Results 1 to 18 of 18
  1. #1

    Peripheral Neuropathy

    Does anyone have information on how to best combat peripheral neuropathy? My wife has been combating it for about six year post neck surgery and it has come back with a vengeance in her left arm and she's literally at her wits end.

    This board has some smart folks, and I would welcome any conceivable solutions to help fight her abject misery.

    Thanks.

  2. #2
    Join Date
    Feb 2007
    Location
    Walnut Creek, California
    I'm not a doc, nor do I play one on TV. But I do have peripheral neuropathy, probably in connection with Type II diabetes. Have had the neuropathy for over 20 years. In the beginning I used Elavil/amitriptyline, which helped for awhile. Then it calmed down for a few years. A diabetic diet was helpful.

    In the past two-plus years I've been taking gabapentin (Neurontin) because of post herpetic neuralgia, which has a been far worse form of neuropathy. The gabapentin has probably helped with the peripheral neuropathy even if I'm not a huge fan of it for the PHN. Once in a while, though, I have to resort to a narcotic, usually Norco. Even half a tablet usually staves off a recurrence for at least a few days, giving me a chance to re-stabilize.

    I assume she's got an internist who knows about this stuff. Or, find a neurologist. Otherwise she'll be seeing an ER doc. Not the best plan for long-term treatment.

    My next plan is to try acupuncture. But I have to wait a month for an appointment. (Cannabis did not help at all.)
    Last edited by Jim3k; 09-26-2021 at 10:16 PM.

  3. #3
    Quote Originally Posted by Jim3k View Post
    I'm not a doc, nor do I play one on TV. But I do have peripheral neuropathy, probably in connection with Type II diabetes. Have had the neuropathy for over 20 years. In the beginning I used Elavil/amitriptyline, which helped for awhile. Then it calmed down for a few years. A diabetic diet was helpful.

    In the past two-plus years I've been taking gabapentin (Neurontin) because of post herpetic neuralgia, which has a been far worse form of neuropathy. The gabapentin has probably helped with the peripheral neuropathy even if I'm not a huge fan of it for the PHN. Once in a while, though, I have to resort to a narcotic, usually Norco. Even half a tablet usually staves off a recurrence for at least a few days, giving me a chance to re-stabilize.

    I assume she's got an internist who knows about this stuff. Or, find a neurologist. Otherwise she'll be seeing an ER doc. Not the best plan for long-term treatment.

    My next plan is to try acupuncture. But I have to wait a month for an appointment. (Cannabis did not help at all.)
    She has tried acupuncture with middling success. She is very leery of opiods, for many reasons. The Neurontin has very little effect. Cannabis does have a small amount of relief, but the accompanying side effects are unpleasant.

    Her PCP recently moved and she isn't very excited about her current doctor. And yes, she has ended up in the ER (many years ago, they clearly don't knoe what to do) and urgent care (steroids offer a brief period of relief.

    I'm very sorry for your condition. As a spouse, it is excruciating to watch someone you care so much about be so incredibly discouraged and frustrated.

    I do understand diet and exercise are the best long term home care practices. But when the pain is worst, the exercise seems all but impossible.

    I don't want to clog this board with our conversation, but you have my utmost sympathy. And I would very much appreciate a PM back and forth regarding more particulars, if you were so inclined.

    Thanks very much for your reply. There's no chance you also suffer from tinnitus? Hers can be debilitating, but I don't believe there's a connection. It's so hard to tell with some of these more nebulous conditions.

    I wish you the best, and appreciate the perspective of the smart folks on this board. I sincerely hope no one else here has this affliction, but if so, I encourage them to speak up.

    Best.

  4. #4
    Quote Originally Posted by Mtn.Devil.91.92.01.10.15 View Post
    She has tried acupuncture with middling success. She is very leery of opiods, for many reasons. The Neurontin has very little effect. Cannabis does have a small amount of relief, but the accompanying side effects are unpleasant.

    Her PCP recently moved and she isn't very excited about her current doctor. And yes, she has ended up in the ER (many years ago, they clearly don't knoe what to do) and urgent care (steroids offer a brief period of relief.

