Community Forum

Low dose natural progesterone

Hi everyone,

So, I'm a 38 yo epilepsy patient, diagnosed at 20 with simple partials that can generalize. I've been through several drugs, unacceptable side effects, gone OFF drugs (3 years, and had simple partial psychic and motor siezures with a brain buzz), and have found that my brains "activity" likes to be influenced by my menstrual cycle since my mid 20's.

Now, I'm in Keppra, it's not completely working, and I'm starting natural progesterone tomorrow! We'll see...

Any other women with catamenial seizures here?

Best,

Lil

Comments

Right now I am 40 and have been fighting epilepsy my whole life. The seizures got bigger when I began menstruation. Like clockwork I would have a variety of symptoms around days 14 and 24 of my period. No seizure medicine has ever worked. I married at 25 and noticed that my seizures got very small when I was on birth control. Once I got off of it they got big again. I didn't have a neurologist who was willing to believe much about what I was saying about the pills controlling my seizures.

In 2004 I got pregnant. I didn't want my kid to have birth defects, so I dropped my latest medicine as soon as I found out. Strangely enough, I had one seizure early on, but never had another one for my whole pregnancy. I believe that the increase in progesterone during pregnancy stopped them. My daughter was born without complications. I breast fed her for 1 year. As soon as I stopped, it was as if my body triggered itself to go back to its old ways. I immediately started having the old seizure pattern again. Crazy right? I still couldn't find a neurologist who didn't try to coerce me into using other drugs instead of trying progesterone.

Today, I just left another doctor's office. This neurologist at least admitted to knowing of the therapy, but didn't know how to do it. I was told to find one of the people who conducted the progesterone studies and get a reference from him. I'll have to track him down I guess. Where are all you guys finding doctors willing to deal in bioidentical progesterone!?

Anyway, I am interested in whether you have found the heath food store or the pharmacy to be more economical? Additionally, has taking progesterone had an effect on whether you can have kids?  Also, exactly what dose of progesterone are you taking and when?  Thanks!

I was just diagnosed 4 years ago with simple left temporal lobe seizures and a unruptured brain aneurysm.  My OBGYN would not give me hormones to help with my ongoing menopause symptoms, I am 53.  She said that it thickens the blood so it could cause the aneurysm to rupture.  Right now they can't do surgery, my HMO (Kaiser) doesn't have a doctor that will do it.  Does anyone know if natural progesterone will thicken the blood? My seizures continue to get worse, haven't found a med yet that I can take.  Any info would be great!

Best,

Julie

Just saw this post recently. Maybe this will help you and be a guide http://www.premenstrualsyndromesupport.com/what-are-the-supplements-of-progesterone.php in choosing natural progesterone.

 

Best regards!

First of all, I've got to ask: when your sz secondarily generalize, do you lose consciousness?? It would REALLY help me if you could let me know. You're the first one who has specifically said that their partials can secondarily generalize, as do mine.

An secondly, yes, I have both in increase in frequency and an increase in severity of sz in the few days before my period and often extending into the first couple of days before my period. I would love to know how you do on the natural progesterone, as I've just recently learned that this can help.

Hi guys,

 New to this site. And just trying to do a bit of research... I'm still in early days of diagnosis. Have been told that my results point towards Temporal Lobe Epiliepsy. (simple partial maybe). I did have a dozen or so grand mal seizures when I was 9 years old, but was never officially diagnosed. Then the 'old feeling' that my seizures were about to happen again when I was 20. (and a half hearted diagnosis then)

But my symptoms are very atypical of this. I am constantly in a 'fog'. Dreamlike experience. Frequent panic attacks, and horrible/depressive thoughts. Not always feeling like I am 'here' and strange sesations in my body.  I have no relief at all, this is a constant 24/7 battle. I can't understand why I don't have specific 'episodes' and then moments of relief. I do have 'episodes' where it is worse than other times though. Have toyed with the thought that there may also be something else playing in the background? Or this is something else.

Anyway, I digress...  My reason for posting was that these symptoms have been steadily getting worse over since June this year. And this is when I came off my contraceptive pill (monofeme). I have been trying to do some research to see if there is any link between the two. And it is really hard to find. Also, Drs tell me that it would be completely unrelated. I don't want to start on the pill again, in case it messes something else up, and also dont want to be on it for life anyway.

Can anyone PLEASE shed some light on this? Should I start using progesterone creams (ie wild yam)? Is there any research out there in regards to ceasing contraceptive pill and seizure occurences? I am desperate more and more each day, living in such a dark place.

 

Temperate,

My 20 yr old daughter has epilepsy. She sees Dr. Herzog in Wellsley MA. He uses natural progesterone therapy with his patients. He is brilliant and very attentitive. Hope this helps.

Yanky

The pattern of your epilepsy sounds so much like mine.

I too, gave up my pills (sodium valporate) when I had children, and gues what-no fits! 

I had the mirena put in, which controlled my fits for so long, but after a year it's like the dose drops slightly, and the fits start to come back at the time my periods would be (I hope this makes sense).

I am going to try natural progesterone, and I have read many forums where it has worked well. My fits coincides with the drop in progesterone, so at the end week in the month, and the first week in the month. I read somewhere that one person used natural cream 2-3 times dailly for about 14 days. I've just booked a period with a neurofeedback too....expensive, but I'm willing to try anything.

 

Did you try natural progesterone?

