Discussion in 'Fibromyalgia Main Forum' started by Treca, May 12, 2006.

  1. Treca

    Treca New Member

    I know that when you take certain narcotics that your body may become use to it and it doesn't work anymore.

    I was wondering if any of you can tell me if this has happened with you while taking Neurontin?

    I know I've been talking about it a lot lately and that's because my doc put me on it and it is finally working and taking away the pain and I just don't want to get my hopes up to much because I'm scared that it will be like certain narcotics and it won't work anymore after long use.

    I'm really new to this trial and error stuff that doesn't include narcotics that I was on since the day I was diagnosed. So I'm soaking all this new information up like a sponge and you wonderful people are the reason. If it wasn't for you I would have never found out about how Neurontin is help some people and never found out about all the new meds that are out there that can help.

    I know that I'm driving my doc nuts when I see her every week because I have a handful of information in my hand and I'm ready to drill her. :) Because of you she is actually learning as well.

    I'm grateful that I've found this site and you'll never know how much you have helped me in such a short time.

    God Bless for giving me more reason to hope! You guys are absolutely wonderful.

    Many thanks,
  2. RunninCrazy

    RunninCrazy New Member

    I started out on Neurontin, but we found out that I'm allergic to it.

    Anyway, before I started on it, I got some info from my doctor and she told me that she has pt's who've been on it for long periods of time and they are still doing well on it. Hope this helps.
  3. findmind

    findmind New Member

    Hi Treca,

    I've been taking N. for about 5 years. I take it for Peripheral Neuropathy in my ankles/feet.

    It has been very helpful to me. I do not take anything else for pain except an aspirin or two for osteoarthr. neck pains.

    I started out with 3-300mg per day, and I'm up to 2-300 mg per day, 3 times a day (6 caps). I have absolutely no side effects from it whatsoever.

    I've been told a person can take up to 3600 mg of it a day (double my dose), and that its quite benign in those that tolerate it well.

    It doesn't eliminate all the pain, but I'll tell you this: I don't cry with pain anymore.

    Hope it helps you, too...
  4. Dee50

    Dee50 New Member

    DID anyone taking Neurontin have extreme fatigue before they started taking it? If so did the neurontin make the fatigue wrose? I'm hunting for pain relief but my fatigue level is very high and I see the common side effects of neurontin are sleepiness, dizziness, fatigue, clumsiness, lack of coordination. I'm just wondering if the side effects go away after being on it awhile or if those of you using it never had these side effects the fatigue being my biggest concern of course.
    Thanks, Dee50
  5. rachel432

    rachel432 New Member

    i have been on neurontin 300mg three times a day forabout .5yrs now. i started taking it for severe daily headache. while it didn't totally eliminate the headaches it did decrease the severity and frequency of them. i no longer wind up lying in a silent dark room daily in pain. i never really exparienced the side effect of fatigue from this medication. i think it's a great drug and one that is always worth trying. i hope this helps.
  6. Treca

    Treca New Member

    When I first started on Neurontin I was loopy and dizzy for about a day. When I was sitting down I was fine, but when I got up I was dizzy for a few minutes and then I would be OK and my body adjusted just fine. I didn't feel any sleepiness.

    I have to say that I'm surprised with how well it has worked for me. I guess I one of the lucky ones where this med is actually taking my pain away with the help of Tramadol and Bacolfen. I think I've finally found a combination that is finally working for me that is not a strong narcotic. Though I think I'll have to tweak it a little and I think I'm on the right path for me.

    Of course everyone is different, but everyone's experience is great information to give to your doctor or just yourself.

    Hope this helps!
    Treca :)
  7. Dee50

    Dee50 New Member

    Thank you Rachel and Treca:)
  8. Mikie

    Mikie Moderator

    Isn't a narcotic; it is an antiseizure/anticonvulsive med. It, and Klonopin, another antiseizure med in a different family of drugs, relieves pain by interrupting the pain signals in the brain. Dr. Cheney believes that many of our symptoms are caused by a slight state of seizure, which is common in people with our illnesses. These include insomnia, sensory overload, anxiety/panic attacks, muscle spasms, RLS, and tinnitis. Antiseizure meds often help relieve these symptoms too.

    Most people will develop a physical dependence to these meds and would have to wean very slowly off of them to avoid rebound seizures or, at least, severe anxiety, if the meds were stopped cold turkey. Many people, including docs, believe these meds are addictive but it is unusual to develop a psychological addiction to them.

