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Hi all, I'm new here and posting on behalf of my daughter who has had epilepsy since puberty, she is now 40years of age and like many of you, I am sure, heartily sick and tired of living life with epilepsy.
I got a call from her work at 7am this morning, saying that she was "going to have a seizure" I told them not to call an ambulance and I would be right there. The last time they called and she was carted off to hospital - so unneccesary, but they must cover their b***s.
Has anyone with catamenial epilepsy thought about the new birth control pill that you take every day all month? Wondered if that would help with the hormone spikes.
I do not find a hormonal pattern to my seizures. Both pubmed and websites seem to have some pertinent information that may be interesting, by searching for "catamenial epilepsy" within them.
My seizures were definitely ted by my cycle. I started seizing around age 9. I had such horrific periods that by 18 I was fed up and went on the pill-no more seizures. They started again at 36 after the birth of my last child. I had either been on the pill pregnant or nursing from 18 - 36. I recently considered going back on i'm now 44 and was concerned about my age, my OB/GYN assured me there would be no issues. They would start a low dose pill. I opted for a natural oral progesterone called Prometruim. It did not stop the seizures completely but reduced them significantly I had 18 in April and only 10 in May. The ones I did have were more like my old ones- shorter less intense and fewer after effects. I had surgery last week to remove the focal point and am feeling quite well. I will continue my seizure meds as well as the prometrium for at least 1 year. I really like how the Progesterone makes me feel. I've always been Estrogen dominant as are my sisters and mom. So the progesterone helps offset that and leaves me calmer in general. I've been very happy with my results. You can also get progesterone in a cream form. Health food stores carry Happy PMS - I did not care for that one as much as I did for Prolief made by a company called Arbonne. They're kind of like an Avon or tupperware type line. They make skin care and make up as well. Their products are fabulous. I was an hairdresser for 17 years and worked significantly with skin care and make up and theirs is my favorite skin care line. You can find an area rep if you go to the Arbonne web site or just google them if this doesn't work. You can sign up to be a rep (you don't have to sell or do home parties to be one)and get all their products at 30 % off. What woman wouldn't love skin care and make up at a 30% discount. They'll even come to your home and you can have a "home Party" to get introduced to their products and get signed up yourself.

Hope this helps.
Progesterone was used fairly frequently in the 1940s to treat epilepsy. It works by stimulating GABA in the brain. (GABA is a neurotransmitter that inhibits seizures). It was phased out as a primary treatment because: 1. There wasn't a lot of it available back then, 2. You couldn't use the higher doses on men, and 3. Progesterone can't be patented, so there's no profit in it for the drug companies.

If your daughter's seizures are hormone-related, then check with your doctor -- it's definitely seems worth trying either the pill, or the cream mentioned above as an adjunct to whatever treatment she's already getting.
I studied this because I was seeing in my journal that Rebecca's seizures were occuring around her period. Not all... but most. Rise and fall of hormones.

I found info stating that synthetic hormones were not as successful in raising the threshold as bio-identical hormones. There are some PubMed articles on this subject. My daughter has used Progesterone cream. This past month she did not and she had no seizures. I am hopeful that we are getting her system to carry it by itself. Keeping those fingers crossed.
Do most of you have Grand mal seizures? My daughter Andrea does, very violent and vocal. She is totally out of it for hours afterwards.
She has hurt herself on numerous occasions, bitten her tongue many times.
She is still feeling dizzy since Monday and also a little spaced out.
There is

a wide variety of seizure types here....although I am one of those lucky ones to have the tonic clonics (grand mals). YIPPEE. Like your daughter, mine are very violent (bone breaking as well as furniture breaking), and yes, I do bite through my tongue--all the way through both sides. I tend to become 2 years old for quite a while, and I cannot function as a normal adult for well over a week.

As far as I have been able to track none of my t/c's have been tied to my cycle. Mine are triggered by lack of sleep and major stress.

I wish you luck....

I've never had a Tonic Clonic - thank God. Mine were simple partial then shifted to complex partial in Nov 2007. They always increased right before my period. While Prometrium did not stop them it definitely reduced the frequency, from 18 in April to 10 in May, and their intensity and it gives me an allover calmer feeling and less PMS.My Neurologist is involved with a new national clinical trial using progesterone. I'm looking forward to seeing the results. I'll keep CWE informed when I know the results.
Do most of you have Grand mal seizures? My daughter Andrea does, very violent and vocal. She is totally out of it for hours afterwards.
She has hurt herself on numerous occasions, bitten her tongue many times.
She is still feeling dizzy since Monday and also a little spaced out.

Yes, Rebecca's are Tonic Clonic. She is not "out of it" for hours, but needs about a 30-60 min rest. Perhaps since she has been diagnosed with hypoglycemia, it might just take her a shorter time to get her levels back within range.
Wow, these posts are so interesting & helpful. I feel like we've found a family and understanding kindred spirits.

