What may be happening? - Medication and seizure

[Suman]

Hello,

My 21 year old son has autism and developed epilepsy about 4 years ago. We have been struggling with medication, side effects and seizures ever since.

Currently he's on Briviact (30 mg X 2), Vimpat (50 mg) and Zonisamide (50 mg). Vimpat caused him to have myoclonic seizures, and Zonisamide gave him seizure control but the side effects were unimaginable. The plan was to wean off Vimpat and then Zonisamide, while slowly increasing Briviact. We introduced the Briviact in the last week of Feb (adding 10 mg every 2 weeks). Since then he's been having a tonic clonic 6 days apart, and then again after 3 weeks. We are supposed to titrate the Briviact to 50 mg twice a day.

We are afraid that the Briviact is also not working for him. We have left messages with our son's neurologist, not sure what the next step would be. I'm not sure if there's any other medication left for us to try.

Please feel free to share your thoughts.

-Thanks

 

[Nakamova]

Hi Suman --

There are quite a few seizure meds out there -- did your son's neuro already rule out ones like Lamictal or Tegretol or Neurontin?

Everyone responds differently and different seizure types may require different meds, but FWIW -- I had seizure control on Zonisamide but as with your son, the side effects were intolerable. I switched to Lamotrigine which has worked basically fine. (My seizure type = tonic-clonics).

 

[Suman]

Thanks Nakamova. Glad Zonisamide worked for you!!

We tried Keppra, Depakote, Lamictal, Zonisamide, Vimpat and now Briviact. We haven't tried Tegretal or Neurontin yet.

We don't know what to do. Should we increase Briviact to 50 mg twice a day or do something different now. We have reached out to his neurologist.

 

[Nakamova]

So you've been on the medication merry-go-round for a while.

And there are still other meds to try: Topamax, Zarontin, Lyrica, Tiagabine...

Tough to know whether the higher Briviact dose will help. It's a bit of a guessing game for the neuros too. Since Zonisamide worked for your son (albeit with bad side effects), perhaps his neuro could suggest another seizure med with a similar mechanism of action that would help. Has your son had genetic testing? Sometimes the results can point to particular kind of epilepsy and the particular kind of med that might help best.

 

[Porkette]

Hi Suman,

It sounds like your son and I have a bit in common I've tried over 10 different seizure meds and none of them stopped or reduced my seizures. My Epileptologist finally did a DNA test on me and found out I was drug resistant and then he put me on medical marijuana (CBD oil) and since then my seizures have decreased to the lowest they have every been in the 45 yrs. I've had epilepsy.
You may want to ask your sons neuro to do a DNA test on him they just take some blood and wipe the inside of his mouth with a q-tip all of this well be sent to the lab and the lab will be able to tell the amount of enzymes in his liver along with seeing his body chemistry. By looking at all of this they will be able to find the best seizure med for him with the least side effect or find out if he's drug resistant. I wish you and your son the best of luck and May God Bless the Both of You!

Sue

 

[Suman]

Thank you for your inputs and kind words Sue! I hope our son's neurologist will agree to do it. Is there a specific lab that does it?

 

[Porkette]

Hi Suman,
I didn't have to go to any specific lab when I had the DNA testing done. They can do it right at the hospital lab but once in awhile depending on how big the hospital lab is they may have to send the test out of town and then the results are sent to the Dr.
Take my word some Drs. don't want to do this test because they are making money writing perscriptions for people. If your sons Dr. doesn't want to the test just tell the Dr. that you will speak with the medical conduct board in your area and take my word he will have the test done. I wish you and your son only the best of luck and May God Bless the Both of You!

Sue

 

[Suman]

Update:

Sue, we still haven't gotten around to do the DNA testing.

My son is now on Briviact(40 mg X 2), Zonisamide (50 mg), Vimpat (50 mg). He continues to have tonic clonics once every 6 days. We aren't sure if there is a correlation but his seizures have happened after about an hour after he's had his shower. We are to increase the Briviact to (50 mg X 2) with a slow increase of 10 mg every 2 weeks.

We are to meet with his neuro next week. Any body have any thoughts/ideas/suggestions/comments? I feel so lost and heartbroken..

-Thanks

 

[Porkette]

Suman,

I had the same problem as your son I would be taking a shower or get out of the shower and the seizures would start. I spoke with my Epileptologist about this and he told me what's happening is the hot water was hitting my head and in turn firing up the neurons in my brain which triggered a seizure for me. Tell your son to cut back on the hot water and use cooler water and see if that helps.
If your sons neuro says that that don't do DNA tests tell the neuro that you will report them to the medical conduct board in your area. Often Drs. like to push the meds to make the money for themselves. I've learned over the yrs. that you sometimes have to tell the Dr. you don't want to be on a lot of meds.
Also take note of what the weather is like when your son is having any seizures sometimes a low pressure in the weather can trigger seizures because that messes with the hormones for some people. Ask your son if he has felt tired when he wakes up if he does he may need a sleep study done along with an e.e.g and e.k.g. that's how the found out I was having seizures in my sleep. I wish you and your son only the best of luck and May God Bless the Both of You!

Sue