A personnel question aimed towards the Ladies :o)

[RobinN]

It is made by a compounding pharmacist. I am positive it is a bio-identical cream. It is made for my specific needs, that is why the testing is important and why the prescription. As I said previously, the %progesterone that Rebecca receives is purely guess work. She doesn't even suggest a yearly test.
My doctor does a saliva test and extensive blood work. It is nice to have this to compare the yearly changes.

I am going to look up this book. Not like I don't have enough to read already, but I would like to understand this better.

We are not a part of the progesterone research, however I did read all the articles on PubMed and that is how I was able to discuss this with Rebecca's neurologist. Her specialty is in females and seizure disorders. Unfortunately her specialty does tend to encourage her to prescribe meds and surgery over natural methods. She couldn't deny though the last time we went in to the office that Rebecca's seizure pattern had drastically reduced in number. The facts that were shown on Rebecca's calendar of events. She asked to photocopy it.

For Rebecca's needs I want to figure out why her body isn't handling the hormones properly. I think it is her prior nutrition and perhaps her need for more sugar in her diet. She is "addicted" to lemonade, and still tends to reach for a refined carb snack over something more healthy. This tends to cause an increase in insulin and when the liver can't process it, becomes a burden and there is estrogen dominance involved somehow. Not sure why the body isn't making its own progesterone or why the body isn't ovulating. Still a mystery to me.

Thanks for the information. I am going to check out that book.

 

[sicily726]

Robin--isn't there such a thing as a "neuroendocrinologist"--a neurologist-endocrinologist, I figure--who could help we female epileptics whose hormone imbalances, like mine and your daughters, are highly correlated with the occurrence of our seizures (and, in my case, their going completely out of control with the onset of perimenopause)?

"Anovulatory cycles" are cycles in which you don't ovulate. It is more common for women of my age (perimenopause, in your late 40s) to have these "anovulatory cycles" than it is for a young teen. I wonder if your daughter has an endocrine system disorder . . . I dunno. I do know my one daughter who has seizures also had a long history of irregular cycles, going for many months without even having a period! We took her to specialists when she was a teen, who simply put her on the pill to regulate her cycles, rather than doing the diagnostics and getting to the bottom of what was causing her to have to take pills every so many months to make her periods come. Since she's become an adult, and had 3 children of her own, she, too, wants to get to the bottom of it. She also has other symptoms of an endocrine system disorder. They have ruled out polycystic ovary syndrome in my daughter's case. There are 2 other possible diagnoses for her endocrine system problem, and she remains undiagnosed in that regard. She only has occasional seizures, severe memory problems, and has nevertheless conceived and given birth to 3 healthy boys. Since she tried different forms of "the pill" and hated them all, she got an IUD. Her IUD has made her bleed and bleed and bleed and bleed. So, missing periods does not now seem to be a problem, thanks to the IUD. She's never really not having a period now (the things "medicine" does to women!).

Your daughter craves carbs . . . funny, I crave salty things all the time. Also, I tried to go vegetarian once or twice, and it triggered my seizures having more carbs than protein. I fare better with more proteins, including meats, beans (legumes), eggs, etc. with my seizures. And since I'm Italian (Sicilian)-American, there was no way I could give up cheese (although real pecorino romano is made from sheep's milk, not cow milk).

Let me know if any practitioner has ever suggested an endocrine system problem in your daughter, and/or if you've ever taken her to a "neuroendocrinologist" or an endocrinologist.

I have concluded that, because most of modern medical science is based on studies of specifically men over the decades (they did not include women in medical studies for many, many years and did not engage in women-specific studies for many years, either), and has only begun to study women and how differently we operate, we women remain a medical mystery.

 

[RobinN]

After I began to see a pattern of hormonal frequency, we were sent to an endocrinologist. He had no knowledge of how hormones could cause seizures. What ever research I had done and shared with him, he thanked me for the information. Not a comforting place to be. Especially when my daughter was having 6 seizures a month. She has not been referred to a neuroendotrinologist. I lost hope in finding someone that would have a whole body approach. They tend to be alternative doctors and that is out of pocket for us.

