My name is Rachel, I am 47 years old and live in England with my husband Matthew and our three children. I was a nurse, but now I work from home to take care of my daughter full time.
Our story began 21 years ago when our eldest daughter, Megan, was found to be brain damaged at birth. Her oxygen supply became compromised and as a result, she was left very severely disabled, both mentally and physically, resulting in her needing 24-hour care for the rest of her life.
Of all her conditions though, the cruelest and most distressing of all has been her Epilepsy. There have been points in her life where she had 100 seizures a day, and never has a day gone by with her experiencing less than 10. These seizures are varied in nature, but were all distressing.
For years, she tried various anticonvulsants and cocktails of anticonvulsants, but sadly none really worked. Carbamazepine possibly helped with some, although due to the severity of her seizures, we couldn’t really tell.
In the past, we would travel up and down the country to try to get help, but sadly nothing worth mentioning ever changed for her or us. We had asked for years to try cannabis oil or be put in trials, but were always told that as Megan didn’t understand, she couldn’t content and therefore couldn’t be used in trials. This was heartbreaking.
So fast forward to late summer when I was legally allowed to order CBD oil.
I researched and researched and, to be honest, practically stalked and interviewed anyone and everyone who could give me the tiniest bit of information (HOPE) on the subject, but all the info I could get was from studies due to the law not allowing advice or recommendation.
So at the end, I went out and bought some CBD oil and gave it to her; at first just a few drops, three times a day.
This process was tricky, as she does not swallow well and the taste is strong . ... but Nutella or a homemade organic version worked well when smeared onto the tongue, when getting her to take the oil.
During this time, I decided to dose myself with the same amount. Whilst this dosing is not necessary and was not recommended to me by the sources I had contacted, as a mother I had to be aware of how she felt, as she was not able to verbally communicate.
Right from the start, her body relaxed more and she was clearly more comfortable and less tight. She became more focused and her cognition and responses improved dramatically. Her seizures also improved; they became shorter, her recovery was quicker and some days didn’t even have a seizure.
Megan is now on a dose of around 170/180 mg per day (30+ drops) using the 15% heated CBD oil, and we have been using it for the last six months. I have found that epilepsy can need high doses as per all the studies, although some people, I know of, need next to nothing if their epilepsy is not severe, so it can depend from person to person, but this is the amount we have found works the best for Megan.
A selection of our products
Her seizures are generally down to between 5-10 per day now, as opposed to between 40-100, but despite still cringing at every single one, for us this is marvellous.
We still have some way to go and may have to up the dose a little, but many of the people with epilepsy I’ve recommended Endoca to, now and during my research, have become seizure-free or are having very minimal episodes. Their families are happier and their lives have improved, and other parents and people I know have had success in treating autism, ADHD, PTSD, etc. with it.
I find it shocking that this medicine has not been available for the last 21 years of Megan’s life, and it’s nothing short of cruel that it has been known for centuries to heal, however kept off limits when it has the power to change so many people’s lives.
My husband and daughter are also strong supporters of the benefits of CBD oil and even from my own experience, I could not live without it, as personally it has helped me deal with the anxiety and grief that comes with the territory of being a parent of a child that needs constant care - also now with Megan at ‘that age‘ where hormones add to the storm.
I made it my mission to spread the word about CBD as I am not bound by rules and did not have the luxury of experience when I first began this journey. Whilst Megan is still experimenting and we are tweaking doses here and there, it gives me endless joy to hear the results of other happy families freed from grief and despair. There are now Facebook pages in the UK for CBD epilepsy and CBD parents, etc., where you can get peer support or just reach out and maybe say hi.
We didn’t experience any side effects other than maybe initial sleepiness, but no ‘high’. Due to our usual stressed state, CBD will relax the body. It is a healing plant and not a mind-altering pharmaceutical potion.
And for those who need other meds too, Megan included at the moment, I can advise you to just leave at least two hours, more if possible, between the normal medication and CBD oils, so that the liver can happily process the normal medication first.
This is my experience and I’ve read a lot! Of course, although I’m an ex nurse, I’m foremost a mom and woman and not a doctor, so my words are born from desperation, experience and love.
I would say to all of you who are worried about trying this;
Do it ! do it ! do it !
You have nothing to lose and everything to gain.
Thank you Endoca and the Epilepsy Foundation for your support, as we really needed it ...and from Megan? ...when I asked her what she thought, she signed ‘thank you’ with her good hand and smiled 🙂