hey I have a daughter 22 who suffers from seizures and also has autism and ADHD. She is under investigation atm on what maybe causing her seizures but it’s been such a long wait just to get an appointment which was finally given for February next year. She is on a medication called clonazepam which she takes every morning but it doesn’t seem to help that much. I really hope you get the help you need for you and your son as it’s a hard struggle to go through watching your loved ones hurt.
Oh dear I hope you get an appointment soon, keep chasing as you shouldn't be kept waiting with seizures.You should also get an epilepsy nurse for you to contact when necessary.
We have tried that medicine too and found it no help. I think it's good in large doses for stopping clusters.
Please keep pushing to get seen it shouldn't take this long x
Shihtzu23 Clonazepam is a relaxant /calmer that is often used for mental health conditions and its best affect is felt if taken twice a day with the second doze being at least 6 hours after the first! I know this as I was given it for that specific reason after being admitted to the mental health unit I currently live in! I normally take it at night to help me sleep!
Has your daughter been diagnosed with epilepsy shihtzu23 or has she been experiencing the seizures since she started the clonazepam? I ask because I find that with about half an hour of taking clonazepam I have 1 -5 mild short sudden muscle jerk seizures known as myoclonic seizures in my legs!
A craniotomy to remove temporal lobe epidermoid cysts in 1989 caused my epilepsy, so I was started on carbamazepine (Tegretol retard), and I took it for over 30 years as it controlled my daytime absences well. [- but not the nocturnal seizures, which I continue to take clobazam 10mg bd for].
But, being on carbamazepine for so long, it's side-effects (high SHBG, low vitamin D, high creatinin, then high cholesterol) became more problematic by late 2023.
I'm currently switching onto Brivaracetam, but finding that 100mg bd may be too high as I'm very tired compared to when on 75mg bd which seemed OK, (until some daytime absences after missing just one dose were witnessed). I'm not yet as comfortable on Brivaracetam atm, as I was on carbamazepine.
Overall, I will say, for myself carbamazepine was good for many years.
Epilepsy is not easy to control as it's not fully understood - possibly why there are over 200 AEDs 🤔. Also, we each can react quite differently to the same drug, plus meds can interact too 😬.
I hope that sharing my experience of carbamazepine is of use.
I would agree with you for an increase in the brivaracetam and then suggest maybe an alternative to the carbamazepine as something else may help instead! I am not a neurologist only a fellow epileptic so don't know what meds go together but I will say that I found that my tonic clonic seizures and absence seizures were well controlled as a child by Sodium Valporate (Epilim)! Have you tried that?
My son was on carbamazepine for years and he developed osteopenia from it. So, we switched him to Keppra. Keppra controls his seizures so far and the only downside is the mood change. He gets angry easily now and he was a very easy-going person. Has anyone suggested Keppra?
Thank you Yes we have tried Keppra but it did not help sadly, although it did not have any negative effects.We have recently started Zonisamide so far no good but its a really low dose to start with so we shall see
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Levetiracetam information required
No Support…
Review appointment delays. Why are we accepting it? 
Change in condition 
