Treatment of neuropathic pain

[pnowsitall]

"I've tried Neurontin, Cymbalta, Lamictal, Nortriptyline and Lidocaine"

Sorry, but don't you think this is too much medicine to be taking? I am so thankful I can rely on one thing to treat all of those symptoms.

It improves the quality of life.

[shellos8]

"I've tried Neurontin, Cymbalta, Lamictal, Nortriptyline and Lidocaine"

Sorry, but don't you think this is too much medicine to be taking? I am so thankful I can rely on one thing to treat all of those symptoms.

It improves the quality of life.

It would be if I took them all at once. They were tried one at a time over a period of 18 months. I do still take the Cymbalta for depression and Lamictal for jerking/twitching limbs. This is all at the recommendation of an MS Specialist.

[Strhuntrss]

Neurological pain

Fairpace ... i can so understand. i have nerve pain in my legs that keep me from sleeping. im having a bad night tonight. i take neurontin 300mg 4 x a day. i too started out low and slow. I take ultram also, 50mg 2 every 6 hours.

Im finding that i need something else or he needs to up my dosage. My father in law swears by orudis. I did take some and it does work but my neuro said the ultram would be best forme.

I have been dx for 6 months now. i think i want to try the dmd's. Im thinking of copaxone. Any input on this drug would be of great help to me.

[SmartyPants196]

Pain meds

MEDICAL TREATMENT OF NEUROPATHIC PAIN

General tenants:

I. Don't be in a hurry to get out of pain! (YEAH RIGHT!)

The medications that most successfully reduce neuropathic pain in terms of reducing pain severity, the quality of pain relief and durability of relief ALL take time to work. An expectation that they will work like commonly used pain relievers (opioid medications: such as vicodin, codeine, etc) will result in PROFOUND DISAPPOINTMENT and more importantly may cause you to prematurely put aside one of the few medications that can produce long-term profound pain relief.

In other words an expectation that they will work like other common pain relieving meds will "burn" (cause you to reject) a drug that might--if used differently with different expectations—have been very successful. This is for several reasons:

1) Unlike the opioid medications where you take a little and they help a little; take more and they help more, many of these "anti-neuropathic" (anti-epileptic) medications appear to exhibit a threshold effect in any given individual. In other words a patient might feel no relief at 25 mg, or 50 mg, and then at 75 mg suddenly start to feel relief and then at 150mg feel profound relief.

So your initial experience of the drug may not reflect your subsequent experience. You might then ask why not just start the higher dose?

2. When started at "effective" doses these drugs usually create side effects that can be largely avoided by slowly titrating up from a much lower dose and allowing your body to accommodate to the effects of the medication. In other words drug X may make you very nauseated if started at 60 mg a day, but if started at 20 mg a day, and then each week increasing the dose by 20mg until you get to 60 mg then nausea is very rare.

So it is better to start at a low dose and work your way up. It is generally very difficult to talk someone into re-trying a drug they are convinced makes them puke (or be dopey etc.) because of their experience from previously taking it at too high an initial dose.

3. There is some evidence that even though these drugs may exert some effect immediately at any given dose, the degree of pain relief may really build substantially over the first few weeks of treatment. No-one has a real good explanation for this, but we wave our hands and talk about things like "central sensitization".

4. Unlike penicillin where you can just pick the right dose—with all of these anti-neuropathic medications doses have to be significantly tailored to the individual. I don't know what dose may be too much for one person and not enough for another.

Essentially you have to test a given dose in a given person and then slowly change the dose to see at any given dose the degree of side effects and the degree of pain relief.



So the mantra is START LOW and GO SLOW!!!

START LOW (start at a dose that you are really confident won't create side effects—usually a dose too low to be effective)

GO SLOW! ( increase the dose by small increments every few days or each week so that you plan to reach your target dose in a month to two months)

But GO! ( when you start one of these medications don't just pick a low dose and leave it there or decide that it doesn't work just because it isn't having an effect at that low dose) these medications should generally be slowly titrated up until either:

a) You are getting significant pain relief or you are reaching a dose defined by the medical literature to include some risk of sudden significant hazard (e.g. an arrhythmia that might occur without you feeling this adverse effect coming on slowly)

or

b) You start reaching dose-limiting side effects (e.g. the medication is making you feel too sleepy or too nauseated).