I think your dietary regime is similar to what may of the nutritional plans are suggesting for neuro help. Goat's milk is only 2% casein where as cow casein is 85%, if I remember correctly. Legumes are not recommended however tree nuts are. Vegetables are recommeded, however refined carbs are not. There are also vegetables that should be limited as well. We have taken potatoes out of Rebecca's diet, along with bananas since they are converted to sugar quickly.

I feel for your daughter. What a struggle while trying to live a normal life. Hard enough to raise three boys, let alone to deal with hormonal imbalance too. Does she find that nutrition over time is helpful? Keeping the liver pathways clear is important.

 

[Loudmouth]

I am due my monthly visit tomorrow, and for the last 2 days, I have been experiencing that I've not really had before (since being a teenager). I have about 20 times today, and 10 times yesterday, had these weird feelings (I feel like such a nut describing them). I get this feeling like I'm 'falling into myself' then all the sound fazes out then back in again and my vision goes blurry, then I'm ok again except for being a bit woozy/dizzy? Last time I really got this was when I was younger before my E was diagnosed,before I was on meds. Just so odd, not exactly PMT symptoms, are they??!!

 

[sicily726]

Interesting you should mention my daughter's diet. She tends to gain weight easily, esp. with pregnancy, and has had a hard time losing the weight after each birth; it takes her at least a year or more to return to a healthy weight after each kid is born. She's just one of those people who has to watch her diet. Curiously, when she doesn't watch what she eats, and gains weight beyond what is good and healthy for her, that is when her periods are all screwed up. On the other hand, when she watches what she eats, and buckles down and returns to her ideal weight, her periods have historically normalized. Also like me, her seizures occur more or less frequently dependent upon where her hormone levels are at any given time. Just like me, she has them more around her period, and they get bad when she is pregnant and/or under stress. Also, although she only admits to having "occasional" seizures (she's had them since she was a baby), I am convinced she's having more seizure activity than she admits to. Like me, she flushed her AEDs down the toilet and swore them off, choosing to risk having seizures (although she took a very low dose of Tegretol again when she was pregnant with her second son, because the seizures became more frequent again during that pregnancy). I should ask her if she has more or less seizures when her weight and periods have normalized than when they're not. When I grudgingly returned to a neurologist and hopped back onto the AED merry go round again when my seizures again went out of control thanks to my perimenopause-induced whacked-out hormonal imbalance, I spoke with her about looking at trying the newer AEDs, as my neuro had convinced me at that time that they were so much better than that stuff both my daughter and I flushed down the commode so many years ago (e.g., Tegretol, Dilantin, etc.). My daughter is stubborn like me and is distrustful of modern medicine like me; she said she is not open to hopping back onto the AED merry go round again. Wish I was in such a position. Right now, if I don't take anything, I'm screwed. I'll get into another car accident (that's what happened last time I tried to lower the dosage of my AEDs). But people like you, who do so much homework exploring and educating us all on some of the natural and dietary, supplemental and other holistic alternatives, are giving me hope that I might be able to achieve my goal: seizure control without drugs. If I achieve this goal, I may be able to help my daughter who has E and my other family members (3 siblings) who also suffer from E. Thanks for all your kind advice. I'm taking a print out of that neurofeedback eeg stuff to my neuro on the 17th. I will pray for your daughter and you, and would ask you do the same for my daughter, me and my other family members with E. There has simply got to be a way for us to combat this thing without the unacceptable, harmful, debilitating and even life-threatening side effects of modern AEDs.

 

[sicily726]

I dunno. Could be seizure activity, esp. if it's around your monthly.

 

[Loudmouth]

Not my 'normal' (ha ha) sort of seizure problems though? I normally have CP's where i do odd stuff I'm not aware of, and atonic attacks that don't have any warning. Crumbs, I'm not going to start getting another sort of seizure effects am I?

 

[sicily726]

Who knows? I guess I'd ask the neuro. I know my seizures changed dramatically over the years. Symptoms and experiences changed dramatically, but they were nevertheless seizures and seizure activity.