Catamenial Seizures And Progesterone Therapy

[Blossom]

I believe there are more positive healing experiences shared on the forum in one week than I've experienced in 'medicine' in over 15 years. Seriously. Your daughter's story is very beautiful and I'm so grateful you shared it here.

 

[SQu]

Thanks for the update Chelle, and for giving me a great start to the day when I read this! It's wonderful, wonderful news. Especially when it involves a young girl, I hate to see them with estrogen problems. It seems unfair, and like a blight on our future, so it's wonderful when someone turns that around!

 

[burtlancast]

Progesterone stopping on the spot epileptic seizures...
Wow.
Is there anything it CAN'T do ?

 

[chelle86]

I think that the most amazing part to me is how 'simple' (for lack of a better word) the fix is for the seizures. We have spent so much time, energy, and money going to doctors, using detoxes, alternative medicine, diets, you name it .... and all that we needed to know is the place of estrogen dominance and progesterone deficiency in the role of seizure activity. Not even just that, but the difference between oral progesterone and all the other forms along with the importance of thyroid function (regardless of 'good labs') in the synergistic dance of all of our hormones in regulating, repairing and healing our bodies from all of the misinformation we have received for decades!
I'm beginning to think there isn't anything progesterone can't do!!!!
I know that my daughter has a bright future for many reasons, but one of them is because of the shared knowledge here! She has already had opportunities to share her experience of the road to healing with many she comes into contact with, and several girl friends who have many of her similar symptoms ..... nothing we go through is in vain!
Thank you all for your support and encouragement - I pray we can do the same for others here!

 

[chelle86]

I had testing that showed high levels of mercury and cadmium prior to discovering the work of Peat. I opted to focus on diet and hormonal balancing first to get myself in a better physical state. Now that I'm doing much better and have spent time reading everything from Peat that I've been able to get my hands on I no longer feel that the metal issue is really an issue for me after all. As others have pointed out, the body will naturally and safely detoxify itself with the proper environmental input. Diet and hormonal balancing seem to be the input your daughter currently needs. This is just my personal perspective but in light of your daughter doing worse when the detoxification was going on I would at least consider stabilizing the hormonal situation first. To me a Peat inspired approach is a restorative approach and this detox doesn't seem very restorative for your daughter at least at this time. If nothing else the focus on optimizing diet, hormones and metabolism will buy you some time to further research the detox issue. I feel pretty optimistic that an 18 year old person can detoxify readily with a Peat inspired approach and not really require much more than optimal nutrition to do so. This is solely and completely my opinion, I hope you don't mind me sharing it.

Blossom, I was researching some more yesterday (that's what I do every day!) and I came across something Ray Peat said and I thought of your message to me in the quote above .... he said that 'Milk, orange juice, and coffee safely accelerate the removal of heavy metals from the tissues .... 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#heavy_metals

Thank you Blossom -- you had great insight in sharing this with me, and I've continued to find more references in support of it - just wanted you (and others) to know! Keep it up!!

 

[Blossom]

Thanks chelle, I'm glad your research is going well. Ray Peat has so much wonderful information that he has shared. Sometimes it takes a little digging but your sure to find many gems along the way!

 

[chelle86]

Hi everyone -

checking in today cause I need some advice, encouragement, anything really! My daughter has had a rough day of petite mal seizures today (day 3 of her cycle .... 55 days since last cycle) ... we have been eating peat (like every day), upped progesterone 300 mg 3 separate times, done bag breathing, baking soda, thyroid, the works. She was able to sleep 4 hours thanks to all the extra progesterone, however, even upon awaking is still having petite mals every minute to several minutes. We are thankful it hasn't progressed into grand mals today and know she will be fine tomorrow.
My confusion right now is on her blood serum labs ... we get them every 2 weeks or so to track her progress since she's on such high progesterone each day (300mg 2xday) - oral progest e of course - ....... yesterday we got her labs done (but didn't get the results till today, the bad day) ..... although she is on such high dose of daily progest e, her estradiol was 42.2 pg, and her progesterone was 15.3 ng (a ratio of 98 to 1) .... How in the world does her progesterone get so low and her estrogen get so high while on such high doses? I realize she has a lot of re-balancing to do whether it be thyroid adjusting (we are working up her hypothyroid w/dessicated and cynomel, although she gets headaches from the cynomel), eating the raw carrot every day as well as the oj, coffee, gelatin, the works to rid her excess estrogen.
Our biggest problem is figuring out why progesterone tanked from previous lab tests over the last 2 months, and how estrogen could get so high with so much progesterone? Is it just part of the fun of restorative healing?
Trying to be patient, not panic, not be discouraged as we've seen so many wonderful improvements, however on days like this it's not easy!
I would love to hear from you all since you have been on this road longer than we have and you've been invaluable in the past at walking us through this!
Thanks so much -
chelle

 

[chelle86]

[quote="aguilaroja"
It's often the case that boosting one aspect (thyroid, progesterone, others), relieving one excess (e.g. high endotoxin, estrogen, adrenaline, serotonin, histamine, others), or relieving one deficiency (protein, salt, fat soluble vitamin, others) can shift the entire function into restorative mode. Other times, a combination works more effectively.

