Who knows pain meds?
 

Initially I was on neurontin but that did not work for me at all. I then was put on the tryciclic but had to stop it because of extrapyrimidal symptoms I was having such as uncontrollabe jaw contractions, and dytonia in my foot. Scared to death I weaned myself off of it.

For a long time now I have thought I have been being strong because I don't take regular pain meds. But all I have managed to do is cause myself to be in pain all the time now. I think this and the lack of sleep caused my fibro. I don't want to be in pain anymore.:(

My problem is because of a really bad back, I can't take something that will make me gain weight, as I have fought tooth and nail to take the kilos off.

Now I know there are meds that people take on occasion,and then meds that need to build up in your blood. Can anyone advise me of a pain med that helps neuropathic pain that doesn't cause weight gain or lethargy?

I would greatly appreciate this as I see my neuro very soon.

Thank you

Here's a list out of the stickies and I know there is another one
 

http://neurotalk.psychcentral.com/sh...7&postcount=13

Billye

Thank you Billye for posting that
 

I am actually hoping that someone who has tried one of the meds and has had success,or maybe someone knows which ones don't have the side-effect of lethargy and weight gain? Maybe from personal experience?

What has worked... what to stay away from?

Thank you

Hi Aussie, i found the best one for me were Tramadol Slow Release, initialy my doc had me on 1 x 200 mg + 1 x 100 mg taken twice a day [600 mg] as they last for 12hours, apparently here and the US the normal limit is only 200 mg x 2 a day [400 mg] but i guess i was lucky with my doc.

http://www.nlm.nih.gov/medlineplus/d...r/a695011.html

Like all drugs there is possible side affects, depends on the individual but I had none of the side affects mentioned above though from Tramadol SR , no brain fog, i was able to still loose weight on them, nothing at all noticeable to me.
I think you can also get them in 50 mg tabs but they only last i think for about 4 hours, if your interested your doc may have some sample packs to try before you buy.
My local doc was getting " government authority " to write out scripts for " 3 packs " for the price of one.
Brian :)

I have been on neurontin,lyrica,elavil,cymbalta which is current,tramadol not slow release,lidocaine patch,and vicadin but not for months. I have a hard time with meds doing what there suppose to. In the past I have been on many meds for depression,anxiety,and sleep but they never do what intended but give me side effects so I don't know if I am a good example. For me maybe cause I was not on them for extended period I didn't notice weight gain. I know the neurontin and lyrica are known for that. I think Cymbalta is not known for weight gain. When I first started it I was extremly nauses but didn't throw up but some people I have heard do. The elavil I was on for awhile but didn't see very much relief and did not help with sleep. I am still in a lot of pain but am not sure if the progress I have made is from the help of Cymbalta. I'm now up to 20 minute walks and out of bed doing daily activities where as months ago I was in bed for almost all day and crying through vicadin in pain barely able to walk to the bathroom. I know a girl at the clinic I was at was having a hard time with meds and weight gain. They also were going to try her on oh I forgot the name its more for migranes though so don't know if it would help for back. I'm sorry I can't remember someone else may know though. Hang in there.

pain patch
 

I don't know exactly where your pain is coming from would give me a better idea of what kind of med. you need. good luck and i will try and look you up again to see if you told us exactly where the pain is origanating.:D

I have been on neurontin and now on lyrica and haven't put on weight. I wouldn't know if it is due to the product itself or predisposition to weight gain when it comes to medication.

I agree with dagm131, what is-are the cause of your pain would help in giving or sharing our own experience and telling you what has helped us.

Will look back on your post again when you will have given us more details.
Till then, wishing you a good night sleep.

Thank you for the replies
 

If I were to where a patch I would need one that was at least 167cm tall, as I have pain all over body (except hair).

I will try to look up some of the meds mentioned on the Rx.

Hi Dan:

You sound exactly like my husband (6 years ago). He went up 125 of the patch (in lower dosages it was every two days), but at 125 it was every 3 days. He took vicodin for breakthrough. He told me recently, "Melody if it werent for that patch, I was considering suicide". I felt so bad. He was on the patch for almost 2 and one half years.

But thankfully, because he saw the chiropractor/neurologist, it is now 6 or so years later and he is on no pain meds whatsoever. He does the IVIG thing monthly. He considers himself lucky in this respect. So do I.

