Hi, until recently I've been using 600mg of Tegretol with 50mg of Lamotrigine. This has proved to be very successful in removing my longstanding tooth sensitivity problem. So much so that my mouth felt almost normal for the first time since I was diagnosed.
For three days. Yep, a whole three days, before I had to give in and drop the dose back down to 25mg, with a view to coming off it completely. And all this because of blinding sick headaches that became a permanent day-long feature. Every day. Inches away from migraines, these headaches were completely debilitating. But hey! I lost the cursed tooth sensitivity!
I would really, really like to hang onto Lamotrigine and its benefits. I was supposed to go up to 100mg, but couldn't even make it to half that. My question is this, has anyone else experienced this? Did you find any way to get round Lamotrigine's headaches? If so, how did you do it?
Even if you are a failed Lamotrigine user I'd still love to hear from you, especially if you found another drug to replace it that you think worked as well - minus the cursed headaches!
I’ve taken Lamotrogine for about 5 years now … 400 mgs a day. i had heard all kinds of scary stories about it but never had any adverse effects from taking it and it has worked
Wonderfully to keep pain at bay until now when absolutely nothing is working.
I guess I’m telling you this because drugs work so differently for everyone. Maybe going through the excruciating pain you’re feeling now isn’t worth it in the long run and your doctor needs to put you on something else.
Hi Karen, 400mg eh? That's scary! I got almost-migraines at 50mg!
But you're right, of course. I went to the doctors this afternoon to discuss it and he agreed with me that it might be worth persevering with if I found it helped the sensitivity, which it did. He said what I'd read elsewhere, that the side effects tend to die down with time, so, believe or not, I'm going on a kid's version of the drug, which has 5mg tablets. My doc's exact words were "The neurologist will laugh at us". I told him I didn't care if she called me a pussy, if we can get the drug to work for me, that will be great. So I'm going up in 10mg increments in two-weekly intervals. Against your 400mg dose that makes me look even more lily-livered! But hey! Those headaches were bad. I have one right now, in fact (I'm managing to cope on my opening 25mg dose), but not as severe.
Anyway, we'll see how it goes. Fingers crossed...........
Karen Brown said:
I've taken Lamotrogine for about 5 years now ... 400 mgs a day. i had heard all kinds of scary stories about it but never had any adverse effects from taking it and it has worked Wonderfully to keep pain at bay until now when absolutely nothing is working.
I guess I'm telling you this because drugs work so differently for everyone. Maybe going through the excruciating pain you're feeling now isn't worth it in the long run and your doctor needs to put you on something else.
I sorry for the severe headaches you are having on top of TN. I was on Lamotrigine along with Trileptal and it was the first medication that I took where it made the TN pain bearable and something I could live with. I started at 25 mg and went to 400 mg. I began to get almost daily episodes where I could barely see and was vomiting. It was the worst feeling ever as I would go from feeling fine to dizzy, hardly able to see, and would start vomiting. This went on for a month before I contacted my doctor. He was concerned, so he had me come done to 300 mg. The pain relief was not nearly as good and I was still having these episodes. It came to the point that even though it was providing great pain relief, the vision problems, dizziness, and vomiting became too much. I hope you are able to find something to help with the headaches and it can be an effective medication.
Hi Beth, thanks for sharing that. It was really helpful to know someone else has had problems with it, albeit at not such a pansy dose as me!
I've been trying to soldier on with it, but this is 3 weeks now and I'm still getting these day long migraines with it. They're relentless and really debilitating. There's so many triggers, I can't avoid them: walking, doing anything very active (like cleaning the house), getting hungry. That's not over-hungry, just ordinary, 4 hour apart hungry. I don't even know I am hungry, the first I know of it is I start to feel really nauseous and the headache gets worse and worse, and that's about 3 hours after I've eaten. Then there's the bright light triggers, and that's anything from outdoors, even on a grey day, to supermarket lighting, and even my living room light because it has a higher watt bulb. It's very hard to function with such everyday things turning background pain into severe pain in fifteen minutes. Once the pain has escalated, it's very hard to get it to come back down. It's remarkably tiring too. My skin is actually slightly bruised and tender around my eye socket from me pressing it all the time!
Anyway, I'm thinking of letting the last of the Lamotrigine go tonight. I'm absolutely dreading the return of even worse sensitivity (it's still present at 25mg), and frightened of the med loss bringing on electric shocks, which it usually does if you drop meds, until it levels out again. But if it needs to be done... Truthfully, I'll just be glad to get rid of these bloody awful grinding headaches and being able to think straight again.
It's one thing I've learned already with TN, you should be very careful trying out drugs, because every time you take up and drop another one, it lessens the effectiveness of the dose you are already on. I know now why people who have had this illness a long time find that meds don't work for them after a while, but what can you do? You've got to try and find that magic cocktail!