Grated carrot salad or cooked bamboo shoots to absorb/eliminate gut endotoxin is one thing not mentioned. Please give this a whirl if not already done. My experience is that good quality dried mango makes a good snack. It is part of my rotation.
--
http://raypeat.com/articles/articles/lactate.shtml

I found this quote and it definitely gave me a bit of hope -- as we continue to now support her thyroid and rid estrogen, relieving excesses and deficiencies, we may see other things shifting ... wish it weren't so, but glad for healing :)
Thank you aguilaroja!

 

[aguilaroja]

.. she's on such high progesterone each day (300mg 2xday) - oral progest e of course - ....... yesterday we got her labs done (but didn't get the results till today, the bad day) ..... although she is on such high dose of daily progest e, her estradiol was 42.2 pg, and her progesterone was 15.3 ng (a ratio of 98 to 1) .... How in the world does her progesterone get so low and her estrogen get so high...chelle

Out of curiosity, I did a brief Pubmed search about catamenial seizures. In looking through things quickly, there is little reporting about how high estradiol/estrogen serum levels run in these cases. It could be that I have not seen the more relevant articles yet.

One major question about the reported lab values is: Why is the estradiol level so high? Have you asked the neurologists or endocrinologists you have seen? Is this the common pattern in catamenial seizures even after progesterone application?

Estrogen, in Dr. Peat's view, which in turn was gleaned from Hans Selye, is that estrogen is itself a stress hormone, not "just" a "female" hormone. Is the stress of seizures themselves causing recurring estradiol surges?

If not done recently, it would be suggested to check liver function test laboratories. The liver processes estrogen, and impaired liver function one possibility. Dr. Peat has noted that improving thyroid function, and lowering serotonin burdens, tend to improve liver function

I am not clear on the progesterone form being used. My recollection is that Progest-E was not available in your region and your daughter used a different bio-identical progesterone formulation. You might investigate further about the absorption of that form, including re-testing the lab values.

If the Progest-E is being used, please understand the distinction between sublingual and oral. Rubbing the Progest-E oil into the gums and lips (not literally sublingual, but similar), in my subjective observations, speeds absorption and for some provides reliable absorption.

In the situation being described, one thought may be using a bit of the progesterone in transdermal form. In other cases, since the progesterone release may be delayed the transdermally absorbed substance is released from reservoirs, progesterone levels may be less clear to measure. In your daughter's case, there may be advantage in having progesterone being stored and released through an additional, possibly "reserve" delivery route.
--
http://raypeat.com/articles/aging/trypt ... ging.shtml
"In specific fibrotic conditions, such as cirrhosis of the liver, it is known that glycine and saturated fats can reverse the fibrosis"

http://raypeat.com/articles/articles/th ... ties.shtml
"Excessive serotonin is a major factor in kidney and heart failure, liver and lung disease, stroke, pituitary abnormalities, inflammatory diseases, practically every kind of sickness, at the beginning, middle, and end of life."

 

[SQu]

I hope your daughter is feeling better today, chelle. Early days and setbacks are tough, but you'll get there.

 

[Blossom]

I hope she is feeling better too and I'm happy you found some additional information. Please keep us posted!

 

[chelle86]

Aguilaroja, Thanks for your response as well as going so far as to look up catamenials on our behalf! Sadly, we seem to be forging the trail in the area of catamenial seizures from what has been available to us - her grand mals started almost 4 years ago, and it took us about a year to make the connection that the grand mal seizures were related to her cycle. Prior to that she suffered from periodic petite mals as an immediate result of her kindergarten vaccinations (tested very high in aluminum and mercury). We began with mercury detox (cilantro, chlorella, etc.) which has lowered her heavy metal burden,and although we knew to support her liver during the periodic rounds of detox, it has also contributed to her liver/estrogen overload more.

