Looking for some advice.

[Shorehampete]

Hi. I started suffering from sleep seizures 4 years ago and am now on my third different set of medication and nothing seems to be working. I'm still having regular seizures and now having to put up with the side effects of the meds which isn't pleasant. I'm thinking of suggesting to my consultant about stopping the Meds completely and seeing what happens. I was wondering if anybody else has had a similar experience and how they got on. Pete

[car67]

Hi Pete

I am in exactly same position and I wish some one could help me too. I am on about my 9th different medication and still having lots of seizures. It’s called refractory epilepsy so it appears no meds help. I have had approx 12 seizures over the last month and am currently of sick from work as had 3 yesterday, a while back I asked the neurologist same question what was the point of feeding myself these tablets that don’t work as I still have lots of seizures and suffer terrible side effects, should I just come of them? She replied if I did that I would be putting myself in a very bad position and worst case scenario could be death!

I am currently waiting to hear from my neurologist today so I will pose the question again, I am so tired of all these medications that bring me down so much and don’t control my seizures. I wish I could help you or if any body could me , I would really appreciate it. I am prepared to try anything. It has affected my mood too as I am so tired of it all.

Speak to your neurologist or GP , the, may have different advise, I hope you get the answers you are looking for. Good luck 🤞

[Shorehampete in reply to car67]

Hi Car67

Thanks for your reply. I'm with you regarding how disheartening it is keep trying all these different Meds and nothing seems to work.

I saw my consultant today and she has decided that the next time her and some colleagues have a meeting where they discuss difficult cases she will bring my case up and see if they can come up with a plan.

In the meantime I've lowered the dose of daily tablets so the side effects are minimal and have to let her know if I have any seizures in the meantime.

Try and stay positive and keep pestering your neurologist and fingers crossed they will get the right combination soon.

Good luck Pete