    I'm very sorry for your condition. As a spouse, it is excruciating to watch someone you care so much about be so incredibly discouraged and frustrated.

    I do understand diet and exercise are the best long term home care practices. But when the pain is worst, the exercise seems all but impossible.

    I don't want to clog this board with our conversation, but you have my utmost sympathy. And I would very much appreciate a PM back and forth regarding more particulars, if you were so inclined.

    Thanks very much for your reply. There's no chance you also suffer from tinnitus? Hers can be debilitating, but I don't believe there's a connection. It's so hard to tell with some of these more nebulous conditions.

    I wish you the best, and appreciate the perspective of the smart folks on this board. I sincerely hope no one else here has this affliction, but if so, I encourage them to speak up.

    Best.
    I feel for her. I have chronic nerve pain (but not as bad as your wifeís) since surgery in 2013. I also have bad tinnitus bit it started 30 years ago, long before the pain. For the pain Ive tried Neurontin (hated it), opioids, etc. but nothing works for long. Nsaids helped the pain but they make my tinnitus worse so I canít use them.

    Iíve found that the only thing that helps me is distraction. Seems the brain canít focus on two things at once so if I get lost in my work or reading or watching an engaging movie/tv series I forget about my pain for that period of time.

    Unfortunately I donít have much else to offer other than my sympathy for your wife. Chronic pain is a beatch.

  5. #5
    Join Date
    Feb 2007
    Location
    Raleigh, NC
    Quote Originally Posted by Skydog View Post
    I feel for her. I have chronic nerve pain (but not as bad as your wifeís) since surgery in 2013. I also have bad tinnitus bit it started 30 years ago, long before the pain. For the pain Ive tried Neurontin (hated it), opioids, etc. but nothing works for long. Nsaids helped the pain but they make my tinnitus worse so I canít use them.

    Iíve found that the only thing that helps me is distraction. Seems the brain canít focus on two things at once so if I get lost in my work or reading or watching an engaging movie/tv series I forget about my pain for that period of time.

    Unfortunately I donít have much else to offer other than my sympathy for your wife. Chronic pain is a beatch.
    Would you happen to have found anything that helps with tinnitus or is your tinnitus connected to the chronic nerve pain? Don't mean to derail the conversation but I really do need to start trying to lessen my tinnitus.

    Mtn.Devil, I hope your wife finds comfort, it's clear from your post how much you care about her

  6. #6
    Quote Originally Posted by elvis14 View Post
    Would you happen to have found anything that helps with tinnitus or is your tinnitus connected to the chronic nerve pain? Don't mean to derail the conversation but I really do need to start trying to lessen my tinnitus.

    Mtn.Devil, I hope your wife finds comfort, it's clear from your post how much you care about her
    Honestly, the only thing that helps is ear plugs. Very frustrating. She frequently has to leave crowded and noisy situations.

  7. #7
    Quote Originally Posted by elvis14 View Post
    Would you happen to have found anything that helps with tinnitus or is your tinnitus connected to the chronic nerve pain? Don't mean to derail the conversation but I really do need to start trying to lessen my tinnitus.

    Mtn.Devil, I hope your wife finds comfort, it's clear from your post how much you care about her
    Elvis, I am by no means a dr., and my tinnitus was sporadic. But my ENT started me on a low dose of a diuretic daily (12.5 mg of Hydrochlorothiazide) for MťniŤreís disease, which has all but eliminated my tinnitus. At one point, he mentioned we could bump up the dose if necessary, but 12.5 mg has been sufficient for me.

    Good luck! I know how debilitating tinnitus can be.

  8. #8
    Quote Originally Posted by elvis14 View Post
    Would you happen to have found anything that helps with tinnitus or is your tinnitus connected to the chronic nerve pain? Don't mean to derail the conversation but I really do need to start trying to lessen my tinnitus.
    Ö
    No I havenít found much that helps the tinnitus except a good nights sleep, distraction and acceptance over time. The opposite makes it worse - stress, lack of sleep. Also in my case NSAIDS and age made it worse - itís gotten even louder in last couple of years. One other thing - I read tinnitus news groups way back when it started and found some useful info changing your interpretation/reaction to the tinnitus- that helped some.