    It's a really good idea for us to research any meds our docs prescribe. We can't rely solely on them to prescribe for us. A lot, if no all, the info they get comes from the pharmaceutical reps. It is so easy now to research the good and bad aspects of meds so that we can try to make an informed decision.

    I have not taken Neurontin but I do take Klonopin and it has been a God send for me. I am currently trying to wean off of it as I don't know whether or not I still need it. It will take at least 8 months to wean off the two pills I was taking each night. So far, so good.

    Love, Mikie
  9. Dee50

    Dee50 New Member

    Thanks Mickie:)
  10. Treca

    Treca New Member

    It's one of the reason I finally decided to try Neurotin because it wasn't a narcotic.

    See the only things I've ever been on have been narcotics and I was getting very scared about my health and what they would do to my body because I was 20 when I was diagnosed with this DD and have been on only narcotics until just about a month and a half ago.

    Because of this site it has made me more aware of the meds out there and I've been searchin' like a speed demon getting as much info as I can about everything that I find on this site.

    Until this site I never would have known that there where different treatments for FM. After thinking about it for awhile I was shocked and a little P***** off that the other doc's I had seen in the pass wouldn't take a different route even though I ALWAYS told them that if they wanted to try something different that I was always up for it and they did nothing.

    Though then again seeing that hind site is 20/20 these are military doc's I'm talking about...I should have known better though at the time I was new to military doc's, but I should have remembered all the problems my sister-in-law had with them. Brother and sister-in-laws are military as well.

    Oh well live and learn. I'm just glad that I am now informed and will always do my own research and make my doc read it and work with me and not me work with the doc. I know that they are doc's for a reason, but it's my life, my pain and I will control in the most safest way possible and not be swayed by something if I don't feel good about. I used to be like that and just went with what doc's would say, but no more.

    It's funny when I first got here to Ft. Stewart I had to see this doc and he comes in saying he doesn't believe in FM. "I was like that's fine give me my meds and I'll go, but know this I don't need you to believe in FM because I do. You are blind and just plan ignorant to what is going on with millions of people and it's time you updated your old text book to the 21st century you old geezer." It was so funny to see his face after I said that. I don't think any of his patient had ever stood up to him. I know that I shouldn't have said some of the things I said, but you get so tired of trying to defend your DD to such old stupid people who won't let their little tiny brains go beyond their text books of long ago.

    Ok, I'll stop now. Sorry for being so long winded.

    Treca :)
  11. Mikie

    Mikie Moderator

    The old ones probably still have that ego thing going on. A lot of young ones do too. Still, there are good docs out there who are trying to understand our illnesses. Managed care makes it hard for them because they don't want to pay for all the tests and treatments. Our challenge is to find good docs willing to work with us and kick the others to the curb.

    Good luck with the neurontin.

    Love, Mikie
  12. onedaymagpie

    onedaymagpie New Member

    Hi there - if Neurontin works for you, that is great. I don't think you will have the tolerance problem at all. I was on neurontin for a while, but I found it made my fatigue and brain fog worse, so I rarely take it now.
    Cheers, Mag
  13. JLH

    JLH New Member

    I am still taking the same dose of Neurotin that I started on years ago .... and it is still working for me, so ... so far, so good.

    Neurotin and Cymbalta are the 2 meds that have worked best for my fibro and I learned about both of them on this board!!!!

  14. Treca

    Treca New Member

    I learned about Neurontin on this board as well as Cymbalta. I can not take Cymbalta unfortunately because it gives me the worsts headaches I've ever had. I tried it on and off for a week and knew it was the Cymbalta because every time I would take it no more then 15mins later I would be bedridden with a headache that made me nauseous. Since I have a toddler that wasn't gonna work.

    We(doc and I) are considering Wellburtin, but I'm still on the fence about it and still thinking about it. The biggest thing I'm worried about is the low sex drive. I've been there done that and I'll never do it again. Anyone on Wellburtin and their sex drive OK while taking it?
  15. gramaT

    gramaT New Member

    My hubby has been on Wellbutrin SR for a few years now and he has no problem (believe me) with his sex drive!!
    It is supposed to have a lower side effect of it.

