“A wise man changes his mind, a fool never.”A Spanish Proverb
What is Catamenial Epilepsy?
As you all know I have Frontal lobe epilepsy, I recently figured out that my epilepsy is Catamenial in nature. Catamenial epilepsy is when a woman experiences an increase in seizure activity around her menstrual cycle or different phases of the cycle. For me it’s the beginning phase. It’s crucial for everyone with epilepsy to create a seizure log. I cannot stress this enough. Seizure activity triggers are better identified through doing this. My neurologist and I were able to clearly see this through knowing when my cycles are, seeing when the seizure activity was and even tracking the changes in my mood based off of that. Now I can even anticipate seizure activity. I have drop attack seizures so it’s good to be home and remain safe on some of those more dangerous days.
What the Doctor Ordered for me: Presently I take a diuretic 3 days before my cycle and stop day 1 of my period. As a woman gets closer to her period, you begin to hold fluid. Think bloating etc. Blood volume levels rise, this effects the blood level of the seizure medications you are taking. The diuretic helps manage a stable blood level of your drugs. Please remember to stay well hydrated during this time and take your diuretic in the morning otherwise you’ll be up all night urinating. Even when I take it in the morning it still disturbs my sleep somewhat with the urinating factor. I’ve only been on the diuretic for two cycles now. I’ve seen huge positive changes in PMS and huge stabilization in mood and literally no mood swings however I still had a considerable amount of seizure activity. I did gain so much comfort from not having the mood swings and better sleep that I am willing to continue a few more months on the diuretic to see how it goes, as this is not harmful. I also started the diuretic prior to major med increases so now that medications have been increased perhaps it will all work together perfectly. My neurologist also increased my Topiramate from 200mg all the way to 300mg in two months ( don’t worry I have gone all the way up to 400mg before my body tolerates medication increases well and I am a nurse, I do med increases safely. We found I have extreme depression on Topriamate at levels above 250mg so we decided to stay at 250mg of Topiramate extended release daily for now. I started a new medication called Briviact 50mg daily and I am feeling great on that.
Other Neurologists I have read on online forums that different neurologist have been known to prescribe their patients benzodiazepines ( a classification of drugs having a sedative effect reducing anxiety or seizure activity) during the “phase” in which their patient experiences Catamenial epilepsy. However I personally would not recommend it as these drugs are highly addictive in nature and don’t have an easy on and off quality to them. My neurologist is an Epitologist meaning she specializes in the care of epilepsy as well as having a Phd in Behavioral health. I am not saying that is wrong treatment, it may work really well for others and it could work well for you. Explore all options and ask of course!
Personal changes I made: I switched CBD oil companies. I know in the past I heavily endorsed the company My Soul CBD. I still believe they were beneficial for me as long as they had worked but at some point their oil stopped working for me personally. Even on an increase and I went all the way up to taking 100mg daily. It was no longer helping me for anxiety or seizure activity. I switched to Koi Naturals CBD. I started with a 500mg bottle which is tested for purity and quality it’s 17mg of CBD isolate per 1ml and THC free. It’s much more affordable for me at 60.00- 99.99 a bottle compared to My Soul CBD 65.00 – 149.99 a bottle. They ship right away and there is free shipping as well. For the 4th of July I was able to get their 1000mg bottle that is more heavily weighted at 34mg per 1ml at only 74.99! and free shipping. It’s been so effective for me I have been able to take a range of anywhere between 34mg and 50mg of CBD per day. My Fibromyalgia pain level has been managed anywhere between a 0- 5 on a 0-10 scale which is overall very amazing. I’ve been back to my yoga practice daily and practicing my arm balances again!
I am also using some natural hormone therapy. Wild yam oil from a brand called Progestelle. I cured myself of Poly Cystic Ovary Syndrome without using hormonal birth control through this system and doing liver cleanses years ago. I no longer have PCOS and at one point in my life. (The struggle began at 17 and ended at about 21) I had over thousands of cysts on both ovaries. So this actually works.
I have a pituitary adenoma which is a small tumor located on the pituitary a gland on the brain is responsible for secreting the bodies hormones. The hormones were recently tested and apparently everything was fine but I know my body and given some of my symptoms. I am holding some weight since I had my daughter regardless of activity level and great diet. I have hair loss and some other things that lead me to believe I have an over production of estrogen in my system. Progesterone has an anticonvulsant effect on the body. I know this an a little light turned on in my head. I knew I had to start this therapy or at least try and see how my body reacted to giving it doses of progesterone. It couldn’t hurt. It would be equivalent to hormonal birth control without estrogen and harmful side effects or tremendous weight gain. Remember that the skin the bodies largest organ. It soaks in everything you put on it. Ladies they really get us with the “pink products” the toxic chemicals from the top of our heads down to our toe nails literally. That’s for another day.
I am removing all Xenoestrogens from my household products once again. I don’t use heavy chemical products. Everything I use is organic or natural with the exception of a few minor products here and there. I went out and bought unscented soaps. I am using just magnesium spray as a deodorant for now. Even though I was using EOS natural deodorant it was Lavender based. Many essential oil products like Rosemary, Lavender and Tea tree oil are xenoestrogens chemical compounds that encourage the body to produce excess estrogen. I’ll include some information on those things. I am following the guide that is included with the oil that I purchased. I am following the recommendations for Restless leg syndrome. While I do not have that condition, it’s the only neurological based condition stated in their literature. So I decided to follow that recommendation. I noticed a body fat reduction. My face is becoming narrower once again and my hips, the fat stores from breast feeding are coming off. I haven’t lost any “weight” but I have gotten a few comments from friends asking if I have. So that feels very good.
I have a personal disclaimer about the Progestelle company I do not support any of their personal non-medical beliefs or statements. I do like their product. I just want to make it very clear to you all. They are a bit like Dr. Bronner’s you buy the product because you like it, not because you agree with the statements.
Well that’s it for now guys! I made allot of changes and things are working. Word Press updated their website, while I am loving it. I am having a hard time navigating it and taking part in my usual lay out of blogging.
Follow on IG as Namastehealth._
Here are some great resources for you guys in the links provided below https://www.epilepsy.com/learn/professionals/refractory-seizures/potentially-remediable-causes/catamenial-epilepsy