Benzo numbness /burning cause

So I have posted about my new problems with peripheral neuropathy, paresthesia etc recently. But my question here is really not about my problems per se, but rather what is the consensus on what is going on in physiological terms with benzo induced neuropathy, numbness, burning etc. Specifically my question is whether dysfunction exists in the neurons at the site of where the sensations are occurring or not. My understanding is that neurological tests exist to tests whether the local neurons are damaged. It is my sense that there is an idea that runs contrary to this that either postulated a just plain mysterious cause of these disorders that comes either from some damaged portion of the brain, or perhaps spinal column, or some other kind of random or ubiquitous  dysfunction in the GABA receptors in the synaptic cleft Thanks

It is not permanent damage but these meds mess up the GABA receptors in the brain and those cells control all muscles in the body. The burning and pain is not permanent but it is muscle fibers rubbing back and forth together and that causes the pain. Ice and cold towels help. Only time is the healer for this damage.

It is not permanent damage but these meds mess up the GABA receptors in the brain and those cells control all muscles in the body. The burning and pain is not permanent but it is muscle fibers rubbing back and forth together and that causes the pain. Ice and cold towels help. Only time is the healer for this damage..

Hi Rose, -can I piggy back off your post pls..

 

I wont argue that this is one pathway of pain and discomfort, but I think there is another that is beyond the isolation of gabba receptors... One that is very neurologically orientated... Im still unsure if its peripheral or central or a combination of both.. Im perhaps “lucky” in that I can do a compare contrast (fwiw) due to physical damage at a spinal level from blunt force trauma.. Asides leg numbness, the burning, stabbing, tear toes off pain is isolated to my foot, representative or perhaps “phantom” in nature...

 

Somewhat similar though lesser neuropathic pains have presented in my other foot in conjunction with  medicine discontinuations, and its hard to say where the actual damage is based.. On the other hand, suddenly losing half my face muscles last year stemmed very much from deep in my poor brain.. Infact the first day, It was the opposite side of my face that was impaired..!! (No I didnt get confused in the mirror.. ) Currently these symptoms that present in my face fluctuate tightly in unison with the rest of my symptoms...

 

There was some initial improvement, but the remainder has persisted, thus far, but then that is still in accordance(ish) with my overall WD symptoms, Its too early to call either way as to permanent or temporary for me...

For my face, the ER gave a “bells palsy type” diagnosis.. Its a diagnosis describing symptoms, not an actual “thing”...

 

Well thats my story anyways... Im not prepared to dig up links atm, so ill leave it there..

 

While I appreciate very much those who have posted here I am a little surprised there is little response here and other posts I have made in regard to the struggles with  paretshesia numbness neuropathy whatever Supposedly a lot of benzo folks struggle with this but I am beginning to wonder if that is overstated I am kind of considering making this thread a kind of ongoing log, perhaps partially with my experience, and anything I can glean about dealing with this issue. Perhaps some of this will belong on the Alternative Therapies thread since most of what  I am hoping to discuss will be under that category The assumption is that whatever is happening to those of us with neuropathy/paresthesia, one might assume that it is somehow related to  the nerve problems associated with classic neuropathy. In those cases there is excellent study of photomodulation therapy for peripheral neuropathy which show about a 57 percent improvement in both numbness and pain. The other two substances I will mention for now are Lion's Mane and homeopathy Hypericum both of which have excellent rat and mouse studies to support their efficacy.

 

I got to say I cannot understand that no one I have seen with protracted numbness/ paresthesia ever seemed to even mention these therapies

 

 

 

https://www.talkaboutlight.com/topics/neuropathy/

 

Howdy all,

 

It’s hard to put into words the suffering from the burning, pain, numbness etc. associated with being off benzos.

 

Face, head, torso, hip, pelvis, leg and now arm. All on left side.

 

I’m 32 months benzo free. The burning and pain has really ramped up over the past 16 months. Add in weakness and vertigo, I can’t walk, and have been bed bound last few months.

 

16 months ago I was at the gym 2 hours a day.

 

Really hard to figure out what’s going on ...

 

Trying to educate myself to understand - is this peripheral? Is it brain/CNS? Both? Is it reversible? It is muscle or nerve? What can I do to help myself get better?

 

i don’t have any answers right now ....

 

I do understand your pain. Keep moving forward, we will eventually find something that helps us!

