LymeNet Flash: neurotin

This is topic neurotin in forum Medical Questions at LymeNet Flash.

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Posted by GEDEN13 (Member # 4151) on :

i am thinking of going on neurotin.the pain i am going thruogh is unbearable.

right now i am useing the duragesic patch(50) along with percocet5/325.

this combination is really doing a number on me.but it does work.i know i will have to increase the dose,as the pain get's worse.

i need to know from those of you,who have used neurotin.(info) did it do away with all pain? side effect's? addiction ? anything else i should know?

i don't want to read about it.i would like first hand experience from those of you who have used it.

i am fighting two battle's.trying to get on abx.and trying to avoid doing to much damage to myself with the percocet and duragesic patch..

thank's up front , gary

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Posted by Amareo (Member # 1454) on :

hey there....I'm currently taking topamax (same type of drug as neurontin) and percocet for pain....but Ive cut WAY down on the percocet to give my body a break.

I tried neurontin once....if I remember right its non-narcotic so you shouldnt have to worry about addiction.

I had a bad reaction to it immediately but if you've been taking it you shouldn't need to worry about that. (I had really disturbing visions/imaginings and I'm NOT a violent person ...I don't like horror TV shows or gory things). Anyways, so... good luck I hope its helping! The topamax seems to relax my muscles a lot which is nice...other than that it doesn't really seem to do much for the pain itself, but....relaxing me when Im in pain so that I don't tense up is actually very relieving.

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Lishka

Posted by Areneli (Member # 6740) on :

I don't know too many people who were helped by this medication... and I know many who tried.

Posted by lymesux (Member # 6248) on :

Here are a couple posts that 'might' help.
http://flash.lymenet.org/ubb/Forum1/HTML/029059.html http://flash.lymenet.org/ubb/Forum1/HTML/027830.html

Posted by GEDEN13 (Member # 4151) on :

i asked for first hand experience,r nelly..not gossip.

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thank's c.d

[This message has been edited by GEDEN13 (edited 18 February 2005).]

Posted by 3greatkids (Member # 3838) on :

Hey there

When I was first diagnosed with Lyme,my Dr. put me on this med.

It was great for me, in that, it did help me to rest at night and that in itself was a life saver.It gave me the rest I so needed to help with the healing.I took it at bedtime.During this entire process I have always had unusual dreams,so I cannot say if the Nuerontin was to blame.

I quess I used it for the first most intense part of my treatment,along with the IV and the bad herxing.

I am still in treatment but do not herx like the beginning days and my pain level is alot better.

I would say yes it did help me in getting started and to ease the intensity from all of it.

For me it was very helpful and I was able to sleep,the restless leg stuff was ended,so that was part of the battle.Being fatigued and wanting to rest was so unbearable,this ended when I started Nuerontin.

Good luck with your treatment.I know the pain of it all is just so horrible.I wish the medical community would take it a little bit more seriously.Pain is so destructive,for the soul and spirit.

Hope you feel better.

Posted by Amareo (Member # 1454) on :

oops. I thought you had just started taking neurontin. sorry if my post didn't make much sense, thats why.

neurontin is used for nerve pain the same as topamax and Im having good results with topamax, but like I said, I had a bad reaction to the neurontin. People vary however, so it could really help you. I would suggest trying it if your doctor thinks its okay, and if won't interact with your other medications, because if it does help you that would be great for you. If your interested in trying the medicines for nerve pain, you could also talk to your doctor about topamax while your considering neurontin and see what he/she says. I think the side effects and everything are about the same between the two drugs because they are very similar drugs, but I could be wrong.

Good luck!

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Lishka

Posted by CA quest (Member # 6827) on :

Hi gary,

A neurologist put me on Neurontin preLyme diagnosis to help the pain. It made me too sleepy in the day time at the doses he recommended so I self medicated and took around 400-600mg 2hrs before bed time and it was the one thing that worked for me and allowed me to sleep without much pain and without any noted side effects too. My worst pain and consequent sleep interuption from the pain and from other neurological weirdness was at night, so that was when I needed help the most. So I guess it depends upon what your individual response is to the drug. Like it seems to be for any of the meds: we all seem to respond differently.

By the way after diagnosis and some abx treatment, I had less pain and stopped the Neurontin.

