Neurontin

anyone have experience with neurontin? it's a medication that's usually used for epilepsy and nerve pain. some of you may know that i've been having vertigo attacks since september. i went to the ear doc and did a balance test, which showed that there was way too much activity for it to be caused by my inner ears. it had to be my brain sending abnormal signals to my ears. my primary doc thinks it's the result of the stroke that i had 2 years ago. whether it's a seizure or not, it would be quite difficult to find out through testing, so my doc thought that testing would waste my time. so we went on to discuss the meds. so, now i'm taking the neurontin nightly, 300 mg. i'm hoping it will help prevent my vertigo attacks, as they are nasty and very exhausting. i know what side effects to be aware of, but i'm just wanting input from you of your experience. thanks in advance.

I was on neurontin for nerve pain a few years ago. I never had any of the side affects from it at lower or high doses. It worked wonders for me. Made my life bearable and much more easy.

I'm a concerned a bit about how difficult it would be to find out if you are having seizures. I don't see where testing is a waste of time...if nothing else, it can rule out a problem as well as verify a problem. If this were my problem, I would push for the testing....if for no other reason than to rule out and feel comfy knowing if it was seizures or not.

A neuro doc would be the one to see for this...not your pcp doc. An EEG could help detect abnormal brain function....whatever it might be. And it's painless....what better testing could be done eh? Of course it's up to you....strictly your decision and if you feel comfy with your doc...then so be it. I would just hate to think of something going undiagnosed when it could be easily ruled in or out.

I hope the neurontin works for you. It really is a great med for a lot of folks!


sabby

Nice!! I just seen my PCP and have neuropathy in my legs and hands. She has taken me off the elavil and tegretol and put me on low dose pamalor. She said neurontin is a great,w onderful drug and wants me on it once we see what psych and neuro say adn the batteries of tests i need to do...anyway, i just thought it was great to see a post on this just when i needed it!! Not that i go against a dr or tx with meds...it just eases my worry level...THANKS!!! ~ melanie

I've been on Neurontin after having had four back surgeries - for the spasms in my legs, the pain. It has worked really well for me as well and helps keep the pain away.

Hope it works for you.

Mary Alice

mrs. moggles do you have any idea what the cause of your PN is?

I am diabetic, the one thing i know for sure. With that dx in mind, my old gp dx'd me with diabetic/peripheral neuropathy. I also have gastroparesis (which another dr said IBS). Years ago, 1999 or so, after a week of screaming at the mere touch of a feather (or ANYTHING, ended up in E.R. on morphine and demerol...no food because due to pain my blood sugars were high. I never felt worse in my life...well, that may not be true, i dunno. When i was released think i had nuerontin for a while, then was changed over to tegretol...i have been on for about 5-6 yrs now...missing 2 days and i am screwed...now new pcp stopping me cold turkey. My fingers feel (don't look) swollen and knuckles are hurting so much and my legs...you know how when you stand close to power lines they kinda hummmmmm with electricity??? my legs feel like all the current is running thru them at moment, other times, it is fiery hot shards of ice piercing them and it is getting worse and will continue to do so until the 10th when i see a neuro...well maybe later since he wont do anything but order tests... OMG i am sorry, i kinda have diarrhea of the mouth (well hands...) ~ Melanie

it sounds like you might have small fiber peripheral neuropathy. The nerves which control temperature, vibration and touch. There are special tests for small fiber neuropathy, so if you have an EMG/NCS and it comes back negative keep this in mind. The emg/ncs does not detect damage to the small unmelinated fibers. It detects damage in the myelinated large fibers

OMG!!! They are going to stick needles into my muscles and and and??!! I am freaking out at that...I think she mentioned some test that sounds similar!!! That the neuro I go see on the 10th, please please please...I am hyper pain now and just on 2nd nite of no teg or elavil. I mean i know that they are going to try to do a spinal tap and and and i really really dont want. So why am i going to have to go thru more more more pain to prolly have no def. diagnoses, I dunno. Do i have to??? Can they try a med and if it works, leave it at that????

why are you being taken cold turkey off of tegretol which is an anti seizure med? for that matter why cold turkey off of elevil? I have always heard that they should be weaned off of never taken off cold turkey. Going cold turkey of of Anti seizure drugs can actually cause seizures.

The emg/ncs isnt that bad , i have had 4 of them, but you can ask for test for small fiber neuropathy before that that are not painful at all. QSART and QST ( qualitative sensory testing) and a sweat test are used for that as well as sometimes a tilt table. Diabetes usually causes small fiber neuropathy.

