Making sense of “Do it yourself medical treatment”

By: Randy Klein
Feb 8, 2020

There are several types of health disorders that can take many years to be diagnosed, or can be very difficult to treat.

It can be very difficult to stand by and wait for the puzzle to be solved. For some people, the puzzle is not solved in their lifetime.

This often leads to a “Do it yourself” medical treatment, which is trying different things until something sticks (makes sense, or works).

This article was designed to explain the steps that many will take to find answers, or how to get treatment.

Research is a critical part to any strategy or plan.

Most people will draw from a common “well” of knowledge, so there is for the most part a “common” way that people will think a problem through. This means that there can be a lot of repeated efforts. Not all ideas are first time ideas.

By not doing proper research, improper assumptions can be made, and this can lead to repeating the failed efforts of others. This can lead to mistakes that can come with serious consequences.

Research leads to further questions, and these lead to answers, and to a plan. The plan has objectives that lead to the desired outcome.

There are authorities who have proven mastery in certain areas, and in some areas, this requires accreditation. With health issues, a formal diagnosis is always made by a medical professional. There are also self-diagnoses that are made by patients and are used to follow a recognized strategy of treatment, but they are not always recognized by the authorities involved.

When the authorities are unable to deliver an answer, the patient will often seek other places to find answers.

Success typically builds on the success of others, and this is discovered through researching what others did and what their results were: did their ideas work or fail? Does it make sense to “reinvent the wheel?”

Ability and skills are not always enough to bring positive results. Determination is key, but determination must be tempered to avoid a stubbornness that prevents success.

Success is built upon many foundations.
– Researching the successful and unsuccessful strategies and efforts of others.
– By learning through experimenting and adapting.
– Becoming part of a group of like minded determined successful people.
– Focus; It’s possible to do multiple things at a time, but most people can’t do it effectively.
– Recognizing and practicing successful strategies and patterns
– Learning how to replicate success through templates to reduce effort.

Every strategy requires a plan, a decision to follow the plan, steps that are followed, an ability to adapt when required to, and a strong focus on reaching the desired outcome.

The desired outcome can change, but it is often about realiging the rest of the steps to match the new outcome. It’s important not to be distracted by what other people are doing. There are many journeys, but they do not all lead to the outcome required.

It’s easy to move from one strategy to another based on the success of others, but are all things equal: are each of the situations really the same? Are the same resources available, and do other factors come into play such as genetics, money, access to special food, money, or to different health professionals for example?

Based on the criteria above, it is very hard to “Do It Yourself.” It is very much the efforts of the many that lead to the success of the one.

Common starting points include:
– Adjusting diet
– Taking supplements (such as vitamins or minerals)
– Natural remedies
– Adjusting their mental state
– Increasing physical activity
– Changing location
– Increasing knowledge of the subject
– Joining groups of people with common issues.
– Reducing stress
– A stronger focus on spirituality
– Positive thinking

The steps taken (to get to the desired outcome) vary from person to person.

Some people are more willing to take risks than others. Risks can have long term costs and benefits. Considering risk must be a part of a long term successful strategy. The goal over time is to find success and to reduce risk.

These tactics may sound familiar to investing, inventing, doing science experiments because they are. There is no template solution to every health condition: it’s very much an experiment and adapting to the answers along the way.

The focus of the article is not to draw attention to the correct solutions for each person, but on the process to finding a way to move forward while the answers are found. Sometimes, the correct answer is found through the efforts of the patient, and it is shared with the doctor with positive results.

I am not a medical practitioner. All information shared is on an “As is” basis. Please feel free to share with friends and family, and in groups.

Be well.

The Edge

* This poem is based on one of my terrifying vivid dreams prior to my Narcolepsy diagnosis

By Daniel Liss

I am standing at the Edge

Looking over into the Never.

Forces calling to me.

I try to resist the temptation to jump,

But the forces are overpowering.

The forces pull me back and back.

I have the feeling of hands.

Hands pushing me to run.

As I near the edge the hands lift my body

I have been thrown,

Thrown into the Never.

Falling, falling, falling through the Never.

The feeling to scream is so overpowering.

I try to scream but no sounds emerge.

My sense of sight has been taken.

I hear voices coming from all around,

Voices from my past.

Voices that have tormented me.

I try to force the voices from my head,

But they are too intense.

Falling deeper, deeper, and deeper into this Never

Pressure building around my body.

The pressure has paralyzed me.

I feel the hands pulling me down faster.

My body goes into a flat spin.

Spinning and falling faster and faster.

The voices continue to torment my mind.

Voices from my childhood past.

I hear the voices of my parents

Disciplining me for things I have done wrong.

I can feel the tears pouring down my cheeks.

I can feel the burning of my eyes,

But I cannot see a thing.

For the wind dried out my eyes.

I still try to scream but no sounds escape my lips.

The force of gravity on my body is so intense.

All of the sudden I feel my body stop.

I am hovering in the Never.

My eyes begin to water

As my sense of sight returns.

The scenery begins to blur

I look and see a vast open space.

Still my body is spinning faster and faster.

I begin falling once again, slower this time.

The spinning begins to slow.

I can see the ground now,

But I am still thousands of feet up.

I am falling faster once again,

But whatever forces brought me here

Want me to see the ground.

For the wind is no longer drying my eyes.

The voices have stopped tormenting my mind

For I now have my sense of sight.

Sounds finally emerge from my lips and,

I let out an ear wrenching scream.

The ground is coming towards me faster and faster.

It is at this moment that I wish I could no longer see.

I try to close my eyes,

But the forces won’t let me.

At this moment I am only feet from my death.

The pain is so great.

I can see the ground now

It resembles a face.

That face is mine.

As I get ever closer the face begins

To talk to me.

It says “This is The Edge to The Never”

As I fall into its open mouth

I awake in my bed in a pool of sweat.

Getting Your Confidence Back

By: Randy Klein

People often think of confidence as arrogance. In my experience, it has been anything but.

Confidence is the ability to feel sure of your actions in the things that you do. It’s not a superpower: being confident is a healthy thing.

Being overconfident, or arrogant is a different thing. It can be a real problem.

It can be difficult growing up being different than everyone else. It can seem that we are alone, or that we just don’t fit in.

We may have our confidence challenged for many reasons:
– Growing up in a difficult family situation.
– Having a physical or mental disability.
– Being smarter than or not as smart as the people around us.
– Living with abuse. 
– Being raised in addiction.
– Having a poor body image (thinking that we are ugly, etc). 
– Being labeled as something we are not.
– Being under-diagnosed or misdiagnosed and not getting proper treatment.
– Being controlled or mistreated by people.
– Losing a job or unemployment.
– Having a failed relationship.
– Losing the abilities we once had.
– Not being recognized for who we are.

I’ve been through several of these things, but they do not define me.

The fact that I have believed a lie in the past, does not determine my future (once I have learned the truth). When the lie became my truth, my truth became a lie.

Having doctors tell me that I was crazy because they couldn’t explain my medical condition didn’t make me crazy. Once I found out the truth, these lies had no strength over me: The doctors were wrong. I’m confident in my abilities and remind myself of what I have accomplished.

My problems were normal for what I had. I don’t have to be normal like everyone else.

The loss of my abilities do not prevent me from succeeding at something else. My idea of success has changed. I choose to focus on that I can still do well, even though they may be different from what I have done.

I don’t have to be like everyone else. I don’t have to be “normal.” I can overcome adversity.

This looks very different to each of us: being successful, confident, and happy.

Being confident becomes a practice. The truth is always there. Keep searching for it: it will change your life.

Feel free to share this article in groups and with other people.

Be well.

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,