II. Only Change One Thing at a Time.

People in pain want to get out of pain right now and for that reason are tempted to try multiple things at the same time.

When you run into side effects you don't know which intervention is causing the side effect, and if it works you don't know what works. Slowly learning what works and what doesn't; and why things don't work (e.g. lack of efficacy versus overwhelming side effects) is important to eventually achieving success.


III. Nothing Ventured, Nothing Gained.

It is okay to not like taking medications, but with chronic pain if you don't change something –a medication or something else—then nothing will change. . And if you are in you have to be committed.

Taking these meds one day and skipping them the next because of frustration etc. will generally make you feel really bad. So decide to give them a real 6 week trial, or decide that you are not ready—but don't do the half-measures thing. They don't work when used this way and you wind up mis-educating yourself that these medications don't work when in reality they are not working because of the way you are using them.

Enjoyed your article, i have severe back pain and at first i was given vicodin and it was not enough to take the edge off in fact my pain dr said i was taking a few more a day than i should, so he put me on timed released morphine (kadian 30 mg timed released. It changed my life, I got off of the bed and back into my life. Vicodin seemed to work on the part of the muscle but it never made it go away. I hear that morphine works on the part of the brain that helps you cope with the pain, the pain is dulled but still there but its like you can cope with it. I have been on that dose for more than 4 yrs and don't seem to need more. My doc does yearly random drug test labs to make sure that a person is taking the pill and not selling them?

One interesting note is that marijuana works in the same area of the brain as morphine does, but if someone tests positive for any other drug including pot, the doctor has to take you off your med and lower you down to the med you came off of that didn't work. Sounds lousy huh, they will give someone more morphine but you can't use pot, which has been proven to help with leg spasms and helps you cope with pain. Even with a pot card (in oregon) the dr has to comply. It doesn't matter. i have heard this shouldn't be but i have know a few people w ms that gave up their pain med so they could smoke. I of course never want my pain pill to be taken away, it works so good. It may be due to a local lab that is OML that has those rules that drs must comply. You would think that a person could use the drug that helps them the most, that with a marijuana card one should legally be able to use it. Go figure .I think the pain organizations should get on this, but why should a lab dictate to the doctors as to what drug their patients choose to use to be out of pain?

[Guzzy]

Hi Shellos08
Did u try amitriptyline at all - I found it the best for neuropathic pain but it was very sedating for me.

[SmartyPants196]

Re nortripylene vs amitriptyline

Hi Shellos08
Did u try amitriptyline at all - I found it the best for neuropathic pain but it was very sedating for me.

I did forget to mention that in addition to me being on Neurotin, tizanidine and baclofen i do take nortripylin which i was on way before getting MS for a sleeping disorder when i had fibromyelga. (sp wrong?)The first night i used it it was like a life changing experience, i actually slept the deepest sleep i had in years.

After years of waking and not being able to fall asleep, i described it like if you were on the inside of a bread box, and the drug made the lid roll back into darkness. It immediately gave me restorative sleep and my shoulder neck pain started to heal. Only when you get into a stage of sleep that is need to heal your muscle will your muscle ache stop. then when i was diagnosed with MS the neurologist said that i would be staying on it as it helped with spasms.

I did try amitripltline first but it made me groggy in the mornings and when i was switched to nortriptlin and i had better results, no groggy feeling. Of course now that i also use ambien, the restorative sleep i get is worth feeling a little groggy in the morning, what's the alternative? not sleeping very well which can turn into chronic fatigue syndrome and no restorative sleep? girlpower

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[MS TOO]

SmartyPants, Glad to hear the morphine is working well for your pain control. I have been on vicodin (now Norco) for three years for nerve pain and do still have pain at night as the Norco wears off. My neuro has asked me a couple times if I wanted to try Methadone but I have had a couple people tell me that the human body REALLY likes methadone and that while it works well and provides even, constant relief, it is extremely difficult to go without the drug even when the pain isn't too bad.

I watched a documentary last night about medical mj and hashish and some studies being done in England. It was very interesting and sure seems like more effort should be made to make this an accepted treatment as there is more and more evidence that the active ingredient, THC, is a very beneficial pain reliever.

One study was of a soldier who took a bullet to the back of his head in combat and he was using hashish to control pain. He was living a fairly normal life which had been nearly impossible for him to do with conventional meds. They even had him take a dosage and then have an MRI and it showed like you said, that it affected the same area of the brain as morphine.

