Epilepsy Sufferer of 32 Years & Newly Diagnosed – Huh?!

Before my post for today I just wanted to write a brief foreword as I wrestled with whether to post this subject matter or not.  A blog full of negativity is not productive for a reader however therapeutic it may be for the writer, and I do consciously try to avoid writing in that vein.  Additionally, I would like to make a point of expressing how much I respect those working in the neurological sector.  It can’t be easy navigating neurological conditions which, if one doesn’t have oneself is difficult enough, but working and trying to understand an organ in the human body that is so complex makes it a more challenging job than I would be able to undertake.

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As I sat in his office I became more and more unresponsive; quick, one word answers and my eyes were glued to looking at anything but him. I was wishing the appointment would be over.  I knew that if I looked at his kind face and saw as he spoke to me in his personable caring way, my tears may just overflow and never stop.

There has been a significant change over the last couple of months with my epilepsy and it’s felt like I’ve been newly diagnosed for the first time again.

I had the good fortune to read an extremely inspiring story of a fellow blogger and something inside just clicked.  She wrote about her years of not having treatment due to a lack of health insurance and the incompetence of various neurologists that she had seen.  It was the sentence, “Finally, I found a wonderful neurologist that understood and respected what medical approach I was seeking” that made me think, “If she can do it then I can do it.”

As I sat and read, it became abundantly clear I didn’t have those things.  Whilst my doctor was a very pleasant man, I was missing something.  Each appointment was the same; I felt we were just going round in circles and particularly with the negative experience of the lamotrigine, I knew this was the right time to seek someone new.

It happened.  As my regular readers will know, I’m into complementary therapies and have had great success along the way with them in many shapes and forms.  As I typed into Google ‘best neurologists in Washington’, I was inundated with names and wondered how I was going to pick the one.  As I scrolled down, an unusual name caught my eye.  The rest as they say is history.  And it was in his office, that I was desperately trying not to sob.

An Epileptologist, a Neuropsychiatrist and an established author amongst other qualifications, my first visit to his office included over four hours of completing paperwork.  His philosophy?  To treat the mind and body as a whole in order to prescribe the correct drugs and supplements.  I’ve answered more questions than I care to remember and I’ve had more blood taken than a vampire could feed on in a day, but it was worth it for the multitude of tests including vitamin and mineral deficiencies, drug levels, organ function and genetic chemical absorption ability. I also had a four day video and ambulatory EEG and EKG for brain and heart monitoring in order to get as much data as possible about seizure occurrence so that I can get the correct treatment.

I’ve been living with epilepsy for thirty two years and it’s both breathtaking and frightening to me that none of my neurologists took any of these extra steps as part of my treatment.  Of course it’s necessary to account for the developments in research, technology, new drugs etc. but much of this could certainly have been applied over the last ten years at least with regards supplemental testing.  Aside from the research that my family and I have done, I am finally getting the education from my doctor.  My embarrassment was clear when he asked if I knew what simple aspects of my EEG were and I had to mumble an uncomfortable, “No” to the point where he asked, “Has nobody ever gone through any of this with you?” to which I mumbled this time a very self-conscious “No.”

Magnesium, for example, I had absolutely no idea that a deficiency could create seizures.  Why is this not a core blood test for anyone with seizures/epilepsy?   It doesn’t matter how good the anti-epileptic medications are, if there is a lack of magnesium, seizures will likely remain present.

As he continued to talk, the tears I was holding became tears of anger.  How could I and probably thousands of people be suffering and not know about something so basic which could improve our quality of life?  As he began explaining the results of the EEG, I knew there would be some activity showing up but I never guessed that I was having seizures twenty-four hours a day, and on top of that more than one type.  It was a big shock and I suddenly felt like I was a ticking time bomb that could explode at any moment.  I was informed the AED’s, while they do prevent the tonic clonics aren’t benefitting me in seizure control.

I absorbed the information and a deep rooted fear set in as the evening drew on.  As a child I was always petrified to go to sleep at night as I had nocturnal tonic clonic seizures.  That night I felt it again, it was as if I was heading up the stairs to climb into my captain’s bed to undertake the nightly routine of studying the delicate blue strawberries amongst dark green leaves on the paper that lined my walls.  I would listen to my stereo in a bid to trick myself into thinking that there wouldn’t be any seizures in the morning.

That night I was of course fine, but I became aware, ignorance is bliss.

So what now?  With a diagnosis of numerous seizures, daily and nightly; a magnesium and Vitamin D deficiency (let’s be honest who doesn’t have one of those in the Northwest?!); possible hypoglycemia; a mildly underactive thyroid and a few other extras thrown in for good measure, there is a lot to consider.

Next week will see the continuation of this post with more details of what could be vital to your seizure health so tune in!

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6 thoughts on “Epilepsy Sufferer of 32 Years & Newly Diagnosed – Huh?!

  1. Beautifully written Freya. This is the point I am trying to make as well as luckily I was about the same age as you when I stumbled onto these other factors. What I like to call…I found the “light” side. So happy for you that you have found the one person that can educate you on the things you can adjust in your body to try and minimise the stress and seizures. Good stuff.!!! I also found that my Zinc levels were directly affecting and my Gaba. Awesome!

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  2. Very touching for you to share this, Freya. I’m so happy you have found a good neurologist. I’m very grateful that we have crossed paths. Just know that I’m here in solidarity with you and you have a fellow peer you can rely on.

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  3. This is a really brave post, and I’m glad you found a good neurologist. I’ve found that there’s parts of my diet or lack thereof that have triggered seizures and my medication messes with my appetite. I’ve found ways to make a balance but it can still be tricky at times. Stay strong.

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    1. Thank you. It is a sensitive subject but I think it’s something that needs to be talked about in a respectful way. We all deserve the best care but there is that association of not wanting to offend or upset. It’s important to remember doctors aren’t super heroes and therefore can’t tell you absolutely everything. For me,there are necessities and that’s the beauty of all the people that are out there advocating. If you keep your ear to the ground you’ll hear information that your doctor won’t necessarily provide you with. You know your body the best, go with your instinct with what feels right. I’m so pleased you’ve had success with food, it’s one of the biggest seizure influences in my book. Thank you for your positive comments 🙂

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    1. Thank you! It’s scares me to think how many people are out there who could be getting seizure relief if/as their meds are unsuccessful. I hope it encourages people to request these tests and to have the courage to ask. Thank you for your kind comments, I’m glad it’s of help.

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