It is advisable to try to find a cause for your PN as that might lead to better treatment results. IN your case i would make sure my sugar levels are under strict control.

Ask your doctor why you have to come off cold turkey, i dont really understand that.

I have had PN for over 6 years now by the way. Mine is from toxins.

Yea I don't understand cold turkey either. I think she is trying to get most meds out of my system for the neuro to be able to run tests. I go see a doctor out in oakland on the 10th. Thanks for the reassurance that it isnt too painful. I deal with needles all the time so I dunno why it freaked me out soooo much!!!

We don't know where or why I have pain. My last A1C was 6.6, the lowest it has been since I have been actually trying. For a long while, I let it go unchecked because I didn't care if I lived or died. At one point, after a week of not able to be touched, i was told it was neuropathy. No testing or anything else. So right now, I told my new dr., let's not take into account what I have been told in the past...I want to know what it really is.

My father has MS and my Mom says that I am walking my Dad's footsteps medically and fears that that is what I have. It surprised me to learn that his lower lumber are fused and that they are still fusing because of the MS...My lower lumber have fused too and I was told by one doctor that whoever did the surgery was a genious...I was like, GOD??

All I know is that now the meds are leaving, my hands are hurting so bad...They feel as if they are swollen little sausages and so stiff to bend, esp. when I get up in the morning. Also, I have been having worsening vertigo and headaches galore. My sleep even with a sleeping pill is erratic at best. I am just, ugghhhh, I feel like I am not in control and it is depressing.

I will do/take any tests nec. to find out. Despite all the previous dx's I was told my pain for the most part was a figment of my imagination. It's all in my head. But often, reg bloodwork comes back as good as a non ill person and you know your body and I know my body and I know there is something wrong. I did do a lot of damage to my body...od'd on insulin/sugar way too often so as now I am insulin resistant. I did drugs for a while of which I am not proud of and an abusive ex is no reason for me to have done it, and now I have scarring slightly in my lungs. I was told I had asthma, and put on 3 pumps, but stopped them when the next time I was told it was stress asthma. Still dun explain the scarring. I am back with albuterol now as it DOES seem to help.

I am rambling now, sorry. I am still on a lot of meds and I dunno what to do or suggest or have what opinion when something is suggested. I was told to exercise...the more i walk the less the pain will be...it hurts so much, but i keep trying...sometimes i am laid up a week after a mile walk...so i am at breaking point i think. Sorry to keep bothering you. ~ Melanie

you arent bothering me, im the one who asked you

lots of people with pn are told its in their head or stress before test results prove otherwise

i have chronic bronchitis and asthma which is related as in same cause as my PN

If you think it might be MS you should be getting an mri of your brain and also at least cervical back and for you based on what you said about your back lumbar.

you do have to keep moving as much as possible though it is easier said than done many times. When i stand or walk it feels like the bones in my feet are broken.

Even though i wonder why your doctor is having you go off tegretol and elevil cold turkey, in another respect your doctor is doing the right thing in having you go for tests. Many doctors when they find out you have diabetes and PN just automatically write off the cause as diabetes even though there may be something additional going on that should be eliminated. An example is that MS and PN can have many of the same symptoms so MS should be ruled out. Feel free to ask me any questions or if you want to talk about test results or what you r doctor tells you. I didnt know what PN was when i got it and it was very scary, i didnt know if i was going to wind up not being able to walk, it was progressing so rapidly. Take Care.

((((melanie)))) i'm so sorry that you have to go through all this medical mess. i do hope that your docs will find some clues to what is going on. i've been through so many tests 2 years ago, including lumbar puncture. they didn't find anything wrong with me until after the 5th mri scan of my brain which revealed that i had a stroke (the lesion had hid the stroke until it shrunk and went away). the stroke might be why i've been having vertigo, so that's why i was put on neurontin.

how long does it take for it to start working? i need to know. i'm still getting vertigo, and was told that it could take up to a month before it starts working. so, i'm not really sure at this point.

I hate vertigo. I experience it too. It is one of the things that makes me nauseous with a quickness. I take meclizine for it and it helps. If not, the promethizine helps...

I hope they can find what is wrong with me towards the beginning of the testing rather then at the end. or god forbid they pronounce me healthy and say it is all in my head. i dunno if i will be able to stand that!!!

