Catamenial Seizures And Progesterone Therapy

chelle86

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Hello

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..... whereas before this it was at .05 ng! Talk about miraculous!!!

After coming across Ray Peat articles in my research, I discovered that the type of natural progesterone (whether in corn oil or vit. E) is critical. Progendo is the only thing available to us locally at this time and the 100 mg. are oral, the 200 mg. can be taken orally or as suppositories. She has been gradually building up her progesterone level with the suppositories and ended up at 300mg/day (dropping from 400mg/day at day 28). The thing that we are having the most difficulty with is understanding the dosage and days of the month to take the progesterone, as well as which method will be most effective. 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 - she was taking 300mg every night ). 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 (two weeks prior her blood serum was at 12.0).... during the seizure activity we upped her progesterone, but it must not have been enough because we were unable to stop them.

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?

One other question that seems to be related to my daughter's condition is to whether or not a heavy metal detox protocol (cilantro and chlorella) could contribute to depletion of progesterone. The last 3 episodes coincided with the previous week being a detox week.

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 -

R.
 

Blossom

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Welcome Chelle! Sorry to hear about your daughter. We have lots of forum members with various experiences and I'm sure someone will have insights to share with you. ;) :welcome
 

Blossom

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I'm truly amazed at the wealth of knowledge on the forum. Many of us use progesterone but the variety of reasons, age differences, health background that all come into play makes a big difference in how each individual chooses to use it. It sounds like your daughter is really lucky to have a parent like you! Hang in there.
 
J

j.

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I read the experience of a woman who took it topically. The progesterone stayed in her fat tissue and slowly reached the bloodstream for 6 months after she stopped, 6 months when she no longer wanted progesterone. That made me think that taking it topically is a bad idea.

I'm not saying that's what happened to your daughter, it's just a reason to consider another route.
 
OP
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chelle86

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Hi J.
Thank you for your insight .... We have definitely seen that for her condition, with the amount of natural progesterone that she needs to take, that the creme is not effective for her ---- she has gained quite a bit of weight from being on the creme, and her progesterone blood serum levels were very very low as if she never even responded to having the creme. Not until we began natural progesterone (progendo, here), suppositories did her blood serum levels begin responding. I wouldn't recommend the creme to anyone who needs large doses for long periods of time.
 
J

j.

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Progendo is natural progesterone from what I read, seems like a good product. My experience of taking micronized progesterone is that it works very well, as well as taking progesterone in vitamin E.

Taking orally works too.

Progest-E is a product that allows you to adjust the dose, since it has only 4 mg of progesterone per drop. The rest is vitamin E to enhance absorption.
 
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chelle86

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Everything that I can find says that progendo is natural, which of course is what we want! I've been reading Ray Peat's (among others) articles regarding the 'debate' as to which method is more accurate/effective - oral or suppository. I have not been able to find what is in progendo (other that micronized progesterone) .... it seems that vitamin e is the right carrier for it .... I just want to know if that is what progendo has or not. I am also at a loss at this point as to whether the oral or suppository form will be more effective. Any thoughts/info on that?

I can't get progest--E where I am, so it will be a while before I can try that out -- actually just found out about it today! So for now, the progendo will have to do until we can figure out which way to administer it and if it will be as effective as the progest-E.

You have no idea how much I appreciate talking to someone about this -- we sure have felt all alone and very much in the dark for a long time. Learning day by day and grateful for God's guidance and bringing people like you to help us along!
 
J

j.

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I get the same immediate effects from both Progest-E and micronized progesterone even without vitamin E (progeffik, which has no vitamin E as far as I know).

I think oral works perfectly well.
 
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chelle86

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J.

Thank you so much! Are you aware of anyone who suffers from the catamenial seizures (related to ovulation and/or right before or during the first part of menstruation)? Hoping the oral will work as well for this condition as it does for you!
 
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j.

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chelle86 said:
J.

Thank you so much! Are you aware of anyone who suffers from the catamenial seizures (related to ovulation and/or right before or during the first part of menstruation)? Hoping the oral will work as well for this condition as it does for you!

One of the myths that Ray Peat debunked was that oral progesterone doesn't work. I wish we had a thread on the forum just about that, but I don't know if we do.

Why not take a fraction orally and see what happens? I say a fraction because the effects could be intense if it's absorbed well.
 

Blossom

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I personally would take oral bio-identical progesterone over progesterone cream if I did not have access to Progest-e. I could tell the difference between an oral progesterone that I took prior to discovering Peat as compared to the same dosage in a tropical progesterone cream. I would think if one were looking for something to act quickly and reliably this would be even more important.
 

HDD

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Welcome chelle86!

Here are a few quotes from "From PMS to Menopause" , Migraine, Varicose Veins, Epilepsy

"The times (premenstrually, in pregnancy, around menopause, in hypothyroidism, for example) when estrogen is high and progesterone is low, are the times of increased incidence of migraines, epileptic seizures, and development of varicose veins."

"Since migraine and epilepsy can be debilitating, I always urge people to use progesterone to get rid of their symptoms, so they can focus on correcting the basic metabolic problems, which usually relate to diet and thyroid function."

Peat gives an example of a woman whose hands were disfigured by gnarled purple blood vessels who took about 30 mg of progesterone every 10 minutes. " After the fifth dose, her hands suddenly ( in a moment when we weren't watching them closely) were transformed into perfectly beautiful young hands. Progesterone's effects can be similarly quick in migraine and epilepsy."

