Rebecca2
02-01-2004, 08:31 PM
Hi,
I am wondering about the side effects from Progesterone- also success stories, has anyone been fully seizure free (from seizures occuring @ period) or do you also continue to take seizure meds as well? Any and all thoughts are appreciated!
Becca
I am wondering about the side effects from Progesterone- also success stories, has anyone been fully seizure free (from seizures occuring @ period) or do you also continue to take seizure meds as well? Any and all thoughts are appreciated!
Becca
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crystalw
02-02-2004, 08:33 AM
I don't know of side effects per say. I just started taking the cream this month. What I do know is that you need to have an all natural progesterone cream. The regular ones that you get in most places have all sorts of ingredients including this one called
propylparaben which is know in California to cause cancer. (By the way it's in alot of shampoo's and creams) That's my 2 cents.
propylparaben which is know in California to cause cancer. (By the way it's in alot of shampoo's and creams) That's my 2 cents.
Rebecca2
02-02-2004, 04:39 PM
I don't know of side effects per say. I just started taking the cream this month. What I do know is that you need to have an all natural progesterone cream. The regular ones that you get in most places have all sorts of ingredients including this one called
propylparaben which is know in California to cause cancer. (By the way it's in alot of shampoo's and creams) That's my 2 cents.
Did you start on your own or with your Doctor prescribing it? I found natural progesterone on the internet. Also- did you stop taking birthcontrol? I'd love to hear more about how it is working for you. Do you still take anti-seizure meds?
Thanks for the response!
-Rebecca
propylparaben which is know in California to cause cancer. (By the way it's in alot of shampoo's and creams) That's my 2 cents.
Did you start on your own or with your Doctor prescribing it? I found natural progesterone on the internet. Also- did you stop taking birthcontrol? I'd love to hear more about how it is working for you. Do you still take anti-seizure meds?
Thanks for the response!
-Rebecca
crystalw
02-02-2004, 11:56 PM
I'm not on birth control. ( I don't need it because I had a partial hysterectomy) I still have my ovaries ---thus the hormones and the hormonal cycle) I spoke to my neuro but he said he didn't deal with it. I'm sure my other doctor will but I was sick the last time and missed the appt. I go this Friday morning. After several months of tracking them I was sure that they were affected by hormones. (my migraines were) So, I went to the health food store and temporarily got a cream. It's not natural but it should help. This is the week the seizure is due. The 1st - 5th according to my calculations. I can tell I'm hormonal. I felt kind of stare-y before I started using it on Saturday. I feel better now so maybe it will keep me from having one. I'm going to ask my family doctor for a progesterone pill maybe. Instead of the cream. I'll see what he says. I have been weaning off the meds. They don't help my seizures anyway.
mommajessibelle
02-03-2004, 01:09 AM
What kind of dr do ya'll see for this? I have questioned my neuro about it and she say's she doesnt know anything about treating me. I'm not on any meds and haven't been for quite some time. Any info would be great. Thanks Jessie
crystalw
02-03-2004, 11:46 AM
What kind of dr do ya'll see for this? I have questioned my neuro about it and she say's she doesnt know anything about treating me. I'm not on any meds and haven't been for quite some time. Any info would be great. Thanks Jessie
:wave: Your Gyn or my family doctor will prescribe it I'm sure. Maybe a seizure specialist....I haven't seen them yet.
I see that you are not on meds but if someone else reads this it's important that they DEFINATELY DO NOT WEAN OFF YOUR MEDS WITHOUT YOUR DOCTOR. I don't have typical shaking seizures and I'm working with my doctor. Crystal
:wave: Your Gyn or my family doctor will prescribe it I'm sure. Maybe a seizure specialist....I haven't seen them yet.
I see that you are not on meds but if someone else reads this it's important that they DEFINATELY DO NOT WEAN OFF YOUR MEDS WITHOUT YOUR DOCTOR. I don't have typical shaking seizures and I'm working with my doctor. Crystal
Rebecca2
02-04-2004, 10:42 PM
What kind of dr do ya'll see for this? I have questioned my neuro about it and she say's she doesnt know anything about treating me. I'm not on any meds and haven't been for quite some time. Any info would be great. Thanks Jessie
I actually talked with my nurse who then talked with my neurologist. Everything has been done via the phone, but he did say that if I track my seizure activity, I could start on progesterone. I assume that means he would be the one to prescribe it. I just switched neurologists. The first one I had really didn't know much about my tyoe of seizures (having them mostly during my period) I guess she just didn't know much about how hormones impacted it for me. I also talked with a gyno but that didn't really help either, because then she said she didn't know much about seizures (or specialize in that) I believe there actually is some sort of specialist in both areas (hormones and seizures) I just don't know what the title is. I also want to mention that it may take some searching to find the rigt neurologist to help with this type of epilepsy. It has been my experience thus far that this seems to be a new "discovery" for women with E. So I don't think many neurologists are all too knowledgable unfortunately.