((((((ww))))))I do not know exactly how long it takes, if I remember correctly, 6 weeks at least...i think. I hope it helps soon!!

melanie

wickedwings, I took Neurontin for several years but as an off-label Rx for depression with sleep disturbance. It helped both a lot.

There's a wide safe dosage range with Neurontin so your doctor could raise your dose if it doesn't help you soon.

I hope you get relief from your Vertigo soon; it's very hard to have to deal with!

This drug was prescribed for me at one time. When I was going to a Pain Clinic, and they prescribed it for pain. And it didn't do a dang thing. Made me really tired.. and lethargic, and flatlined my mood. It sucked.

Hi MrsMoogles ...

Just wanted to check in and see how you're doing? It really confused me when you said you were being taken off Elavil cold turkey ... I've taken Amitriptylin (a generic) for 20 years and know for a fact that I'd have to be weaned off!

I also have Diabetes and peripheral neuropathy. Since research says we usually have Diabetes for upwards of 8 years before we're even diagnosed and my neuropathy started about then (my DX wasn't until 11-28-07), I believe it! Once I did have the diagnosis, my doctor started me on Neurontin.

I also have that swollen feeling like my feet are encased in a huge bucket of concrete, along with the burning sensations. Not fun! Last February, I developed something called Drop Foot. That's where you can't lift your foot and it "drops" ... and it was in both feet. I had the tests with the ... sorry ... needles. It's not TOO painful but I won't kid you that it was a walk in the park either. Basically, the Neurologist and the Neurosurgeon both said I'd have paralysed feet forever and there was <u>nothing</u> they could do. I took it as a Challenge!

I started to take Alpha Lipoic Acid ... ALA ... at a friend's suggestion. ALA is a universal antioxident which keeps the vitamins C, E, and A (I think) going thru your system longer. One of the major side effects for many of us is some relief from the pain of neuropathy! In my case, I swear it's the main reason I can now lift my feet and I'm even getting rid of one of my braces next month! (Oh, Happy Day!) ALA is over the counter and relatively inexpensive. Your doctor might not know much about it, but you still need to ask before taking it, OK? My doctor didn't know about it either, so I brought him articles before he'd OK it ... now he's VERY impressed with my progress and suggests ALA to his other patients.

BTW, congratulations of getting your A1C down! That will help the neuropathy, as well as making you feel better. I know it's difficult but SO worth the effort. Mine was 10.9 a year ago and my last A1C was 5.6. I'm proud of me ... and the weight loss has helped me physically AND mentally! If you ever need someone to talk with, please let me know? I honestly believe getting control of my Diabetes saved my life.

Take care and don't worry about the tests! You'll do just fine!

GoodMama

hmmmmm, fascinating.

Yep I was cut from both cold turkey adn neurologist yelled at me as if i had something to do with it...i have had 2 days of neurontin in my system and i am not shaking as much, almost not at all, and the pain level is back to where it was before going off meds. It has also made me TIRED!!!! Yet I am still up till 3, 4 or 5.

Thank you for the reccomendation and I will look for it at a natural foods store. My dad is paralyzed from belly button down and he walks based on sheer will power. His nerves migrated and that helped him. But it has caused unbearable pain. If this works may have him have a go at it!!!

Thank you so much for the info!!!

Melanie

Let me try to address wiced and Mrs. at same time. Neurontin helped me a lot and quickly. Much better then the pain meds as mine was for pain. However, I have taken self off slowly as w/pain meds and am aldo doing the active Lipoic acid. It was recommended by my guy at the vits and herb shop. He said that you can rebuild nerves in your body and that neurontin is ultimately hard on the liver. He stated people with severe neropathy have taken it and gotten much better. And I believe it. I am having aq high pain day from sewing on machine and the pain is near back fracture in T5T6. Neurontin would and did help that feel better, this is my first attach there in a long time.

Neurontin is an old and pretty safe drug. So is accupuncture if you can afford it. Spouse had chronic vertigo and that helped him forever! Good luck to you all with the nerve questions.

Additionally, no one asked but here are other things I am taking to help with nerve pain, rebuilding and for muscle spasms. L Argentine, free form of Amino acid, zyflemed p.m. herbal anti inflamitory. I am taking A, D, E as well. I feel so much better then I have, disreguarding my back pain now.

