Scoobsmom.......this will help! Anyone taking/or taken neurontin??? Laura, I have a question for you....please read this post

Discussion in 'Fibromyalgia Main Forum' started by lindasue, Oct 4, 2002.

  1. lindasue

    lindasue New Member

    Good morning...
    My doctor put me on neurontin the end of last month and I can't stand it!!! I have been taking 100 mg of Zoloft before bed for over a year....and am continuing taking it along with the neurontin. He started me on 300mg in the morning and 300mg. at night. Also, just started me on Ultram...50mg 4 times a day, as needed for pain. Just started the Ultram yesterday....Needed to take it at least every 4 hours....What do I do at night when I wake up in pain?
    Well, back to the neurontin.....everytime I take it, within an hour or so, I feel like I have "electical currents" shooting throughout my body...They last for less than a second, but they happen alot!!! I hate this feeling....He wants me to up my dosage to 600mg. in the morning and 600mg. at night. I have NOT done so yet!! I don't even want to take the danged drug anymore. I hate feeling like I'm being shocked every little while all day long!!
    I see him tomorrow (yes, he is going to be in his office on a Saturday, pretty amazing uh??) and I am going to go over all of this with him.....But, I would really appreciate some feedback if you all have any, before I go to his office.
    I've had this DD for years and it attacked me again full force, 4 weeks ago (had been coming on since the first of the year, but I choose to ignore the signs...didn't want to believe it was showing its ugly face again). I had over 2 years of my life back.....Working, running around all over the place..all the time..It was almost as if I had NEVER been sick!!! Then BOOM!!! Can't even go out of the house most days....Had to quit my job (which I loved) and in pain most of the time....EBV/CFIDS/FMS....
    Anyone remember the Hong Kong flu in the late 60's early 70's?? Well, I thought I would die when I had it back then.....now I feel like I have it 24/7 with little reprive.
    Anyway, I really need some feed back.
    Prayers & blessing's,
    Linda
    [This Message was Edited on 10/04/2002]
    [This Message was Edited on 10/05/2002]
  2. lindasue

    lindasue New Member

    Good morning...
    My doctor put me on neurontin the end of last month and I can't stand it!!! I have been taking 100 mg of Zoloft before bed for over a year....and am continuing taking it along with the neurontin. He started me on 300mg in the morning and 300mg. at night. Also, just started me on Ultram...50mg 4 times a day, as needed for pain. Just started the Ultram yesterday....Needed to take it at least every 4 hours....What do I do at night when I wake up in pain?
    Well, back to the neurontin.....everytime I take it, within an hour or so, I feel like I have "electical currents" shooting throughout my body...They last for less than a second, but they happen alot!!! I hate this feeling....He wants me to up my dosage to 600mg. in the morning and 600mg. at night. I have NOT done so yet!! I don't even want to take the danged drug anymore. I hate feeling like I'm being shocked every little while all day long!!
    I see him tomorrow (yes, he is going to be in his office on a Saturday, pretty amazing uh??) and I am going to go over all of this with him.....But, I would really appreciate some feedback if you all have any, before I go to his office.
    I've had this DD for years and it attacked me again full force, 4 weeks ago (had been coming on since the first of the year, but I choose to ignore the signs...didn't want to believe it was showing its ugly face again). I had over 2 years of my life back.....Working, running around all over the place..all the time..It was almost as if I had NEVER been sick!!! Then BOOM!!! Can't even go out of the house most days....Had to quit my job (which I loved) and in pain most of the time....EBV/CFIDS/FMS....
    Anyone remember the Hong Kong flu in the late 60's early 70's?? Well, I thought I would die when I had it back then.....now I feel like I have it 24/7 with little reprive.
    Anyway, I really need some feed back.
    Prayers & blessing's,
    Linda
    [This Message was Edited on 10/04/2002]
    [This Message was Edited on 10/05/2002]
  3. Copper2002

    Copper2002 New Member

    Hi Linda,

    I've been taking 1800mgs/day for about 7-8 months. I didn't think it was helping until I had to do without for 10 days. Man, I could sure tell the difference!

    I'm wondering if perhaps your doc started you out with too high a dose for you, in particular? When I started this, doc had me begin with 100mg 2x/day, and aproximately once a week increase dose 100mg, plus taking 3x/day - so at the end of the 1st week, I was ONLY taking 300mg. It took quite awhile to get to this higher (my doc considers this the highest allowable)doseage, and symptoms were significant, such as you've described, if I increased too fast. When I reached the 1500mg level, I couldn't seem to get any higher than that, so stayed at that level for several months. I've only been at 1800mg/day for a month, and so far so good. Anyhoo, talk to your doc about maybe starting with a lower/slower dosing schedule, could help.