All natural and it works but no profits for pharma companies. I'm afraid there is not much hope for change on this matter anytime soon.

[SmartyPants196]

Pain med wearing off, and methadone

SmartyPants, Glad to hear the morphine is working well for your pain control. I have been on vicodin (now Norco) for three years for nerve pain and do still have pain at night as the Norco wears off. My neuro has asked me a couple times if I wanted to try Methadone but I have had a couple people tell me that the human body REALLY likes methadone and that while it works well and provides even, constant relief, it is extremely difficult to go without the drug even when the pain isn't too bad.

I watched a documentary last night about medical mj and hashish and some studies being done in England. It was very interesting and sure seems like more effort should be made to make this an accepted treatment as there is more and more evidence that the active ingredient, THC, is a very beneficial pain reliever.

One study was of a soldier who took a bullet to the back of his head in combat and he was using hashish to control pain. He was living a fairly normal life which had been nearly impossible for him to do with conventional meds. They even had him take a dosage and then have an MRI and it showed like you said, that it affected the same area of the brain as morphine.

All natural and it works but no profits for pharma companies. I'm afraid there is not much hope for change on this matter anytime soon.

About your pain med wearing off at night, i too tried vicodin and yes between doses you feel the pain, why bother taking something like that, the Kadian (Morphine) timed released 30mg you take once a day and that's it, no more pain at night (well i do still get leg crushing pain in my legs but that is more like muscle spasms and i can take an extra neurotin for that) With morphine one does not get addicted to it, it helps with the coping with the pain, so i can still feel a dull ache but its livable and i can tolerate it. And one would say how do i know i still have the pain if I'm always on morphine, well once i day when the former days pill starts to wear off, boy do i feel it, but then i take the med, and its a hour and its back in my system, that time is when i take my nap.

My neurologist said when i asked him why i seem to feel more pain at night, "During the day you probably have the same amount of pain but you are distracted by life, and yes do keep busy during the day, exercise, keep busy and yes it does fade into the background. Methadone has been suggested as its cheaper than Kadian (with my insurance it cost 40.00 for three months through a mail order Cvs caremark)but methadone you go back to dosing yourself all day long, and you then have three or four times a day to have the drug wear off and the pain bleed through, who wants that. Methadone is way cheaper and some insurances (Oregon health care plan) will not allow certain meds and they make you go on methadone.

Also my dr said it is easy for someone to take the next pill earlier and that Over dosing is a concern, or taking more than you are supposed to (like i did with vicodin as it wasn't working for me) I suggest you go to a "Pain specialist" and boy is that eye opening and they know so much about what you are going through. And don't worry about getting addicted, as the Kadian is a very low dose and you don't "get high" from it. I just got tired of living my life mostly in bed and not going anywhere, i do have a maximum of 3 hours that i can remain upright before i have to lie down. Oh another thing about your statement about the pill wearing off at night, try taking it at a different time so that at night it doesn't wear off or like i said get a sleeper med which makes night so much more pain free and you sleep all night.

If the vicodin isn't working anymore, ask for something else, or the referral to the pain specialist. I was taking the maximum dose and going above that, as it wasn't touching my pain, so my pain dr took away my vicodin and said i wasn't getting it back as i was taking one more pill a day than i should. Don't be in pain, we live in a society where medications are so massive , keep trying until you get the right med. Insist on the pain specialist even if your primary is all"i can prescribe you pain pills" no go to the specialist who understands exactly what you are going through. Then if yu get on Kadian go a few more times to get refills then request that your primary dr manage them for you, (ask her him first) then they do all the every 3 month dr visits to get the handwritten script and mail it in or go to pharmacy.

That is different from the vidodin that you just reorder on phone, because Kadian is a controlled substance you have to go every 3 mo for the reorder, they ask questions about your pain and do random drug tests (to make sure you aren't selling k to other people) why would a person, if you need pain relief, but i guess its a problem. now some say k works and then at a later time you require more. in my case i have been on the same dose for 5 yr. Vicodin sucks compared to k.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[MS TOO]

SmartyPants, thank you for this additional information, I learned a lot from you. I have just recently added trazadone for sleep, baclofin for spasticity and upped the gabapentin nightly dosage. I hope these combined with taking a norco early in the evening and then another right at bedtime will help me sleep better.

