness, perhaps with circulatory issues, redness, fluid, muscle tone type stuff, then thats been on the increase too.. 

 

I can compare to an extent the neuropathy from a torn sciatica, and resultant foot drop from the accident pre meds, and while quite similar in many respects, its not nearly as problematic unless the nerve is physically impacted on, -usually by a GI bolus at a certain point within my colon combined with surgical stricture from the rupture and changed orthopaedic structure..  This resolves 100% and instantly once the pressure on the nerve is relieved.. -In fact it cycles with peristalsis contractions..

 

Im just rambling, -early AM with RLS, and worried about how the hell im going to get the new (temp) Dr to even listen..

I get that we have to get the swelling down around the facial nerve, but It might be prudent to look at the WHY..!!?? Im pretty sure in this instance its stemming from bad shit getting in my blood via the GI, my personal ongoing problem, and then an immune/histamine response, but thats my personal pathway, if true.. That does not exclude a central issue as well, as I mentioned to Arnold (I think) ages ago.. Hell, it doesnt exclude the release of stored (cellular) glutamate from damaged cells, or perhaps even an aspect of the dreaded NO OOH NOO (or whatevs) cycle, or even a dopamine component as can be seen with some movement disorders..??  I just get lost on it all as there seem to be so many possible pathways and the body is beyond complex.. Without specific testing and professionals that give a shit and have time, it really is a shit show..

 

Thanks.. Dont mind me, -I think im all vented out, for now..

-Self diagnosed to death, but at least I tried.. :(

 

:)

 

Just wondering if you are eating a lot of salty foods and too much sugar? That can cause increased blood pressure and fluid retention, which can possibly be a cause of Bell's Palsy and contribute to the swelling?

 

I had a situation where I was eating a lot of salt and sugar and ended up in a really bad situation with inner ear swelling to the point that I had really bad vertigo spells and fell over and smashed the back of my head. I stopped eating all salt and sugar foods and it all went away. I normally don't eat such crap but during lockdown, my son was bringing that crap into the house and I ate it. Just wondering and something to consider?

 

"But, Bell’s palsy has also been associated with headaches, chronic middle ear infections, high blood pressure, diabetes, tumors, and Lyme disease, among other things, according to the National Institute of Neurological Disorders and Stroke (NINDS)."

https://www.healthline.com/health-news/how-serious-a-condition-is-bells-palsy#What-causes-Bells-palsy?

Well wasnt I a cranky little puss this morning..!!

 

Thanks Eric, its all worth considering,  but no, that doesnt seem to fit.. I try to keep “the simplest explanation is often the most likely” in mind, but there are so many little things all pointing in a direction over a long period that I cant ignore the possibility of a more complex systemic pathway..

The Dr was pretty thorough today considering a new first appointment, and once fasted tomorrow I can get a repeat of the full bloods to compare with those of 2yrs ago in hosp.. -I also have pre, and inbetween bloods for comparison.. That will be one aspect done, if I can get a competent analysis done..

I did get more pills though, -Naproxen 500 x2/d, so I guess he thinks the day was a success.. lol

-Back in a week..

 

We just went into a 3day Covid lockdown today, so there goes my app. with the new dietition, but my normal Dr is keeping our planned 4x long app on Thurs..

No news is good news on the MRI, at least this event finally got me to do the follow up on the white stuff detected (for the first time) on the MRI from 2yrs ago.. Though im sure you know “white stuff” often doesnt mean much in and of itself..

 

I hope people dont link this directly to benzos, I try to be clear this is rather personal to my own journey in all its many facets..

 

:)

 

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  • 4 months later...
There's no doubt benzos destroy nerve cells.  I have chronic fatigue and do dumb things that I never used to do.  Destroyed my senses,  brain and entire nervous system.
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I am going to a podiatrist in a week… I don’t know what they can offer but my feet give me agony. I have the outlier symptom of blood pooling in my feet when I stand ( it returns to normal in color when I lay down ).

My feet are numb and sensitive at the same time and I have overall body numbness and skin burning.

I would not like to take any medication as my nervous system is shot and I never should have gone this route.

I am 22 days Benzo free.

 

Good luck all,

 

HopeFull01

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