Epilepsy Support.

[SolleyEra]

I’m having approximately 20 simple focal seizure a day for the past two weeks. Just looking for some like minded support or tips on how to deal. I’m on 3 different meds and they don’t seem to be helping. I was diagnosed with epilepsy about two years ago before a couple weeks ago I had been doing well.

[KellyInTexas]

Hi, sorry you’re having trouble.

Mine are partial complex. Temporal lobe epilepsy.

It took a few tries with different medications and combinations of medications to get them somewhat under control.

Limotrigine, Dilantin, Vimpat , ( without great success- and finally switched to Topiramate at 300 mg daily split dose. This also was to try to help with migraines.

I also take methscopolomine bromide as the brain does not connect correctly to smooth muscle cells of gut. Its a dysautonomia issue

The underlying reason I have seizures is an autoimmune disorder called antiphospholipid syndrome. It caused small micro clots in the brain.

I do take warfarin ( blood thinner) and this has very much helped the seizures.

[SolleyEra in reply to KellyInTexas]

Thanks for responding. I’m on Vimpat, Kepra, and they just added Lyrica. I stayed a few nights in the EMU a couple weeks ago. I have atrophy on the right side of my brain that they think has been there since birth, however I just started experiencing seizures about two years ago. I’m thinking of trying a new neurology team to see if a fresh set of eyes on things will help.

[EpilepsyAction1 Partner Epilepsy Action]

Dear SolleyEra

Communicating with people on here and through other social media, is a really good idea.

As well as managing the HealthUnlocked community, Epilepsy Action has other ways for you to contact others. These are:

Facebook facebook.com/epilepsyaction

Twitter twitter.com/epilepsyaction

Online community forum.epilepsy.org.uk/

Local meetings ¬ epilepsy.org.uk/involved/br...

From our experience, in most case people find it helpful to talk to or contact people who understand what they are experiencing.

If you wish to talk to our helpline team and you live in the UK please do phone our freephone helpline 0808 800 5050.

Our helpline is open Monday to Thursday 8.30am until 7.00pm, Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.

Regards

Diane

Helpline Team

[SeattleMom]

Hello, SolleyEra,This was recently published by Seattle Children's Hospital. Hope it provides good information:

pulse.seattlechildrens.org/...

[Lovingdean]

My son is having focal aware seizures i think. He is on Lamictal and Keppra combined for tonic / clonic seizures. He is Autistic and cannot communicate how this feels. The main thrust of the help is with medication. Not easy as a parent carer either.

He had a seizure yesterday snd has been very stop start since. How long does it take to recover from the upheaval internally of a seizure. The Autism makes him override everything. He can be very slow in day to day living, i think thats maybe because of low grade seizure activity that doesnt show on the outside.