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Lamotrigine not working, advice anyone?
Thu, 03/12/2015 - 06:35Hi everyone
My partner was diagnosed with Epilepsy 13 months ago so were still quite new to this - he has what they call 'unexplained epilepsy' as all of his scans, ECG's, EEGs etc all came back normal and there is no damage anywhere. It literally came on out of nowhere. He also seems to fit mostly 'upon waking' - so he'll get up in the morning and stand up out of bed and shorlty after he'll fit. It has happened a couple of times in the afternoon/evening but mainly upon waking.
He's been on Lamotrigine since he was first diagnosed and in the 13 months since his first fit/diagnosis he's now had a total of 11 fits.
He has full on tonic clonic (grand mal) seizures where he loses consiousness, falls to the floor and it takes him a good 20-30 mins to come around after he's had a fit.
When he was first diagnosed he was fitting ever 3-4 months, however lately he's had a fit every month for 3 months in a row, his most recent one he actually had 2 fits 24 hours apart.
My concern is that Lamotrigine isnt working for him, its pretty clear that the more Lamotrigine they are asking him to take, the more fits he's having as his dose is increased after every fit. It definately seems to be getting worse not better and he's now nearly at the maximim dose of 450mg of Lamotrigine a day
His consultant did say if he gets up to the max and still fits then he'll introduce a second drug to work along side the Lamotrigine but i am just not convinced that this is the drug for him at all
Has anyone had any simular experiences of Lamotrigine? if so did they end up taking you off it and trying a new one?
Is it reasonable to expect his fits to be better or under control when its been 13 months or are we expecting too much?
he's still working and the fits getting worse and more frequent is really starting to effect his job and our life and money etc so its really taking over
any advise would be welcome
thanks :)
WelcomeLamotrigine is a good
Submitted by just_joe on Thu, 2015-03-12 - 19:26
WelcomeLamotrigine is a good medication. As are most medicatins for seizures. Unexplained epilepsy???? What kind of doctor diagnosed his epilepsy. The ECG is a tests used for the heart. The EEG is one used for seizures since they come from the central nervoius system (the brain). Now a person cna have epilepsy and all their tests come back normal. If the doctor was his regular doctor then he may not know about all the other nedications there are for epilepsy. If the doctor was a neurologist he too may not know everything since neurologists work on many different ailments that all stem from the central nervious system.I had 20-25 different EEG's all come back normal but I still had seizures. I went thru a serise of tests and they too came back normal. The last test was another EEG. Well I was tired and during that EEG I fll asleep. In that EEG they found abnormalities (electrical impulses going off wrong in the brain). The neurologists then went back to the MRI of the 1960's and looked closer at the area in the brain the impulses came from. By looking closer they found scar tissue. That scar tissue was from a hemorage to the brain cause by a blow to my head. SO a simple EEG can show nothing. The EEG also only reads electrical impulsed to a certai n debth. Meaning the impulse could be comming from a deeper area of the brain. If he was diagnosed by his regular doctor he needs to see a neurologist that specialized in epilepsy. Now as for medications and the highest dosage. With me I have almost always had to have the highest dosages used. That said I have also needed another medication added to that one to control my seizures. I hope this helps Joe