When we made the cycle connection, there was hardly any information on the subject - even on epilepsy websites! Since then I'm amazed at how much more info is available, little by little, as 'scanty' as it is. Dr. Herzog, Ray Peat and Lita Lee seem to be the only ones that I've come across who have 1/2 a clue about the condition, or admit it exists! Most of what we know has come from my own intensive research, as no doctor we have come across (that we have had access to wherever we are) understands, believes, or admits the connection.

After making the puzzle piece connection of detox to estrogen overload, it took us on the path of overcoming the estrogen overload and trying to decrease it with the use of progesterone.

We made the decision to get her progesterone checked quite some time ago to see whether or not she was even absorbing the topical cream before I came across Ray's studies on the effectiveness of oral progesterone being the most effective. It was amazing to us that after so much time on topical, her progesterone was .5 on day 22 of her cycle ..... made it clear she was estrogen dominant and the topical wasn't working for her -- since starting oral progesterone we have had progesterone as well as estrogen checked 1 - 2 times each month. Right at first, her progesterone skyrocketed, but it has gradually been lower, despite high levels ...... I'm being told it is possible that her liver is getting used to the higher levels and is excreting the extra.

Your question about the high estrogen levels seems to be the key, although we've had to figure that one out on our own as well. Seizures definitely are stress on her body and have been a worry for us for quite some time. The progesterone's 'sedative' effect has been monumental in allowing her body to have some support in a way she's never had before when the estrogen spikes. She has had several 'cycle bad days' where the immediate dosing of high amounts of progesterone every hour has thwarted grand mals, sometimes even completely stopping the petites that lead to the grand mals altogether. Yesterday we thwarted the grand mal, however despite the high amount of progesterone, she still suffered from petites all day - she was able to rest and sleep, which she can't do without the progesterone therapy, but the petites continued through the night into the first part of today. As the day has gone on, she has had fewer and fewer - spanning one every 1-2 hours. Much better and on the upswing.

Thank you for the links on seratonin as well. I have scoured over and over every study, paper and interview that ray peat has written, as he is the main person who 'gets' my daughter's very complicated but now seemingly 'solvable' condition. We have been using a negative ionizer in her bedroom to lower her seratonin as well, and try to avoid foods that contribute to seratonin (pineapple, even melatonin).

Of course, reducing the amount of estrogen burden as a rule is the ultimate goal, and we're praying that all of the info we now have for her support and diet will help her ultimately reach that to where the extra supplementation is not necessary due to her body functioning as it should.

Not until researching ray peat more regarding seizures and estrogen dominance had we understood the 'science' behind the seizures relation to estrogen dominance. We also now understand how much the thyroid plays a part in reducing estrogen dominance and are beginning dessicated and cynomel, let alone the peat diet. We never knew her thyroid was an issue, as all of the tests showed 'normal' according to all the doctors (ob/gyn, naturopaths, etc.).

All of that to say that we have recently been able to get ahold of progest e here, and have been switching over from the progendo micronized progesterone along with vit. e and selenium (1/2 progest e and 1/2 dose progendo right now).

Our road has been a long one, with many facets, but we are confident we have come to the final piece and allowing her body to re-balance as naturally through diet, progesterone and thyroid support is the key. It's just so many pieces and so many 'dominoes' that we have to allow her body to heal as long as that takes.

I know this has been long, but I wanted to address each of your comments, as I appreciate them soooo much! Thank you!

 

[chelle86]

I believe there are more positive healing experiences shared on the forum in one week than I've experienced in 'medicine' in over 15 years. Seriously. Your daughter's story is very beautiful and I'm so grateful you shared it here.

