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Author Topic: Advice on managing neuropathy?  (Read 1338 times)

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Offline MalumEnSe

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Advice on managing neuropathy?
« on: August 28, 2014, 09:40:06 AM »
Hello, all! The BF is finally out of the hospital and seems to be doing pretty damned good, all things considered! The one thing that seems to be giving him trouble is neuropathy in his feet. He's currently on 400mg of Neurontin (gabapentin) that he takes at night, but it doesn't seem to be doing the job, especially during the day. He also has a scrip for hydrocodon as needed but he doesn't like taking it cause it makes him super drowsy.

Do you guys have any remedies or tips or tricks to help out with neuropathy pain? I've heard mention of complex B vitamins helping a bit, any other thoughts? Special shoes/sole inserts, things like that?

Offline Almost2late

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Re: Advice on managing neuropathy?
« Reply #1 on: September 01, 2014, 07:24:15 PM »
Hi, glad to hear your BF is outta the hospital.. wish I could offer help on neuropathy but I honestly don't really know what that is  :-[.

Wish you and the BF the best of luck  :)
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Offline Miss Philicia

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Re: Advice on managing neuropathy?
« Reply #2 on: September 01, 2014, 08:17:46 PM »
400mg of gabapentin isn't a very large dose -- nor is taking it all at once what is typically done because it clears the body in ~6 hours. Normally a doctor would start a patient at 100mg three times a day and then gradually (3-7 days) increase the dosage until the patient sees some relief. The usual effective dose is 1800 mg to 3600 mg per day, which may take several weeks to achieve.

Otherwise with neuropathy the best you can expect is to dull the pain, not completely eliminate it. There aren't any "tricks" with this -- every person reacts differently, and gabapentin isn't the only thing that doctors use, though it's generally the first one they try. Your boyfriend needs to be communicating clearly with his doctor what his pain level is on 400mg taken all at once. Doctors are not mind readers.
"Iíve slept with enough men to know that Iím not gay"

Online zach

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Re: Advice on managing neuropathy?
« Reply #3 on: September 01, 2014, 09:50:33 PM »
not for nothing ms p, my dr doesn't need to be a mind reader. i've asked for better meds. he's basically given me a free pass with gabapentin but shrugs his shoulders for anything else. you may have great docs that hook you up with klonies and cream, not most of us

Offline Miss Philicia

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Re: Advice on managing neuropathy?
« Reply #4 on: September 01, 2014, 10:44:12 PM »
not for nothing ms p, my dr doesn't need to be a mind reader. i've asked for better meds. he's basically given me a free pass with gabapentin but shrugs his shoulders for anything else. you may have great docs that hook you up with klonies and cream, not most of us

1) klonopin has nothing to do with neuropathy, it's a medication for anxiety

2) that cream my neurologist prescribed was not approved by my insurer

3) I am still on gabapentin -- but I've also tried lyrica and nortriptyline; and if my newly increased dose of gabapentin (just took it up to 450mg 3 times a day; or 1350mg daily) then I am trying trileptal. None of these are "exotic" medications -- most are several decades old.

4) I have been dealing with this issue for years now and don't find your condescending post at all useful. What are all the different dosages you've tried on gabapentin? If you mean your doctor isn't offering you narcotics then just say so, but none of the ones I listed above are narcotics. Why don't you try asking him to increase your dose of gabapentin, slowly over several months? Or request one of the other drugs I listed. Or request a referral to a neurologist? Or request a referral to pain management? Personally I had to reach a point where I metaphorically pounded the table with my HIV doctor about the issue, and ore than once. And guess what -- I'm still not at a point where I am satisfied with the results.
"Iíve slept with enough men to know that Iím not gay"

Offline MalumEnSe

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Re: Advice on managing neuropathy?
« Reply #5 on: September 02, 2014, 03:00:09 AM »
400mg of gabapentin isn't a very large dose -- nor is taking it all at once what is typically done because it clears the body in ~6 hours. Normally a doctor would start a patient at 100mg three times a day and then gradually (3-7 days) increase the dosage until the patient sees some relief. The usual effective dose is 1800 mg to 3600 mg per day, which may take several weeks to achieve.

Thanks for all the insight, Miss. P! I think the original reasoning behind doing the entire dose at once in the evening was because of the drowsiness effects. Tomorrow we're gonna split the 200mg up morning/night and see how well that goes. He has lortabs to take as needed, but ends up needing them twice a day during waking hours just to get through. But he really doesn't like lortab, the itching, etc. He really misses the morphine from when he was in the hospital to help! Lol!)

We had no idea the usual dosage to deal with neuropathy was that high under these circumstances, so we'll keep talking to his specialists to get to a decent dosage that is a bit more spread out during the day. Lord knows we have a GP, nephrologist, and 2 ID appointments in the next week and a half! ;)

Quote
Your boyfriend needs to be communicating clearly with his doctor what his pain level is on 400mg taken all at once. Doctors are not mind readers.

This has never been his strong suit, which I why I like to be present during important doctor meetings, just to make sure I get to hear what they're saying, and he doesn't forget any important questions/info. We have an ongoing joke that when he gets asked what his pain level is he usually says a "7-8"... but I'm not sure he realizes exactly what an 8 is since he isn't grimacing and hollering out in pain ever. Lol!
« Last Edit: September 02, 2014, 03:04:14 AM by MalumEnSe »

Offline Miss Philicia

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Re: Advice on managing neuropathy?
« Reply #6 on: September 02, 2014, 09:43:39 AM »

We had no idea the usual dosage to deal with neuropathy was that high under these circumstances

It's just with gabapentin that it is like that -- if your partner was on Lyrica the highest dose would be 300-450mg. I found the longer I was on gabapentin the less sedating it seemed, nor have I found it more sedating as I've increased the dosing, but everyone reacts differently. But the sedation side effect is one reason many doctors prescribe Lyrica instead. All of these medications have pluses and minuses in terms of side effects -- some people get them others do not -- so it can take a while to find the right medication for any one patient. It's a bit like settling on the appropriate anti-depressant.
"Iíve slept with enough men to know that Iím not gay"

Offline Miss Philicia

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Re: Advice on managing neuropathy?
« Reply #7 on: September 02, 2014, 03:32:04 PM »

3) I am still on gabapentin -- but I've also tried lyrica and nortriptyline; and if my newly increased dose of gabapentin (just took it up to 450mg 3 times a day; or 1350mg daily) then I am trying trileptal.

Correction, after closer inspection I'm currently (as of last week) on gabapentin 900mg 3 times a day; or 2700mg daily.
"Iíve slept with enough men to know that Iím not gay"

Online zach

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Re: Advice on managing neuropathy?
« Reply #8 on: September 03, 2014, 08:19:19 AM »


4) I have been dealing with this issue for years now and don't find your condescending post at all useful.

i apologize

Offline Miss Philicia

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Re: Advice on managing neuropathy?
« Reply #9 on: September 03, 2014, 08:50:25 AM »
i apologize

Apology accepted (I know that neuropathy can cause us to be short tempered.) Trust that I empathize with anyone experiencing this issue.
"Iíve slept with enough men to know that Iím not gay"

 


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