New here - need advice and help. Recent diagnosis

[hannah09xx]

Hi everyone,

I am new to this site to apologies if I've posted in the wrong section...

I have been having seizures for the best part of 10 years, each time I've been told they are non-epileptic and there's nothing they can do for me.

12 months ago my seizures changed and after an EEG and MRI I was diagnosed with Temporal Lobe Epilepsy.... this was 6 months ago.

Since my diagnosis I have been put on:
- Lamotragine = had a very nasty reaction
- Keppra = seizures increased and was violently sick
- Vimpat (Lacosomide)

I am currently on Vimpat and although my seizures have decreased, I am still having anything between 2 - 5 per day. This is also along with a painful headache/migraine and nausea which is pretty much constant. I have lost 1st in the past 2 months, can't leave the house for fear of having seizures and when I do I need to be with someone. I lost my job due to the amount of time I needed off work and I'm getting nowhere with my neurologist.

I call my epilepsy specialist nurses once a week to update on my fits and have been told my next appoint with the neurologist isn't until January!! (3 months off)

I can't wait that long, the GP says there's nothing they can do to push it forward and when I get taken to A&E they just send me home saying to rest etc etc/

Feel like I'm against a brick wall and very stuck.... very low and depressed this is such a change from 2 years ago when I used to be so sociable and now I'm the complete opposite.

HELP! Thanks for listening and to any advice you can give me, anyone else I talk to doesn't seem to think its bad.

 

[Nakamova]

Hi hannah09xx, welcome to CWE!

It's really tough when the folks who are supposed to help are making you things worse. I'm so sorry to hear that diagnosis took so long, and that you're still trying to find the best treatment. I assume that your options are limited for going outside the official healthcare system and getting faster private care? Is there any way that the epilepsy nurse/neuro to increase your Vimpat dose before the January appointment? Don't be afraid to be a pest -- keep calling, write a letter to the neuro, whatever it takes to make them understand how bad things are going for you. Make sure they know you are depressed -- that can be a serious side effect of meds, and an indication that you might need to try something else. I know it can be frustrating to be on the medication "merry-go-round" but it can be worth it find seizure control and good quality of life.

In the meantime, there are some things you can do that might help. This is a great link to check out: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/ It can help to look for triggers and/or ways that changing your environment/diet/routine might help reduce seizures -- or at the very least the stresses that can cause them or be caused by them.

Please feel free to keep asking questions (and to vent too!). CWE members "get it" about epilepsy, and know exactly what you're going through.

Hugs,
Nakamova

 

[arnie]

Hi Hannah, and welcome. I second everything Nakamova said, and want to encourage you to keep in touch with us here. We understand. We've all "been there, done that", and in many cases are still going through our own struggles with it.
Keep on keepin' on!