Hi everyone - I can't believe how long it has been since I've had a second to check back in with you all regarding my daughter's catamenial seizures! Time flies, huh? I wanted to give an update to all who were so supportive to me when I first starting sharing and learning with you on here, and hopefully give some encouragement and insight to others who don't know our story.
Very long story short .... since starting my daughter on the Progest E 2 years ago, we have made many other changes to get to where we are today. First of all, I'd like to share that she just went 5 1/2 months without any grand-mal seizures, and 4 1/2 months without petite mal activity at all!!! That, my friends, in itself is an absolute miracle!
We are still using Progest E during the second half of the month as we are still battling a little bit of hormone imbalance (nothing compared to before), and we want to continue to give her all of the support that we can while she continues healing all of the way.
In addition to the progesterone, we found for her situation removing all gluten, grain and dairy was key. I know that everyone is different, every situation and root cause of seizure/migraine and/or pms is unique, so I am just here to share our journey quickly in case it sheds light for anyone else.
We did follow the Ray Peat diet for quite some time and found great results with it. We would see ice cream stop a migraine (which were her pre-cursors to a bad seizure day the next day), and it would also calm down petite mal seizure activity. After a while, however, her response changed and the migraine or seizures would get worse with dairy.
Understanding that healing is a process, we just carefully watched the responses and altered things accordingly. I came across information regarding diets that eliminated gluten and aided in reducing seizure activity, so we began removing that from her diet. Changes were noticeable, but not complete. I kept researching (and praying!!) as I have for many, many years, and found reason to further remove grain. More changes were evident. No more migraines at all! She would still, however, have one day every month-2 months that was full of grand mals in relation to her menstrual cycle, with no response from higher doses of progesterone on those days like we had seen in the past. I later came across studies about dairy and seizures, so we removed all dairy, and no more light daily headache, haven't seen a migraine in months, and like I said earlier, 4 1/2 months seizure free!
She had one set back of a bad grand mal day (on day 1 of her cycle), and when we looked at her diet in the 2 weeks prior, she had one serving of grain/gluten (she's 21 and just wanted to be normal with her friends at a bbq and had a smore!). She also in the same 2 week period had some milk chocolate that she didn't think about, and had some fried yuca at a restaurant (we now realize it was probably frozen and covered in gluten for preservative). With the changes in her hormones that month, it became the perfect storm and wasn't very fun.
The good part about a setback (you have to find something so you don't get discouraged!), was that we were able to pinpoint that the diet really did matter and the changes were working.
For anyone suffering from seizures, progesterone is still very valuable in aiding the body to re-balance hormones in my humble opinion. No matter what illness you are dealing with, I have also learned and firmly believe that your food intake does matter. If you are sensitive to something, the inflammation that can occur can affect all different kinds of things in your body - my daughter is just 'lucky' that hers is her brain.
I look forward to continuing on with you all on this wonderful forum and keeping up to date with things and hopefully can be an encouragement and help to others as well. It's good to be back!

 

[tara]

First of all, I'd like to share that she just went 5 1/2 months without any grand-mal seizures, and 4 1/2 months without petite mal activity at all!!!

No more migraines at all!

Congratulations to you and your daughter!

 

[chelle86]

Congratulations to you and your daughter!

Thanks so much! I needed to hear good reports from others to be encouraged and carry on, so I wanted to be sure to share mine to encourage those who might need it!

 

[PakPik]

I'd like to share that she just went 5 1/2 months without any grand-mal seizures, and 4 1/2 months without petite mal activity at all!!! That, my friends, in itself is an absolute miracle!

Wow, that's amazing!

I'd like to let you know that 2 years or so ago I was VERY encouraged when reading your posts about your daughter. I had been suffering from non stop and mind bending neurological symptoms that only worsened, and your daughter's story was among the most inspiring testimonies to me in that very hard time of my life. I want to thank you and your daughter.

 

[chelle86]

Wow, that's amazing!

I'd like to let you know that 2 years or so ago I was VERY encouraged when reading your posts about your daughter. I had been suffering from non stop and mind bending neurological symptoms that only worsened, and your daughter's story was among the most inspiring testimonies to me in that very hard time of my life. I want to thank you and your daughter.

Hello PakPik! Thank you so much for sharing that with me ..... to know that your struggles are not in vain can be so encouraging! How are you doing now?

 

[PakPik]

After years of extreme daily struggle, I'm doing so much better, praise the Lord! :) My brain is not the prison of my life and my spirit anymore. And like you, I definitely don't think my problems have been in vain, not one bit. In fact the disease has brought lots of blessings to my life, more than I can even count -yes, even though it was deeply hard-. I bet you understand what I mean :)
I send hugs to you and your daughter. You are such fighters. And thanks again!!

 

[chelle86]

After years of extreme daily struggle, I'm doing so much better, praise the Lord! :) My brain is not the prison of my life and my spirit anymore. And like you, I definitely don't think my problems have been in vain, not one bit. In fact the disease has brought lots of blessings to my life, more than I can even count -yes, even though it was deeply hard-. I bet you understand what I mean :)
I send hugs to you and your daughter. You are such fighters. And thanks again!!

So happy to hear that - and yes, I understand completely I don't know how we would have gotten through this with Him!! All things work together, right?! We are seeing the evidence of that hope - keep in touch!

 

[chelle86]

So happy to hear that - and yes, I understand completely I don't know how we would have gotten through this with Him!! All things work together, right?! We are seeing the evidence of that hope - keep in touch!

ooops.....without Him!