anyone on lamictal (lamotrigine)?

Discussion in 'Fibromyalgia Main Forum' started by goldilox, Nov 21, 2008.

  1. goldilox

    goldilox Member

    Hi,
    I have not posted on this message board for quite a while now - I have not been able to
    access internet but now I am happy to be back!
    I saw a psychiatrist last week that someone recommended to me and he told me to get off the
    lyrica I have been taking (75mgs) and he put me on lamictal 50 mg. He said that this would work
    alot better than the lyrica but so far I have been having alot of problems withdrawing from the lyrica. He also said to taper off ambien cr and klonopin which are the meds I was prescribed a number of years ago.
    I am finding it SO hard to go off everything - I am trying hard to be off all meds (except for the lamictal) but sleep, achiness and anxiety have come back with avengence.
    Does anyone have any advice they can share.

    Please help as I dont know what to do.

    Sue
  2. mindblower

    mindblower New Member

    Nuerontin, Lyrica and Lamictal are medications that did not work in me, but this definitely is a good path to explore for symptom relief as there are other anticonvulsant medications worth considering, one that might not work for one may work in another.

    Keppra is the latest one I've just started a trial dose of if you've seen my other posts. Also, Dr Cheney has observed through testing that those with ME/CFS, our brains, tend to be shifted toward seizure.

    This further supports the use and trial of this class of meds. in us. Then neurological conditions of many types, even brain injury based ones, often have excessive calcium influx-glutamate excitotoxicity.

    This abnormal functioning is often thought best treated by calcium channel blockers, which many anticonvulsants are. Tapering slowly off old and on to new treatments is generally the best advice, the easier way to go in the process of finding what works.

    MB
    [This Message was Edited on 11/22/2008]
  3. Janalynn

    Janalynn New Member

    Hi Sue-
    I was recently put on lamictal. Because of the slow titration I am still on the 50 mgs - I go up to 100 mgs this Friday. I have not noticed much difference except that I have headaches now and feel like I've actually got worse muscle pain. Great, huh?

    I went and saw psych. for the first time ever and this is what he scripted. I am not sure I agree with. But I'm giving it a shot.
    I have never been a depressed person, but know that I am 'situationally depressed" - lots going on right now. Too much. Too much work, too much pain, husband lost job.....

    I talked to my doctor before filling and she said to give it a shot. I have been stressed to the max and I know that THAT in itself Can cause extra pain. SO...I know that this med takes a while to get in your system and work. You have to start very slowly and work your way up. Both docs told me, true effects may not kick in until 200 mgs. Because of potentially deadly rash, (rare) is the reason for slow titration.

    From what I've read about it (tons because I was VERY reluctant to take it) using it along with something else has good benefits. I am still on low dose of Lexapro. I thought I was to stop that but doc said NO.

    I think most side effects stop when you raise your dose - did doc have a plan to raise your dose or are you to stay at 50 mgs?
  4. I'm sorry you'd posted this several times... I've been feeling soooo lousy so long, lately, it feels like I continually 'reach NEW, new, 'lows'... (ever wonder just HOW LOWWWWW can u go... without death?? honestly, though?) Winter time is definitely ROUGH, especially as screwy as the last 3 or so had been in Indiana, and, even though this year's temperatures, are more like our winters, are 'supposed' to be.. they are still 'warmer than normal' for a few days, raining on some... and then dipping below freezing! UGH!

    Anyhow, also, I'm a little more than 'miffed' at the board still, as I do tend to ramble on quite a bit (miffed at my 'new' brain, too) for that

    but, I try to give as much help as I can offer to posters, with concerns, as, I know I* always appreciate other's time & considerations.

    Having said that, I can't even COUNT the number of posts, I have thought out, rambled on, re-read to try & shorten them some, then gone to post, (sometimes 30 mins or longer!), only to get a blank white screen after hitting 'submit' !!!!!

    Even now, I HATE having to do this, but*, I've learned to type the post *here* first, THEN, open my e-mail, cut & paste my post *there* & save it as a 'draft'... then try cutting & pasting it here, (GRRR!) but, at least, if it doesn't work... I just quit for that time, being, then try it again a different day.