 

 

 

 

Power MM Really sorry. I assume you are posting on on Protracted Recovery Support? Have you had neurological tests? I am not saying that is likely to get you anywhere, but I know there is a test to determine demyelineation as opposed to the other types of nerve damage. I assume you are aware of some of the more popular alternative therapies for neuropathy such as Lions Mane, Alpha lipoic acid, biomodulation light therapies etc. But of course you raise the magic question on whether this could be some kind of different benzo induced damage as opposed to the more classical neuropathies

 

Can I ask if you had some of this during withdrawal? I don't know much about the experience of others but just one side of the body seems unusual. I personally I am most intrigued by some of the neurofeedback light therapy machines which help in retraining the brain to reinterpret the nerve signals if there is no way to repair with organic damage. I imagine you saw the study on posted on that therapy. I also think there are some forms of magnesium that are not often utilized that can avoid the limitation of bowel tolerance to maintain really high levels of magnesium How have you reacted to magnesium?

 

There are of course some kind of serious potential causes for numbness on just one side, but I imagine you have seen those things

 

Best wishes to you

Howdy MattNapa,

 

Thanks for the message.

 

I occasionally post in the protracted board, but both there and overall, I haven’t posted a lot.

 

I’ve had some neurological tests - everything has come back as fine and healthy. Which is perplexing, because what I and so many others are going thru is very real.

 

It’s funny in a way, but yes, I’m familiar with ALA, Lions Mane, and photo modulation. It’s funny in that we have become so knowledgeable about so many facets of good health.

 

During withdrawal, I did have some minor irritation in my left hip. Felt arthritic. That feeling / thought began to spread about 16 months ago. It went down into leg, and now up into torso and neck and head. So bizarre!

 

I think having an issue with just one side of the body is common. Especially left side with Clonazepam users.

 

I don’t think I’ve seen the post on the neuro feedback light therapy. I’ll look for it. JIC if you can, can you share the link with me?

 

Things got so bad, I went to ER last week. Was checked out, had MRI - everything seems fine.

 

Appreciate you and all you’ve contributed here on BB!

 

 

 

Alex

 

 

 

 

 

 

 

 

Hey there! So I thought I would join this thread because I too am a horrific case of benzo induced neuropathy. My opinion is that it is slightly different than other neuropathies. Simply because for example diabetic neuropathy comes from long standing high glucose and damage to the nerves, like your feet are numb because the nerves are just straight up damaged. Where as that's not the case here. For me at least.

I was the picture of health, a high level athlete, exceptional diet etc. After 6 months of benzos (for sleep, now know it was prob just hormonal to begin with) and then awful CT and polydrugging in facility.....I was hit so hard with neuropathic pain and weakness that I couldn't walk, feed myself, bathe myself, etc. Was in a wheelchair for months. The pain and agony was nonstop crying cuz it hurt so bad, and of course couldn't sleep either, so no escape. Had all kinds of painful parethesea  from head to toe....with my left side being the worst and still is my weakest .

I tried ALA, magnesium, D-mannose but all seemed to increase more nerve firing. Like that would be good for someone who has diabetic neuropathy, but not for me because it's like my nerves were over excited and didn't need anything to Light them up, haha

Neurologists were freaking out...was tested for everything under the sun, 8 MRIs, lost count of bloodworks, x-rays, ultrasounds, was even hospitalized after a top neurologist examined me on the spot. They were just sure I had some awful neuro disease! So then spent 3 days in hospital for more MRIs, nerve conduction test, EMG, and a stinking lumbar puncture.....everything perfect.

My own neurologist and I finally decided after 5 months to try amitriptyline...I mean I couldn't care for myself and my family was pushing me in wheelchair and the pain oh the pain!

So I baby dosed the amitriptyline to get to 10mgs, which is actually just the starting dose, lol

I swear I'm not pushing amitrip, cuz I hate taking it, but it worked.

Not 100%, but took away about 75-80% of the pain away, so now I just deal with basic tingles and weakness, especially if on my legs a lot. Nowhere near my previous level of physical activity yet(still can't run and lift half what I used to), but it has allowed me to do normal things, like yesterday I worked, went to the gym, cooked dinner etc.

So I went from nonfunctional in wheel chair in October and then was walking and doing physical therapy by end of November.

The question is is the med taking away the pain? Or just masking it?

I think it is masking it, because it's definitely still there. So will it completely go away? I sure hope so!! Everyone says it does eventually, so that's what I'm hoping for! Each month is now slightly better than the last!

 

Btw, my neurologist totally believes in benzo withdrawal hell now!

