[Research] Catamenial Epilepsy PLEASE HELP!

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Anela

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:crying:

Its driving me crazy. 5 seizures a day at least before period, during ovulation and anything to do with menstrual cycle. I use Lorazepam sometimes but it doesn't really help and when Lorazepam is wearing off I feel so depressed. Is there anything I can do?
 
Catamenial seizures are usually triggered by estrogen and its ratio to progesterone (estrogen can cause seizures and progesterone can prevent seizures) some women with catamenial epilepsy are helped by taking progesterone, but it can be hard to treat with the large fluctuation of hormones that occur during ovulation and menstruation.
 
Anela - when have you last discussed your symptoms and treatment with your neurologist? If it has been a while, a lot of doctors take the no news is good news approach ie. you haven't complained lately so seizures must be under better control. Are you on any other medication besides Lorazepam? If so, perhaps the dose and/or selection of medication needs adjusting.
 
masterjen said:
Anela - when have you last discussed your symptoms and treatment with your neurologist? If it has been a while, a lot of doctors take the no news is good news approach ie. you haven't complained lately so seizures must be under better control. Are you on any other medication besides Lorazepam? If so, perhaps the dose and/or selection of medication needs adjusting.
Click to expand...

Thank you masterjen. Its been a while since I saw my neurologist. I was suppose to see him August but I was told my appointment has been changed to October. I have spoke to him about it and we have been trying to find something to control my seizures for 6 years.

Currently I am on Tegretol 400mg twice a day, Lamotrigine 100mg in the morning and 150mg in the evening, Citalopram 40mg morning. I also take Lorazepam when I have 3 seizures or more in one go which is ALL the time.

Ovulation pre-period is the worst. Previously I tried depo-provera for it but it didn't do anything at all. I've tried Pregabalin, Keppra, Zonegran, Clobazam none of them made a change.

Yesterday and today have been AWFUL. I took Lorazepam 2mg last night and I felt absoultly horrible today. I had too many seizures so I had to take it but the aftereffects of it is disgusting :crying: I have no idea what to do!
 
Frink said:
Catamenial seizures are usually triggered by estrogen and its ratio to progesterone (estrogen can cause seizures and progesterone can prevent seizures) some women with catamenial epilepsy are helped by taking progesterone, but it can be hard to treat with the large fluctuation of hormones that occur during ovulation and menstruation.
Click to expand...

Would any of the birth control pills help with that? I know I can't use birth control pills as birth control because of Lamotrigine and Tegretol but does anyone know if its possible to use them to control seizures?
 
If the depo-provera did not help other birth control probably wont help either. They were doing testing a few years ago with a natural progesterone lozenge but I have not heard much since.


It is hard to treat, if progesterone does not help, you would have to stop the cycle completely, something radical would be trying Lupron to stop the cycle but finding a DR that would approve such a treatment would be very difficult.
 
Catamenial horrors

Wow, I know exactly what you are talking about. During peri menopause I started falling, often several times a week to the point of needing a craniotomy in Dec 2014 to relieve a sub dermal hematoma. It was caused by several nasty falls and many a concussion. Now at 57 I am finally in full menopause and the falls have stopped. Don't get me wrong, I still remain on 3 aeds and I have been on the Ketogenic diet for a year but the difference is radical. I live in Canada so I also have access to Medical Marijuana.
I was given the life sentence of a bicycle helmet at all times but that might, with any hope find a new home in the trash.
I believe hormones play a huge part in this whole picture. Honestly, I always did.
Please feel free to contact me if you have any questions.
Take care, breathe
Deedee
 
Some people have found that the Nuva Ring reduces/lessens the severity of catamenial seizures. See: https://en.wikipedia.org/wiki/Contraceptive_vaginal_ring
It's not for everyone though, particularly if you have certain health issues such as diabetes or high blood pressure.