    My tinnitus long preceded my nerve pain so is unrelated. In fact mine started suddenly in my mid 30ís and realky freaked me out so I tried everything I could back then. For example I found an article in a major medical journal claiming a very successful treatment by feeding in a matching sound into your less affected ear and training you brain to Ö blah, blah. I called the lead author and asked if they would treat me but he said they werenít doing it anymore. That was a big red flag - if it really cured tinnitus then that would be ALL he would be doing and he would be getting very. very rich along the way. But I was desperate so I went to Duke audiology and they allowed me to set up a machine in a lab and come in every afternoon, trying to duplicate the treatment described in the article. I got it set up best I could but no luck and I gave up on it after about 3 weeks.

    But tinnitus has multiple causes so what works for you might be different. In my case the likely cause was an unexplained bilateral extreme dip in my hearing across a narrow band of higher frequencies, like maybe 8-10 khz (or something like that). Apparently when your brain is missing expected audio stimuli it unhelpfully fills in the blanks for you. Or something like that.

    Sorry I canít be more help. I know that after a year or so of stressing out I slowly worked on acceptance of it and that helped a lot. Also not thinking about it helps, lol.

  9. #9
    Quote Originally Posted by Mtn.Devil.91.92.01.10.15 View Post
    Honestly, the only thing that helps is ear plugs. Very frustrating. She frequently has to leave crowded and noisy situations.
    I have the same noise problem. On holiday visits Iíve had to leave the room simply because everyone was playing a game, having a great time and their voices and laughing were too loud for my tinnitus laden ears. Itís a pain and difficult to explain. ďHey guys and gals - can you quit having so much fun so I can stay in the room?Ē

    Also I take earplugs with me. And even with those I have to stay away from some sporting events because the cheering is too loud. Hasnít been a problem at Duke football game though. :-/

  10. #10
    Join Date
    Feb 2007
    Location
    Raleigh, NC
    Quote Originally Posted by SavDukeGrad View Post
    Elvis, I am by no means a dr., and my tinnitus was sporadic. But my ENT started me on a low dose of a diuretic daily (12.5 mg of Hydrochlorothiazide) for MťniŤreís disease, which has all but eliminated my tinnitus. At one point, he mentioned we could bump up the dose if necessary, but 12.5 mg has been sufficient for me.

    Good luck! I know how debilitating tinnitus can be.
    Quote Originally Posted by Skydog View Post
    No I havenít found much that helps the tinnitus except a good nights sleep, distraction and acceptance over time. The opposite makes it worse - stress, lack of sleep. Also in my case NSAIDS and age made it worse - itís gotten even louder in last couple of years. One other thing - I read tinnitus news groups way back when it started and found some useful info changing your interpretation/reaction to the tinnitus- that helped some.

    My tinnitus long preceded my nerve pain so is unrelated. In fact mine started suddenly in my mid 30ís and realky freaked me out so I tried everything I could back then. For example I found an article in a major medical journal claiming a very successful treatment by feeding in a matching sound into your less affected ear and training you brain to Ö blah, blah. I called the lead author and asked if they would treat me but he said they werenít doing it anymore. That was a big red flag - if it really cured tinnitus then that would be ALL he would be doing and he would be getting very. very rich along the way. But I was desperate so I went to Duke audiology and they allowed me to set up a machine in a lab and come in every afternoon, trying to duplicate the treatment described in the article. I got it set up best I could but no luck and I gave up on it after about 3 weeks.

    But tinnitus has multiple causes so what works for you might be different. In my case the likely cause was an unexplained bilateral extreme dip in my hearing across a narrow band of higher frequencies, like maybe 8-10 khz (or something like that). Apparently when your brain is missing expected audio stimuli it unhelpfully fills in the blanks for you. Or something like that.