After watching me, he has done more and more research hoping to help the next person

 

I looked at the light therapy you were talking about, looks interesting!

Here is an interesting article about amitrip, about it's abilities in nerve growth factor. Again only because it has helped me...I don't love it because it has its own side effects and may not be good for people with cardiac issues...and it's another stinking pill!!

But careless doctors and meds ruined my life....and a careful doctor and med also just saved it.

 

https://www.sciencedaily.com/releases/2009/06/090625133059.htm

 

Hi SouthernBelle8,

 

Thank you 😃

 

 

 

Alex

 

 

Howdy MattNapa,

 

Thanks for the message.

 

I occasionally post in the protracted board, but both there and overall, I haven’t posted a lot.

 

I’ve had some neurological tests - everything has come back as fine and healthy. Which is perplexing, because what I and so many others are going thru is very real.

 

It’s funny in a way, but yes, I’m familiar with ALA, Lions Mane, and photo modulation. It’s funny in that we have become so knowledgeable about so many facets of good health.

 

During withdrawal, I did have some minor irritation in my left hip. Felt arthritic. That feeling / thought began to spread about 16 months ago. It went down into leg, and now up into torso and neck and head. So bizarre!

 

I think having an issue with just one side of the body is common. Especially left side with Clonazepam users.

 

I don’t think I’ve seen the post on the neuro feedback light therapy. I’ll look for it. JIC if you can, can you share the link with me?

 

Things got so bad, I went to ER last week. Was checked out, had MRI - everything seems fine.

 

Appreciate you and all you’ve contributed here on BB!

 

 

 

Alex

 

 

  Thanks Alex It is so strange in being stuck with between the compassion I have for both what you are going through, and a fear, and almost repulsion from it. Not repulsed by you of course, but

 

I am not sure I am built for enduring the amount of pain and confusion you are going through, and it is a difficult portend to consider for myself in the future. That being said I have been

 

increasingly able to have a little more calm and endurance with my symptoms than I had at the beginning. I believe this calm may be coming from the photo modulation treatments I am receiving

 

from my practitioner who is lovely caring woman which always helps. I definitely had a conversation with her about getting some hypnotherapist to try to increase my ability to endure the

 

symptoms. Her reply 'well that is what this therapy will do for you" and referred to increasing my " orgone body' A reference no doubt to Wilhelm Reich The technology has a rather interesting

 

history which I am only partially aware of , but goes back to William O Becker and his book " The Body Electric" Some of this stuff is of course on the 'Voodoo' side for some of us, but for me at

 

least, it is intriguing The machine my practitioner is using is the Indigo and I found her on a Indigo practitioner finder list which I am having trouble finding on the web

 

 

Also I want to compliment your demeanor in the midst of what is happening to you. As I said your story is a bit scary to me, and all of us to some degree, but your seeming courage and clarity in

 

the midst of it is very much encouraging at the same time

 

  Thanks so much for your contribution here, and good luck on your continued journey

 

 

                                                                                                                                              Matt

 

 

https://www.talkaboutlight.com/topics/neuropathy/

 

 

SoutherBelle08  Thanks so much to you as well for sharing your story. Happy Amytriptyline has helped you so much. I think young people are much more likely to fully recover eventually, so

 

I surely hope the worse is over for you and a full recovery is certainly possible if not likely. The part of your story with your neurologist is so heart warming as well. As you so rightly say, it is

 

great to feel your plight may now eventually lead a neurologist who will perhaps open the ears of his colleagues Congratulations for your role in that

 

 

I really appreciate you sharing your story This thread has been special already for me since sharing a specific part of the Benzo panoply of phenomenon seems to create a greater connection. I of

 

course am small potatoes compared to what most here have gone through. But even in my small journey I have been able to gain a little encouragement from you in rising to the occasion in

 

terms of perseverance

 

  Your story has helped me, and of course my best wishes on your recovery

 

  Thank You

 

                      Matt

 

 

 

Hi Matt,

 

Thanks for your message. You write incredibly well.

 

It’s hard to put into words what I’m going thru right now - it is disheartening, painful, fearful, limiting.

 

And I know it’s not something others want to read about.

 

Can you share with me more about what you are doing with light therapy?

