amydianne1
08-27-2003, 11:19 AM
Good morning everyone!
I have a question for the ladies, does anyone have seizures FOLLOWING your period? I have complex partial seizures, and they were happening about every 4 weeks. Several of you asked if they were happening during my period, but they weren't so I didn't give it much thought. After getting diagnosed, I was feeling "sedated" from the meds, but was seizure-free for about 8 weeks. Then all of the sudden I had 8 in one day. I wasn't stressed, tired, anything and couldn't figure out why. I realized that this happened the last day of my period.
I have been recording all of my seizure activity since April, and took out a calender and wrote down all my seizures, and then marked when my period was occuring. My seizures were occuring either the week-end immediately after or the following week. I did not have ANY seizures any time other than this time period.
I know that some women have seizures immediately before or during their periods, but am wondering if ANYONE has them immediately following, or have heard of anything like this. It may not be anything, or just wishful thinking on my part, but I am happy that I have finally found a pattern to them.
Thank you so much!
Amy :)
I have a question for the ladies, does anyone have seizures FOLLOWING your period? I have complex partial seizures, and they were happening about every 4 weeks. Several of you asked if they were happening during my period, but they weren't so I didn't give it much thought. After getting diagnosed, I was feeling "sedated" from the meds, but was seizure-free for about 8 weeks. Then all of the sudden I had 8 in one day. I wasn't stressed, tired, anything and couldn't figure out why. I realized that this happened the last day of my period.
I have been recording all of my seizure activity since April, and took out a calender and wrote down all my seizures, and then marked when my period was occuring. My seizures were occuring either the week-end immediately after or the following week. I did not have ANY seizures any time other than this time period.
I know that some women have seizures immediately before or during their periods, but am wondering if ANYONE has them immediately following, or have heard of anything like this. It may not be anything, or just wishful thinking on my part, but I am happy that I have finally found a pattern to them.
Thank you so much!
Amy :)
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maggie39
08-27-2003, 12:38 PM
Amy
What are your seizures like? The reason I ask, I also have the majority of my "seizures" the week AFTER my period too. Now, 20 years after being diagnosed with epilepsy, they are saying I probably don't have epilepsy, but a blood pressure control problem and I'm acually fainting, not having seizures. The two can look very similar. Also, too low BP can cause symptoms besides fainting that could be mistaken for other types of seizures.
I always thought the timing was odd, because if it's hormonal related, it should be happening the week before or during your period. My understanding is that estrogen induces seizures and progesterone inhibits seizures. My understanding is that estrogen is high before and during, progesterone is high after your period, which is why most women would be more susceptible during their period. I'm now in the process of monitoring my blood pressure to see if it goes lower after my period. (I couldn't find anything on the web that discusses that).
What are your seizures like? The reason I ask, I also have the majority of my "seizures" the week AFTER my period too. Now, 20 years after being diagnosed with epilepsy, they are saying I probably don't have epilepsy, but a blood pressure control problem and I'm acually fainting, not having seizures. The two can look very similar. Also, too low BP can cause symptoms besides fainting that could be mistaken for other types of seizures.
I always thought the timing was odd, because if it's hormonal related, it should be happening the week before or during your period. My understanding is that estrogen induces seizures and progesterone inhibits seizures. My understanding is that estrogen is high before and during, progesterone is high after your period, which is why most women would be more susceptible during their period. I'm now in the process of monitoring my blood pressure to see if it goes lower after my period. (I couldn't find anything on the web that discusses that).
KittyMom
08-27-2003, 12:44 PM
Amy dear,
This sounds like a hormonal change causing your seizures. Bring that callendar to your doc and show him/her your activity. Most Neurologists will help you with meds that are designed for that type of "E" but there are some that don't think that is a problem to consider. If you don't get a good responce then go for a second oppinion.
I get an increase in activity from 4 a week to 6 a week when it is "that time". Mine range from before, durring and after.
Please talk to your doc. I don't know what you could find online but I will look while I am searching other things. Let me know.
Are you having seizures still?? I haven't even asked you lately. SORRY!!! I will do some research and see what I can find.
God Bless you and lots of love,
KittyMom
This sounds like a hormonal change causing your seizures. Bring that callendar to your doc and show him/her your activity. Most Neurologists will help you with meds that are designed for that type of "E" but there are some that don't think that is a problem to consider. If you don't get a good responce then go for a second oppinion.
I get an increase in activity from 4 a week to 6 a week when it is "that time". Mine range from before, durring and after.
