catamenial epilepsy

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jonsey

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Good morning from Wales

Im looking for some advice on what i should ask Amys gp for when investigating catamenial epilepsy .

I have asked for a hormone test which was dismissed , but not for long . Hopefully our next appoiontment with a competent gp will heed my request .
 
I can't say much for catamenial epilepsy but if your request is dismissed I would ask why. There may (or may not) be a valid reason it was dismissed.
 
All I can say is document, document, document! It has taken me 3 years for my neuro to even consider this recomendation that this could even be considered. I think because they just don't know enough about it yet. How it all works together. How it can casue triggers and all of that. I Myself am looking at going to a level 4 center like Mayo or the Eplilepsy Center in Tampa to see if I can get some more answers. My Neuro won't even put me in for an extended EEG like I ask for during my period I think this would help him to pinpoint seizure activity to help me and I am refused.Crazy....
Dont give up

Tina
 
If it is Catamenial Epilepsy, then how would it be treated differently than epilepsy without a determinable cause? I have catamenial epilepsy, and I'm on 3 meds and just expect breakthrough seizures in the middle of the month and when I have my period.
 
Thank you again Nakamova, these links are just what i needed.

Hi Krista2882, when i was explaining to Amys gp (whom i have never met before ) His attitude was , that she will have to live with the breakthroughs , take extra care when you are vunruable . I say NO , Why should you, I dont want Amy worrying unnecessary towards the end of her cycle . The longest shes been seziure free is eight months, with no breakthroughs . This can happen again im sure . Today shelia said that maybe we could introduce a rescue med. Im so angry that only because i have been more vocal and got a gp involved, Amy is not just a NHS number on a file .

Tinasingergirl - Never going to give up , Im so determined im scareing myself (ha ha)

Eplieric - He dismissed because it was not his field of expertise , He should of held his hands up and arranged a new appointment sooner , rather upset Amy with negative feed back .

Fingers crossed for wednesday i will let you no the outcome

Bye for now from a very cold Wales
 
Krista-A rescue med? which one and how often would you take it the last time i saw my neuro he wanted to put me on clonopin and after looking it up i was unsure about it since he wanted to put me on a 2 week on 2 week off rotation. I am wondering how that would help? I still need to be able to work.....

Tina
 
Krista-A rescue med? which one and how often would you take it the last time i saw my neuro he wanted to put me on clonopin and after looking it up i was unsure about it since he wanted to put me on a 2 week on 2 week off rotation. I am wondering how that would help? I still need to be able to work.....

Tina

lol I don't know. I'm asking the OP what a rescue med is.
 
Morning all

Happy Easter. I beleive that the rescue med is taken for the seven days when your period is due . Shelia (Amys epilepsy nurse ). did mention a drug but that was over the phone , i will no more after our visit.

I will keep you posted
 
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