Possible cause of epilepsy (maybe even CP)

DDN1429
DDN1429 Online Community Member Posts: 58 Contributor

After a long awaited MRI scan, I got my Neurologists interpretation. Also have the radiology report which mentions more specific part of the brain.

A couple of frustrations that I'm having - I'm still having focal aware and unaware seizures, possible/probable nocturnal seizures. The meds I'm on come with their own issues which I have made concerns known to Neurologist, and GP, but feel this is all being such a long drawn process and not being addressed. My GP is pretty understanding, and already had tried to get me referred to another county as, but was advised to I have to stay at service I'm at, even though only Locum Neurologists available.

I've got a GP appointment in few weeks, but told to call in AM daily to try get quicker appointment, but am unsure if it may be time to get in contact with PALS?

Any advice (not medical) from others who have absences, visual auras, de ja vu and jamais vu would be greatly appreciated 🙏

Comments

  • durhamjaide2001
    durhamjaide2001 Scope Member Posts: 12,407 Championing

    hi there no advice but just to let you know that I have seizures so I know how you feel

  • DDN1429
    DDN1429 Online Community Member Posts: 58 Contributor

    Are your seizures controlled? I can cope pretty well with the actual seizures, it's the constant tiredness from disturbed sleep. And then the unwanted side effects from Levetiracetam and epililm. Neurologist wants to await eeg result, and if something shows, wants to switch epililm for lamitrogine. Where as at this point, I'd rather come off those, and have some just in case buccalam or similar..

    Apologies for the rambling, but as I know you can't advise, and as you'll know with having seizures is very complex and vastly differing for each person.

  • durhamjaide2001
    durhamjaide2001 Scope Member Posts: 12,407 Championing

    because I only have them now and again so they are none elipted seizures because I only have them once in a blue moon