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Old 02-19-2004, 06:59 PM   #106
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Re: SEIZURES HAPPEN AROUND YOUR PERIOD?? good news for you!

Kelly,
Do you have seizures that are linked to your menstrual cycle? What kind of meds do you take? Have you tried adjusting your hormone levels?
-Kathy

 
Old 02-22-2004, 09:09 AM   #107
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Re: SEIZURES HAPPEN AROUND YOUR PERIOD?? good news for you!

I know of one woman who eats a handful of peanuts daily for the same reason. I haven't researched this med, but she wrote that peanut oil was used in the making of natural progesterone. I have a peanut butter and jelly sandwich for breakfast every day. Phoebe

 
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Old 02-22-2004, 06:58 PM   #108
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Re: SEIZURES HAPPEN AROUND YOUR PERIOD?? good news for you!

Hello, anyone having luck with the peanuts and are you suppose to eat them every day of the month, or at certain times throughout the month?

P.S. Is a 1/4 cup a handful? 1/8 cup? Peanuts are definately a laxative!

Thanks,
Vicki
mom of Katie, the most courageous young lady I know

 
Old 02-24-2004, 09:19 AM   #109
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Re: SEIZURES HAPPEN AROUND YOUR PERIOD?? good news for you!

Hi,
I will be seeing my Neurologist tomorrow to look at starting on Progesterone. After reading this, I am a little worried about the side effects. Also-long term side effects. I saw an Ob-Gyn yesterday. The good news is that she thinks I would be able to get pregnant while on progesterone with lower risk of hurting the baby than if I continued my anti0seizure meds. So, I have a lot of questions for you that use progesterone. What side effects do you have? Do you feel tha progesterone is safe for long term use? Are you on other meds in addition to progesterone? How did you start this type of therapy (did you stay on anti-seizure meds, then slowly increase progesterone and decrease the meds?) Also- how do the peanuts work? Did you talk with your neurologist about this? Anyone having success with only peanuts and no other med?
Sorry, Ihave so many questions-If anyone can answer even just one, that would help me out tremendously!
-Becca

 
Old 02-24-2004, 11:28 AM   #110
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Re: SEIZURES HAPPEN AROUND YOUR PERIOD?? good news for you!

About the handful of peanuts, the woman who does that in the place of natural progesterone used that term, so I really do not know how much she eats. She seems to be satisfied with it from the posts she writes. I guess the amount as well as if it will work is just as individual as our meds are. I do try and have some each day too, but inthe form of peanut butter, I figure it can't hurt and may just be very beneficial from more than one standpoint. it would be good if you can find on the Net the ingredients of the natural progesterone product you are interested in and see if it contains peanut oil. Then you may feel more sure about the potential benefits. Phoebe

 
Old 02-24-2004, 03:58 PM   #111
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Re: SEIZURES HAPPEN AROUND YOUR PERIOD?? good news for you!

Thanks Phoebe...I thought it might be an obscure question, as some hands are smaller than others, as well. It's worth a try...


Vicki
mom of Katie, the most courageous young lady I know

 
Old 02-24-2004, 05:21 PM   #112
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Re: SEIZURES HAPPEN AROUND YOUR PERIOD?? good news for you!

Thanks so much for the response... I bought peanuts and started eating some today. I think I will be cautious with how many I eat... I am trying to loose weight before my wedding. I am so anxious to see my neurologist tomorrow- Hopefully we can figure out a good type of progesterone to start me on. One thing that worries me is facial hair. Have any of you that take the natural progesterone found an increase in facial hair? Maybe side effects are different with the natural progesterone.
Thanks so much!
-Becca

 
Old 02-24-2004, 06:48 PM   #113
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Wink Re: SEIZURES HAPPEN AROUND YOUR PERIOD?? good news for you!

No facial hair here. The progesterone is a female hormone so you don't have to worry about the masculine side effects that would come only from an increase in testosterone.

The bad side effects that I have seen is that when you take a lot of progesterone like I do (3-4 lozenges a day in addition to Lupron), you will be tired and not in the mood to do much. I drink a lot of coffee and red bull to stay alert at work which isn't the greatest thing for my body but it is better than having a seizure.

Another side effect is a decrease in sexual desire. It's actually working to my benefit because I don't have a husband or boyfriend right now and I need to focus on work so for now, the less I think about sex, the better!

-Kathy

 
Old 02-28-2004, 08:29 AM   #114
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Re: SEIZURES HAPPEN AROUND YOUR PERIOD?? good news for you!

Well, I went to the neurologist a couple days ago- He won't let me start on progesterone. He said he needs more concrete data that they are occuring at my period and specifically when during my period. He said that will show him if I need estrogen or progesterone. I thought people had said that estrogen causes seizures? Anyways, what this means is that I will need to come off my birth control at some point to see what happens (his words) I know what happens, I've already experienced it... I will go back to having gran mals! He said that if what I'm doing now works, no sense in changing it, but I think if there is something meant to help my condition (like progesterone) I should try it instead of being on more meds that make pregnancy difficult, not to mention side effects!

We can't figure out why my birth control helps so much- I'm guessing it somehow stabalizes my hormones. I am thinking about looking into Avlimil- It too balances hormones, and increases libido- I sure could use that help as an added side effect! Any thoughts on any of this?

Thanks for the response- I'm happy to hear progesterone doesn't give you facial hair... sure wish I could try it!
-Becca

 
Old 02-28-2004, 06:29 PM   #115
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Re: SEIZURES HAPPEN AROUND YOUR PERIOD?? good news for you!

Have you thought about getting a second opinion? Perhaps an endocrinologist would know more about this stuff. I would ask around until you find someone who knows about this stuff.
-Kathy

 
Old 02-28-2004, 07:24 PM   #116
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Re: SEIZURES HAPPEN AROUND YOUR PERIOD?? good news for you!

Hi Becca,

Before we switched to our Epi from a regular Neuro, he wanted to put Katie (14 at the time) on a low dose of birth control to help with the leveling of hormones and to help make her periods "regular". She has not been regular since she started at the age of 13. She is 28 days, 39 days, 33 days, 36 days, all over the place. We decided not to do it at that point in time, mainly because she had only had her period for one year and she was just too young. We then found out that extra estrogen can cause more seizures. So, we have done nothing. It is 2 years later (she's almost 16 now) and still having seizures around her period, not regular (which is not unusual for girls/women with E) but we (along with the Epi) decided not to opt for the birth control. I have also read that some women who become pregnant, that have E, don't have that many (or any) seizures while they are pregnant because of the change in the hormones. I do know of someone, personally, that became pregnant (with E) and went off of meds and was fine during her pregnancy. She was 30 at the time of her first pregnancy. She went back on meds after the birth. She couldn't nurse the baby tho because of the meds. She has now had her second (age 33) and did just as well. Both children are fine as well, a girl first, boy second.

I would guess everyone is different, and if you want to get more direct and good info I would contact a Neuro-endocrinologist. I agree with Kathy, a second opinion would be a very good idea if you are looking at starting a family soon. I would want to go into a pregnancy knowing all I should know and that I will be well taken care of, no guesses. Good luck to you and your husband...

Vicki
mom of Katie, the most courageous young lady I know

p.s. the reason I know Katie is all of these days with her period, we need to keep track of them so we can hopefully find a pattern...we also track her simple partial and complex partial seizures daily. A woman who has seizures related to her periods is called "catamenial epilepsy". (our Epi told us that)

Last edited by tkdmom96; 02-28-2004 at 07:30 PM.

 
Old 02-29-2004, 10:53 AM   #117
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Re: SEIZURES HAPPEN AROUND YOUR PERIOD?? good news for you!

Hi Kathy and Vicki,
Thanks so much for the help... I do have an appointment scheduled with an endocrinologist, but not a neuro-endocrinologist. My doctor wasn't aware of neuro-end in our city- and this is Minneapolis... Anyways, I think I am ready to come off my birth control- I talked it over with my fiance, and we both feel that now is a good time to try it. It is so weird, though that birth control doesn't seem to cause me to have seizures, it actually helps, but I need to be on a certain kind. It has to be Loestrin- I tried some Ortho-type, but I ended up having more seizures with that... I also think that Depo Provera had controlled my seizures the years that I was taking that. I was also on Depakote at that time...
So do you think the endocrinologist might help? What do you suggest I say/ask... I'm terrible with doctors- I never get my way, they intimidate me... I think sometimes I say things wrong.
Thanks so much for all the help-
Becca

 
Old 02-29-2004, 05:14 PM   #118
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Re: SEIZURES HAPPEN AROUND YOUR PERIOD?? good news for you!

Hi Becca,

I would think you should have a neuro-endo in your area. Minneapolis is a large enough city. We live outside of Milwaukee and the Medical College has some. Do you live near Mayo? I can't picture off hand how far Minneapolis is from Rochester. Do a search on the internet, see what you can find.

A Neuro-endo can offer more specific info relating to the function of the brain and hormones. However, if you can't find one near you, then the endo. should hopefully be able to answer your questions.

I guess I would ask what he/she can do to help regulate your seizures without compromising your pregnancy. Getting a handle on the whole hormone issue. You have to remember one thing...you PAY to see this doctor, ask as many questions as you feel you need to. If the doc seems puzzled by your question, ask if he/she understands what you are trying to say. See if he/she is able to re-phrase your question for you. If the doc is a good listener, he/she should be able to hear what you are asking. If he/she doesn't seem concerned or to take the time you feel you need (or there just doesn't seem to be a connection), time to find another endo. Keep going until you find the right doc for you!

We were with the same neurologist for almost 13 years before we said, we need to do more for Katie. Our Neuro was just too conservative and we knew there must be other options. It was the best move we ever made! AND we still see our old Neuro, in clinic, it is a little uncomfortable...but we are Katie's parents and we needed to make the decision. We are her advocates.

I am happy to hear that you have had luck with BC and your seizures. If Katie should need that down the road, hopefully there will be good options available for her.

Good luck to you and your fiance,
Vicki
mom of Katie, the most courageous young lady I know

 
Old 04-12-2004, 02:51 PM   #119
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Re: SEIZURES HAPPEN AROUND YOUR PERIOD?? good news for you!

Hi, My daughter is 13 and started her period for the first time last year in January. She bleeds all the time! Her seizures have gotten worse since she started. They just started her on a birth control pill, tri-nessa, to help regulate her. This is her second month on them. not any help yet. I do believe her seizures are worse during her period. I had read about the progesterene helping. Her GP said the progesterene had more side effects and wouldn't put her on that. I wonder if the lozenge or cream would help her?
Debbie

 
Old 04-12-2004, 05:58 PM   #120
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Re: SEIZURES HAPPEN AROUND YOUR PERIOD?? good news for you!

Hello. My seizures worsened at puberty. That is common as you know. Estrogen lowers the seizure threshold making one more vulnerable to having a seizure and progesterone raises it allowing you to tolerate more discharges before they affect the surrounding healthy cells. None of this was known when I was that age. I have read posts from many women who do use the Natural progesterone which they say is made from peanut oil. I think the one they use is Progestin. Some eat a handful of peanuts every day for the same reason. I do this myself. They also have said that the Progestin works better than the cream does. I can't say for sure since I never tried it. I will stick to the peanut butter for now. Phoebe

 
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