Catamenial Epilepsy

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.

~ Namaste~

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

https://elevays.com/truth-xenoestrogens-estrogen-dominance/

https://koicbd.com/shop/koi-naturals-cbd-oil/

My new additions to Seizure management.

So what’s all the hype about CBD?

shallow focus photography of cannabis plant
Photo by Michael Fischer on Pexels.com

Everyone is always talking about CBD oil and it’s benefits. You’ll now find it at your local cafe being added to coffees and smoothies; the pharmacy has CBD at the register as edible gummies, oil ,even CBD infused water, smoke shops have it available to be vaped etc.  I always thought it was some hype much like virgin coconut oil. Of course coconut oil works well for numerous things and is a great addition to your beauty regime as well as ingesting it. However, there is this running joke that you can basically use coconut oil for everything, this is where I was at with CBD. I figured it can’t be as helpful as everyone says… until I needed it.

First off let me explain what CBD oil is. CBD is a chemical compound found in cannabis. it’s called cannabidiol. Cannabis is the fancy plant name for Marijuana and hemp, just like bell peppers and tomatoes are apart of the nightshade family. CBD can be extracted from the stalks and seeds of hemp or be extracted from the buds of marijuana. CBD extracted from hemp has little to no THC present. THC is the active ingredient in marijuana that makes you feel high. CBD is legal for purchase and available in most states. In short CBD oil blocks the reuptake of certain neurotransmitters in the brain, allowing the neurotransmitter to be increased in the brain. This increase causes there to be more oxygen supplying the heart and aids in blood flow throught out the body, relieving anxiety and inflammation. Check out http://www.projectcbd.org for the specific neurotransmitters involved.

While CBD is legal and contains just trace amount of THC. You may not want to consume CBD in large quanities if you need to pass a drug test. Some tests maybe sensitive enough to assume that you are using marijuana. I saw something on the news one day that a truck driver was strictly taking CBD oil, he tested positve on his drug test resulting in being fired. I am using CBD regularly at the moment,  I am not currently working as a nurse (due to health reasons) other wise I would seriously need to consider getting a medical marijuana card and making my employer aware of medical conditions just to be safe.

I tried several CBD companies…

Once I was aware of the benefits. I gave CBD oil a shot. My first purchase was from Blue Ridge hemp co. I purchased a headache/stress relief topical roll on, its packed with pure aromatic essential oils.  I found some benefits and relief from my headaches. My headaches are a symptom of Fibromyalgia as well as frontal lobe seizures. I would massage my temple with the roll on and behind my neck and ears. The benefits would last about an hour before my headache would reappear. It was a great relief to experience some break from my headaches without using medication. After experiencing some kind of benefit, I decided to try Thought Cloud’s CBD full spectrum tincture. I found it gave me a feeling of euphoria, like 1 glass of wine kind of good (I rarely drink) and in about 20 minutes that would wear off and my chronic pain would hit me instantly. Concerned that there was more THC in the product than I wanted, I gave the bottle away. Months had gone by when I decided I would try the real good stuff, Charlottes Web is well known and promoted to me by my friends with anxiety disorder. I purchased a bottle from them. I tried the oil on several occasions hoping for some decrease in seizure activity or pain. I found myself awake all night long, not able to sleep. I spoke with someone in the company and they said, their hemp oil does include THC. I quickly stopped using it because I didn’t find a benefit. It increased a choking sensation that is an aura to my frontal lobe seizures. It may be that the THC in the product was interacting with my seizure medication in a bad way.

Aura definition-  preceptual distrubance that is related to epilepsy. It can be an unpleasant, taste, smell or feeling.

After that I was convinced that CBD oil did not work, it was all hype. See! I knew it! A group discussion on epilepsy had several people raving about CBD oil. I was wondering why it doesn’t work for me! I purchased CBD dark chocolate coconut oil from Blue Ridge hemp co. I was taking it along with my seizure medication Toprimate. I found it was helping me quite a bit. The only down side to it was eating chocolate and coconut oil everytime I felt an aura. It is also only 15mg of CBD per tablespoon. It is delicious, if I were you I’d give it a try.

Eventually in need of something that worked a bit quicker and had a higher CBD concentration per serivng, I found a company, out of the blue. Very recently a friend from yoga teacher training posted a picture of My Soul CBD oil on her instagram. She said their oil was tested by a third party to ensure its quality. It’s THC free and with the guarantee of a good quality product, I couldn’t resist. I clicked the link and spun a little discount wheel. I received 10% off my first order. I purchased the peppermint flavored CBD drops in 500mg/ 30ml bottle. Please note that the bottle is 500mg but you are recieving approximately 16.7mg per 1ml.  Simple no gimmic ingredients pure peppermint essential oil, mct oil and of course the best CBD isolate.  I am currently taking 1ml 3 times a day. I am off my seizure medication right now due to having some future EEG testing completed where I need to be drug free. Just know that this product works for me. If you have epilepsy do not go off your medication (as stated above, I have a specific medical reason why I am currently off my meds) or make changes without speaking to your neurologist first.  If CBD oil is already apart of your health regime, I would  certainly recommend giving this oil a try. I have been ridden with anxiety from seizures that caused this choking feeling almost constantly, this product did remove that feeling for me and I am forever grateful. I’ve been sleeping better and feel more relaxed overall.

Do topicals work?

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As mentioned before, I did find relief with my headache roll on from Blueridge Hemp. I think because of the esssential oil combination it is effective. I haven’t found much pain relief or benefit from using the massage oil or the body scrub. This is my personal experience however, If you feel you want to try them by all means do it. They are nice products aside from being CBD. I have a very intense chronic pain issue, it may relieve your sore muscles. It just doesn’t work for me.

Thank you for reading. My intention is to provide my personal opinion of these products and a fair overview on how CBD has benefited me personally. I wish you wellness.

~ Namaste ~

Rescources/ learn more.

Check out http://www.projectcbd.org for lots of great information and comprehensive over view  on the way CBD works in the body.

If you like to purchase some My Soul CBD oil please click on my affilate link https://mysoulcbd.com/?afmc=x2

If you are interested in some great CBD topicals go to http://www.blueridgehempco.com

If you enjoy my blog, give me a follow on instagram @namastehealth._

 

Disclaimer

I am an affliate of My Soul CBD however, I was not asked to review the product by them. I was not sponsored or paid by any of the other products mentioned in my review. As always consult your physican before trying any new supplementation and check for drug/ food interactions with your current medications. Thank you- Danielle