And from raypeat.com-

"If progesterone's antiepileptic effectiveness were not enough (and it is very effective even in irrational pharmaceutical formulations), the fact that it reduces birth defects, and promotes brain development and nerve repair should assure its general use in women with a history of seizures, until it is established that they are no longer "epileptic." Although thyroid, progesterone, and a high quality protein diet will generally correct the epilepsy problem, it is important to mention that the involvement of unsaturated fats and free radicals in seizure physiology implies that we should minimize our consumption of the unsaturated fats. Even years after eliminating them from the diet, their release from tissue storage can prolong the problem, and during that time the use of vitamin E is likely to reduce the intensity and frequency of seizures. Coconut oil lowers the requirement for vitamin E, and reduces the toxicity of the unsaturated fats (see Cleland, et al.), favoring effective respiration and improving thyroid and progesterone production. Endotoxin formed in the bowel can block respiration and cause hormone imbalances contributing to instability of the nerves, so it is helpful to optimize bowel flora, for example with a carrot salad; a dressing of vinegar, coconut oil and olive oil, carried into the intestine by the carrot fiber, suppresses bacterial growth while stimulating healing of the wall of the intestine. The carrot salad improves the ratio of progesterone to estrogen and cortisol, and so is as appropriate for epilepsy as for premenstrual syndrome, insomnia, or arthritis."

http://raypeat.com/articles/articles/ep ... rone.shtml
 

aguilaroja

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I don't think there is a perfect test to know how much progesterone is functionally reaching the cells. I suppose if had to choose one between serum, saliva, and urine testing, I would choose serum. Symptoms are usually a helpful guide, but here the main symptom, seizures, is obvious.

I would suggest stopping the "detox" regimen immediately, unless here is definite proof that lead/mercury/heavy metal exposure is primarily causing things.

If seizures are happening every cycle, and especially if they are severe, please consider using progesterone throughout the cycle. In the short term, seizures are riskier than changing the cycle timing or postponing the cycles.

I'd suggest finding an internet vendor for the Progest-E and having it shipped promptly. Progest-E can be applied to the lips & gums & under the tongue for quick absorption. This may be useful if there is some early warning for the seizure events.

I'd suggest to have your daughter start checking resting pulse and temperature, as a preliminary to assessing thyroid function. Find one of the long lists of low thyroid symptoms, and see how many items on the list fit this situation.

http://www.mayoclinic.org/diseases-cond ... n-20021179

http://raypeat.com/articles/articles/thyroid.shtml
 

charlie

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chelle86 said:
J.

Thank you so much! Are you aware of anyone who suffers from the catamenial seizures (related to ovulation and/or right before or during the first part of menstruation)? Hoping the oral will work as well for this condition as it does for you!
chelle86, :welcome

To me, that tells me this is happening when estrogen is highest. If my assumption is correct that estrogen is highest at that part of the your daughters cycle. Opposing estrogen with progesterone is obviously the correct choice, also supporting the liver with the correct nutrients, protein, sugar, is very critical for the detox of estrogen. Getting enough salt, light, CO2, trying to live as stress free as possible will also help things along.
 

Mittir

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Haagendazendiane and aguilaroja has covered everything.
I know chlorella is very high in iron, which is one of the damaging heavy metal.
I think it is unlikely that a 18 year will have large
amount of heavy metal stored. Even it is there, one needs to follow
a safer way to remove that. I think RP inspired eating will be
more beneficial in the long run.
I remember someone asking RP in an audio interview about
heavy metal detox, particularly mercury. His response was that
vitamin C from regular food inactivate heavy metals .
The damage of heavy metal depends on it's state.
He does not recommend commercial vitamin C, he thinks
there is heavy metal contaminants in commercial vitamin C.
He also does not recommends large dose of supplements like
vitamin C or glutathione in unphysiological dose.These can be harmful.
Here is a quote on heavy metal from peatarian site.
Heavy Metals
Milk, orange juice, and coffee safely accelerate the removal of heavy metals from the tissues. Everyone's body accumulates PUFA's, which progressively interfere with metabolism and raise TSH. Iron, as well as other heavy metals (except for copper) tends to accumulate. Drinking coffee also helps to shift the hormone balance in the right direction.

Raising the body temperature and using chelators can mobilize things, but it can increase the damage they do on the way out. The liver doesn't store toxins for more than a few hours, and coffee enemas are intended to intensely stimulate the liver. Oral coffee lets the caffeine circulate slowly, keeping everything moderately active, and with orange juice, the mobilized metals are kept from injuring things until they are excreted. http://peatarian.com/peatexchanges

In other interview he also mentioned that stored heavy metals like iron and mercury become
harmful when cells are not energized. So everything goes back to good diet, good thyroid
function and energized cells.
Pectin in orange juice causes problem in many people and RP only recommends sweet ripe
oranges, which are low in pectin. You can use other vitamin C rich foods if ripe oranges are not available.
 

Blossom

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My assumption was that you might live in a country where it is illegal to import Progest-e. I know someone who was in that situation and had to use a bio-identical progesterone she could obtain in her home country legally. Progest-e has been far superior for me personally but I think there are some adequate products if you can't obtain Progest-e. The suppository route would also seem rapidly absorbable and effective. The supportive metabolic measures as outlined by the other forum members should help tremendously and be considered an integral part of working through this issue. It's all synergistic imo.
 

SQu

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I feel as grateful for this wise advice as if I was the one who had asked for it. Especially the detox info.
 

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