    Sorry I canít be more help. I know that after a year or so of stressing out I slowly worked on acceptance of it and that helped a lot. Also not thinking about it helps, lol.
    Thanks for the feedback guys. Every now and then I've started to Google it here and there and even tried a supplement once. Generally the news I was reading wasn't good. I am pretty stressed and I don't sleep much and I do think this makes it worse. For me it's not painful and most of the time I can ignore it but it does cause an issue with hearing, it's annoying as hell, and for someone that's ADHD, I swear it makes it harder to concentrate on anything for any extended period of time (or if it's bad a short period of time).

    I really need to see if my PCP has any thoughts on it next time I go for my yearly checkup.

  11. #11
    Quote Originally Posted by elvis14 View Post
    Thanks for the feedback guys. Every now and then I've started to Google it here and there and even tried a supplement once. Generally the news I was reading wasn't good. I am pretty stressed and I don't sleep much and I do think this makes it worse. For me it's not painful and most of the time I can ignore it but it does cause an issue with hearing, it's annoying as hell, and for someone that's ADHD, I swear it makes it harder to concentrate on anything for any extended period of time (or if it's bad a short period of time).

    I really need to see if my PCP has any thoughts on it next time I go for my yearly checkup.
    It can be incredibly debilitating. And embarrassing. And painful.

    When someone is making a noxious noise, it's easy enough to ask them to stop. But some people simply have unbearably loud talking voices. Some situations, the acoustics are excruciating.

    It's very difficult to watch.

  12. #12
    Join Date
    Feb 2008
    Location
    Oregon
    We have some experience with peripheral neuropathy and also the thread hijack topic, tinnitus.

    Mrs. Neals is the one with P N in her right leg. Her way to deal with it is two-fold. First, lots of Advil (more than recommend amounts). Second, she found a non-traditional therapist who hooked her up with an audio tape that plays special tones that somehow mask the pain. Sounds a bit woo woo to me (probably a strong placebo effect along with relaxation) but she says it works.

    My tinnitus is the tonal variety - very high pitch and loud tone in each ear all the time. But, when I put my hearings aids in, the tinnitus goes away. My audiologist says this is impossible but what can I say, itís true. I recently got new aids that have a tinnitus therapy setting, but I havenít had them long enough to say whether that will help.

    N

  13. #13
    Join Date
    Feb 2007
    Location
    Steamboat Springs, CO
    Tinnitus in my left ear started for me 2.5 years ago -- simultaneously with a substantial hearing loss in my left ear. "Everyone is different." To me, my tinnitus is only noticeable when I have removed my hearing aids -- the amplified sounds through my Oticons drowns out the "distant siren" sound of the tinnitus.

    Moroever, the docs have no idea why I lost so much hearing.
    Sage Grouse

    ---------------------------------------
    'When I got on the bus for my first road game at Duke, I saw that every player was carrying textbooks or laptops. I coached in the SEC for 25 years, and I had never seen that before, not even once.' - David Cutcliffe to Duke alumni in Washington, DC, June 2013

  14. #14
    Quote Originally Posted by Neals384 View Post
    We have some experience with peripheral neuropathy and also the thread hijack topic, tinnitus.

    Mrs. Neals is the one with P N in her right leg. Her way to deal with it is two-fold. First, lots of Advil (more than recommend amounts). Second, she found a non-traditional therapist who hooked her up with an audio tape that plays special tones that somehow mask the pain. Sounds a bit woo woo to me (probably a strong placebo effect along with relaxation) but she says it works.

    My tinnitus is the tonal variety - very high pitch and loud tone in each ear all the time. But, when I put my hearings aids in, the tinnitus goes away. My audiologist says this is impossible but what can I say, itís true. I recently got new aids that have a tinnitus therapy setting, but I havenít had them long enough to say whether that will help.

    N
    Quote Originally Posted by sagegrouse View Post
    Tinnitus in my left ear started for me 2.5 years ago -- simultaneously with a substantial hearing loss in my left ear. "Everyone is different." To me, my tinnitus is only noticeable when I have removed my hearing aids -- the amplified sounds through my Oticons drowns out the "distant siren" sound of the tinnitus.

    Moroever, the docs have no idea why I lost so much hearing.
    I think a hearing aid would likely help my tinnitus (and certainly would help my hearing) but I'm intimidated by the shopping process. I'm a perfectionist and shopping can be a pain for me. Plus I know there are many ripoff companies out there. If I go to a Duke audiologist will they recommend brands? Any personal recs?