Please talk to your doc. I don't know what you could find online but I will look while I am searching other things. Let me know.
Are you having seizures still?? I haven't even asked you lately. SORRY!!! I will do some research and see what I can find.
God Bless you and lots of love,
KittyMom
KittyMom
08-27-2003, 12:50 PM
WOW Maggie, good info.
I was talking to a woman just now that was asking me about the very same thing. Just as I got done with writing Amy I got her phone call. Funny!!
She was asking me about passing out as being what I go thru instead of seizures. She said diabetes or low blood pressure or BOTH!! Diabetes runs in my family but I don't have it. Low blood pressure is not my thing because I have mine caught on an EEG...thank GOD!! Not only that but I have CPS and what I do and say can not be mistaken with 'passing out'...ha ha ha.
Anyway, Amy sweetie, you should look into this with your doc. See what he/she has to say.
Let me know....
God Bless,
KittyMom
I was talking to a woman just now that was asking me about the very same thing. Just as I got done with writing Amy I got her phone call. Funny!!
She was asking me about passing out as being what I go thru instead of seizures. She said diabetes or low blood pressure or BOTH!! Diabetes runs in my family but I don't have it. Low blood pressure is not my thing because I have mine caught on an EEG...thank GOD!! Not only that but I have CPS and what I do and say can not be mistaken with 'passing out'...ha ha ha.
Anyway, Amy sweetie, you should look into this with your doc. See what he/she has to say.
Let me know....
God Bless,
KittyMom
amydianne1
08-27-2003, 01:13 PM
Wow, thanks for the quick replies ladies!
I have the full "complex partial" seizures, the deja vu's before-hand, the "out" for a minute or two with the vivid hallucinations and "odd" physical feelings where I will play with my hands, pick at my hair, etc, and then when it's over, the classic seizure symptoms, extreme fatigue & exhaustion, confusion for about 45 minutes to an hour, nausea, etc. I will generally have about 7-10 a day.
I have read that women have these before or during their period, but then after kind of "mapping mine out" was blown away because I realized that they are following a pattern of the week-end or week following.
I don't know if this is just a coincidence or what, and I just realized this last night when I actually just took out a calendar and wrote down all of my seizures that I had documented.
I'm going to take the calendar with me to the doctor and show him all of it, I can't believe I didn't notice this before now, I guess I just knew that it wasn't during PMS or during my cycle, so I really didn't pay attention that much.
Thanks SO much for your replies!
Amy :)
I have the full "complex partial" seizures, the deja vu's before-hand, the "out" for a minute or two with the vivid hallucinations and "odd" physical feelings where I will play with my hands, pick at my hair, etc, and then when it's over, the classic seizure symptoms, extreme fatigue & exhaustion, confusion for about 45 minutes to an hour, nausea, etc. I will generally have about 7-10 a day.
I have read that women have these before or during their period, but then after kind of "mapping mine out" was blown away because I realized that they are following a pattern of the week-end or week following.
I don't know if this is just a coincidence or what, and I just realized this last night when I actually just took out a calendar and wrote down all of my seizures that I had documented.
I'm going to take the calendar with me to the doctor and show him all of it, I can't believe I didn't notice this before now, I guess I just knew that it wasn't during PMS or during my cycle, so I really didn't pay attention that much.
Thanks SO much for your replies!
Amy :)
maggie39
08-27-2003, 01:50 PM
Amy - your description does sound more like seizure than fainting, especially if you are "confused" after. Maybe you have a hormone imbalance - my sister recently had her hormone levels checked and found out she's producing almost NO progesterone. Something like that could certainly leave you more susceptible to seizures. That must be exhausting having so many clumped together! I really hope your doctor can find out why!
Maggie
Maggie
amydianne1
08-28-2003, 11:10 AM
Thanks for the input Maggie! I'm hoping that my neuro can find some sort of connection. I took out a calendar and mapped out all seizure activity I had experienced since April and then marked the dates of my periods on there, and EACH "round" of seizures started either the week-end after or the following week, which is when your body aparently is producing estrogen? They have gotten much worse during the last several months, and I am hoping that MAYBE I have found some sort of connection! I am going to take all of this to my doctor's appointment next week.
simeone
10-30-2003, 03:04 PM
Hi there:
I also have my partials seizures after my periods about two days after the first day I get 2 partials, the next day I get 6 partials, and the next I get 3 partials and then the next day I get 1. Then it's finish till the next period.I am on 250mg of dilantin and 50mg of topomax and it does not help.I know that some people take logenges. Do you buy this product at any pharmacy. I just need some help on this. Thank You.