Take care,
Melody

Thanks for the information
 

Boy do I feel a bit silly. I thought the patch was localised and essentially numbed the skin underneath of it. I will ask my neuro about all these pain relief options.

Dan it seems that you are very lucky to have something that has been so effective for so many years. Usually things stop working for me after a while.

Thank you for replies

you know,
 

If you really have Fibromyalgia, narcotics are not currently indicated for this condition.

I went to a pain seminar this spring that explained that. Fibro is basically a central error in pain sensory interpretation. The Fibro patients studied had very high levels of endorphins already sitting on pain receptors.

Tramadol is the drug most recommended for Fibro patients. I have a thread here that has more details:
http://neurotalk.psychcentral.com/sh...ad.php?t=20030

Thank you
 

I will be seeing neuro very soon,and will discuss all of these things with him, if I can keep his attention for this long.

Mrs. D. I am going to PM you about something regarding medd if that is ok,after I return from swimming.

Thank you:)

Hey there
 

I'm sorry your having this problem with pain and meds. I am on morphine
sr,neurontin,and just started 25 mcg/h fentanyl Transdermal,I feel warm on this,i read on list of warnings you can get a fever from them,but will take temp. amd try them. I have been on a lot of meds. and have had alleregy
problems. So you must write everything your feeling,what is a miracle for
one can be a very bad think. But Mel's Alan is right,and i am so glad Dan has
something to help him,sometimes i think we don't give some meds a long
enough,time to work,i was that way with neruromtin. But that's just me i truly think it works for me. Sue

The only thing I take for the PN pain now is a generic form of Ultracet. That is Tramdol with Tylenol. It works wonderfully well for me. I only have to take it at night and can even skip nights when I feel I don't really need it. The only side I've have from it is that it wires me. Makes me feel wide awake if I take it too close to bedtime. So I take it a few hours before bed and that seems to help. I currently take 37.5 mg of Tramdol and I can't remember how many mgs of Tylenol that includes. That dose lasts for about 8 hours for me. Some days I have to take two tablets but those days are few and far between.

I can't remember any other listed sides for this drug so you may want to google it and see what comes up. And talk to your doc about it. This drug has truly been a miracle for my pain. I can say I've not had any problem with weight on this drug and in fact I continue to lose weight since I stopped taking the Effexor. Obviously no lethargy either. :D

For the record, I couldn't take Neurontin either. It made me suicidal as well as making my pain worse.

Aussie,

You are not crazy, as some patches DO have to be worn over your painful areas. Lidocaine and Capsaisan patches are worn wear it hurts.

Fentanyl, which is a major league pain killer is worn on a muscled area, such as arm or leg, and is not to be heated up such as with a heating pad. Fentanyl is aborbed by your skin and works systemically. Kids and pets can be poisoned by chewing the patches! Like any pill, they must be kept away from kids and pets. I have been on fentanyl. I am not anymore. My choice.

I pm'd you. Autonomic neuropathy makes things more complex.

meds--

Aussie---I'm up here with insomnia, so I'm writing in a somewhat less than optimal state of mind. So here, goes, but if it's scattered or unhelpful, excuse me because I'm both revved and exhausted.

I don't know what meds you are on, but I know you have a lot of pain, both from neuropathy, fibro, and pn, right?

So, it's important that medications be mixed when we have lots of pain, because different medicines act on different channels.

The antidepressants are all helpful. Lots of people are finding Cymbalta good for pain and depression, and it seems to be replacing Effexor as the most popular antidepressant for depression with pain, or pain with depression. They can both be energizing, and so best in morning. The SSRIs (Prozac, Zoloft, Lexapro) also help, but are losing popularity to Cymbalta. The very oldfashioned antidepressants, tricyclic antidepressants, have a really big advantage for you, I think, because they deepen sleep. I take Amitriptiline, Elavil, at night, and it helps me get through the night. However, I ran out today and didni't realize it. So, here I am, 3 am. I think you said you had a dystonia from an antidepressant; if not you, someone else I read tongiht. That doesn't happen, and I suspect whoever it was was takign soemthing else that did it. The antidepressants are especially good for fibromyalgia pain, and there are reports that Cymbalta is doing great for this. I just read a post of somebody with a near miraculous response to it for fibro, on another board.

Neurontin is a stapl of pain medication, but Lyrica seems to be replacing it. I think people find Lyrica less sedating during the day. I'm not sure, but people here take both. I was started on Lyrica two weeks ago, and I'm still on a low dose. It doesn't seem to be helping me fall asleep, but then again, I'm not yawning during the day.

The combination of antidepressant AND neurontin or Lyrica could be considered a staple in treatment of chronic pain, and the opiates could be considered something layred on top.

They all act on different parts of the pain pathway.

Opiates come in different forms, and it seems that most people on this site like Tramodol the best. We haven't done any pollls, but it's my general sense. It works and it doesn't knock people out too much, and is good to take as needed. It also comes in a longer acting version.

But for more severe pain, the opiate people use and like, my sense, is Duragesic( fentanyl) patches. This is a patch you put on and it releases the opiate slowly and steadily throughout the day.

If you are taking lyrica/neurontin plus an antidepressant, it lessens the amount of opiate needed.

Now these are just generationalizations, and there are lots of other medications out there, all listed by Mrs D in a sticky. But it's rational to combine them, and while people may be scared of taking a lot of pills, it's a way to limit the side effects.

I think it's surprising to many how well Cymbalta works, and I just read on another site a woman with pn who had total relief with the starting dose within days.

Lidocaine patches: I kinow you have pain all over, but maybe somedays one place is worse than others. I have come to really like my lidocaine patches. I use them on the top of my feet, and spots that act up. Sometimes there's a painful patch on a leg, or ankle, or the side of a finger; sometimes, actually frequently, the top of my left foot vibrates and buzzess and itches all together. The lidocaine is fabulous for these little trouble spots.

When I was recovering acutely from the back surgery, there was a time between narcotics and nothing when lidocaine patches on my back helped.

Again, combinations seem a good idea.

A drug that's not generally on the list of pain meds for pn, but which my neuro gives me and I like a LOT, is Klonopin. I find I get too sleepy with Neurontin, and I've not been on lyrica until about a week or so, and Klonopin is a godsend to me. It does just what I need at night. At night my nerves get activated, and that's when they buzz and vibrate. Kklonopin calms them and helps me get comfortable enough for sleep. I know all this sounds ridiculsou, with me writing at 3 am, but it's usually a bigger help than tonight. Tongiht's problem is missing my Elavil because I screwed up getting a renewal mailorder. My neuro is happiest prescribing Klonopin of all the meds also. I don't know why, but he looks pleased when I say it helps, and happy to give it to me. I like my neuro a lot, and have a real sense that he is looking out for me, so these little messages he transmits to me with his enthusiasm or reluctance mean a lot. He's kind of paternalistic, but not condescending, and I find him reassuring. He's prone to saying strange things like: I know you're worried about your _____, but I'd like to see you just get good night's sleep and some relief; so you concentrate on getting sleep and eating wel, and I'll worry about what this means for you.A sort of division of labor. It doesn't necessarily make sense, but I find it assuring.

Jeeze, I AM rambling. I hope I can take this down if it proves incohrent tomrorow. He's the kind of doctor who has lots of experience, and gets on teh phone and asks other doctors questions whil you're in the room, and says things like, well, we'll want to have a look- see at that, your neck, soon. It's probably causing your arm pain, but there's not way I'm letting anybody operate on you just now, and you're in shap for an injection, so we'll just put that on the back burner fo ra while...I never thought I'd appreciate such a "daddy-ish" oldfashioned guy, but I do.

Oy, I am totally off topic of your drug med questions now and rambling, soa few more words and then I'll sign off:

Lastly, about side effects. Provigil is a wakefulness medication, and if the meds make you sleepy, it's a fabulous medication for staying awake. I know the only way I'll make it through a workday tomorrow is by taking a provigil in the morning. I'm going to be tired and hung over and that will help me through the day. If I wasn't prescribed it to use "as needed", I'd be calling in sick tomorrow. But knowing I have it makes a night like this tolerable. Usually, the worst thing about a bad night is the anxiety about the next day and how I'll get through it. Knowing I can rely on Provigil relieves that anxiety. Provigil and the opiates are constipating, and it's important to sto this before it takes over. I think people like fiber and miralax. I like a magnesium supplmenet I get from health food stores, and whenever I take one of these constipating drugs, as I've done tonight, I make it a cocktail with my herbal laxative.