    Hope this helps,
    Copper
    Let Miracles Replace all Grievances
  4. Mikie

    Mikie Moderator

    I do not take neurontin; I take Klonopin, which is another anti-seizure durg which works basically the same way. In some instances, anti-seizure meds have the opposite of the intended effect. They can increase the neural activity instead of calming it down.

    What I like about Klonopin versis Neurontin is that it isn't as difficult to find the correct dose. Also, one does not build a tolerance as easily. Some docs mistakenly believe Klonopin is addictive and stay away from it, but that's just a myth.

    There's a good article by Dr. Paul Cheney in our Library on Klonopin. It does a good job of explaining the slight seizure activity which keeps us from sleeping; causes anxiety and panic attacks; causes RLS, and causes sensory overload. In order for us to sleep, we need to get our brains into a normal state, but sometimes these drugs cause the opposite effect.

    Love, Mikie
  5. lindasue

    lindasue New Member

    Dear Copper,
    Thank you for the quick response!! I'll talk with my doctor tomorrow and see what he thinks. HE is a great doctor (just happen to find him when I got sick again) God's Grace.. Did you have that "electrical shock" like feeling when you first started...If so, did it go away.
    Thanks again!
    Linda
  6. lindasue

    lindasue New Member

    Dear Mikie,
    Well, this is interesting. I remember taking Klonopin a few years ago and I never HAD the elect. flashes. I think you have already helped!!
    Of course, you are aways so helpful!
    Thanks much and Hugs and Blessings to you,
    Love,
    Linda
  7. dhcpolwnk

    dhcpolwnk New Member

    I just started taking Neurontin last week. My doctor started me out with 100 mg/day at bedtime for 7 days, then 200 mg/day at bedtime for 7 days, then 300 me/day at bedtime. I've just gotten to the 200 mg level. (Last night was my second day.) The first time I took 200 mg, I got the best night's sleep I've had in weeks. Except for a slight increase in my acid reflux (which can make falling asleep a little difficult at first), I've had no bad side effects that I can tell. My doctor started me with a much lower than normal dose because he wasn't sure how my MS might interact with the Neurontin and other meds I'm taking. But as I said, the first time I took the 200 mg, I had a straight 3 to 4 hours of sleep for the first time in a long time! I had additional founds of sleep at 90 min to 2hrs each, and for the first time in a very long time, I woke up feeling rested! My pain seemed less intense during the day, too, and the reflux wasn't any worse during the day.

    Unfortunately, last night wasn't a repeat performance of the good stuff, but I'm hoping the Neurontin will work for me again tonight.

    As for Klonipin, which I think Copper mentioned, I took that years ago for my MS myoclonus symptoms. As I recall, I was taking only 1 mg, and it turned me into a Zombie. I slept all day. I don't think it helped the myoclonus while I was awake, either. My son joked that the reason I was jerking less on the Klonipin was that I didn't jerk in my sleep, and when I was on Klonipin, I slept all the time! In short, for me dosage wasn't an issue only because I couldn't tolerate even 1 mg.

    Ironically, now that I'm having sleep problems, I've started thinking that maybe if I take 1 mg of Klonipin at bedtime, it might help with the sleep and not put me away during the day. I don't remember when I took the Klonipin years ago, but it might have been during the day.

    --Laura

    P.S. I just checked, and it looks as if it was Mikie, not Copper, who mentioned the Klonipin. Copper mentioned "electic flashes." I haven't had that from Neurontin, but I've had "electrical" type symptoms associated with my MS in the past. Specifically, I've had something called Lhermitte's Sign, where bending my head forward triggered an "electrical charge" throughout my body, especially along the spine and into the legs. Once I figured out that the trigger was bending my head forward, I just tried very hard not to move that way. It was like the old joke--
    Patient: Doctor, Doctor--it hurts when I move this way!
    Doctor: Then don't move that way.
    I don't get this symptom much anymore, though.[This Message was Edited on 10/04/2002]
  8. Kathryn

    Kathryn New Member

    Hi Linda,
    My doc started me on 100mg at bedtime for a couple weeks, then slowly increased it to 100mg 3 times a day. I am now taking 300mg 3 times a day. I lost my prescription benefit when I retired and had to do without it until we got new coverage, so I stopped taking it for awhile & REALLY noticed the difference. I had no side effects at all. I would guess that maybe you started off with too high a dosage. Of course, it is possible that you are one of the people with weird reactions to drugs. I have tried several sleep meds, and they all keep me awake. The fibro specialist that I saw this week says that is really common in FMS patients. Hope you find something that works for you.
    Kathryn
  9. Mikie

    Mikie Moderator

    If you were taking 1 mg of Klonopin during the daytime, no wonder you were falling asleep. That's the dose one takes to fall asleep at night!