I also have my partials seizures after my periods about two days after the first day I get 2 partials, the next day I get 6 partials, and the next I get 3 partials and then the next day I get 1. Then it's finish till the next period.I am on 250mg of dilantin and 50mg of topomax and it does not help.I know that some people take logenges. Do you buy this product at any pharmacy. I just need some help on this. Thank You.
amydianne1
10-31-2003, 12:02 PM
Hi Simeone-
Thanks for replying :)
Your pattern is about the same as mine, Right now I am trying a cream called Progestone that you can just buy over the counter.
I spoke with my pharmacist about this and she said that it won't make the seizures worse, so it's not going to harm anything. One thing that it is used for is to help PMS, so it's something that is commonly used, so I'm going to use it and see what happens. When I see the new doctor in Decmeber, I'm going to talk to him about it. But, I have started using it this month so we'll see how it works, I'll keep you posted!
Amy :)
Thanks for replying :)
Your pattern is about the same as mine, Right now I am trying a cream called Progestone that you can just buy over the counter.
I spoke with my pharmacist about this and she said that it won't make the seizures worse, so it's not going to harm anything. One thing that it is used for is to help PMS, so it's something that is commonly used, so I'm going to use it and see what happens. When I see the new doctor in Decmeber, I'm going to talk to him about it. But, I have started using it this month so we'll see how it works, I'll keep you posted!
Amy :)
simeone
11-01-2003, 12:07 AM
Hi Amy
Thank for the reply I will try progestrone cream and see if works for me.I will keep in touch and I hope will too. Take Care of Yourself and Thanks Again.
Thank for the reply I will try progestrone cream and see if works for me.I will keep in touch and I hope will too. Take Care of Yourself and Thanks Again.
AliAyson
11-03-2003, 04:53 PM
Hi Simeone-
Thanks for replying :)
Your pattern is about the same as mine, Right now I am trying a cream called Progestone that you can just buy over the counter.
I spoke with my pharmacist about this and she said that it won't make the seizures worse, so it's not going to harm anything. One thing that it is used for is to help PMS, so it's something that is commonly used, so I'm going to use it and see what happens. When I see the new doctor in Decmeber, I'm going to talk to him about it. But, I have started using it this month so we'll see how it works, I'll keep you posted!
Amy :)
Amy,
My pattern is very similar. Although I'm vulnerable during my period also. I've found I need to be very careful from the time I start my period to at least 7-8 days after the first day (that is, if my period lasts for 5 days I'm still vulnerable for another 2-3 days). I started taking a progesterone only birth control pill in the hopes that it would help. It hasn't. However, I recently read somewhere that the progesterone (progestin) in the Progesterone only birth control pill isn't metabolized as "normal" progesterone is. This same article said that Natural progresterone cream is much more effective for seizure control. I'm going to start using the progesterone only cream during my period and a few days after...I'm hoping it helps. If you don't mind, could you share your success (or not) with the progesterone cream? Thanks...
-- AliAyson
Thanks for replying :)
Your pattern is about the same as mine, Right now I am trying a cream called Progestone that you can just buy over the counter.
I spoke with my pharmacist about this and she said that it won't make the seizures worse, so it's not going to harm anything. One thing that it is used for is to help PMS, so it's something that is commonly used, so I'm going to use it and see what happens. When I see the new doctor in Decmeber, I'm going to talk to him about it. But, I have started using it this month so we'll see how it works, I'll keep you posted!
Amy :)
Amy,
My pattern is very similar. Although I'm vulnerable during my period also. I've found I need to be very careful from the time I start my period to at least 7-8 days after the first day (that is, if my period lasts for 5 days I'm still vulnerable for another 2-3 days). I started taking a progesterone only birth control pill in the hopes that it would help. It hasn't. However, I recently read somewhere that the progesterone (progestin) in the Progesterone only birth control pill isn't metabolized as "normal" progesterone is. This same article said that Natural progresterone cream is much more effective for seizure control. I'm going to start using the progesterone only cream during my period and a few days after...I'm hoping it helps. If you don't mind, could you share your success (or not) with the progesterone cream? Thanks...
-- AliAyson
amydianne1
11-04-2003, 02:19 PM
Hello...
Just wanted to share with you guys my "progress" so far with the cream....
