My 15 year old daughter is on 175mg Lamotrigine twice daily & 750mg Keppra twice daily.
She has been on Lamotrigine for 6 years but has only just reached the optimum dose of Keppra, during her increase of Keppra and since reaching the target dose, she has been having seizures more frequently and they are lasting longer as well. The medication doesn't seam to be helping, it seams to be making things worse. Her seizures always start with an absence followed by tonic clonic. Anyone else had experience of medication hindering rather than helping?
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lightfamily
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I do apologise for replying, as it's become obvious this forum is little used! But ?
Relatively speaking, at 52yr's, have a science based background (Nb. Nothing more than BSc, mild science). In the 6yrs have experienced seizures, have dutifully collated data, day in and out. Am fortunate in only experiencing seizures on a precise periodic basis.
In short? NHS approach is rather similar to treating an alcoholic. If you give that alcoholic a glass of vodka a day, increasing the dose as the alcoholic becomes tolerant to the chemicals involved, that alcoholic will never experience issues (Nb, Other than becoming a brain deadened, physically damaged human being. This is accepted as the medical norm)
Personally I'd always been exceptionally fit and able, with the intelligence, education and ability to serve at a decent level (Nb. @ 52yr's, last post, Senior Officer Local Gvt). Have been seriously harmed by the accepted medical norm.
I fully understand that medical professionals do not remotely, have the time to gain the insight on the 50,000 medical conditions they may be dealing with (Nb. Best friend as a teenager? Now a Dr). And the priority in many cases, will always go those dying in horrific levels of pain and/or about to die shortly. But fully understand that a "Dr", who may have had a couple of Hr's tutorial about epilepsy as a 19yr old, knows bugger all about the condition and/or the medications involved. Has been pitiful, to recognise a GP at the local practice, was ashamed/embarrassed, more than intelligent enough to recognise that she was unable to counter the info offered by myself.
I'd suggest you collate information about your daughters condition/experience/effect of medications, take note of medical opinion, but rely on your true knowledge of the condition, to help your daughter (Nb, It took over 4yr's for Dr's to even remotely accept, that I only experience seizures at a typical 34 day interval. How did the NHS, diagnosing me via an ad hoc phone call to an A & E Unit, with no contact with myself, fail to recognise basic, physiological effects ?) At worst, have had one incident at 32 days, am aware of issues resulting in seizures being delayed to a typical 40-41 day interval (Nb. Sans AED's).
Sorry to hear your daughter is having more seizures. This can happen as an affect of some epilepsy medicines. It would be best to talk to her epilepsy specialist or epilepsy nurse for guidance.
Sorry to hear the keppra is making things worse. For me it was lamotrigine that made it worse, I am not suggesting that it is for your daughter, we are all different, and talking to the specialists meant a drug change. Over time it is a bit of trial and error to find what works for an individual. I was advised to go through the side effects to gain control which seems to have worked. One drug stopped the tonic clonics then I had an increase in absence seizures instead so a second drug was introduced to stop those, hopefully you will get there with your daughter. I wish you well on your journey.
Have been on both of these medications Keppra and Lamictal, although not at same time, have Juvenile Myoclonic Epilepsy since age 14, am now 67, so probably been through most of them, in my case was best if I was on two medications at same time, although when altering or changing medications, which could take three months, this was probably the most dangerous time with regularity of seizures. I am presently on Vimpat and Briviact. Over the years I myself found I had reactions, side effects, the Keppra I found slowness and loss of memory, while the Lamictal, I had too stop, due to "night terrors" and long term tooth decay, no especially reduction of seizures, which over my life was usually three every six weeks, it was the side effects/reactions of the medications that my medications were altered . Some epilepsy medications were in effect short term, then HAD to be changed. In the last circa. forty years I have always been on the two epilepsy medications, to 'balance' each other.
My son was diagnosed in May 2020 he’s 23 years old now and has been seizure free for 18 months.
He takes 200mg of Lamictal and 1250mg Keppra twice daily. He has myoclonus and tonic clinic seizures and found that it was the Lamictal that seemed to make the seizures increase and once he started adding the keppra he felt better and noticed a considerable decrease in seizures and once he reached the full dose he managed to gain control.
In our experience it definitely felt like things had to get worse before they got better. We put our trust in the doctors and epilepsy nurses. Ours were excellent.
Hope this helps and I really hope your daughter gains control soon.
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