If you haven't already, you could try an anti-estrogenic diet to see if it helps a bit. Some very basic information can be found here: http://www.livestrong.com/article/234882-anti-estrogenic-diet/ and:
http://www.ncbi.nlm.nih.gov/pubmed/9492350
 
Hi, Interestingly enough I was given a prescription for an estrogen supplement quite similar to the Nuva ring.
It is a small vaginal suppository, my biggest problems were often Cystitis. This product is for vaginal atrophy which nobody seems to discuss but because it isn't oral, a very small amount of estrogen gets absorbed. Every time I fell and was injured enough to have to go to emergency, the urine always came back positive. Sometimes I had no uti I symptoms at all.
Other people on CWE reported similar, when the immunity is low, seizures could be more likely and often.
There was an article about vaginal atrophy in the New York Times, last week. I will attach link.
I also use the estrogen supplement at 1/2 strength.....
P.S Link was from globe and mail, what its like to have vaginal atrophy....
let me know if you can't find it.
 
deeds said:
Wow, I know exactly what you are talking about. During peri menopause I started falling, often several times a week to the point of needing a craniotomy in Dec 2014 to relieve a sub dermal hematoma. It was caused by several nasty falls and many a concussion. Now at 57 I am finally in full menopause and the falls have stopped. Don't get me wrong, I still remain on 3 aeds and I have been on the Ketogenic diet for a year but the difference is radical. I live in Canada so I also have access to Medical Marijuana.
I was given the life sentence of a bicycle helmet at all times but that might, with any hope find a new home in the trash.
I believe hormones play a huge part in this whole picture. Honestly, I always did.
Please feel free to contact me if you have any questions.
Take care, breathe
Deedee
Click to expand...

Thank you Deedee ah the joys of being a woman :roflmao:

I am 28 I was diagnosed 6 years ago. I think FINALLY my seizures are managed well any other day which took years to sort out, but now I know for a fact pre-period, ovulation and on periods I can end up having 20 seizures within 4 days (some are separate dates). Today was absolutely a nightmare I had 6 seizures (so far...) as my lady flow has started 2 days early (too much info sorry :noevil:) I avoided taking Lorazepam I am just scared of the aftereffects. Hormones do play a massive part its unbelievable.
 
Nakamova said:
Some people have found that the Nuva Ring reduces/lessens the severity of catamenial seizures. See: https://en.wikipedia.org/wiki/Contraceptive_vaginal_ring
It's not for everyone though, particularly if you have certain health issues such as diabetes or high blood pressure.

If you haven't already, you could try an anti-estrogenic diet to see if it helps a bit. Some very basic information can be found here: http://www.livestrong.com/article/234882-anti-estrogenic-diet/ and:
http://www.ncbi.nlm.nih.gov/pubmed/9492350
Click to expand...

Thank you Nakamova I will look into that and speak to my neurologist about Nuva Ring.
 
Frink said:
If the depo-provera did not help other birth control probably wont help either. They were doing testing a few years ago with a natural progesterone lozenge but I have not heard much since.


It is hard to treat, if progesterone does not help, you would have to stop the cycle completely, something radical would be trying Lupron to stop the cycle but finding a DR that would approve such a treatment would be very difficult.
Click to expand...

I was so hopeful when I received Depo as I was told it works really well. But I am one of those people who is resistant to everything lol.
 
The product that I was prescribed is called VAGIFEM, in case you were wondering.
I will say that as difficult as it may seem, because it is..... The Ketogenic Diet has worked wonders.
hope you have a peaceful evening
 
deeds said:
The product that I was prescribed is called VAGIFEM, in case you were wondering.
I will say that as difficult as it may seem, because it is..... The Ketogenic Diet has worked wonders.
hope you have a peaceful evening
Click to expand...

I have already started the diet last Saturday as I heard that it is good. Do you think that my body is starting to notice a change and that's why this weekend was so difficult. I will speak to my neurologist about VAGIFEM thank you very much.
 
VAGIFEM
sounds great however look at the side f/x
I am going off my small dose asap
 
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