Quest

Posted by Trillian (Member # 6857) on :

Personally, horrible experience with Neurotin. Was so sedated that I couldn't function. Couldn't wake up, but couldn't sleep well, either. Didn't really help the pain much, either. When I tried to come off of it, got even worse. Completely wired (not in a good way) nervous and irritable, couldn't sleep at all, pain was even worse, very shaky, don't know how my family managed not to kill me I was so irritable. I personally know several other people who had bad experiences with it, and only one who liked it.

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The only way to define your limits is by going beyond them.
-- Arthur Clarke

Posted by Aniek (Member # 5374) on :

I tried Neurontin this past fall. I never made it up to a dosage that helped at all with the pain. I was extremely fatigued and weak on it.

I already take 30mg of Flexeril, and it may be that the combination was too much. I can't take Allegra for allergies on Flexeril. I took a child's dose once and couldn't move all day.

I was prescribed the Neurontin for burning pain in my feet and leg muscles. I still don't know if it's nerve pain or not. Neurontin is supposed to help with nerve pain, according to my pain specialist.

Posted by Lymetoo (Member # 743) on :

Neurontin helped me some. As others have said, it really helps with sleep and with nerve pain. If you can get some relaxing sleep it would help you overall.

I now only take 300-600 mg at night, depending upon how I'm feeling and whether or not I slept well the night before.

Seems as though when I try to leave it out, my sciatic nerve pain kicks into gear. I do all I can to keep that monster happy!

You must ramp up the dosage...or you WILL be drugged in the a.m. If you take it during the day, you will be pretty darned sleepy.

Good luck!

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oops!
Lymetutu

Posted by vandeb (Member # 6345) on :

I've been on neurotin for almost 9 months 3 times a day.....along with flexeril, darvacet, 3 abx, B 12 shots, klonopin, well you get the idea.......like most lymies I have to take a pile of meds......but I have never had any problems with neurotin or side effects that I know of.....

most of my problems are with the abx.....trying to find the right mix....I'm herxing right now so I guess it's all been working....hope you find what works for you soon.......we're all different and react to all the meds in different ways....I just believe in trial and error.....under the leadership of a wonderful LLMD......

God bless you and all the lymies as we struggle to kill this horrible disease.....

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Debbie V.

Posted by Paisley (Member # 6502) on :

I am on neurontin and find that it definately helps with my pain. before I was diagnosed with lyme I developed something called RSD - an autoimmune disease- the pain signals don't shut down. I have two distinct pain issues the RSD and the Lyme nerve damage pain... I believe the neurontin is helping with both.

initially, it did make me very tired, but I think my body has adjusted and I haven't noticed any other side effects.

hope you find some relief
regards

Posted by lymebrat (Member # 3208) on :

Hey Gary,

Sorry your in so much pain...

I tried Neurontin twice for pain..both times it did help ease the pain a little, but it wiped me out...

And for me, my pain wasn't a daily occurrence, I only needed help with pain a couple times a week. And the Neurontin needed to be taken daily.

Like I said, it wiped me out..to the point I was on the couch in a daze for almost 2 weeks.. so my doc had me try Vicodin. I found it worked much better for me..as I could take it only as needed.

My twin sister has Trigeminal Neuralgia.. ( has had 3 brain surgeries) and uses Neurontin for her nerve pain.

In her case, Nuerontin is a life saver. It did make her extremely groggy for the first month, and it also makes her stutter sometimes, but these are nothing compared to her pain.

Hope this helps and I hope you can find some relief from your pain!

Best wishes
~LymeBrat

Posted by GEDEN13 (Member # 4151) on :

thank's missy

i just got a rejection notice from my ins. co.said they are not going to fill the script.

letter behind that was from the ins. co..it is an appeal form.this is some kind of joke.but i'm not laughing.

called my pcp. he is going to write them a letter requesting the neurontin.

it's the gawd awlful burning in my leg's that,s the worst.i'll be dreaming my leg's are on fire,and they are.

i have an appointment to see an orthopedist next monday.hope he is lyme literate..

thank all of you for your input......gary

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Posted by lightfoot (Member # 2536) on :

Hi!!

I've been taking neurontin for over a year at high doses for anxiety, nerve pain, restless legs and sleep.

It has helped a lot and I have had no side affects....it can make you dizzy...but since I'm a "little dizzy" anyway, well....

It is not addictive. I don't really know if it's in the same class as topamax....