    During the day, I cut a .5 mg. tablet into quarters and slip them under my tongue as needed for anxiety and sensory overload. It mainlines right into the system and calms me down. Very helpful for when the hostess seats some figity children next to me in a restaurant.

    Love, Mikie
  10. BonnieQ

    BonnieQ Member

    HI ! I took neurontin for about a year and decided to go off of it to see where my body was, but I am starting it all over again. I think maybe your taking too much at once. I started out per my dr at 300 at night for a wk then one in the morning and one in the evening for a wk. Then increased it by a pill each wk until I was up to one in the morning , one in the afternoon, and two in the evening. For a total of 1200 mg. He wanted me to increase it to two during the morning but I never did. But I was amazed at just how much this med did help me . Write down all your questions and don't be afraid to ask your dr. any questions you may have. Good luck, let us know what your dr says. I never had the electrical pain you speak of, but I would get horrible quick muscle spasms in my neck, this was before I took the med though. I havent had any side effects of this pill, except when I take the 600 at night I sleep good, and thats a good side effect!!!
    Bonnie
  11. pam_d

    pam_d New Member

    I tried neurontin a couple of years ago at nighttime... didn't get the electric current you describe & slept OK, but the next am had a hangover feeling, headache & was very dizzy; disliked the side effects enough to discontinue it.... Good luck to you, sounds like you're going thru a particularly tough time now, I can relate...hope you find the right combination of meds so you can feel better!

    Pam
  12. Fairyeyes

    Fairyeyes New Member

    Ugh- doc had me start out with 300 mg a day, and was going to work me up to 1500 a day. well, by the time I had worked up to 600 a day, I was hallucinating, I am not kidding you! Colors were flashing by in my peripheral vision, and night time was the worst. I would lie in bed trying to sleep, and instead every horrid graphic image you can imagine would go racing thru my mind. Dreadful. I have such bad reactions to most any meds, that I am going au naturel. I take St. John's Wort to ease my anxiety, and Melatonin and Valerian for sleep. They seem to work better for me with no side effects that I can tell of. Good luck to you- it sounds like some people are doing well with it, but not I.
  13. lindasue

    lindasue New Member

    Well, so many of you have given me so much help with this.
    I just can't tell you what it means to have you here!!
    Mikie, I had some kolopin that I've had for a long time and didn't like the "drunk" state it put me in....but I hate the neurontin!! So I decided to try half of my .5mg this morning after reading your response, along with 1 of my ultram!!!! I didn't take any neurontin and I feel better than I have felt in a few days!!!!! Bless you. I have felt more relaxed, so therefore the muscle spasam's and pain aren't as intense.....because I'm not quite as "tense" from the pain....you know the cycle....pain...stress....leads to more pain....leads to more stress............
    I'm so thankful to be having some relief for a few hours.

    And fairyeyes.....I felt the SAME way!! Just plain wacked out from the neurontin!! NO MORE FOR ME!!
    This is a breakthrough for me within just a few hours. I just can't do this without all of you!

    I am very sensitive to many meds....some pain pills just get me hyped up and the few sleeping pills I have taken make me feel awful! So I'll talk with my doctor about this relief I've had today and see where to go from here.

    Thanks all who have sent me messages!
    God's love and Blessing's,
    Linda
  14. dhcpolwnk

    dhcpolwnk New Member

    To Mikie:

    Thanks for the response about Klonipin. I was taking it for daytime myoclonus, which is why I think I was taking it during the day. The attending physician I saw at UCLA's Movement Disorders Clinic 10 years ago told me he searched the medical literature and could find only one case that, like mine, involve MS and myoclonus affecting different parts of the body. (Mine has affected my legs, arms, head/neck and sometimes my whole upper body.) He sent me a copy of the article about that case. The woman was taking 12 mg of Klonipin a day! As my son said, I would have been sleeping all day long!

    I'd already decided to ask my doctor about using Klonipin at night to help with the sleeping if the Neurontin doesn't work. I'm not sure how successful I would be at splitting a pill in two. I've tried that before but haven't been successful. I'd wind up with more link 1/4 of a pill and 3/4 of a pill--and/or pill dust. But if the Neurontin doesn't work and 1 mg at night is too much, it might be worth a try.

    Thanks again.

    --Laura

  15. lindasue

    lindasue New Member

    Laura,
    I just read your response to Mikie and I had no idea what myoclonus was...so I checked it out and I have a question that perhaps you can help me out with....
    I read that myoclonus is a muscle spasam and it takes me to a problem that I have had since May 2001. I remember the month it started because I kept saying, "I can't believe this has been going on since May". I happens EVERYDAY all during the day and even when I first try and go to sleep. It is maddening!!!
    Anyway, last May I started having a twitch/spasam in the right side of my face. It was mainly around my right eye, but eventually moved down to the area of the right side of my mouth. When it first started I just thought I had a twitch in my eye and it would go away. NOT! By October of 2001 I went to the MD I was going to at that time and he just said it was probably "stress" related and would go away in time. I told him it was driving me CRAZY by now and really affecting my life because I work with the public and my face would just start twitching for no reason. He said Botox would help.....I was not saftisfied so I made an appointment with a neurologist and went through the story of this "twitch" and he a an MRI done.....NOTHING (thank God, except for the fact that I still had the "twitch"). He suggested "Botox". THEN I went to an Ear, nose and throat specialist thinking maybe since he works all around the face maybe he had an answer......NOPE! Botox.....Then I went to the eye doctor, I needed a check up anyway, and he said the same thing...."sometimes this just happen's to muscles and there really isn't anything that can be done"....BOTOX again......I told them all "I don't want a band-aid, I want to know what the heck is causing this!!!"
    It has now been going on for a year and a half and I haven't had the Botox....I don't want the Botox, I want answers!!
    Laura, do you have any of this going on in your facial muscles? Could this be myoclonus? What is the test for this and.....I am seeing my doctor tomorrow morning at 10:00am. I just started going to 4 weeks ago, and I'll tell him about what is going on with my eye and face. I haven't said anything to him about it because I've just had so much pain and exhaustion with this DD kicking my butt again after almost 3 years of bliss. This new doctor is wonderful and is leaving no stone unturned with everything that is going on with me at this time. I know he would listen to me about this spasam in my face.
    Well, thanks for listening and I you or anyone out there has information regarding myoclonus of the face....please let me know....
    Warm hugs,
    Linda
  16. lindasue

    lindasue New Member

    Dear Pookie,
    I'm sorry you are suffering again. Welcome to this support group, I am really new here, but I'm always reading and posting.

    That's what happened to me.......I had ebv/cfids surface in 1997 and was down for almost 3 years. Then, I got better! Went back to work.....had a life....
    Around the first of the year I started getting the "flu" and really tired......4 weeks ago...BAM! It hit me with like a semi truck!! My ebv titer was off the board per my doctor! Then the pain has hit and I now have "full blown" fibro....quit my job and just trying to find out what will help me get through this. Just leaving the house to go to the doc. and have test after test. My sister came and got me yesterday and took me out for a while. It was nice but I really had to come home soon as the pain became unbearable while I was out. I am or rather always have been athletic and very active. I'm 53, look younger, always on the go. That's what probably brought this on again. Not enough rest and too much stress!
    Anyway........
    This support group is a pure gift from God!!
    Thank you all,
    Love,
    Linda

    [This Message was Edited on 10/04/2002]
  17. LindaH

    LindaH New Member

    My doctor put me on neurontin in June of this year. He had me start at 100 mg three times a day and after two weeks increased it to 200 mg three times a day. I stayed on it for about a month and a half and slowly decreased it because I didn't think I would be able to afford it and I had pretty bad swelling in my feet and legs. About a month aga my legs once again starting just really killing me so I decided to try it again. 100 mg three times a day. After I would take my midday dose I would have awful tremors throughout my whole body but it was beginning to help my legs and so far no swelling. The tremors seemed to get better so I upped to 200 mg three times a day. It really does seem to help my legs so I am trying to give it a good try. Right now I have the tremors again I just took my night dose about 40 minutes ago. They don't seem to be quite as bad though. Who knows if I will be able to tolerate it? Don't know if this helps or not but hope you find something to help.

    God Bless
    Linda
  18. lindasue

    lindasue New Member

  19. Lanie

    Lanie New Member

    My pcp put me on Neurontin last year and I was up to 3000mg a day. I was literally getting 2 huge bottles a month and I felt it didn't help me enough to warrant so many drugs in my system. Well, my rheumy just added it back into my drug schedule. I hate taking so many different drugs but I am willing to try anything to feel better.

    I am now on Trazedone at night for sleep, flexeril 10mg 3x a day, neurontin 800mg 3x a day, bextra 10mg 2x a day and Tylenol w/codiene for breakthru pain. Above my kitchen sink looks like a damn drug store and I still feel crappy.

    Wish I could rewind 2 1/2 years and never have left my house that stupid day I got into a car accident!
    Lanie
  20. LindaH

    LindaH New Member

    I know what you mean about your own drug store. I was also rear ended while stopped.I was at a railroad crossing. That was March 1999. I haven't felt worth crap since either. Oh to be able to rewind. Best to you and hope you find something that actually helps.

    God Bless
    LindaH