  15. #15
    Join Date
    Feb 2007
    Location
    Steamboat Springs, CO
    Quote Originally Posted by Skydog View Post
    I think a hearing aid would likely help my tinnitus (and certainly would help my hearing) but I'm intimidated by the shopping process. I'm a perfectionist and shopping can be a pain for me. Plus I know there are many ripoff companies out there. If I go to a Duke audiologist will they recommend brands? Any personal recs?
    I have had three over more than a dozen years:

    • Phonak (Swiss) bought from an audiologist, which was excellent and not cheap.
    • Phonak bought from Costco, which was one-half the price, but -- as I later learned -- was dumbed down to enable Costco to offer at a lower price. It was helpful, but not ideal.
    • Oticon (Danish) which I bought about a year ago from an audiologist. It's the best of the lot, but pricey.


    My hearing is really awful, so the hearing devices enable me to live a fairly normal life -- so, there is no question they are worth it.

    I have a low opinion of the devices offered on TV -- but they are probably a lot better than nothing.
    Sage Grouse

    ---------------------------------------
    'When I got on the bus for my first road game at Duke, I saw that every player was carrying textbooks or laptops. I coached in the SEC for 25 years, and I had never seen that before, not even once.' - David Cutcliffe to Duke alumni in Washington, DC, June 2013

  16. #16
    Quote Originally Posted by sagegrouse View Post
    I have had three over more than a dozen years:

    • Phonak (Swiss) bought from an audiologist, which was excellent and not cheap.
    • Phonak bought from Costco, which was one-half the price, but -- as I later learned -- was dumbed down to enable Costco to offer at a lower price. It was helpful, but not ideal.
    • Oticon (Danish) which I bought about a year ago from an audiologist. It's the best of the lot, but pricey.


    My hearing is really awful, so the hearing devices enable me to live a fairly normal life -- so, there is no question they are worth it.

    I have a low opinion of the devices offered on TV -- but they are probably a lot better than nothing.
    Thank you for the recs! When you say the Olicon was pricey what ballpark are we talking?

    A couple years ago I was in line at a Walgreens pharmacy and the guy next to me had a sharp looking hearing aid. Since Iíve never thought that about a hearing aid in my life I struck up a conversation with him about it - he raved about it and told me the brand. Unfortunately I didnít write it down and couldnít remember it the next day.

  17. #17
    Join Date
    Feb 2007
    Location
    Steamboat Springs, CO
    Quote Originally Posted by Skydog View Post
    Thank you for the recs! When you say the Olicon was pricey what ballpark are we talking?

    A couple years ago I was in line at a Walgreens pharmacy and the guy next to me had a sharp looking hearing aid. Since Iíve never thought that about a hearing aid in my life I struck up a conversation with him about it - he raved about it and told me the brand. Unfortunately I didnít write it down and couldnít remember it the next day.
    I'll PM you and anyone else that wants specifics.
    Sage Grouse

    ---------------------------------------
    'When I got on the bus for my first road game at Duke, I saw that every player was carrying textbooks or laptops. I coached in the SEC for 25 years, and I had never seen that before, not even once.' - David Cutcliffe to Duke alumni in Washington, DC, June 2013

  18. #18
    Join Date
    Sep 2009
    Location
    boston, ma
    Quote Originally Posted by Mtn.Devil.91.92.01.10.15 View Post
    Does anyone have information on how to best combat peripheral neuropathy? My wife has been combating it for about six year post neck surgery and it has come back with a vengeance in her left arm and she's literally at her wits end.

    This board has some smart folks, and I would welcome any conceivable solutions to help fight her abject misery.

    Thanks.
    Post-op neuropathy can often be caused by a neuroma if a peripheral nerve is injured or damaged during surgery (very easy to occur). Gabapentin or pregabalin are good starts. If she's having only pain and maybe sensory symptoms (numbness/tingling), it could be a simple fix with peripheral nerve surgery. Motor symptoms like weakness could be more involved.
    Duke 5 - UNC 4*

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •