Fed up

[shonafrances]

Hey
Feeling a bit crap.
I am Not diagnosed. But Had clear MRI and EEG which was inconclusive but showed 'suspicious' activity on left temporal lobe. So had sleep deprived EEG on Monday and neurologist referred me to the epilepsy specialist which is next month. Meanwhile I still don't know if what is happening is epilepsy.
Compared to tonic colonics etc I know my situation is really mild, but I just had 3 episodes in 3 days and it has left me feeling like everything is slightly out of sink in my brain if that makes sense? Nothing major just a very slight delay in the world... It is the fear that gets to me the most and right now I feel like any minute I could have another episode and the thought of that fear again ....well, eugh.
I have been having them in clusters the week before my period for the last 2 years and thought it was panic attacks, but started process of getting them looked into in September. I can't believe it is taking so long. The not knowing is the worst. I feel like I can't really tell people what is going on.
Sorry to be self-indulgent, just feel out of sorts tonight and fed up with it all

 

[Chaz1]

shonafrances

sorry u r feeling crap

thank goodness for clear MRI

great that you are being sent to epilepsy specialist, very often neurologist is where one is referred to so seeing someone dedicated to epilepsy is great, but understand the wait is a killer..

catamenial epilepsy is the name for seizures on/around menstrual cycle, maybe you could do some research in meantime to see if this sounds like it relates what you are experiencing


http://www.coping-with-epilepsy.com...hat-do-we-know-about-treatment-methods-18290/

http://www.epilepsyfoundation.org/l.../womenshealthtopics/hormones-and-epilepsy.cfm

 

[shonafrances]

Thanks for your reply Chaz1. Yes the clear MRI was a relief as coming out of the blue in my 30s I was scared that there might be a tumour to blame.
I have heard of catamental epilepsy and from what I have read it does relate to my experience, I will look at the links you have posted too, thank you.
I think I am just feeling a bit at sea with it all as I don't know it is even epilepsy, so how can I come to terms with it?! (Sighs)
Anyway sorry to be a moan!

 

[Chaz1]

don’t be sorry, moan all you like, this is mega overwhelming for you, hey, I say you are allowed to do a Greek Wedding ceremony and break every dish in house, but that might not be a good idea

in a few weeks you will know a lot more and keep us posted on your visit to the specialist and in meantime, vent away and ask any question that pops to mind.....millions of people worldwide are living with seizures, 50million are diagnosed with Epilepsy any many who are not experience real seizures (can be hard to detect in brain) ....

you will manage BUT one thing I want to say, when you need help ask for it...no question is a stupid question and that include the list of questions you can prepare to take to your specialist

we keep seizure dairy in our house taking note of every seizure, helps to find patterns, helps with every doctor visit...simple notebook will do....we date and time and describe the seizures

 

[shonafrances]

Thanks Chaz1 you are very kind
I will keep you posted when I have seen the specialist.
I keep a 'seizure' diary, luckily I write a diary every night as have had problems with my mood, so was able to track back and hence I have recognised a pattern.
I also have a list of q's for every eventuality when I go to see the specialist! I have had to learn in my battles with other health issues that being proactive and assertive are essential to get anything done! Not always easy of course....
Thanks again