Author Topic: Anyone diagnosed with small fibre neuropathy after cold turkey cessation?  (Read 1082 times)

[Buddie]


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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[Buddie]

Yeah I lean toward [...]’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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[Buddie]

Thanks for you reply [...]. 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
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

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
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

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 [...] 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.. :(

:)

Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

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 [...] 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 [...] 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..

:)
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.