-Rebecca
I actually talked with my nurse who then talked with my neurologist. Everything has been done via the phone, but he did say that if I track my seizure activity, I could start on progesterone. I assume that means he would be the one to prescribe it. I just switched neurologists. The first one I had really didn't know much about my tyoe of seizures (having them mostly during my period) I guess she just didn't know much about how hormones impacted it for me. I also talked with a gyno but that didn't really help either, because then she said she didn't know much about seizures (or specialize in that) I believe there actually is some sort of specialist in both areas (hormones and seizures) I just don't know what the title is. I also want to mention that it may take some searching to find the rigt neurologist to help with this type of epilepsy. It has been my experience thus far that this seems to be a new "discovery" for women with E. So I don't think many neurologists are all too knowledgable unfortunately.
-Rebecca
ritamymom
02-11-2004, 04:18 AM
Hi Rebecca
You may want to check out the thread "Seizures happen around your period, good news for you".
I take progesterone lozenges and also have been receiving Lupron shots since September of 03'. I was averaging a grand mal seizure approx. every 12 days. I recently went 75 days without one. It is a miracle and I am so happy I found a Neuroendocrinologist (that would be the doctor to see) who deals with E and hormones. Granted, I am not completely seizure free (YET!) but god willing I will go longer and longer periods of time between seizures and regain a normal life.
I was skeptical about the Lupron shots after all the negative press but, it has been the best thing I have done! I am thrilled.
Please feel free to ask me any questions you may have regarding this issue and I will do my best to answer them.
R
You may want to check out the thread "Seizures happen around your period, good news for you".
I take progesterone lozenges and also have been receiving Lupron shots since September of 03'. I was averaging a grand mal seizure approx. every 12 days. I recently went 75 days without one. It is a miracle and I am so happy I found a Neuroendocrinologist (that would be the doctor to see) who deals with E and hormones. Granted, I am not completely seizure free (YET!) but god willing I will go longer and longer periods of time between seizures and regain a normal life.
I was skeptical about the Lupron shots after all the negative press but, it has been the best thing I have done! I am thrilled.
Please feel free to ask me any questions you may have regarding this issue and I will do my best to answer them.
R
crystalw
02-11-2004, 09:49 AM
My neuro said you have to go to a gynecologist but I'm sure my regular Family Doctor will take care of it. The cream did seem to help this month. No problems at red lights but I'm not sure if I spaced out in the doctors office for a few seconds. (I lost part of the conversation) At least I wasn't driving...Crystal
ritamymom
02-11-2004, 05:33 PM
Hi Crystal
Personally, I do not recommend a gyno for this issue. A gyno is not familiar with Epilepsy, just the issues surrounding hormones.
I would highly recommend seeking out a neuroendocrinologist in your area who is more familiare with neurological disorders as well as hormonal issues.
R
Personally, I do not recommend a gyno for this issue. A gyno is not familiar with Epilepsy, just the issues surrounding hormones.
I would highly recommend seeking out a neuroendocrinologist in your area who is more familiare with neurological disorders as well as hormonal issues.
R
Rebecca2
02-11-2004, 09:55 PM
Thanks so much for the help! I have been waiting and waiting to start on Progesterone- I am on Keppra right now, and it helps, but it makes me sooo tired and very moody. I am anxious to find something that helps with my seizures, but has less side effects. I have tried so many meds, and I either break out in rashes, or I experience unwanted side effects. I know it is better than having seizures all the time, but I'd really love to have the opportunity to feel more like myself...
I think I will talk with my nurse again tomorrow, I just can't wait another 2 weeks until my appointment... My neurologsist sounds like he will prescribe it, but he's been out of the country for over 2 months! He's finally back in town, and I just can't wait anymore...
I have read the postings on the other tread, but I might need to look at them again.. those postings are what really got me started! Thank goodness...
-Rebecca
I think I will talk with my nurse again tomorrow, I just can't wait another 2 weeks until my appointment... My neurologsist sounds like he will prescribe it, but he's been out of the country for over 2 months! He's finally back in town, and I just can't wait anymore...
I have read the postings on the other tread, but I might need to look at them again.. those postings are what really got me started! Thank goodness...
-Rebecca
ritamymom
02-12-2004, 04:27 AM
Becca
Best of luck and please let me know how you make out!
If I can be of any assistance please ask!
R
Best of luck and please let me know how you make out!