    NOW! (whew) I have a few questions for you first, (I have about 2 hrs to shower, dress up, & get to hubby's grandma's house for her thanksgiving dinner!)

    But, I PROMISE that within the next day or two, I will do my best, to answer you, as best I can, regarding Lamictal/Lamotrigine, as, I too, just began it, about (?) 7-8 wks ago, myself..

    1.) (sorry if I *Missed* it, in your post,) but, *what* are you taking it for? is it nerve pain, sleep problems (taking you off lyrica was one thing, but, the klonopin & ambien, also?)

    2.) what other medications will you be on, besides the lamictal (if you wean off ambien, klonopin, AND Lyrica...)

    3.) how are you doing still, on your current dose? (which is??)

    I'm on 100mgs, have been either 2-3 wks.. BUT, of course, we all have to consider our *own* bodies, our tolerance, and, our own other* medications being taken..

    I have noticed, that it certainly is NOT helping my brain function, not at ALL,

    It *seemed* to make my insomnia even worse than it normally is,

    It IS serving it's purpose, (thank GOD!!!) for my excrutiating nerve pain (facial nerve condition, called "trigeminal Neuralgia)

    It has NOT seemed to effect my balance, as a lot of anti-convulsants do, ---

    Two drugs, though, (i just weaned down to one 4mg Gabitril, hoping to QUIT it,)

    Gabitril, AND lamictal- can cause ACNE! (GRR!!)... while, I'm absolutely more prone anyways, (naturally oily skin, all my life, as well as polycystic ovary syndrome, and endometriosis)...

    On anymore than 8mgs of gabitril, I began having appetite issues, *aggression*, abnormal thoughts, insomnia, and massive ACNE.

    The acne is 'better' but.. that's not to say a whole lot- I guess the Lamictal is trying like heck to continue it... both do list acne as side effects..

    Anyways- I'm on 4mgs Gabitril, a total of 2mgs clonazepam (Klonopin), 25-50mgs a day of atenolol, 100mgs Lamictal (generic), and, 80mgs of baclofen a day.

    I'm on a 'trial run' of Ultram ER 200mgs, and have Provigil 200mgs, that I take... "as needed"...

    I take melatonin at night for sleep, and other OTC medications, but, I *think* I covered my scripts..

    So, I'll try to keep up on this post, and be of any help.

    I must be some sort of 'oddity'... after convulsion like thrashing, from 300mgs of Lyrica, I was told to STOP IT, immediately, NO weaning, and... I didn't notice at all, except that I stopped flailing like crazy while at rest...

    I'm worried about your dose(s) at lamictal, since you are having a hard time on 75mgs of lamictal... I believe I was started on 75mgs twice a day of lyrica- may have been 50, twice a day, but, I was on it a *total* of 3 months, so I know I was quickly on 150mgs per day, then 300mgs..

    Best of luck.

    Laura
  5. goldilox

    goldilox Member

    Thankyou for replying - your email was a great help.
  6. goldilox

    goldilox Member

    Actually my dosage of lamictal is 25 mgs for the first 10 days and then on 50 mgs. Its only been less than a week so still on 25mgs.
    I'm not sure whether the doc plans to up the dosage to 100 or not.
    What do you think?
  7. putting you on the Lamictal *for* ? was it nerve pain, sleep, or??

    My neurologist (thank goodness) had samples of Lamictal in his office- it is actually the five week 'starter pack', and, actually, for 2 weeks* I was on 25 mgs, *then 2 weeks on 50mgs, and then on week five, you take one 100mg pill..

    So, you may want to wait 14 days, rather than 10, since, that is how the starter pack was designed, and also had written instructions above each week...

    But, it may not matter, both dosages (25, 50mgs,) are small doses, but, see how you feel on the 25...

    I have been on many anti-convulsants over the last 5+ years, and for the most part, have a high tolerance as far as dosages,

    Not from the 'get go', normally, of course, in the beginning, i'm drowsy, nauseated, off balance, etc... (BRAINFOG- ALWAYS, even on the ones that did NOT make me drowsy)

    But, even I remember telling my husband, on my last day of 50mgs,

    "oh man, I'm supposed to start on 100mgs tomorrow, I'm not too sure if my body is ready to go up again on the dosage..."

    But, with the starter pack- I had no choice, lol, I had to take a pill the next day, and the only ones I had left were the week's worth of 100mgs... I wouldn't have even been able to get my neuro to call more 50mgs in for me in time, had I chose to do that..

    To be honest, my mind is THAT BAD, right now, that I can't even *remember* exactly WHY I wasn't 'ready' to go to 100mgs yet..

    I can't believe that! How frustrating (embarassing!) that I cannot even remember- it may have been- wait! I do know now! LOL

    It WAS because of my *brain* problems. It's hard, because, I have medication I take once daily, several I take *twice* daily, and the biggest problem & concern I was having, was my Baclofen:

    I take two 10mg pills of Baclofen, FOUR times a day, and I was getting SOOO confused still on the 50mgs, about which dose I had, or had NOT taken, of my baclofen, I could not remember to take it on time, nor whether it was my 2nd or 3rd dose, or my 3rd or 4th dose.

    I also forgot to feed my poor puppy doggies promptly at 9pm.
    It was 9:35pm, but, they were snoozing away (not normal for them either, lol- cold weather I guess)... and, at first, when I saw that it was 9:35pm- I started* to have a thought-

    Then it floated away for a second- then I thought- Did I already* feed them?????

    Thank goodness I quickly (matter of a second or so) decided correctly, that I had not, and then I fed them- yes, as far as feeding pups, no harm, no foul, 35mins late... it happens sometimes..

    But, when it came to such huge confusion of my medications, that's definitely not ok, as well as things like, spraying cleaner in the tub, or toilet bowl..... then forgetting completely- until I would get up sometimes hours later, to go to the bathroom, and seeing dried on cleaner. (UGH!!!- not that I'm able to clean anyhow, but, I try very hard to help hubby whenever I can,)

    But, I'm too absent-minded, & accident prone to do a lot of things..

    Also, I don't drive much anyhow, but, sometimes I have to, and...

    I still do NOT drive at night (have always had 'night blindness', worse after Prelex & Lasik eye surgeries,)

    But, twice, I've had to drive my sister just acrossed town, and.. it did not feel good, to put it mildly..

    It's bad enough in our car, but, hubby takes it to work, since it's newer, safer, better gas milage, etc..

    I will NOT drive our truck- certainly not at night, and, I'm still not sure about daytime, either.

    But, I have only been on this 100mgs for ? 2wks or so, maybe these brain issues will pass soon..

    If your doc does *not* plan to raise your dosage past 50mgs, is Lamictal the only medication you will be on then?

    Since he's weaning you off Lyrica, Klonopin, AND Ambien??

    (I'm with you on the trying like heck to get on as few medications as possible... I know I once got down to only taking my heart medication, clonazepam, and (???) one other medication, I was soo thrilled, but, I was spending more money on weekly vitamin IV's, integrative medicine visits (all out of pocket), & other things (special food diet)...

    I still *emotionally* felt better, knowing I had so much less toxins in my system daily- and that my liver was probably shouting hallelujah! at me... but,

    *sigh* My health issues force me to take what I'm on... I still try to wean down on some of them at times.. winter isn't the time though, for clonazepam, baclofen, or the anticonvulsant(s)... All of those are used for different issues, but, all three are also used together* for my Trigeminal Neuralgia pain.

    Again, if you can tell me what your doc is putting you on Lamictal for, and if that will be your only med, after weaning off the others, etc...

    I'll help in any way I can, with any questions, but, of course, I wouldn't go against drs advice, nor gauge your own specific treatment off of others, but, I know you know that...

  8. JaneInMelbourne

    JaneInMelbourne New Member

    Hi Sue

    I just replied to your post asking about doctors in Melbourne. The doctor I mentioned, Dr Lewis, put me on lamictal after checking for sodium channelopathy. He finds that lamictal works well for people who have this problem. Lamictal is fantastic for me, but if you don't have the sodium channelopathy it may not work, or may even make you feel worse.

    If you're wanting to stop meds, I guess I would stop one at a time, and do it very very slowly. I prefer to make only one change at a time, firstly because it puts less stress on your body (which may be already stressed out), and secondly, because if you change 2 things at the same time you cannot know what is causing your reaction.