I have had simple partial seizures (temporal lobe) since I was 23 as a result of a brain cyst  Eventually I had the big one and I was put on Lamictal and phenobarbital (which worked fine, except I still had tons of simple partials based around my period - sometimes a dozen or more a day).

Recently I had a complex partial and decided that somehting needed to change and I did not want to overload my body with more drugs.  So I tried Progest Progesterone cream.

The results are staggering to me.  I am sure the results vary person to person, but for me this has been a tremendous help!  There are many many days when I have none at all - which used to be unheard of :)  I have followed the directions on the package and take some klonopin during the days of my period when they suggest a break from the hormone.  So far it has been just over one month.  Not long, but this is hugely promising to me. 

I hope this helps.  The cream is derived from yams and I found mine in our local natural foods co-op.  Good luck and let me know if anyone has questions :)!

Hi Lil,

Lots of women with hormonal association to seizures. I've been that route too. Progesterone tends to have anti-seizure effects and in some women can really help. Hasn't shown to replace seizure meds yet though. Good luck and keep trying!

Epi_help

Hi Lil,

Lots of women with hormonal association to seizures. I've been that route too. Progesterone tends to have anti-seizure effects and in some women can really help. Hasn't shown to replace seizure meds yet though. Good luck and keep trying!

Epi_help

Hi Lil
I have been taking it for a few years now. Started it because of heat flashes.. on my own. I was always on a very low dose. I would feel all the effects from my perimenapause that I felt I needed alot more of the dose. I was increasing on my own, for I could not get the higher dose from my compound pharmacist. So my neuro suggested to do the very high dose to help with my seizures. I have felt that it helped some just depending how balanced my hormones were at the time. But myself, I would not live without. I dont have to get the effects of perimenapause and I believe my seizures would be a lot worse than they are now.

So is this from your Neurologist suggestion, or you are doing it on your own? What kind of dose are you going to take? Are you taking it because of your seizures or your effects of perimenapause or both? Are you getting it from a compound pharmacist? Is it a cream?

Lisa
http://health.groups.yahoo.com/group/EpilepsyApproach1/
http://www.sleep-safe.co.uk/id90.htm

Hi, I'm very glad to see that someone else is using natural progesterone. My daughter , 19 years old has had serious cluster seizures during her period. Her neurologist did some research and suggested we try natural progesterone. So far, she has not been in the hospital for cluster seizures, although it's only been a month. It is a cream that we get from a compound pharmacy and she uses 200mg three times a day during 13 days of her cycle. Although she has had some breakthrough seizures, it is nothing compared to what she did have. We had tried over the past 5 years that she's been diagnosed eight different kinds of drugs, and nothing has held her for any length of time. So far, it looks as though the progesterone has had some effect.

Well I too am taking the 200mg. I have been taking the cream for about three years now. But about seven months ago I started the high dose from my neurologist. My doctor wanted me to take the prometrium pill. But I believe the cream is better since it goes right into the blood stream, which the pill you wont get the full effect everyday. So I just stayed on the cream that I started with and we increased it. For my pharmacist said that the cream would be better anyway.

I think it helps a lot. I believe I would had a lot more seizures than I am now. Glad to hear your daughter is doing well on it. I wish I had it when I was in my teens going through puberty, many years ago. A terrible time I had, and no choice of meds to choose from at the time.
Best of luck to you and your daughter with the cream.

Lisa
http://health.groups.yahoo.com/group/EpilepsyApproach1/
http://www.sleep-safe.co.uk/id90.htm

Hi,

I also have catamenial seizures. I'm 44 and have had them since I was 15. Mine are complex/partial in the temporal lobe region. I've been on at least 10 to 15 drugs and none of them have worked. The last was Keppra, which turned my complex/partials into grand mals. I've never tried natural progesterone, but I'm going to be talking to my doctor about it Monday morning. I just read a study on here of 25 women with my exact seizure type. 72% of them improved. The average decline in seizure frequency was 55%. I found this study under Catamenial epilepsy: Epilepsy.com/Professionals. I'd be interested to hear from anyone who has had success, or not, with this hormone. Everything I've read so far sounds very positive. I'll keep you posted on what happens.

Thanks,

Peggy

Hi,
Natural Progesterone Cream does work. I have several types of seizures, catamenial being one of them. The older I get, the more I learn that doctors don't honestly know what works. I read about Natural Progesterone in a book by John R.Lee, M.D., and found the cream in my chiropractors office. It has been working for me. It's not the Synthetic Progesterone (which can cause many negative side effects), It is Natural Progesterone Cream (which matches our body's chemical progesterone). Compound Pharmacys carry it. Hope it works for you.
Wreath

Hi PeggyS,
I have complex partial seizures in the right temporal lobe, and I have my seizures when I get my period and when I ovulate. I was diagnosed about 3.5 years ago and have yet to get my seizures under control. My Neurologist told my about a progesterone study that's being conducted at the hospital and that I was a perfect candidate (I have catamenial epilepsy and besides the epilepsy, I'm healthy and I'm not pregnant) so I will be going to see the neurologist who's heading up the study next week for a consult (we've already had one over the phone) and a series of test (EEG, MRI, blood work). I'll be posting my progress and results on my blog, if you're interested.
Thanks!

Peace ~ Jodi

My wife is currently experiencing most of her seizures around her period. She takes a little bit of pregnenolone instead of progesterone.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Check out my chart of alternative epilepsy treatments.

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline