More confused than ever

[eslucas]

I just don't know where to go from here. For the past 8 years I've been having seizures. I've switched meds over the years to find the right one. Now that I'm tired of switching I'm taking lamotrigine.

All of my records indicate that the seizures occur approx. every 4-5 weeks, same time I have PMS but I could also be going through a transition (I'm 44) from PMS to perimenopause so these seizures could all be linked to hormone levels. Now my doctor tells me i have osteopenia (1 level below osteoporosis) and I've heard that meds can decrease calcium levels. Not to mention give me insomnia which I've also concluded can trigger my seizures if I don't get enough sleep.
Question is do I increase meds for approx. 10 days to 'calm' my nerves during PMS but at the same time risk decreasing calcium and other nutrients in my body now that I know I have some bone loss? Is there a balance?

[RobinN]

This is what is occuring with my daughter. Almost monthly. Hormones are a huge trigger for many women (and some men). My daughter was found to be lacking progesterone so she now uses a bio-identical progesterone. We are working to get a balance over the cycle, so that there are not peaks and valleys. However, the body has a mind of it's own.
I never knew that certain foods are high in estrogen. Throw in a high glycemic count, lack of sleep and emotional issues and BAM!

I am now on a search for ways to heal the body, and figure out why the hormones are out of balance in the first place. I know the adrenals have a part in this. I also am looking into liver health, and clearing toxins.

My daughter is med free at the moment. Meds did not help her, so it was our choice to keep her med free and work in a more holistic way.

[eslucas]

Thanks for the feedback RobinN. The response I got from you was more helpful and informative then my neurologist gave me years ago. He told me that there is no
evidence to show that hormones can trigger seizures!
Just like you I'm trying to find ways to balance my hormones by modifying my diet, exercising more and I as much as I hate doing it, take a vallium to help me sleep. Good luck with your research and I look forward to reading about your progress.

[RobinN]

My daughters first neurologist also told us that hormones would not play a part in a person having seizures. He also told me that diet would not cause seizures.

Both are wrong.

Catamenial seizures are brought on by hormonal fluctuations.
What I learned is that we all are prone to having seizures. My daughter and you, just have a lower threshold during this time of the month (others here at CWE are affected this way also). Then you have nutritional choices that lower the threshold. You have mineral imbalances, over load of stressful situations.... and on and on....

So.... before medication.. there are a lot of ways a person can approach his/her own care. You have to weigh the risks and the side effects. My daughter did not get any benefits from being on medication. She had more and additional awful side effects. I wasn't willing to wait another two or three years to have her experiment with more drugs. My life along with hers was spiraling out of control. Every day was unpredictable, and scary at times.

She unfortunately just had one yesterday, which makes me sad. I so want her to get through a school year without being "the one with seizures"... those paramedics sure are cute though. This is definitely hormonal, as her last one was exactly a month ago.

I have some new ideas to try, because there are other triggers that need to be cleared up. Her system is just not functioning properly, and that can be a huge trigger. As can be the fact that her body is higly acidic. All worth noting.

So yes... you are not alone in the hormonal approach and the nutritional changes.

[eslucas]

It's nice to know that I'm not a 'freak' and I'm not alone when it comes to hormone or nutritional imbalances that may trigger seizures. I'm also very sorry to hear that your daughter had another seizure. Being teased at school is hard enough but when you're labelled it's much worse. I admire your determination to find the best treatment to stop her seizures. She's very lucky to have a mom like you. Hang in there.

[RobinN]

thank you... she doesn't always appreciate my determination.

You are not a freak. Have you ever asked for your hormones to be tested? There are some known medical studies that show that bio-identical hormones can help. If you google hormones / seizures you will find a wealth of information to discuss with your doctor. Or find a doctor that is interested in the subject. I found a neurologist at USC that has made this her specialty.

This doctor though doesn't buy into the nutritional approach though. Says that my daughter is a teen and I can't expect her to stay away from coke. The doctor herself would find it difficult to give up her soda.
I was shocked by that comment. We all know that soda has ingredients that are neurotoxins.

This has taught me to be my own advocate, and that knowledge is power and the key to health.

[Cint]

Years ago, I noticed a link between seizures and hormonal fluctuations, and the so called neurologist back then said there was no link between seizures and PMS. I kept a notebook of it at the time and I just knew that with my body, there was a link. That was before I knew they were called catamenial seizures. But after the left temporal lobectomy in 1990, it all changed for me. It was like I was going thru menopause at 32 years of age.

Cindy

[Bernard]

I just don't know where to go from here.

My suggestion: Proactive Prescription for Epilepsy

All of my records indicate that the seizures occur approx. every 4-5 weeks, same time I have PMS but I could also be going through a transition (I'm 44) from PMS to perimenopause so these seizures could all be linked to hormone levels.

Absolutely. It's called catamenial epilepsy

Now my doctor tells me i have osteopenia (1 level below osteoporosis) and I've heard that meds can decrease calcium levels.

Try supplementing your diet with Chia seeds. It contains calcium in a bioavailable form (ie. you can digest it easily unlike the calcium in dairy foods) and contains boron which the body needs in order to assimilate the calcium (rather than just pass it through the system and out the back door).

Question is do I increase meds for approx. 10 days to 'calm' my nerves during PMS but at the same time risk decreasing calcium and other nutrients in my body now that I know I have some bone loss? Is there a balance?

You might look into a progesterone cream or pregnenolone supplements to balance the hormones instead of ODing on Lamotrigine.

[eslucas]

Thanks for your suggestions. Really appreciate it.

[brain]

Eslucas:

I actually bumped an old thread up, and sadly
many Neurologists and Epileptologists are out
there and do not believe or are not "up-to-date"
in Neuroscience and fall into the category of
the misconceptions that there is no correlation
between females & hormones & menstrual cycle.

You can go into the KITCHEN section and and
start posting a conversation in that thread there.
Because it's always has been a "hot topic" among
teen girls & women all over!

Whether beginning (puberty), peri, pre, post,
it's a major PITA - whereas I've personally labeled
it as "horror"mones!



I personally suffer through it and it's a nightmare
"hell on earth" to go through it!

(I'm not being 'funny' here, but I had been told by
one HMO neurologist "that it was all in my head" - Why
do I feel like saying "D'oh!" in a Homer Simpson
voice?)

NOW - on the other hand - some Neurologists or
Epileptologists may put teen girls / women on Diamox;
and that does help for some and doesn't work for others.
But when I read the forums and boards - I find that
Diamox works for those who are regular and more
predictable than those who are excessively irregular;
you'll see when you head over to the Kitchen and
read the old thread that I've bumped up that Bernard
had posted the link on or just click here:

Seizures During Menstrual Cycle

Which is Catamenial Epilepsy.

[eslucas]

Thanks for the tips brain. Appreciate it.

[josieb]

Eslucas:

My seizures have also been associated with Catamenial Epilepsy. It took years for the doctors to finally admit that such a thing exists. The only thing that has helped control my seizures, both before and after my brain surgery, is, as noted by Brain, the drug Diamox. I take it along with my seizure control medications and have been almost one year seizure free. Good Luck with everything. Sincerely, Josie

[haird18]

One thing is that using good nutrion, finding a good vitamin regimen. Just make your Dr's aware of it and get them to run a full blood work up, especially metabollics, cbs's,liver function, thyroids, cbcs so they know what your deficincies are and then go from there.
David

[eslucas]

josieb,
Wow. One year seizure free. Congrats! I still can't believe that doctors have a hard time
believing that catamenial epilepsy exists. It's nice to know I'm not alone but at the same time I feel bad that any of you have to go through this. Thank god for this website. All the best.