    Good luck.

    Jane
  9. simonedb

    simonedb Member

    hw did he check you for that jane?
  10. gapsych

    gapsych New Member


    Would you mind explaining what the sodium channelopathy is?

    When I was on Trileptal which basically does the same thing, it really helped however, over the course of a year my sodium was low, then crashed and I was put in the hospital. It was from the Trileptal.

    Once I was taken off the Trileptal my sodium was back to normal in about ten days and has been normal since then.

    I was put on Lamectal to help boost my AD as I have a history of ADs eventually stop working. I am on 100 mgs. It has really helped me stay on Zoloft and also evened out my moods.

    I do remember my doctor telling me that if you forget a dosage that you have to go back and start over. However, that may have been at the low doses when you first start on Lamectal.

    I would appreciate any information on this.

    Thanks.

    gap
    [This Message was Edited on 11/23/2008]
  11. Janalynn

    Janalynn New Member

    Lamictal is supposed to be great also for those people who don't have good luck with ADs. Because I had the opposite effect from Wellbutrin and Cymbalta - they both made me extremely depressed, my doc thought Lam. would be a good fit for me. We'll see.

    BTW- My paperwork says if you miss three doses you have to start over (25 mgs)
    That seems to be one of the drawbacks of this med, that it takes a while to get in your system and work to it's full potential - because of the slow titration. BUT that is for depression issues not the others that have been mentioned.

    Hope others give you the info you're looking for. =)

    ~Janalynn

  12. gapsych

    gapsych New Member


    Thanks for the information.

    So I wasn't misremembering the doctor saying that if you miss a dose you have to start over.

    Sometimes with this fibro fog, you wonder what tricks your mind has played on you!!

    Interesting, when I was on Wellbutrin and Cymbalta, I ended up with "manic like" behavior which disapppeared after being put back on Zoloft. I can take the SSRIs but not the SSNRIs.


    Take care and thanks.

    ga
  13. mhc

    mhc New Member

    I instantly developed hives, EXTREME nausea for the 4 days (one on, one off, x2) that I took it so do be aware that they can happen really quickly.
    I am actually getting ready to switch to Pristiq (who names these things? sounds like a low end cosmetic line) as Cymbalta, after 3+ years is no longer working.
    Hopefully it will prove helpful.
  14. saffrondreams

    saffrondreams New Member

    It has helped with my neuropathic pain. It has a lot of uses though, for seizures, etc. I am on it and two other anti-depressants. It makes you a little sleepy, not much though and I take it at night. I am also on ambien, but I take a half tablet because I will sleep all the next day and then eat during the times I wake up. I hope this helps

    Saffy
  15. Janalynn

    Janalynn New Member

    You cracked me up!! (not the hives part - the cosmetic line thing)
    Yeah, you apparently are one of the ones who get the bad reaction. - that's why they make you go slooooowly with this med.

    When my doc said you can get a rash and I asked what it would look like - he said 'oh you won't have to ask or look for it".
  16. dani78xo

    dani78xo New Member

    50 mg of Lamictal is an extremely low dose; usually people are on 500 or so, though the majority of them are on it for epilepsy. I'm on it for migraines. It's worked really well for me, but a psychiatrist I was seeing a while back tried to use it for my anxiety, which didn't work. It's usually just used for bi-polar disorder and epilepsy.

    I'm TECHNICALLY epileptic, according to my EEG, but I've never had a seizure, so my neuroendocrinologist is loathe to actually diagnose me as such. I'm guessing this is why it works so well for my migraines. As for any other symptoms I have from FM or something else, it doesn't do anything for my anxiety or pain. I am only on 200 mg, though, but increasing gradually. It's one of those medications that's usually well-tolerated if increased slowly.

    It does, however, help me get to sleep. If I don't take it, I'll be up until 4 in the morning (and it's muchhh nicer being able to fall asleep with lamictal as opposed to lunesta, which always gives me a hangover feeling the next morning).
  17. singingirl

    singingirl New Member

    My daugher is on Lamictal for bipolar. It makes her hyper and she CANT sleep. Even the seroquel that is suppose to make her sleep doesn't, and she takes the Lamictal as soon as she gets up in the morning. I didn't know it was used for fibro too