  16. DorothyVivian

    DorothyVivian New Member

    Hi Treca,
    I've been reading the responses to your message and would like to add what I've learned about "Lyrica", a recent version of "Neurontin". Both, from what I've learned, are indicated for preventing mild seizures and for diabetic neuralgia and post herpetic neuralgia (PHN)after 'shingles' or other herpes viruses neuralgia. I have had crushing fatigue and very sore muscles, all over, for 22 years. I was first dx'd with "Epstein-Barr Virus Syndrome" (EBVS)..the first name given to this illness. Then, it was called "Chronic Fatigue Immune Dysfunction Syndrome" (CFIDS). For the first few years, my symptoms were mostly the fatigue, sore throats, aching muscles and swollen glands. (Physical activity was extremely difficult during relapses and efforts to increase physical activity brought on relapses. This is still the case for me, most of the time.) Often, my head feels as though it was full of fuzz and sometimes I had severe headaches at the base of my skull. For about ten years, I was given very low doses of prednisone to prevent asthma attacks and I gained the most of the extra pounds I carry during those years. Now, and for about the last nine years, Singulair prevents the asthma. Yay!!
    Recently, the pain in my lower back became severe and an MRI showed I have two vertebra which are badly damaged and this excruciating pain sent me to the Pain Management Center at Loma Linda Medical Center, in California. The pain doc there prescribed "Lyrica" for the muscle pain and Ultracet for the back pain. Taking 25mg. of Lyrica every six hours has reduced the muscle pain about 75 to 80%. (I take the lowest dosage of Ultracet at the same time as the Lyrica.) That's a big, big help even though my back still hurts and I also have periods of extreme fatigue.
    I understand Lyrica is the brand name for pregabalin, slightly different than Neurontin, both made by Pfizer. Some cynics point out that the Lyrica was developed because Neurontin is going off patent soon..if it hasn't already. And this would mean that Neurontin in the generic form will be available at lower costs. At any rate, one woman told me her husband is a truck driver and Neurontin "..saved his life in terms of him being able to keep working. He has taken the highest dosage permitted for a long time and he is doing very well on it. But, I always feel as though it is best to stay aware and informed. And always to remember we are each uniques and we respond to medications differently.
    I wish you the best of luck with Neurontin and hope you continue to make strides in your recovery!!
    With love, Dorothy
  17. Treca

    Treca New Member

    Before I went on the Neurontin(not Lyrica)I was EXTREMELY hesitant. After doing A LOT of research on my part I finally decided to start after I made sure that the meds I was on weren't working like they should(at least to my way of life)

    I have to say that I had huge doubts on if this med would work. Like most of you I have become very cynical about doc's and meds. I just can't help it anymore because of all the crap I've had to deal with in the past.

    I enjoy hearing everyones sides whether they be good or bad. I would rather have all the info I can get and be prepared and armed with knowledge before I start anything or are on something and some other kind of info is out that I could learn from.

    I have come to realize that I am truly blessed to be able to be on meds that will not hurt me like narcotics can do after years of use. I was on narcotics for 6yrs and I was so scared, but if I was to find out that the other meds out there would not work or are not working then I would go back to narcotics. I would rather live my life pain free and be able to raise my son and be happy and live my life then let the DD tell me what I can and can not do. I'll be extremely thankful for the time that God gives me.

    Of course everyone's story is different. There's no way that everyone can take the something and have the same results. We are unique.

    I for one love everyone's uniqueness :) This board is a wonderful mix of characters. It's a wonderful family we have here!
  18. jharper

    jharper New Member

    Hello everyone -
    by any chance had anyone that is taking Neurontin experienced weight gain? I had started dropping weight after getting off of Flexeril (over 20lbs. lost!) and now am seeing a weight gain after being put on Neurontin. I don't really notice a difference in my pain with the Neurontin, so I would like to get off of it. Do I have to wean myself slowly?

    Appreciate your help & wisdom!
  19. lilaclover30

    lilaclover30 New Member

    Mayo Clinic put me on it 3 years ago - I take 400 mg. 3x a day. But I still hurt!i have thought of asking for Lyrica but my PCP is stingy with RXs. i do take 2 Tylenol #3 once in a while and never more that once a day.

    It helps for about 4 hours and then it goes away.

    Tomorrow I go in to Pain Management for a nerve block on lower spine for Spinal Stenosis. If I could get that to work, I would talk to my PCP and see what he says,.

    I am so glad that some of you are having such good luck. Keep going and I do hope you can have help with pain.

    Gentle Hugs

  20. suzetal

    suzetal New Member

    I started putting weight on when I started taking it.I gained 60lbs.In one year.

    I really don't care about the weight that much.Reason is I was bed ridden before the neuontrin and cymbalta,I am up now all day.I still cant do much due to other heath issues .

    Those 2 meds were a blessing for me.

    Take care

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