It's not really a pain medication as I understand it. I haven't gotten sleepy during the day at all.

MS patients use it a lot at high doses for nerve pain also.

I take 600 mg with lunch and dinner and then 2400 mg before bed for a grand total of 3600 mg. This dose is not uncommon for MS patients and from what I understand it is a fairly benign drug.

There is a generic on the market now and I save a fair amount on my co-pay by using it.

I'm sorry about your insurance company, bummer!!!! I hope the letter will help. Possibly having a specialist like a neurologist or psychiatrist write the script might help. Yo, not that I'm advocating a neurologist!!!! We do what we have to do.

Good luck and I hope you find some relief for that pain!!

Healing thoughts.....lightfoot

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C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]

"A friend is someone who knows the song in your heart
and can sing it back to you when you have forgotten the words".
Unknown

Posted by Laurie (Member # 159) on :

Thank god for Neurontin - I don't know if I'd have any quality of life without it. I've had chronic Lyme since 1984 but never needed anything for pain (except anti-inflammatories for back pain probably not related to the Lyme). Then in 1998 I developed neuropathic pain in both legs that was truly unbearable. It started with numbness and tingling, I felt like I was walking on stilts, couldn't feel my feet. Within a short time this progressed to burning, searing pain, mostly down the front of the calves. It was like someone had scraped off my flesh and then salted the wound. I couldn't stand sheets on my legs, and almost couldn't stand the fine water spray in the shower. I actually had to quit work at age 42 because I couldn't function in this much pain. I had yet to be diagnosed, believe it or not (!) with the chronic Lyme (despite a history that screams "tick borne illness") but I did have a doctor who referred me to a neurologist who put me on the Neurontin, gradually increasing the dose by increments of 300 until I was up to about 1800mg/day. I was a "fast responder" and the relief was remarkable. A few months later I was diagnosed and started on abx, which I went off of after 3-4 months but the pain returned (I also had "shin splints") so when I'm on it now I stay on much longer. (I also developed parasthesias at the same time as this neuropathy pain - crawling, itching, stinging and buzzing on the face, lips and upper arms, and I'm not sure it helped that quite as much.) I relapsed again a couple of years ago and 25mg amitryptilline was added, which made a big difference. Sometimes the legs still sting and the bottoms of my feet feel like they're "snapping..." But I'd probably be dead of self-inflicted means if not for the Neurontin. It did make me quite sleepy and "drunk" feeling at first, and will still occasionally do this if I don't eat with it. (Maybe one reason why people tend to gain weight with it.) I take 2100mg a day, but I know there are people taking a lot more. Since your pain sounds like my pain, please let me know how you make out.

Posted by Laurie (Member # 159) on :

PS I'm on the generic now, which was nervewracking (esp since pharmacies keep switching generics to save $) but so far so good.

Posted by just don (Member # 1129) on :

I dont care what you switch to but get OFF those darn patches(duragesic). Nothing and I relly mean NOTHING has ever made me as sick as those things when I was in the sun or a too heavy coat put me in a sweat and they dumped ALL the med at once. If you live in a cave, are 192, move at the speed of snails, and never sweat or get warm even 'maybe' they 'might' work for you, otherwise forget it.

You asked for first person response. Lymesux's links are great answers for you.

I take 3-400mg per day now. My pcp doesnt care how many I want to take(well you have to know ME). From this thread I am going to change to 1 morning and 2 nights and see if daytime fatigue gets better. Sleep used to come easy last summer, but now is a BIG problem again. But I have ALOT of extra stress right now. Cant talk about it, period!!!
Tryem you might likem. Or "smoke them if you have them!!!"--jd--

Posted by Shar (Member # 2619) on :

I have been on neurontin for 4-5 years. I tried elevil 250mg for leg and foot burning, even through my hip and arms at times. The Dr. changed me to Neurontin and I had 90% less leg pain in a very short time. And no side effects, that was even better.
Also for the burning pain, try cold water, cooler showers and deffinetly no hot baths or heat pads. My burning pain pain felt like "burning cold" right before going numb in ice water...all I wanted was heat. It felt good for a minute or more then pain all night long. A cold brisk swim can last me 24 hrs with out leg pain...it's that easy. Of course I tried lowering my doseage and decided it is not worth it. Currently I take 4-300mg caps 2x a day. Hope it helps you. And I am on the generic now, no difference.
God bless you.