Compared to others on the board, I think my pain is pretty light. It's mostly an "activating" sort of pain, so rather than just dull pain, I get vibrations, little shocks that might itch and surprise, and vibration. The vibration is usually in the feet, except in the morning, when it feels like my whole solar plexus is vibrating. There were times I could have sworn that if I were a Californian I'd be evacuating my house thinking there;s an impending earthquake. But in NY, it's more lik feeling the subway has taken a new detour under my bedroom. It generally goes away when I get out of bed.It's part of the thing that most of my pain feels like nerve fibers are firing irritably, rather than dulled down. Again, Klonopin helps that, and maybe the Lyrica will too.

But I'm not in enough pain to want things on a daily basis, just as needd. Like tonght, when they wre needed, and I'm not hurting at all, but just, well, as I said, "activated".


I don't think you need to delay any of these medications before surgery. Your doctor will tell you what to stop the day of surgery, or the week of surgery. Probably, you'll be told to stop anything that increases bleeding, for instance.

Aussie---please let me know tomorrow if I should rmove this. I can't judge tonight it's coherence and don't want to lead you oranyone else astray.

Pleasant dreams to all you folk out there, quietly in bed, curled under your covers, and fast asleep. I am so bleeping jealous of you !

And, final ramble. I logged on becauseI hd an email telling me someone on another site I read was asking about pain mds for neuropathy. I came to neurotalk to find the sticky to send her, and read your post. I've not even looked for th sticky to send her. Isn't this ridiculous!!

Aussie
 

I've tried tegretol, neurontin, ultracet, and vicodin none of which gave me much relief from my pain. One neuro put me on Lyrica which helped with the shooting and stabbing pains which were like pin pricks up and down my toes, feet, and legs, and sometimes into the back, chest, and head. She also gave me Ultracet but for me though nothing I've ever taken gives me any kind of relief from the constant cold in my feet and now my hands too. In addition, I gained some weight on the Lyrica.

After a 2nd opinion from a new neuro he weaned me off of Lyrica, I lost ~8-10 lbs and he replaced it with nortriptyline and substituted the Ultracet with Ultram - he didn't see a need to take acetaminophen together with tramadol (ultram) chronically if I didn't need to do so. I've read that for some people the Ultracet combo works better than Ultram itself - there can be a synergy between Tylenol and Ultram. In any case the combo of nortriptyline and ultram seems to help me with the shooting and stabbing pains but this neuro and a couple of other I've spoken with told me that the cold pain is very difficult to address - sometimes high doses of mexilitine, an antiarrythrmic can help but I've not followed up on this.

I've got an appointment at Johns Hopkins in ~3 weeks so perhaps they can offer me a cause or some relief.


I hope you find some real relief soon with as few SE's as possible but it's a real "crap shoot" at times to find a good drug or combo - doesn't help that neuropathic pain is about the most difficult to treat.

Alkymst

To: Cyclelops:

You said: "Fentanyl, which is a major league pain killer is worn on a muscled area, such as arm or leg,"


Now I have a question about this. 6 years ago, when Alan (because he was about to commit suicide, his pain from PN was sooooo bad), he went to the pain management department of Coney Island Hospital in Brooklyn. The pain management doctor there explained about Fentanyl, and where you put these patches. He said "clip the little hairs in the area, and peel and press and it will stay for 3 days". Knowing me and I like to make sure of things I distinctly remember saying "Doctor, where exactly should Alan put these patches, is there a specific place that is better than anyplace else on the body".

Here are his exact words. "Well, my patients usually put it on their upper chest, near their shoulder. That's easier to reach for them" And then he continued "But it really doesn't make one bit of difference where you place this patch, because it's absorbed in the body (then he went on to explain half lifes, etc.). Then, he called in an assistant and he was talking about the fentanyl patch with the assistant (another doctor who was there to learn all about pain management). Alan's doctor explained "she just asked me if there's one place better to put this patch on, than any other place on the body, and I was just explaining to her that he could even put it on his ankle, it would make no difference".