If I can be of any assistance please ask!
R
tkdmom96
02-12-2004, 08:16 PM
Hi Rebecca,
I agree with Rita, a Neuroendocrinologist is definately the way to go. They deal much more specifically with hormones and the brain. Our daughter is 15 1/2 and is on Keppra as well as Lamictal. She has not had regular periods since she began them 2 1/2 years ago. She has been on the Keppra for 1 1/2 of those years. Our Epileptologist said that many women with E do not have regular periods. We aren't pursuing this area yet with her. We are in the process of seeing if she is a surgical candidate first. If not, our EP doc will send us to the Neuroendo to try to get a handle on it. Katie has many more "auras" and CP seizures around the time her period is "suppose" to begin. But, since she is not regular, we never know when it will begin. 28 days, 39 days, 34 days, 36 days, 44 days...we tried to find a pattern, no luck.
Good Luck in your search for answers...
Vicki
mom of Katie, the most courageous young lady I know
I agree with Rita, a Neuroendocrinologist is definately the way to go. They deal much more specifically with hormones and the brain. Our daughter is 15 1/2 and is on Keppra as well as Lamictal. She has not had regular periods since she began them 2 1/2 years ago. She has been on the Keppra for 1 1/2 of those years. Our Epileptologist said that many women with E do not have regular periods. We aren't pursuing this area yet with her. We are in the process of seeing if she is a surgical candidate first. If not, our EP doc will send us to the Neuroendo to try to get a handle on it. Katie has many more "auras" and CP seizures around the time her period is "suppose" to begin. But, since she is not regular, we never know when it will begin. 28 days, 39 days, 34 days, 36 days, 44 days...we tried to find a pattern, no luck.
Good Luck in your search for answers...
Vicki
mom of Katie, the most courageous young lady I know
Rebecca2
02-18-2004, 09:51 PM
Hi Rebecca,
I agree with Rita, a Neuroendocrinologist is definately the way to go. They deal much more specifically with hormones and the brain. Our daughter is 15 1/2 and is on Keppra as well as Lamictal. She has not had regular periods since she began them 2 1/2 years ago. She has been on the Keppra for 1 1/2 of those years. Our Epileptologist said that many women with E do not have regular periods. We aren't pursuing this area yet with her. We are in the process of seeing if she is a surgical candidate first. If not, our EP doc will send us to the Neuroendo to try to get a handle on it. Katie has many more "auras" and CP seizures around the time her period is "suppose" to begin. But, since she is not regular, we never know when it will begin. 28 days, 39 days, 34 days, 36 days, 44 days...we tried to find a pattern, no luck.
Good Luck in your search for answers...
Vicki
mom of Katie, the most courageous young lady I know
Good luck to you as well... My seizures are really set in a pattern- I would have a gran mal just about every month, it would be either thursday or friday the week of my period. But, I also know how stress effects me, and sometimes I will have simple-partials on other days, but I'm not sure if they would turn to gran mals if I was off all my meds and birth control. I am just now learning more about my seizures, and for the first time I am more aware of what is happening to me- before I could've had a simple partial, or complex partial and think, "Well... everyone must feel this way." It is great for your daughter to have a mom like you. She will be so much more knowledgable of her seizures than I ever will be.
Thanks for the message-
Rebecca
I agree with Rita, a Neuroendocrinologist is definately the way to go. They deal much more specifically with hormones and the brain. Our daughter is 15 1/2 and is on Keppra as well as Lamictal. She has not had regular periods since she began them 2 1/2 years ago. She has been on the Keppra for 1 1/2 of those years. Our Epileptologist said that many women with E do not have regular periods. We aren't pursuing this area yet with her. We are in the process of seeing if she is a surgical candidate first. If not, our EP doc will send us to the Neuroendo to try to get a handle on it. Katie has many more "auras" and CP seizures around the time her period is "suppose" to begin. But, since she is not regular, we never know when it will begin. 28 days, 39 days, 34 days, 36 days, 44 days...we tried to find a pattern, no luck.
Good Luck in your search for answers...
Vicki
mom of Katie, the most courageous young lady I know
Good luck to you as well... My seizures are really set in a pattern- I would have a gran mal just about every month, it would be either thursday or friday the week of my period. But, I also know how stress effects me, and sometimes I will have simple-partials on other days, but I'm not sure if they would turn to gran mals if I was off all my meds and birth control. I am just now learning more about my seizures, and for the first time I am more aware of what is happening to me- before I could've had a simple partial, or complex partial and think, "Well... everyone must feel this way." It is great for your daughter to have a mom like you. She will be so much more knowledgable of her seizures than I ever will be.
Thanks for the message-
Rebecca