I have been on neurontin for a few days but I understand from my reading about it, that the benefits cant be measured until 2-3 weeks of taking it. I am TIRED!!! I feel a bit more depressed, wondering why moggles still wants to be with me when all I am is a concrete brick tied around his neck. I am not shaking anymore and my legs are ok after getting up from bed and then propping them up. Any amount of activity involving arms and legs brings on this feeling of endurance training...you know ...I fold clothes or wash dishes for 5 minutes and it feels like days of doing that or just standing feels like I have walked 50 miles without stopping.

I did get the ALA and will be starting it soon...I just got my scheduled appt for MRI not this weekend but next...I told moggles, what is the ppoint though? i want to stop wasting money on me for something I am told is apparently all in my head...and fibro is some quake dx that was given to me so they wont do a whole lot of searching. ..Ok, so I am a bit depressed, that is going to be taken care of on thursday. God help those who want to or are paid to help me...

melanie

Ahhhhh, Sweetie ... just try to remember that a lot of your depression is from PAIN. People who have never had to deal with chronic pain won't understand how depressing it can be, but I do. I tell people it's like having a toothache every day for years ... and the Bad Days are when that tooth abcesses. Since most people have had toothaches, they can sort of relate. Try it!

Fibro IS a disease! It hurts ... everywhere! That was the first DX I had until it was determined that much of my pain is due to having arthritis in every single disc in my back from the neck down. I always knew where the leg and ankle pain came from ... I have enough metal there to be considered bionic!

I guess my bottom line is this ... you hurt and you need to find out why. Screw the time, screw the money, screw anyone who doesn't understand that pain is depressing! I can also tell you you'll feel better just knowing WHY you hurt because when you know WHY, you can figure out how to make it better.

<center>YOU ARE WORTH WHATEVER IT TAKES TO FEEL BETTER!</center>

The Neurontin made me sleepy for nearly 2 weeks before it got into my system. Take advantage of it! Take a NAP! That side effect will be gone soon enough. The "drunken sailor" side effect took longer ... I'd get up and find myself needing to hold onto the door to get to the bathroom! Not fun, but it was funny! And don't get on anything like a step stool until it's in your system either. One side effect I had was almost like a vertigo, so watch out.

I'm glad you're going to start the ALA! I hope you have the same reaction I did ... just remember that it takes different times for different people. It started to work for my daughter within days but it took a month or so for me to see the results.

Hang in there, Mrs. M! Mr. M loves YOU ... even depressed, even *****y, even hurting. Don't forget that, OK?

GoodMama

I am tired. I am tired of fighting for myself. I never did that well to begin with. Advocating for myself. This is third time I have said,'i am hurting, please help me.' I get codiene, i get t3 or vicodin...i say that neither works can you please please please try soemthing else...i get email saying pick up meds in phrarmacy...its t3...gee great thanks. lot of help that is. It's all in my head here is another antidepressant. You can't be having that much pain all your tests are perfect
well except for the sugars, you need to get better control, blah blah blah...why try so hard to just have the pain drive it up?? who can explain my fever off and on for the past few years?? God I am tired of it all and wish I could just give up, but instead I spiral and rant and call myself everything you can think of. I won't kill myself, too chicken for that but it don't stop me from thinking and wishing...I guess i can see why moggles is worried, but i all talk no action. I want to give up with doctors though, it is too much energy. And moggles stressing about money and i need to get a job to help out, esp since I am not a good housekeeper...i am just useless on all aspects!


melanie

Hi MRs. I know exactly where you are on giving up on Docs. Please, if you can, start doing research on natural remedies for pain etc. It seems to be helping me.

Don't give up! Don't <u>ever</u> give up! You're not a quitter ... you're a FIGHTER. If you weren't a fighter, you'd have quit trying to find help a long time ago. SOO ... somewhere along the line you asked yourself, "Am I going to learn to live with this, or aren't I?" You answered that you WERE! That's a powerful and strong answer, Mrs. Moogles ... and now we need to work on the details.

Details? Yes ... details. You've already made the hardest of the decisions! I thank God you won't even consider the easy way out. "It" flashed thru my mind one day as I was driving in the mountains of NC. If I didn't make that turn ... if I didn't, I'd go flying into the trees and drop about 300 feet. The pain would be gone ... I wouldn't have to hear my friends tell me what they were doing and what I'd never be able to do again. The pain would be gone ... I wouldn't hurt with every single step from the instant I woke up until all the pills I took at night finally got me to sleep. What stopped me? The thought that if I didn't "succeed" I'd be in worse shape than I already was. That was the day I decided to fight! It was 1988.

