Advice anyone?

[Fervie]

I have been diagnosed with epilepsy ever since I was 7 y/o ( currently 20 y/o) . I'm taking Trileptal as medication. I haven't had a seizure for quite a time , although every month before I get my monthly PMS , I will feel weird , heart palpitations, a bad aura , confused , scared , feelings like I am about to get an epilepsy attack. This will keep going for 30 minutes max , then I will see the whole surrounding turn ( ex. the table was on my right , then I see it on my left ) , I run to vomit , I feel real confused and after 5 minutes I'll be good as new. Before everything turns around , I also feel like someone punches me in my heart every now and then , accompanied with heart palpitations.
This has been happening for the past 2.5 years . I have had a brain scan , electrographic , and a 24h one but all is clear. this strange feeling usually occur before my PMS comes or after . Before it happens , I get a slight strange feelings days before.
If anyone knows anything about this , I would be more than thankful to you.

 

[Cint]

This sounds like it could possibly be a simple partial seizure, also known as an aura. They often coincide with PMS. Let your neuro know.

 

[ROBERT45]

Advice

When I would have a seizure(s) it very often would be during the last few days of one month and the few days of the next. As my name shows I'm a guy; but medical science has proven that men have fluctuations in hormonal levels. During that same area of time for likelihood for seizures I have mood changes as well. I have been told, and asked as well, I was PMS'ing. For me time and keeping a log of seizures, triggers, etc showed that changes in hormone level affected the metabolism of medications. Dr's have agreed with my opinion. Can't say for certain that this applies to what you are experiencing. The hormone factor may be a part of what is happening with you. Don't know. Consider it though.>>>>Robert

 

[Fervie]

This sounds like it could possibly be a simple partial seizure, also known as an aura. They often coincide with PMS. Let your neuro know.

Thank you Cint. I have been to a neurologist and he adviced me to see a gynaikologist. If I ever do , what would you advice me to tell him or her? I'm pessimistic because I just cant find a way to explain to the, of what's going on.

 

[Fervie]

When I would have a seizure(s) it very often would be during the last few days of one month and the few days of the next. As my name shows I'm a guy; but medical science has proven that men have fluctuations in hormonal levels. During that same area of time for likelihood for seizures I have mood changes as well. I have been told, and asked as well, I was PMS'ing. For me time and keeping a log of seizures, triggers, etc showed that changes in hormone level affected the metabolism of medications. Dr's have agreed with my opinion. Can't say for certain that this applies to what you are experiencing. The hormone factor may be a part of what is happening with you. Don't know. Consider it though.>>>>Robert

Thanks Rob! I hope things are working well with you so far!

 

[Nakamova]

Hi Fervie --

You might want to find a different neurologist, one who is familiar with what's called catamenial epilepsy. Catamenial epilepsy is seizures that are triggered by surges in estrogen that can happen at various times during your cycle. if your simple partial seizures are occurring at the same time every month, that's most likely what is going on.

If you are on any kind of birth control that contains estrogen, you should ask your gynecologist about switching to something that doesn't contain estrogen. Aside from that, some kinds of catamenial epilepsy respond to progesterone cream or lozenges. you can read more about catamenial epilepsy here: http://professionals.epilepsy.com/wi/print_section.php?section=hormones_catamenial

 

[BrandiBrat]

Nakamova is correct, Fervie. Seizures can be triggered by a surge of estrogen and a drop in progesterone. I experience seizure activity both the week of my period as well as the week of my ovulation. A seizure diary helped me to recognize the pattern over the course of a couple of months. You should definitely let your Dr. know so that you can get help.

 

[Fervie]

Thank u so much Nakamova!
Do you think changing my meds will help me get over this? I am currently on Trileptal 600mg. I live in Greece , and it is difficult for me to find a neurologist knowing about this specific type of epilepsy

 

[Fervie]

Hey Brandi! Thanks a lot. Do you wanna explain me more about whats going on with u ? Do you actually get seizures or just get the symptoms of it and nothing happens just like me?

 

[BrandiBrat]

Hi Fervie, from what I have learned, when my estrogen spikes and progesterone dips I have seizures. Mine occur during sleep (I have nocturnal seizures and I wander). Although I also experience many during waking hours as well, I get complex partials as well as myoclonic. Even though I experience the full seizure, you would benefit from talking with your Dr. My neurologist appt. is on Friday and I'm planning on asking her about a med called Diamox (acetazolamide) or another suggested treatment she thinks is appropriate for me to try that would reduce the number of seizures that I experience around my period and ovulation since I've been able to track it for 3 months now on the calendar. It sounds like your auras are very bothersome and you're right in looking into it. Good luck, my friend!

 

[Nakamova]

It's hard to know if a different med would be more effective than the Trileptal. Unfortunately with epilepsy there's a lot of trial-and-error since everyone responds differently.

I hope you can eventually fins a neurologist specializing in catamenial epilepsy. In the meantime, you could try modifying your diet to minimize estrogen, particularly during the parts of your cycle when you are most vulnerable. Avoid sources of dietary estrogen like soybeans and soy products, barley, beans, lentils, yams, rice, licorice, etc. Avoid alcohol as well -- it lowers the liver’s capacity to metabolize estrogen.

And make sure you get plenty of the foods that may have a beneficial "anti-estrogen" effect: Broccoli, cabbage, cauliflower, kale, brussels sprouts, citrus fruits, eggs, avocado, nuts, organic dairy. Fiber. And tea and coffee, particularly green tea. (Though not if caffeine is triggering for you).

 

[Fervie]

I'm so grateful to you Nakamova . Thank you so so so much ! This is a big help to me !
God bless.