Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Lamotrigine

Discussion in 'General Treatment' started by sleepy237, Jul 16, 2011.

  1. sleepy237

    sleepy237 Senior Member

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    I have a pack of Lamotrigine pills which I read have some evidence acting against one of herpes viruses. However,, due to sensitivities I worry about this rash that seems to be prevalent related to this medication. Wondered if anyone knew how common the rash is and also if they have used it and felt it useful. Thanks. Best wishes ~Sleepy
     
  2. taniaaust1

    taniaaust1

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    I was on Lamotrigine and did get a rash from meds which spread all over my chest so I had to stop taking it (I'd started taking this drug at the same time as I also started taking another drug, thou one I was taking at night and the other drug in the morning.. so which one caused the rash I dont know but it is likely to have been the lamotrigine). I only lasted a few days on it and it caused me other bad side effects too.

    I know it did cause me side effects as I had different side effects happening at different times of day according to which drug I had taken (the rash thou didnt vary with a time of day, it stayed and was just getting worst and worst.. I developed the rash on the second or third day after I started the meds) so even without the rash, I wouldnt have been able to stay on it.

    (I'll try to do a search of my old post here on it as I cant now remember what side effects I got with the Lamotrigine and which were from the other drug).

    Best luck with that drug!

    ps I just tried to find my old post on that to find out my other side effects from it but only found this one which mentions I got a rash with it http://forums.phoenixrising.me/show...ressants-Times-UK/page2&highlight=Lamotrigine and one of my blogs on treatments i tried.. i just have written in there just that it made me far worst.

    (I guess I must of done a more detailed post on it at another ME/CFS site as I know I had one.. I also went almost psychotic on it (or that nearly psychotic may of been side effect of the other drug).. wanted to rip peoples flesh and see them streaming with blood.. it was like some kind of blood lust side effect from the drugs.. (when I hadnt had any mental health issue going on before I got put on it for ME/CFS ).

    The trial of Celexa and Lamitrigine (both in very low dose) was the worst drug trial Ive ever tried so far when it comes to drugs and their side effects. (A doctor who didnt believe in ME/CFS had me trial those). Take care Sleepy.. Im concerned a doctor wants you to trial it and on his reasons why.

    I have no idea how prevelent getting a rash with it is (the rash I got was quite a bad one) so can only speak of my own experience of breaking out in a spreading chest rash with it.
     
  3. sleepy237

    sleepy237 Senior Member

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    Tania i was prescribed it to calm down nervous system activity but i found the link to it being useful for herpes virus online. I also saw another CFS patient on PR being rxed by a good doctor but I have had two fully body allergy itchings from two drugs in the last three months and I am very careful. I also saw Lamotrigine is prone to giving that life threatenng rash and I guess it scared me off. Thanks for your input. Best wishes hun. ~Sleepy
     
  4. leaves

    leaves Senior Member

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    im considering trying this too,
    see also from Maija's book:
    lamotrigine (Lamictal, Elmendos)

    Lamotrigine primarily works by binding to voltagesensitive sodi-
    um channels and blocking excess glutamate release. It also binds to the
    sigma receptors to some extent and weakly antagonizes the 5HT3 sero-
    tonin receptors. It is a common treatment for bipolar disorder, especially
    if depression predominates. It can be used to treat chronic pain, especi-
    ally neuropathic pain, and may be useful in some refractory cases.
    Lamotrigine improves the quality of sleep, especially by increasing the
    amount of REM sleep.36
    Perhaps owing to these multiple modes of action lamotrigine is a
    medication that improves the condition of many CFS/ME patients. At
    best the patient can reach almost full remission. The dose used to treat
    CFS/ME varies from the 2550 mg used by Jay Goldstein up to 300
    400 mg a day. Jacob Teitelbaum feels that doses below 200 mg a day
    are not effective.37 Lamotrigine may be useful in PTSD38 and migraine,
    especially migraine with aura.39 It also has some antiviral action against
    HHV6.40
    When using lamotrigine it is important to consider the possibility of
    lifethreatening rash (StevensJohnson syndrome) and begin the treat-
    ment with a very low dose which is slowly titrated up. One problem is
    that up to 1/10 of patients get some kind of a rash from lamotrigine,
    which is usually a harmless one without fever and other symptoms, but
    often the medication is discontinued anyway. Most patients can continue
    taking the drug if it stopped until the rash has healed and then reintrodu-
    ced even more slowly.
    Headache, dizziness and vision impairment are common side
    effects when using larger doses. Nervousness, nausea, stomach upset,
    drowsiness, insomnia, muscle aches and tremor are also seen fairly
    often. Many other drugs can markedly either slow down or speed up the
    metabolism of lamotrigine so one has to be careful when trying new
    drugs, especially other anticonvulsants, when on lamotrigine. Acetami-
    nophen (paracetamol) should not be used with lamotrigine.
    Lamotrigine is widely available and the smallest tablets only con-
    tain 5 mg of the drug. Different starting kits are also available.
     
  5. sleepy237

    sleepy237 Senior Member

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    Thanks Leaves!
     
