I CAN do it

I was diagnosed with N w/0 C in summer 2014. My daily medication dose was Modafinil (Provigil) 200mg and Adderall XR 40mg. And it worked- I had my life back and I could function. I eventually just learned to deal with the daily ups and downs and resigned myself to these struggles being for the rest of my life.

Fast forward a few years and I’m now a paramedic who had to quit her job on the ambulance because the 24hr/48hr shifts made my life almost unbearable. This is of course because of the N, which of course I couldn’t tell anyone because who wants someone with narcolepsy driving an ambulance? Turns out I CAN do it, and I am pretty damn good at it- I was on the ambulance for 4 years, but I just felt like garbage all the time, even with my medication. So I moved into an emergency clinic 8 months ago and work 12hr day shifts and my symptoms became more manageable. May 15, 2018, is when I started Keto. And today, over a month later, I’m feeling more like a normal person than I ever have before in my life:

-My wakeup time has gone 9 am on workdays and 11 am on days off (both waking up horrible) to 7-7: 30 am while bouncing out of bed and sometimes grilling and meal prepping in my pjs.

-My mental clarity has improved so much that I’ve started studying for the national paramedic certification (the hardest and most prestigious paramedic certification you can get without a Masters or Ph.D.

-My mood has improved so much that I have successfully come off all my antidepressants without any side effects and actually felt BETTER on Keto without them. I have clinical depression, high anxiety, borderline personality disorder, cognitive OCD, and a history of self-harm and suicide attempts. I’ve never been happier!

-My current N medications include 100-200 mg Modafinil 1-2x EVERY TWO WEEKS. You heard it. No more Adderall needed and I barely need my Modafinil (I still have it on hand in case I have a rough day because of my patients’ lives depend on me being 100%).

-And of course, I lost weight. I never have struggled with my weight and have always been skinny with big boobs. But. Food ruled my life. I almost joined a binge eating disorder group on Facebook because it was so out of control-I just didn’t notice it was a problem until my mental health got better and I was able to recognize it. With Keto, I rule the food, it does not drive me. I have even picked up cooking and grilling, which turns out I love to do!

I could on and on, honestly. I’m still playing around with my food, the times I eat, my supplements, and more recently, my workout schedule. I have a long way to go in terms of finding what works best for me. I have plenty of naysayers in my life but I’ve got an even bigger cheer section, my own voice being the strongest of them all.

 

Elise Marie

 

 

Narcolepsy Friends Around The World

One of the reasons I have been undiagnosed for years is the low prevalence of Narcolepsy in Israel- It is estimated that in Israel there are six people with type 1 Narcolepsy.

When I was finally diagnosed, I did not know a single person with the same problem, so the Facebook groups were my address.

A year ago, I flew to Berlin with my husband, where I met, thanks to the Internet, two lovely people with Narcolepsy. We were four people- Me, my husband, an Arabian nice lady and a nice man who speaks only German. Sounds like the starting of a joke? We had such a great time together and even now we still keep in touch. I won’t forget the excitement I felt and how much we have in common!

I learned that Nuvigil is “Vigil” in Germany and that Rolf is symptom-free for almost 10 years, thanks to Xyrem. Wow. I thought to myself. It is a magic drug?!

I also met a young lady from Norway who travels to Israel sometimes, we keep in touch and I’ll meet her in August.

Back to Xyrem-I read about this treatment and after a few months, I even got a prescription!

I am the second person in Israel who received the drug. I’m the first patient on Xyrem for my doctor. So I had to look for answers and others experiences from…Facebook.

A month ago, a cute girl from the Xyrem Support Group sent me a message, that she and her boyfriend would be visiting Israel soon. On the last day of their trip, we met.

I have to say people with Narcolepsy are special and kind (:

An Israeli woman with her poor husband, one American lady with a very nice man who was born in Ukraine, meet. Time passed quickly and we all have such a great time together! After three difficult months with Xyrem, it is so important to hear, face to face, someone who would say to me, “It was even harder for me and I’m glad I did not give up”. To know that the miracle drug may be a miracle (and maybe not) but it will not happen soon and I should, “take the time”.

I will continue to meet more and more N friends around the world, for me it is very important and completes the beautiful virtual support that I get thanks to Facebook.

Dana Harel,

Israel

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