We tried progesterone cream for awhile which I think helped but daughter had been so seizure free (nearly) with the GARD diet that it was hard to tell.

The last two seizures she has had (after dental appts- long story) were very different than the old seizure patterns. She is age 15 now.

Has anyone had this happen at the start of seizure? Suddenly gets really tired groggy- then blurry vision, then slurred speech, cannot walk without appearing drunk like, then vomitting... then she is really tired, sleeps a long time, wakes up refreshed. No shaking or total loss of conciousness. This happened after the last seizure she had (2nd after dental appt seizure recently.)

All this after a whole year of only a few auras and no seizures. Ugh!
Does she have a lot of dental work? There are recorded evidence that it can cause neurological problems.
No, she doesn't. In fact I try to keep the visits to a minimum, her seizures started long before she had any polymer (spelling?) fillings (2)

She was great until this last visit a cleaning and a small filling (that after talking to a mercury free dentist I seriously doubt was even needed!)

After talking to a friend who taught dental hygenistry (?) at our local college; I'm now quite certain there was glutamic acid/gelatin base in the tooth polish, who knows what else in the shots and whatever is in the mouth rinse ect. they use. And aspartic acid/aspartame too no doubt, so many thins to watch out for at dental appts and in toothpastes even.

We don't do flouride or mint/menthol or gels at all. She is brushing with sea salt currently.

Sorry to hijack thread
You could begin a new thread on the subject if you want, because I do believe is is valuable information for people to know. I don't think many understand how the health of their teeth and gums can be connected to neurological health.
Yes, Rebecca's are Tonic Clonic. She is not "out of it" for hours, but needs about a 30-60 min rest. Perhaps since she has been diagnosed with hypoglycemia, it might just take her a shorter time to get her levels back within range.

You know what I find interesting? Before Daughter started having seizures she seemed to have hypoglycemia symptoms. I mentioned it to Dr. but she was not tested that I know of, how was your daughter diagnosed? How do you control her levels? a PM is fine, thanks ahead, I feel like I've hit a gold mine with all these great posts/info
Very interesting about the dental work. I was recently speaking with two moms who's teenage daughters had their first seizure within 3 weeks of having oral surgery. They were both blown away by the similarity of their stories. I'm seeing them again next week. More info would be greatly appreciated.
@Magpie - the red flags that I saw with Rebecca was:
#1 Her first seizure was after a major sugarfest and immediately doing a three hour workout.
#2 She was going down at similar times when she had her Tonic Clonic.

I asked for a year to have a glucose tolerance test, but was told it would not tell me anything relevant. The more I learned the more I knew my instincts were right. Finally after she had a seizure and her blood sugar was at 32 when the EMTs came, the ER doctor said it was very important that she have this test. I nearly hugged him.

When she had the test it dropped to 50 on the third hour. This was important for me to have this information. Now that she is seeing an adult doctor,we were referred to a nutritionist / MD and we saw him last Monday. I am so excited, because finally I have found someone that speaks my language. He will also share what he finds with her doctor. Next will be an endocrinologist and we will discuss why the insulin is out of balance and figure out a strategy as to how to improve her health.

As of today I only am guessing as to how to help her from day to day, with the information I have researched online. Learning one day at a time. Her sensitive time is once a month, but not 100% limited to that time.

@ flinnigan - reasons that I have learned about neurological health and dental work.
Infections, inflammation, mercury fillings- redistribution of mercury which is toxic, a lot of nerves in the mouth. Quite a lot of concern about root canals.
I think Rebecca's first seizure was very close to her having a root canal. It has been suggested that the tooth now be extracted, but I have yet to approve that.

There are yahoo groups online that I can suggest if they are serious about learning the causes.
I think one of the girls was did have a root canal. Thanks very much i can't wait to talk to the moms. I gave them this link hope they join us.
Hi Robin, When did your daughter take the progesterone during her cycle? My daughter is starting progesterone tomorrow and my naturopath suggested she take it the last three weeks of her cycle this month and then possibly just the last two weeks next month. She is still on the lamitrogine which obviously doesn't protect her when she has her period. She has had a tonic clonic seizure the last 4 times she had her period..and periods are really irregular now. Just curious as to when others are taking it. The family dr. finally is beginning to listen to us and she left a message suggesting that she take something to stop her periods...I would rather try the bioidentical hormone cream but am interested in anything that may help her.
My daughter has been on the progesterone for 8 days and had a seizure last night on day 17 of her menstr. cycle...this is the only seizure she has not had on her period! She wants to go right off the lamitrogine....dr wants her on valproic acid and lamitrogine...don't know what to do!!!!
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