I'm baaack!!

[Wobblez]

Hi everyone, long time no type!!

Well over the last few weeks my epilepsy has spiked a little and i've been having lots of auras and dizziness. I feel very weak and dizzy most days and keep waking up exhausted. On the bright side, I now have a boyfriend =) He is absolutely lovely and it really doesn't bother him that I have epilepsy as he has been exposed to it in his family. He has mentioned that he's watched me twitch in my sleep and held his hand on my arms and legs and felt my muscles "buzzing" constantly. This could explain why I just can't get enough sleep lately.

Dr Lawn, an ep specialist called me last month to discuss and prioritise my 2 week video EEG. I'm on the waiting and cancellation list but it could take 6-12months. I dropped in all of my notes (no way I'm posting it and risking it being lost!) and spoke to the epilepsy nurse. She was lovely and spent an hour reviewing my situation. She also said "I tell all my patients that you can still go to parties, you just need to have a nap beforehand and allow yourself a lazy day the next day. Sleep when your body tells you to and allow yourself some slack". I almost burst into tears. I felt like my lifestyle had finally been justified! I'm not lazy or a hypochondriac, I just can't do it all like I used to be able to! So nice to be understood!!

Question: does everyone else believe dizziness and feeling weak can be part of epilepsy? I've had my neck and back treated to rule that out and I'm not sick or anything. I'm on Lamictal so I guess it could be the medication.

How is everyone lately?

 

[Chaz1]

Wobblez.....we missed bubbly u ......welcome back.

Not sure on the meds and dizziness so won’t comment, leave that to the experts

Excellent tips from your doc that my son’s doc has given him before - going to remind him

Sorry to hear of the buzz of S activity

A boyfriend, woohoo!! he sure getting off on the right foot WONDERFUL for U.... who knows where it will go but today u have and today we sure as hell will enjoy every minute…..and well deserved girl, lap it up..

 

[MuayThaiFighter]

That is no good your not feeling to good as of late. But it seems like you have some pretty good things happening. Congratulations on your new b/f, it really helps when the people you care about can relate.

As for medications, it is so confusing in my own life. Plus it can be dramatically different depending on the individual. Though I did notice something tonight that has been consistent for me. I felt pretty energetic and started to kickbox with a friend, light sparring, which I haven't done in forever. I took my Keppra and after an hour I noticed my endurance lacking way to much. I felt to tired, I could barely keep my hands up. Now I still have a killer headache, and I always did when I trained. So now I have to take it easy for awhile, sigh. I wish you the best of luck though and your nurse sounds awesome for hearing you out! It is very true, stay well rested, it can made a day far better!

 

[julie wishes]

Well its hard to figure out sometimes. I'm not medicated and I feel dizzy and weak a lot. I think its part of epilepsy... but which part? I suffer simples seizures, with the most "extra electrical activity" he he at night. So I don't get enough sleep.... sleep deprivation makes me dizzy and weak, but seizing also makes me dizzy and weak, and when i was on meds the side effects of those were dizzy and weak (to name a couple lol). Simple seizures can be hard to figure out. You are sooooo lucky to have someone who took a good history and listened to you. I hope you get some answers from the EEG and share the findings with us.