What I am using now is a cream called "Progestone". The way I am using it is I start 7 days before my period starts, applying it morning and then again at night. (I use anywhere from 1/8 to 1/4 teaspoon per application). I use it for a total of 14 days. (There should be a leaflet that comes with it that shows you the different areas of application).
I started my period a week ago Monday....so far, no seizures (YEAH!!!!). I don't want to get my hopes up TOO much because I won't be "out of the woods" so to speak until the end of this week. But, so far so good. My seizure pattern the last three months has been the same, I am starting my seizures anywhere 3-5 days after the first day of my period, so I'm past that stage now, so I am VERY happy about that. In the past though, they have started anywhere up to 10 days after I start, so I'll feel more relieved after I get through this week!
I will keep all of you posted on how the rest of the week goes, but so far so good! I am praying that this is the connection that I have been missing, and hopefully between that and my Lamictal I can finally get my seizures under control!
Hugs to you all,
Amy :)
Just wanted to share with you guys my "progress" so far with the cream....
What I am using now is a cream called "Progestone". The way I am using it is I start 7 days before my period starts, applying it morning and then again at night. (I use anywhere from 1/8 to 1/4 teaspoon per application). I use it for a total of 14 days. (There should be a leaflet that comes with it that shows you the different areas of application).
I started my period a week ago Monday....so far, no seizures (YEAH!!!!). I don't want to get my hopes up TOO much because I won't be "out of the woods" so to speak until the end of this week. But, so far so good. My seizure pattern the last three months has been the same, I am starting my seizures anywhere 3-5 days after the first day of my period, so I'm past that stage now, so I am VERY happy about that. In the past though, they have started anywhere up to 10 days after I start, so I'll feel more relieved after I get through this week!
I will keep all of you posted on how the rest of the week goes, but so far so good! I am praying that this is the connection that I have been missing, and hopefully between that and my Lamictal I can finally get my seizures under control!
Hugs to you all,
Amy :)
simeone
11-09-2003, 08:54 PM
Hello...
Just wanted to share with you guys my "progress" so far with the cream....
What I am using now is a cream called "Progestone". The way I am using it is I start 7 days before my period starts, applying it morning and then again at night. (I use anywhere from 1/8 to 1/4 teaspoon per application). I use it for a total of 14 days. (There should be a leaflet that comes with it that shows you the different areas of application).
I started my period a week ago Monday....so far, no seizures (YEAH!!!!). I don't want to get my hopes up TOO much because I won't be "out of the woods" so to speak until the end of this week. But, so far so good. My seizure pattern the last three months has been the same, I am starting my seizures anywhere 3-5 days after the first day of my period, so I'm past that stage now, so I am VERY happy about that. In the past though, they have started anywhere up to 10 days after I start, so I'll feel more relieved after I get through this week!
I will keep all of you posted on how the rest of the week goes, but so far so good! I am praying that this is the connection that I have been missing, and hopefully between that and my Lamictal I can finally get my seizures under control!
Hugs to you all,
Amy :)
Hi There:
I AM VERY GLAD FOR YOU. THIS IS VERY GOOD NEWS.
Where I live I cannot buy progestrone cream over the counter. I have to go see the doctor.This month after my periods I had no partials seizures, the only thing I did different I increase my activities and stop eating bagels. So I hope that next month it will be no partials again. Well Take Care And Keep In Touch.
Just wanted to share with you guys my "progress" so far with the cream....
What I am using now is a cream called "Progestone". The way I am using it is I start 7 days before my period starts, applying it morning and then again at night. (I use anywhere from 1/8 to 1/4 teaspoon per application). I use it for a total of 14 days. (There should be a leaflet that comes with it that shows you the different areas of application).
I started my period a week ago Monday....so far, no seizures (YEAH!!!!). I don't want to get my hopes up TOO much because I won't be "out of the woods" so to speak until the end of this week. But, so far so good. My seizure pattern the last three months has been the same, I am starting my seizures anywhere 3-5 days after the first day of my period, so I'm past that stage now, so I am VERY happy about that. In the past though, they have started anywhere up to 10 days after I start, so I'll feel more relieved after I get through this week!
I will keep all of you posted on how the rest of the week goes, but so far so good! I am praying that this is the connection that I have been missing, and hopefully between that and my Lamictal I can finally get my seizures under control!
Hugs to you all,
Amy :)
Hi There:
I AM VERY GLAD FOR YOU. THIS IS VERY GOOD NEWS.
