Catamenial Progesterone Therapy Trials and Errors
My now 18 year old daughter has had catamenial seizures since she hit puberty. We have traveled many roads and gone every route you can think of to get to the understanding and realization that her seizure activity is definitely related to her menstrual cycle.
After much research, we began using natural progesterone therapy about a year ago, but we are still in the process of figuring out the best way to administer it along with the correct dosing.
Originally beginning with topical progest creme, beginning at 20mg 2/day, she ended up having to work up to almost 180mg day. We finally realized that her body was no longer absorbing the creme effectively, only storing the creme in her fat cells, as she gained a lot of weight over that first year with nothing else changing in her activity/diet .... when we realized that the urine hormone testing that was being done for her every year to track her estrogen/progesterone did not adequately measure her progesterone, we sought out her blood serum progesterone levels to find out that she was not registering any progesterone despite the creme!
We then discovered natural progesterone that her doctor recommended she take like a suppository -- within the first month her blood serum went up to 26 ng/ml..... whereas before this it was at .05 ng/ml! Talk about miraculous!!!
The thing that we are having the most difficulty with is understanding the dosage and days of the month to take the progesterone. What is the best recommendation for dosing (she just recently had a terrible day of seizures on the day before her latest cycle started after no menstruation for 3 months once starting the suppositories). We got her blood serum tested the next day, which was on day one of her first menstruation in 3 months and it was at 4.0 ng/ml (two weeks prior her blood serum was at 12.0 ng/ml).... during the seizure activity we upped her progesterone, but it must not have been enough because we were unable to stop them. We will continue to check her blood serum each week just to try and get a picture of what her body is doing with the progesterone.
Is there a recommendation as to whether or not she should be taking progesterone every day of the month, or only on days 13-28? Are suppositories more effective than oral progesterone? (I've got conflicting opinions from reliable doctors) If it is every day, and we are at 200mg 2/day on the second half of the cycle, what should it be on days 1-13? Or should the dosage be higher?
So many questions still to be answered, I know! We want to avoid any more terrible days like we just had. I realize that it can take time to figure out this for each individual person, so our hope is that someone else out there who has gone down this road before us has something they have learned that has worked for them that they could share. Thank you for reading this and we pray we can all get some answers!