It seems to be helping some but I'll know more after I work through the solumedrol and prednisone that I am taking for my latest flair up. I am also still adjusting to the news from my Neuro that I am now officially secondary progressive with some weakness on my left side that will likely never recover. Tomorrow I'm off to see my PCP as I have been having some terrible congestion that I can't seem to shake which I am sure is related to the current state of my immune system.

Oh what fun this can be at times!

[pnowsitall]

Doesn't sound like fun

Wow, jeez, the traza bacla, predinsone, gabapena, all this stupid crab...p, I feel is going to make our bodies a cesspool of toxic, drug infused garbage.

Also, just becoming primary progressive, please try the herb I mentioned. It will help with everything.

[alishape]

I am not even sure if what I have is considered "nerve pain" because it doesn't really hurt. It more like extremely uncomfortable and annoying. I get the zings in my legs and back. They seem to take a lot of energy from me. It reminds me of the spoon theory, because when the leg and back zings are really bad I get really tired and can't walk for very long that day. I run out of spoons pretty quickly. Plus it feels like a small localized hollow zinging area in the back of my neck. That one is the worst because it makes it hard to hold my head up.

Anyways my doctor prescribed Cymbalta 60mgs. He actually prescribed it because I was trying to describe to him the sensory overload I get sometimes, you know, jumping out of my skin for no reason and processing issues when I have a lot of visual or auditory input. Anyways he gave me the Cymbalta and I am not sure it does much for the sensory issues, but it certainly keeps the zings down. I mean so much so that if I miss a day the next day I feel all achy and zing-y all over.

The problem is that I am not depressed. So I am taking an anti depressant which is changing the chemical balance in my brain. I think it sometimes makes the sensory issues worse. Sometimes it makes me all shaky. I am not sure what to do about it, because I can't sacrifice relief from the zings no matter what. I am totally new to taking all this medicine, so I just assumed that if the Cymbalta worked for something I'd just have to deal with the side effects. You all are making me think maybe I should try something else.

[SNOOPY]

please try the herb I mentioned. It will help with everything.

Contrary to your belief, MJ does not help with everything or for everyone. There are those who don't even want to go that route.

I used MJ in my teens...for fun. I tried it again several years ago to try and help with pain. The outcome: MJ increased some of my MS symptoms, did not help my pain but I found the computer screen quite funny

[pnowsitall]

Snoopy

I'm sorry Snoopy that it didn't work out for you so well, but I think for us, it is an all around therapeutic agent.

Take away the smoking aspect, and try to learn about the properties in it. CBD, which the government has a patent on, until recently has been shown to be neuroprotective, anti-inflammatory, and a pain reliever.

I suggest you go on youtube, and search "what is cbd"

A doctor actually describes what it is, and exactly what it can help alleviate.

Snoopy, I know it isn't for everyone, that is why they have so many applications for it. You don't have to smoke. Someone mentioned that it affects the same area of the brain as morphine, so how can it not help with pain?

I think that it could have been exclusive to you, but everyone on this site, please have an open mind. I would say the same about neurontin, or whatever. Wouldn't you want something natural, that the sun grows it?

[KyleW]

"I've tried Neurontin, Cymbalta, Lamictal, Nortriptyline and Lidocaine"

Sorry, but don't you think this is too much medicine to be taking? I am so thankful I can rely on one thing to treat all of those symptoms.

It improves the quality of life.

Who is to say how much is too much, when it comes to neuropathic pain? I'm glad that you have found one thing to suit all your needs. For others, like me, it's not quite that simple.

I had pretty uncomfortable neuropathic foot pain. I followed all of the right steps and found the right combination. I started with 300mg/day of gabapentin. Over the course of several months I worked my way up to 1200mg 3x/day and still got no releif. Next I added 25mg/day of amitriptilyne to the 3600mg/day of gabapentin, still no help. When the amitriptilyne got bumped to 50mg, BINGO! No more foot pain.

So I have found the absolutely correct amount of medicine for me. My feet feel great and my head remains clear

Kyle

[pnowsitall]

I understand the neuropathic pain, and how horribly painful it could be.

Other people certainly have different experiences, but when I read how much medicine you were taking, it just sounded way too much...3600 mg per day!??

Montel Williams also has neuropathic pain in his feet, that he says is unbearable. He found comfort in this medicine though.

Every person has their own vices, whether it be drinking with their pills, or whatever, but you can still have a clear head and get relief from this.