Where I live I cannot buy progestrone cream over the counter. I have to go see the doctor.This month after my periods I had no partials seizures, the only thing I did different I increase my activities and stop eating bagels. So I hope that next month it will be no partials again. Well Take Care And Keep In Touch.
HelloKathy
11-10-2003, 03:41 AM
Hey ladies,
Just wanted to give to tell you about my personal experience with natural progesterone cream- My seizures are directly linked to my period. I have them the day before and the days during my period. I will occasionally have them when I am ovulating as well. I tried the over the counter progesterone cream and it helped but did not completely eliminate my seizures. The only thing that has completely stopped my seizures is natural progesterone lozenges. My doctor orders them and they are made custom made in a pharmacy in Boston and mailed to me each month. I take them for the last 15 days of my cycle and also use 1/4 tablespoon of cream everyday. The results have been wonderful so far. If you think that the cream might be right for you, I highly recommend the lozenge. It is much stronger and more effective than the cream alone. The cream helps but I think that it is meant for more minor hormonal problems like hot flashes or pms. Good luck!!!
Kathy :wave:
Just wanted to give to tell you about my personal experience with natural progesterone cream- My seizures are directly linked to my period. I have them the day before and the days during my period. I will occasionally have them when I am ovulating as well. I tried the over the counter progesterone cream and it helped but did not completely eliminate my seizures. The only thing that has completely stopped my seizures is natural progesterone lozenges. My doctor orders them and they are made custom made in a pharmacy in Boston and mailed to me each month. I take them for the last 15 days of my cycle and also use 1/4 tablespoon of cream everyday. The results have been wonderful so far. If you think that the cream might be right for you, I highly recommend the lozenge. It is much stronger and more effective than the cream alone. The cream helps but I think that it is meant for more minor hormonal problems like hot flashes or pms. Good luck!!!
Kathy :wave:
AliAyson
11-10-2003, 05:12 AM
Kathy,
Thanks for the information. When you say "your doctor" orders them, do you mean your neurologist or your gyn? Also, how did you get them "custom made"??? Did you get some sort of test done to see what your hormone levels were?
I'm very interested in pursuing the progesterone lozenges as I'm not sure the cream will completely do the trick for me. However I have no idea how to go about this. My gyn will definitely be more open to this then my neuro (who only wants to prescribe AED meds..).
-- Alison
Thanks for the information. When you say "your doctor" orders them, do you mean your neurologist or your gyn? Also, how did you get them "custom made"??? Did you get some sort of test done to see what your hormone levels were?
I'm very interested in pursuing the progesterone lozenges as I'm not sure the cream will completely do the trick for me. However I have no idea how to go about this. My gyn will definitely be more open to this then my neuro (who only wants to prescribe AED meds..).
-- Alison
amydianne1
11-10-2003, 03:44 PM
Hello everyone....
Just wanted to follow-up with you and let you know that I have now done the Progestone cream for 14 days and I have not had a seizure...I have not been "seizure free" this long as far back as I remember! I'm so excited, I will however feel more comfortable after another month of it. But so far, so good! The cream has worked wonders for me. The kind I used is just an over-the-counter progesterine cream called Progestone.
I too am interested in the lozenges, I have had luck with the cream but am also interested in following up on that.
Thanks everyone for your input, I appreciate it so much!
Amy
Just wanted to follow-up with you and let you know that I have now done the Progestone cream for 14 days and I have not had a seizure...I have not been "seizure free" this long as far back as I remember! I'm so excited, I will however feel more comfortable after another month of it. But so far, so good! The cream has worked wonders for me. The kind I used is just an over-the-counter progesterine cream called Progestone.
I too am interested in the lozenges, I have had luck with the cream but am also interested in following up on that.
Thanks everyone for your input, I appreciate it so much!
Amy
HelloKathy
11-15-2003, 03:30 AM
I see a neurologist named Andrew Herzog. He may have some articles about his research out. He works with a special pharmacy that makes the lozenges. They haven't completely eliminated my seizures but they are a lot less than they were before. I would highly recommend them to any woman who has hormonally related seizures. It's definitely worth a try.
My seizures are complex partial and they only occur in my sleep when my estrogen levels are on the rise. I have a lot of memory loss and confusion from them.
Good luck to you and keep me updated!!
-Kathy
My seizures are complex partial and they only occur in my sleep when my estrogen levels are on the rise. I have a lot of memory loss and confusion from them.
Good luck to you and keep me updated!!
-Kathy