 

Thanks again very much,

 

 

Alex

 

 

 

Alex I would definitely say it is something  I want to hear about to the degree you are comfortable in sharing. The humanity we connect to in sharing our experiences is incredibly important, especially in the light of how as Benzo sufferers are shut out from so many resources that '"normal' folks have available to them. I am a bit limited this morning with time and going to work soon. I have been going to my Indigo practitioner once a week for three straight weeks. She normally charges 200 per visit, but is charging me 150. You just lay there for about 2 hours and she moves the light around and asks you some questions You can feel the warmth and the band around your eyes is kind of bright

 

Still frustrated in finding the practitioner finder. I have an email of a pretty famous guy who I first herd about this technology from, so I might send him a message.

Thanks Matt. Look forward to your reply when you have time.

 

I’m open to sharing all I’m going thru. It helps pass the time during the day, and maybe I can provide some insight to others.

 

 

Alex

 

 

Thanks Alex I had opened a thread in the support groups thread on numbness/parstheia/neuropathy/whatever. Maybe we cold consider moving the discussion? I always think of this as much of creating a resource for others to look at now, or in the future, as I do as an active discussion for those involved. Sounds like you have a sense of that as well

Howdy Matt,

 

Thank you.

 

Is it this one?

 

http://www.benzobuddies.org/forum/index.php?topic=236938.0

 

 

 

 

Alex

 

 

Hi Alex Yes indeed. II have mixed feelings on trying to keep up that thread or any of the attempts I have made on the subject This thread is for sure a success from where I stand, but sometimes it 

 

seems like it is better to not try to to attract more posters. I kind of don't get it because there are supposed to be pretty high numbers here with paraesthesia like issues. I saw my GP today for just

 

a general check up so he would continue my Valium prescription. He poked around on my foot and no detectable numbness and he seemed to think my circulation was fine to my feet. I guess tha is

 

good. He talked about Gabapentenin I am really hoping to stay away until I can get off and maybe give itt a year or two to improve. I worry that Gabapentenin will stymie potential heealing to get

 

rid of, or improve, my paresthesia

 

It would be great if you were interested in a little post there just to give it some life, but I am hesitant to ask for such things

Howdy Matt,

 

Thanks for the update.

 

I’d try to keep going without the added med. Overall, seems like all these meds have side effects at some point.

 

I’ll try to find that other post and update it.

 

 

Alex

 

 

Curious if people had/have any physical manifestations that can be seen such as redness near fingertips, redness in toes when cold or redness appearing after very limited scratching. Alo were ensation closely tied to things like sweat and contact with clothing angles of limbs, exertion etc? Thanks

Just adding my name to the list to let you know you are not alone on your symptoms Matt. Paresthesia is my main issue now.  I just got back from the Mayo Clinic a few months ago and had every standard neuro test available- mri, Meg, qSt, autonomic test, tilt table, blood, etc.. all came back normal.. but it’s been almost 4yrs since I cold turkey off meds and shortly thereafter my sx popped up. Docs  I’ve spoken don’t think it’s Benzo related- but then again that’s common . At this point I don’t know what to to think - but thought I’d follow this thread to see if anyone gets relief. Have not tried amatrypaline yet so maybe willing to go back on the med route cuz the wait and do nothing approach hasn’t worked out for me.

Curious if people had/have any physical manifestations that can be seen such as redness near fingertips, redness in toes when cold or redness appearing after very limited scratching. Alo were ensation closely tied to things like sweat and contact with clothing angles of limbs, exertion etc? Thanks

Yup.. Its all evolving still..

Trouble is there is so much going on that im reluctant to speculate... Just defining would be a mission..!!

Walking is getting to be a bit of an issue, and my toes drive me nuts on my good foot.. Red and tight, with needle stabs and sudden cramps/twitches.. Cold and poor cap refill.. Upper leg muscles like lead, and respond badly to exercise, -unlike in the past..

 

Arms and hands similar, but to a lesser extent.. Very easy to go “dead” during a day nap..

-wondering if its oxygen/BP related..?? -or..??

 

 

Just adding my name to the list to let you know you are not alone on your symptoms Matt. Paresthesia is my main issue now.  I just got back from the Mayo Clinic a few months ago and had every standard neuro test available- mri, Meg, qSt, autonomic test, tilt table, blood, etc.. all came back normal.. but it’s been almost 4yrs since I cold turkey off meds and shortly thereafter my sx popped up. Docs  I’ve spoken don’t think it’s Benzo related- but then again that’s common . At this point I don’t know what to to think - but thought I’d follow this thread to see if anyone gets relief. Have not tried amatrypaline yet so maybe willing to go back on the med route cuz the wait and do nothing approach hasn’t worked out for me.

