Let’s start off with an introduction. My name is Teresa Rose, and I was diagnosed with Epilepsy over 5 years ago after having several Clonic-Tonics. I have also been diagnosed with having Complex Partial Seizures (and they have no idea how long those have been going on). I never expected something like this to happen to me, and it has affected my entire life. I feel like I have had enough hardships in my life, the last thing I needed was to be diagnosed with another debilitating illness.
I was diagnosed with Hashimoto's when I was 19. I had half of my thyroid gland removed because I had a large tumor (benign thank goodness) and have been on medication because of it for over 12 years. This autoimmune disease as some of you know causes fatigue, body aches, weight gain, cold sweats, hair loss, etc, etc. Now, not only do I have those, but even more symptoms from my seizures and extreme side effects from just about every medication for epilepsy that I have tried. The last one being blisters all over my neck, shoulders, and chest, but I'll talk about that a little later.
My first Clonic-Tonic happened when I was 26. I was the Beauty Stylist at Nordstrom, and it occured where I work! Talk about embarrassing. But, where did this seizure come from? Stress? My home life wasn’t that great at the time, so I tried to pour all of my energy into work. I was REALLY good at my job, one of the only things I'm confident about. Yet, I was financially supporting my boyfriend of over 6 years. Let's add more stress! It turns out, while I was working my ass off (while having these seizures!) he was at home doing my prescription drugs for anxiety on top of his own. Not cool. I finally, FINALLY kicked him out! It's hard to feel like you are good enough when you're permanently sick, and it took a lot of support and therapy to make this happen.
I’m writing my story now because I am tired of feeling like my life is out of control. Because it is! I am on my 4th disability leave. My second leave in one year. I have tried eight different medications since I was diagnosed and I'm starting to think I’m intolerant to seizure medication.
I am starting a new journey with alternative medicine, and I am completely overwhelmed. I am so out of my comfort zone but I am tired of being embarrassed, ashamed, depressed and helpless. I know that others feel the same way (otherwise there would be a lot more blogs and videos devoted to this!). So, I'm putting myself out there. I have to. My life isn’t going to move forward without drastic change. I am beyond scared, but I am also excited about experiencing this with all of you, I need to. So, this is the beginning of my new story, my new journey. And I’m here to share.
My vision is that, through this blog, I can connect with other people who have experienced a similar story, or any story! My mission is to seek out and SHARE as much helpful information as possible, and to create a community of support and understanding for people with Epilepsy, but more specifically: Adult-Onset Epilepsy. I don't know everything, but I want to TALK about this! Why isn't anyone talking?! I hope that you will subscribe to my blog (and my YouTube channel!) which honestly I don't use very often.... I'm a little bit internet shy. I also have an instagram which I am way more comfortable with. Please reach out to me if you have any questions.
Bye for now!
I just watched your first video on YouTube and I also have epilepsy, I still don't know what kind yet I haven't had an EEG test, I have crapy insurance and I have been waiting for them to find me a Dr they will cover for almost 5 months. Anyway, what you said in your video is a very familiar feeling, I am tired of the headaches, forgetting things, the brain shock feelings, being tired most of the time but not sleeping and to add to the seizures I have permanent nerve damage and a very bad spine and have had neck surgery and soon back surgery. I noticed a prop 2 so I am guessing you are from Utah? If so I am too.ReplyDelete
I am sorry! I think that people like us should always be able to get help! That saying, I wouldn't worry too much about getting your EEG, there are so many people that have been told theirs were normal, when they are obviously having seizures. Mine has come out normal many times, it's also come out with spikes. Honestly I think the only reason an EEG or MRI would help is if there is a tumor or blood clot, to see if there is something physical causing it, that if fixed, could stop the seizures. (Our one true wish).Delete
And yes I am from Utah! I have also been on the list for the first FDA approved cbd:thc medication for 2 and a half months, which shows you just how much our votes counted.
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Thank you for sharing! I came across this website while trying to research if I should wean off lamictal and go straight into CBD oil. I have simple partial seizures - psychic , which affects the memory part of the brain. I immediately lose consciousness after losing my vision while experiencing severe de ja vu. Lamictal has kept me seizure free going on a full year, but at the cost of my immune system. Lamictal has caused my immunity to dwindle to the point I am easily susceptible to all viruses around me. Been sick for over two months. Would I rather have seizures or a virus? Kristy the worst decision to try and decide. I really hope CBD oil works once I am completely weaned off lamictal.ReplyDelete
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