Xyrem and I are celebrating our first year together.

*Please note this is Dana’s personal experience with Xyrem. Individual experiences and chosen treatment plans vary per person.

Guest Post by Dana Harel-

On the occasion of the event, I wrote TEN points, insights from the past year. I look forward to sharing them with you.

1. This is not magic. Lower your expectations

Before I started taking Xyrem, I read about people who swore that this drug was a “miracle”. It may be true, but it took time for the miracle to happen. A more realistic expectation to have is that in the initial doses, you might begin to feel better (usually a reduction in your cataplexy episodes). However, you might even feel worse at the beginning; you might feel dizziness, be awake most of the night, etc.

2.  Side effects are individual. Some may pass, some may appear with time

If you read the list of side effects, you’ll probably be afraid to even start taking the medication! Remember that what one person experiences, doesn’t necessarily happen to everyone. Also, remember that people write things subjectively and that there is a tendency to associate every somatic change to Xyrem. If you do experience true side effects, keep in mind that most of them go away with time.  However, some may appear later (for example, potassium deficiency).  Drinking plenty of water can help to reduce some of the side effects.

3. Slow titration. In addition, a higher dose does not necessarily result in a better outcome

Despite the doctors’ recommendations and despite what is written in the leaflet – don’t rush. A rapid increase will cause more side effects and impair your potential to benefit from Xyrem. Although taking it slow is difficult, it is a process which eventually pays off.

Raise your dosage only 0.25g at a time. Don’t jump to conclusions regarding efficacy after only one or two nights. Continue for at least 10 days before you decide whether the change was successful or not.

Remember that your nighttime experience is affected by many things you did throughout the day and night.

Does it take you a long time to fall asleep? Do you sleep for only a short while on each dose? Maybe it’s because your dosage is too high. The aim is to stop at the lowest possible dosage that allows for the maximum optimal result.

4. Finding the right dosage for you – a personal and ongoing process (which can take a year or more)

Even after you’ve reached your “sweet spot”, you might find that you need to change it. The process is personal and affected by your daily routine, your habits, any other medical conditions you might have, etc.

There are people who divide Xyrem into three doses and some who sleep without medication at first and only take Xyrem later on.

Taking just a single dose is not recommended, and neither is taking a different dosage every evening.

Perseverance is the name of the game; get to know yourself and use trial-and-error to learn what your body needs.

5. Use a log-book

Keep track every day of the doses you took, when you went to bed, when you took the first and the second dose, what you ate before bedtime, how many glasses of water you drank (important!), exercise, side effects, narcolepsy symptoms, etc.

This documentation (if not compulsive …) will help you get a long-term, broader and “objective” picture of the effect of the drug on your condition.

6. Do not assume that Xyrem will solve all your problems! Take advantage of this period to engage in other healthy lifestyle changes

As I have written, your sleep quality does not depend only on XYREM. Is the result of many factors: level of daytime activity, stress, nutrition, general well-being and so on.

This is the time to adopt healthy sleep habits. You can improve your sleep by establishing proper sleep hygiene (for example, by not exposing yourself to screens in the middle of the night or between doses), by creating a pleasant sleep environment, by engaging in sports, by investing in proper nutrition, by drinking more water and by finding ways to reduce stress.

The medication won’t work well if the mind is not calm. It’s imperative that you find ways to reduce stress, for example, by listening to relaxing music before going to bed or by taking time in the early evening to write down the things you are preoccupied with or that you need to do the next day.

The use of Xyrem should encourage you to get to know yourself better and to invest in yourself. Use this great opportunity and you’ll enjoy a better quality of life.

7. Remember that this is a process – the effect is cumulative, until stabilization. You’ll enjoy the benefits after a few months. Keeping the goal in mind will help you accept the restrictions more easily.

Yes, especially in the beginning, it sucks. You’re not going to be able to drink alcohol in the evening with friends or eat right before bedtime, and you’re going to have to stick your sleep schedule.

But the better you feel, the less of an effort it will be. You’ll prefer feeling good to eating pizza at midnight. You’ll know it’s just not worth it.

And everything you did before starting the medication can be done with Xyrem, with a bit of a change in attitude. You can travel with it, hang out with friends and –  lucky you! – now you can even probably laugh in public, without finding yourself on the floor!

8. It’s not the quantity, it’s the quality

Do not expect to sleep 8 hours a night, or 4 hours on each dose. For most of us, 6 hours is the average. But those hours include deep, quality sleep.

The usual recommendation of “7 hours of sleep” do not apply to us. If you do want to sleep more, there are few techniques out there that can help you do that. And while they won’t improve the quality of your sleep, for some of us sleeping longer is a goal worth trying for.

9. Doctors don’t  know what Xyrem is

It’s the truth. They will open up Google in front of you, and some will treat it like “a date-rape drug”. As a community, we need to become a source of information for others.

Because many doctors are unaware, it’s imperative that you take responsibility for yourself:  Be sure to report that you are taking Xyrem whenever you get any other medication, supplement or even herb. The interaction effects with XYREM use, unlike other drugs, are not always clear. Each person has his or her own biology, the effect is individual and you are your own best doctor – as long as you act rationally and cautiously.

10. This is a strange drug!

The taste is controversial (I actually find it pretty tasty!)

Sometimes you’ll have a ‘hard night’ with poor sleep comes – that happens from time to time and it doesn’t always make sense.

You may experience some strange phenomena; for example, what I’ve discovered is that if I wake up early in the morning and the drug is still in my system, I tend to be over-emotional. I can cry from the silliest things – and then it disappears and I’m back to myself.

On Xyrem, I noticed that it was easier for me to cope with pain than before and that I can once again experience solid, deep sleep!

Now an episode of cataplexy or a disturbing sleep paralysis makes me feel so bad. I can almost forget that last year it used to be routine!

So despite a challenging year and the realization that Xyrem treats the symptoms and is not a cure, I can say that for me, this drug is definitely a blessing.

LOOK what stupid things I found:

from left to right: A cup with a child-resistant cap, A cup without the child-resistant cap (easier opening), It turns out that these measuring syringes fit perfectly into the cups…

One last thing: Zie-rem, please

Don’t call it “Ksai-rem” or worse – ”Ksi-rem”

 ‘X’ is pronounced as a ‘z’ at the beginning of English words, and ‘y’ is a sometimes vowel that borrows the long sounds of ‘e’ or ‘i’. In this case ‘i’. That is why it is pronounced “Z👁-rem”.

 

 

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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