 

Hi Joe Thanks for jumping aboard and welcome. Yes Amytripyline, I do not her as much about it It supposedly can also help with acid reflux which I have really badly as well, though in that case it predate Benzo's so it might be the drug of choice for me. I don't know much about protracted so I am certainly in no position to offer opinions. Are you having much pain?  Now long have you had paresthesiaSometimes it helps me to remember I am not having the pain that many do, but damn the parasthesia just dominates my mind. I have some pain but not much of the shooting variety Itchiness at times seems almost as bad as mild pain

Curious if people had/have any physical manifestations that can be seen such as redness near fingertips, redness in toes when cold or redness appearing after very limited scratching. Alo were ensation closely tied to things like sweat and contact with clothing angles of limbs, exertion etc? Thanks

Yup.. Its all evolving still..

Trouble is there is so much going on that im reluctant to speculate... Just defining would be a mission..!!

Walking is getting to be a bit of an issue, and my toes drive me nuts on my good foot.. Red and tight, with needle stabs and sudden cramps/twitches.. Cold and poor cap refill.. Upper leg muscles like lead, and respond badly to exercise, -unlike in the past..

 

Arms and hands similar, but to a lesser extent.. Very easy to go “dead” during a day nap..

-wondering if its oxygen/BP related..?? -or..??

 

 

Thanks Can't I would ask if you have had a neuro work up, but the problem is of course even if they find organic neurological issues there is not much they are going to do for that either. I see you got off Gabapentin and Lyric Did they help? If so did you get off in the hope of being off all is the better long term road?

 

I am thinking pretty seriously about updosing to where I was a couple of months ago since I have two years until 62 and SSI And I am beginning to wonder if I can continue if this were to get much worse The other choice is to try Gabapentin, Lyria or Amitriptyline

 

There are of course other possibilities such as Celiac and Gluten Sensitivity Syndrome, and a lot of other unlikely possibilities

 

I

Curious if people had/have any physical manifestations that can be seen such as redness near fingertips, redness in toes when cold or redness appearing after very limited scratching. Alo were ensation closely tied to things like sweat and contact with clothing angles of limbs, exertion etc? Thanks

Yup.. Its all evolving still..

Trouble is there is so much going on that im reluctant to speculate... Just defining would be a mission..!!

Walking is getting to be a bit of an issue, and my toes drive me nuts on my good foot.. Red and tight, with needle stabs and sudden cramps/twitches.. Cold and poor cap refill.. Upper leg muscles like lead, and respond badly to exercise, -unlike in the past..

 

Arms and hands similar, but to a lesser extent.. Very easy to go “dead” during a day nap..

-wondering if its oxygen/BP related..?? -or..??

 

 

Thanks Can't I would ask if you have had a neuro work up, but the problem is of course even if they find organic neurological issues there is not much they are going to do for that either. I see you got off Gabapentin and Lyric Did they help? If so did you get off in the hope of being off all is the better long term road?

 

I am thinking pretty seriously about updosing to where I was a couple of months ago since I have two years until 62 and SSI And I am beginning to wonder if I can continue if this were to get much worse The other choice is to try Gabapentin, Lyria or Amytripiline

 

There are of course other possibilities such as Celiac and Gluten Sensitivity Syndrome, and a lot of other unlikely possibilities

 

I

The non accident neuropathy came after the gpn and lyrica.. It all went bad following the sudden opiate C/O and I suddenly lost half my face nerves... CT picked up white spots in my brain, which im sposed to get checked, but like you suggest, -to what end..??

Yes, med free is my path..  Hopefully without anymore big shocks to my system...

My leg stuff started in my thigh shortly after ^^ -probs 8-10 mths ago, as did an increase in many, but not all SX... Its slowly spreading and changing...

Bearing in mind im still tapering the last of my meds..

 

Sorry, pretty brain fried here..

 

Matt, I just want to jump in here and say that I, too, had miserable burning neuropathic pain during my taper. In one leg/foot in particular. My doc prescribed neurontin for me. It did work -- I'd say it reduced the pain/tingling/burning by 75%. Not perfect, but better than nothing. And the pain diminished as I tapered down my benzo.

 

It was a miserable drug to taper off, however.

 

Would I do it again? Yes, absolutely. Some nights the burning and tingling . . . electric shock-like things . . . were pretty much unbearable before I started on neurontin.

 

So, another Faustian bargain with drugs, right?

 

Hope this helps,

 

Katz