I struggled with pain and fought with doctors for the next 19 years. I told them, over and over and over again, how much I hurt. I told them over and over and over again that people who take pain medicines <u>for</u> <u>pain</u> don't become <u>addicted</u> because they don't get HIGH! I printed out some (there are tons of studies) of my research and gave it to my doctors. Over and over and over again, research has <u>proven</u> that addiction ONLY happens when people ABUSE pain meds!

I don't know your background. I don't know if you've had addiction problems in the past. Is this why your doctors won't help you? Mine were just afraid of the addiction <u>potential</u>, even though all they were giving me was a prescription for 30 oxycodone ... every 3 months! It was like that for 19 years ... 10 oxy a MONTH ... 2 or 3 a WEEK. If I hurt badly one day, I had to decide to take a pain pill ... or what if I hurt more tomorrow? Maybe I shouldn't get the relief TODAY ... maybe I should suffer TODAY. I suffered a LOT until a friend with chronic pain finally convinced me to go to a pain clinic.

Here's the STOOPID thing ... I was <u>afraid</u> to go to a pain clinic because I didn't want the doctors there to think I was only after pain meds! I didn't want the third degree like I'd been getting from my doctors. I was tired of fighting to get help with the pain. I didn't think they'd help me ... I thought they'd lecture me about addiction.

I was so wrong! Sure, I had to sign a contract swearing I wouldn't "doctor shop" and would bring all my pills in to be counted at every visit. Sure, I got the addiction lecture. But I also got help! Finally, there were people who understood chronic pain ... the hurt part, of course, but also the part about the depression. Thank God for good insurance because I had an MRI of my back and xrays of my bad leg. On the next visit, Suzie (my contact at the clinic, she's a Certified Nurse Assistant ... sort of like a Physician's Assistant) started me on 3 oxycodone a day. THREE a DAY! Remember, I'd been getting about 2 to 3 a WEEK.

She explained that we have to get the pain under control and keep it there. No more "maybe I should suffer today because I might need that pill more tomorrow" ... now we were going to stop the pain <u>before</u> it hurt so much! I didn't have to explain my pain because <u>finally</u> someone could look at my xrays and MRI and SEE the pain!

I still hurt in the morning. I still take those first few steps and think I'm going to pass out with the pain. But now I know relief is only about 30 minutes away and that makes it bearable! I lived with it for 19 years, I can live with it until my first pill hits my system. It's like a miracle!

Sorry to have written a book here, Mrs. Moogles, but I wanted you to know how wonderful pain clinics are and encourage YOU to seek one out, too. They aren't just for pain either ... they'll also help with the depression that comes along with chronic pain! The only "fight" I have with Suzie is she thinks I should be taking MORE meds than I am, and I don't ... yet.

If you knew me, you'd know my first pain pill of the day is working because I've been sitting at my computer long enough to write this. I woke up this morning in more pain than usual ... the temps are below freezing, a front's coming through, and the arthritis pain scale is at High according to accuweather.com ... but, get this. I'm not worried! Today will be one of those days I take an extra pill to keep myself pain tolerable. You do know that there's not a pain medication in the world that will keep you pain FREE, right? But there are medications ... and there are people at pain clinics ... who will help you FUNCTION with your pain!

I hope this helps ... and I'm sorry I took so long to answer you. If there's anything I can do to help ... if you need someone to talk with who understands chronic pain or you just need to vent, please contact me!

Take care and God bless you! I know it's hard ... I've been where you are ... but there IS help.

GoodMama

excellent posting. I too did the pain clinic thing and the longer the drugs are out of my system the more pain I am in. I sednt myself there. It was a miracle. I am making choices now to try to stop E.R.visits for more pain management. Mrs. Moggles. I did some research on the Alpha Lipoic acid last night. It seems it is routinely given to patients in Europe with neiropathy. The only US studies I found were out of Oregon and they seemed to suggest that taking 600 miligrams a day was very helpful. They also did IV studies with more success. They also suggest L-canitine to be used with it. Get this! It helps your body regulate insulin levels as well. Perna here is so good at computer research and linking. Maybe if she sees this she will find more then I did. I don't even know how to link. Gotta wait for a kid to come home andshow me.

Please keep going where ever you can to get the help and validation you need. I too could use some oxycodone right now. But I am making a CHOICE. Not being messed around by the doctors. You will get the pain relief you need. Believe it and make it happen. Good luck. By the way, chronic pain is disabling, depressing and just plain sucks!