Beth said:
Hi,
I sorry for the severe headaches you are having on top of TN. I was on Lamotrigine along with Trileptal and it was the first medication that I took where it made the TN pain bearable and something I could live with. I started at 25 mg and went to 400 mg. I began to get almost daily episodes where I could barely see and was vomiting. It was the worst feeling ever as I would go from feeling fine to dizzy, hardly able to see, and would start vomiting. This went on for a month before I contacted my doctor. He was concerned, so he had me come done to 300 mg. The pain relief was not nearly as good and I was still having these episodes. It came to the point that even though it was providing great pain relief, the vision problems, dizziness, and vomiting became too much. I hope you are able to find something to help with the headaches and it can be an effective medication.
I was on Lamotrigine 50mg once a day for 2 weeks, with no side effects at all - actually felt like it was helping a little with the pain (I'm also taking 1200mg Gabapentin 3x daily) - but lo and behold, when I tried to increase it to 50mg twice a day (like I was suppose to), I had this horrible, itchy, yeast like rash that popped out from the top of my thighs to the top of my head! Even my ears were itchy. So after a steroid pack and 15 days of Diflucan (yes, that's 15! It's usually just a 1 pill dose, but no, that wasn't enough for my rash!) I'm down to only the Gabapentin (which doesn't seem to really get the pain gone) - today I had horrible break through pain and can't seem to get ahead of it. So my Dr is calling me in Norco to get me through till I see him tomorrow.
I was on Lamatrogine (50mg 2x a day) for a few months in a bid to see if it would help with the headaches and general Type 2 TN symptoms. It didn't help with either. :-( I'm back on the Pregabalin (300mg dose) and on Indometacin for the headaches (and that seems to help a little bit). Have to say that Lamatrogine didn't help with anything at all and the pain was horrible. But as someone else said, it works differently for everyone. Winter is coming now and I have to say that I'm scared that with the weather change the dosage of pregabalin that I'm on will go up and I'll be back in zombieland. :-(
Hi Kristykins, thanks for sharing that. Yes, I found 50mg of Lamotrigine a day really good for my tooth 'sensitivity'. I actually felt vaguely normal for all of three days, if you ignore the migraines, that is! Although I do wonder sometimes if there was some kind of analgesic effect coming from the pain itself, i.e. the migraines were so bad my body cut off the tooth pain and concentrated my attentions on the serious brain pain. I know I've experienced something similar in the past with other illnesses/injuries. But still, I'd like to try and get back to 50mg of Lamotrigine and see if it was real or not. I'm due to start my kid's dose of 10mg tomorrow when my pharmacist gets the drugs in. They had to order them. Not a chemist in Edinburgh keeps them - shows you how seldom used they are! Ah well, rare disease and obscure medication - it seems only right!
Kristykins said:
I was on Lamotrigine 50mg once a day for 2 weeks, with no side effects at all - actually felt like it was helping a little with the pain (I’m also taking 1200mg Gabapentin 3x daily) - but lo and behold, when I tried to increase it to 50mg twice a day (like I was suppose to), I had this horrible, itchy, yeast like rash that popped out from the top of my thighs to the top of my head! Even my ears were itchy. So after a steroid pack and 15 days of Diflucan (yes, that’s 15! It’s usually just a 1 pill dose, but no, that wasn’t enough for my rash!) I’m down to only the Gabapentin (which doesn’t seem to really get the pain gone) - today I had horrible break through pain and can’t seem to get ahead of it. So my Dr is calling me in Norco to get me through till I see him tomorrow.
Hi Marcie, yeah, I was amazed that they prescribe Lamotrigine for migraines and it actually caused headaches in me (and still does!). I see you are a TN2 sufferer. TN2s seem to do better on low(ish) doses of anti-convulsants, combined with anti-depressants and some opiates thrown in. But with TN1s, they seem to need cocktails of various (sometimes scarily high) doses of anti-convulsants while opiates and OTC drugs are no bloody use to them whatsoever. But even within these broad strokes there is tremendous variations. I've never met a disease with so many different symptoms and variables in its treatment. Other than the fact we all have it in our heads, it's about the only thing we have in common! I've met people on here who have TN2 whose symptoms are much more like mine, a classic TN1, than other TN1 sufferers are.
Funny you should say that about winter though. I am absolutely dreading it. I got my TN at the end of spring so the weather was already better, with less cold winds, but even then they were a (literal) pain. My TN really doesn't like wind in my mouth at all. I am desperate to get my meds to some kind of happy place before it starts so that I am not suffering through it and dreading to go out. This is where the old pros have an advantage over newbies like me - they know what to expect! Still, chin up and hope for the best. Marcie said:
Hi,
I was on Lamatrogine (50mg 2x a day) for a few months in a bid to see if it would help with the headaches and general Type 2 TN symptoms. It didn't help with either. :-( I'm back on the Pregabalin (300mg dose) and on Indometacin for the headaches (and that seems to help a little bit). Have to say that Lamatrogine didn't help with anything at all and the pain was horrible. But as someone else said, it works differently for everyone. Winter is coming now and I have to say that I'm scared that with the weather change the dosage of pregabalin that I'm on will go up and I'll be back in zombieland. :-(