  6. sleepy237

    sleepy237 Senior Member

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    Actually, I took paracetamol (cocodamol) while i tried lamotrigine and i had temple spasms so maybe it wasnt the lamotrigine but the codeine combo. Interesting thanks.
     
  7. sleepy237

    sleepy237 Senior Member

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    BTW of the two pills i did try 25mg i had lucid dreaming/racy thoughts in sleep.
     
  8. taniaaust1

    taniaaust1

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    I remembered when I saw this that it did that too me too. It was like it made my brain far more active at night while actually asleep.. my brain didnt stop. I was waking up feeling like my brain wasnt getting rest while asleep... all night intense vivid dreams one after another.

    Ive no idea if such side effects end up wearing off or not as I didnt stay on it long enough (due to the spreading rash) to know
    ......

    Very interesting leaves.
     
  9. sleepy237

    sleepy237 Senior Member

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    Thoughts please. I have been taking Lamotrigine 5 days starting 12.5mg last two at 25mg. I have been experiencing intense itching in ALL areas & burning pain in the skin. I have researched thoroughly on THE RASH and it seems pretty rare 8/1000000. But at the same time it mentions burning preceding a rash - get medical advice. But I have no rash and I also have symptoms of burning pain intermittently with illness so I am wondering if it is acting on something that might induce that. I will speak to my doctor tomorrow for advice but I am reluctant to just stop because I have no rash and I am also sensitive to all medications anyway and thinking maybe my body can desensitise. It's benefits include a restful sleep and I am waking up feeling somewhat better. I have been following the pill up with an antihistamine which acts on the itch and because I see subtle benefits I am reluctant to stop taking it if it isn't doing me more harm than the usual toxicity reactions from CFS. I think it could be beneficial but I am not sure. I hate meds at best but there comes a point where maybe perseverance is what;s needed to get through the initial reactions. I don't know maybe I am being stupidly stubborn.
     
  10. leaves

    leaves Senior Member

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    I think this is really something you should discuss with your doctor, just notify him/her about your symptoms. From what i know about this drug it is key to build up VERY slowly. you seem to go a bit too fast. Please keep us posted, I want to try this medicine as well so your experiences are very valuable to me!
     
  11. sleepy237

    sleepy237 Senior Member

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    Thanks Leaves was counting on your reply :) I was presribed it to take at 25mg first but because I am sensitive was my choice to half it. I think because no rash it might be nerve irritation but I will certainly discuss with dr tomorrow. As I said I feel fast benefits and I am reluctant but also watchful. Thanks ~Sleepy
     
  12. leaves

    leaves Senior Member

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    i think there are starter packages available, ask your doc, you may need to increase in as small increments as 5mg, PWME are just different than normal folks, same for LDN increase only if side effects are stabilized
     
  13. sunwillow

    sunwillow

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    I have been on lamotrigine 50 mg for about a year now and find that it is helpful for me It helps balance my depression and mood. I have had no side effects from it.
     
  14. leaves

    leaves Senior Member

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    Only helps for your mood? I dont have depression I was hoping it would help the ME. Do you have ME?
     
  15. InvertedTree

    InvertedTree Senior Member

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    There is some research out there that suggests lamictal (lamotrigine) has an effect on HHV-6.

    I've been on Lamictal for over a year and have found it helpful I'm on 150mg.

    I agree with leaves that you are titrating up too fast. Doctor's tend to not understand that we are at higher risk for side effects. I started at 12.5 for 2 weeks, then 25mg for 2 weeks and so on. It took awhile to build up to my therapeutic dose (everyone's is different) but it was worth it.

    Maybe call your doctor tomorrow and if it were me, I would reduce the dose back down to 12.5.
     
  16. sleepy237

    sleepy237 Senior Member

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    I am discontinuing due to hypersensitivity.
     
  17. leaves

    leaves Senior Member

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    I will be starting tmw, 25 mg, wish me luck :)

    (I will probably take half, 12.5 at first)
     
  18. leaves

    leaves Senior Member

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    hmm I am now at 50 mg, no rashes, no regression. This is too low a dose to see if it works yet, HOWEVER I now have more myclonic jerks/seazures or whatever it is: I "jump" in the bed in the middle of the night. That is a known side effect of lamictal and potentially dangerous, so I contacted my doc. We'll see if the experiment ends here.
     
  19. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    I had very good luck with this drug, starting in 1998. I did get some skin issues from going up on it too fast (much faster than the very slow dose that's recommended now). It was very helpful in terms of controlling neurological issues that I now think were the result of toxic exposures, and it may have helped my fibro pain as well. Possibly it also helped with viruses, but I'm not sure about that.

    I took it for over a decade and am glad that I did, at 300 mg a day. I've stopped now (it doesn't seem to be necessary as I've moved toward recovery), but I would start on it again right away if it felt like I needed it.

    Of course, this isn't necessarily what others will experience on the drug.
     
  20. leaves

    leaves Senior Member

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    Thanks Slayadragon! What neuro symptoms may I ask? did you notice any myclonic jerks on it, or other side effects?
     

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