I will never forget that conversation (I'm extremely good at remembering dialogue once I've heard any conversation, I have no idea why, I can just close my eyes and I can play the whole stuff in my head).

So Alan signed the contract with the pain management guy, got his prescription and for almost 3 years, with various degree of upping the dosage and sometimes making it every two days (forget about what the pharmacist did when he read THAT prescription). But Alan got whatever the doctor wrote.

He put the patch, always, on different parts of his chest. Switching from left to right. No problems.

So now I read your post about how you put it on a muscled area, like leg or arm. Have they changed the way they explain this patch to people?. It's been 6 years for us.

Thanks much.

Hope you are good.
Melody

I found your post very helpful and enlightening. There's *much* good info here. I especially like the way your doctor handles things. Anxiety can add to the problems and he wants to relieve whatever your causes of anxiety might be.

I found your reference to Provigil interesting. Is this the one (newest one?) they use for narcolepsy and such? I have nights where I'm up with the PN or because I may have forgotten to take my Ultracet early enough in the evening when I need it. I'm getting real good at knowing when I'm going to need my Ultracet and taking it early on so that I have no sleep issues. But there are nights.... And the next day is agony.

Lyrica I've wondered about but there are some sides that worry me and weight gain is one of them. Good to hear it's having some good results though. And along with what you said about the Cymbalta. It's nice to know I have some alternatives to look at if I need them.

Neurontin is a big no-no for me. The B-12 issues and mostly that it made me suicidal.

And yes, Tramadol seems to be a popular choice. I found out about it by accident. I was given Tramadol after my Carpal Tunnel surgery a year ago. I didn't use it then cause it didn't seem to do anything for the post-surgical pain. However, after reading about using Tramadol on this forum I gave it a try. I was stunned!! It worked like nothing else had. Even the Neurontin. For me anyway.

Glad it helped, Jarrett, though on reading it today, I'm struck by the amazing number of grammatical errors, misspellings, typos, etc. Well, it was 3 am or 4 am, so it's excusable, but I'd like to correct it sometime.

Yes, Provigil is the drug marketed first for narcolepsy. But it's used for a lot of other things now---and exhaustion from chronic illness, or drug side effects.

Ahh meds! Mail order vs nearby chain?
 

The mail order guys are absolute beauraucrats about 'scriptions. Miss calling or mailing in the refill by one day and you are out of luck. It's times like this that I'm glad I'm on the IVIG...Each year, by mid-Feb. I've met my catastrophic and there are no more med-co-pays in my plan. Tho it can take another 6 weeks for all paperwork and computer systems to get 'caught up', the only satisfaction is not having to pay any more. It's a small comfort, but a warm one at the same time - I think you all know what I mean. The subsequent refund checks are nice too?

Aussie, there is a lot that goes into finding YOUR right mix of meds. I hope you find the medical marvel who can create what works for you.
Aussie, and all of you - hoping for one or more pain free moments each day from now own. Even if it's an act of forgetting it all. :hug:'s - j

Hi
 

Thank you guys for yor replies.I have had a med switch since the appointment and yesterday I could only describe myself as roadkill. On Tuesday night I had to take my child to emergency,and I was there for 3 1/2 hours.I finally got home at 9:30 pm. I was exhausted. I had to wake at at 5:30 the next morning to travel for a conference.knowing my nightly routine was disrupted I took 2 12.5 milligrams of Silnox CR.but I never went to sleep.I was up all night,but when I got up at 5:30 in the morning, I was roadkill.All day yesterday I was on the brink of lord knows what. The fatigue was crippling.I could barely lift my arms,and had to sit through a conference. I did not have the enrgy to reply back to the posts. Sorry-

I am better this morning, and would like to thank everyone. I know understand that pain is complex.

LJ, your post was funny!:D You siad the "opiate people". I understand what you mean but it was like saying "the aliens"!

I am surprised yo managed to even be able to muster all those thoughts at 3 am. Insomnia is a dreadful thing! I understood the post, thank you for describing the meds.

Thank you-

Be advised...
 

Not all insurance plans pay for Provigil. It is very expensive without.

You may need prior authorization to get coverage.
Here is more on that:
http://www.provigilweb.org/off-label.htm