What the Medical Community Doesn't Understand About Narcolepsy

General Blog
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Here are some of my thoughts on what the medical community doesn’t understand about the effects of narcolepsy as the illness progresses. Most studies indicate that narcoleptics’ symptoms tend to improve as they get older and get on the right medications. Initially, I agree with these studies. Anti-depressants, amphetamine based medications and ADHD medications can help the narcoleptic hold down a job, stay focused in school, stay awake during the day, etc. However, I don’t believe any studies have focused on what happens as the narcoleptic gets older or, in the case of women, go through menopause. I am a living example of someone who was a functioning narcoleptic for many, many years. Taking my medications diligently, holding down a demanding job and keeping my family together through sheer will and determination.

But, something happened to me.

My medications stopped working and I totally freaked out. Then, I tried some new generation medications (like Nuvigil and Xyrem) that made me feel terrible. I was awake but I was fatigued beyond anything I have ever experienced. For years, I knew that in order to keep functioning I would have to “make up” sleep when I got home from work and over the weekends. This strategy wasn’t working anymore.

I started to have daily panic attacks. Panic attacks make you feel like you are on the verge of dying. I hid my symptoms to the best of my abilities until I could no longer face the day. A mixture of severe symptomology and depression shut me down to where I could no longer work. I think my neurologist was scratching her head wondering why I was reporting such severe symptoms when I was clearly trying every medication to help me stay awake, getting better quality sleep with a CPAP machine, exercising, eating right. Perhaps, there is a hormonal component that has not been discovered as yet, but I was completely shut down emotionally, physically and spiritually.

Whenever I thought about my future, I despaired over my limitations. I struggled with guilt and sadness over leaving my job —- a deserter, a quitter — that’s what I am. That’s what I was. I struggled over my relationships with my husband and children. They could see I was getting worse and it made them mad. Why now? Why aren’t you taking care of yourself? What’s the matter with you?

I don’t have the answers. As a matter of fact, I lost about 25 lbs. and was exercising daily while my health started to fail. When I came back from a trip to Europe with my husband and some of my siblings, my whole world view came crashing down around me. I really thought I was dying. (depression?) I couldn’t focus on my work. I was walking around with my eyes closed because they hurt so much. I was always in a brain fog. I dreaded the drive home from work because I didn’t think I was going to be able to stay awake. Maybe I would crash my car into a tree. Maybe I would kill someone and have to live with that for the rest of my life.

Like I said, I don’t have the answers. Does anyone in the medical community have the answers? Is there something I’m missing? I am worse now than I ever was in my entire adult life. Why now? These are the questions that haunt me. Should I be believed by the medical community? Are my symptoms the result of some psychological impairment? Why am I chronically fatigued now? Why do I have to plan a one hour outing to the stores like I’m going on an extended trip? (Making sure I'm rested, that my medication is working properly, etc.) Why do I have to stop what I’m doing and leave the cart in the store when my fatigue sets in — so deep, so intense I actually feel like I am walking in leaden shoes. This is insane. By all accounts, the medical community believes I should be getting better. Well, either they are misinformed or I am a nut. What do you think?

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How frustrating, to be functional for so long and then suddenly find yourself back at square one. The turn-around you are describing sounds so much like what happens at the beginning of one's narcolepsy journey, (mine wasn't too long ago). I can remember the shame, the mind-fog, the anger my partner felt towards me, the panic that set in as my academic life began to crumble, and strongest of all, the uncertainty that made me feel like I'd lost my marbles.

The thing is, I hadn't gone nuts, and neither have you. Trust your experience - it's real. Your struggle is real too; when your world starts to shift, it's natural to stumble. When people get sick, the pieces can start to fall away. What you're going through isn't easy by any stretch, and unfortunately, there aren't any dry-cut solutions.

If it's any consolation, my sleep doctor says that narcoleptics can spend stages of their life in a sort of 'remission', with relapses in between. When symptoms return (or appear for the first time), we have to dig deep and find new ways function and be healthy - that might mean new meds, a new lifestyle, a new job. It's as if you're learning to walk all over again: something to remind your family and support network when the going gets tough.

Take care of yourself, listen closely to (and trust) what your body is trying to tell you, write everything down, and remember that working your way back to good health is priority number one. In time, you'll be back on your feet again.

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Dear Friend,

They are misinformed and you are not a nut! This is an autoimmune disease, something has changed for you. You just have to find out what the change is?

My life story is the reverse of yours. Now I know that I’ve had narcolepsy all of my life, untreated, unaware, and unknown! What I found out recently and looking back over my life everything makes sense to me now. MY mystery is solved.

Please send me a private message and I’ll give you some suggestions on how to unravel the mystery. In brief: Genetic markers, Toxins, nutrition and antioxidants.

Your search is to find out the “autoimmune triggering triad” causing your issues…which may be very different person to person. Please note this is not “medical advice” but a personal philosophy for living a healthier life.

Take a deep breath, don’t give up, there are answers for you!

Ranger

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Thank you so much for your support, comfort and suggestions. It is really appreciated!

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How to Heal and Be Well…

Hello There!

Thanks for responding! I have many of those issues.

  1. A couple of suggestions would be make sure you are getting enough:
    Protein, good fats and oils (I only cook with Coconut oil) Try to stay away from all white sugar, ( I use Wild Flower Honey). Stay away from ALL Gluten (obviously), and all other grains which are not certified organic. Add good organic vegetables - even if you can only afford to buy organic carrots and Kale.

  2. I would also stay away from all corn and corn sweeteners. Stay away from ALL GMO foods!!!

  3. Next listen to your body about what supplements you need to take and when. “Dark yellow urine” might be an indicator of too many Vit’s and Supplements and OR too little water. Also on a regular basis give your body a rest from those every few weeks.

  4. Drink plenty of Good water, get all of the good sleep that you can (I turn off my phone and world - to get any sleep that I can.

  5. Ask yourself “what has changed recently”, what is stressing me out, what outside influences are affecting me negatively? Make the changes you need when you are aware of what is causing a problem.

  6. Pray, be thankful that things are not worse, Count the good things every day. Be kind to your self - first and “don’t over do it for others” - You help others by being healthy and loving yourself first.

I hope some of this helps and maybe one or two points above are something you may be over looking. Make sure you have Kind and Supportive doctors as “advisers”, remember they are not “god”. Keep your faith, trust and prayers in the right place.

You’ll know what to do to turn this around!

Ranger

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Great suggestions! Gluten will be difficult to give since it is in practically everything. One of my nieces has celiac disease so my sister has developed a recipe book that may help with that. We have wildflower honey in the house - my husband loves it and uses it for many maladies. I'll have to give it a try. Thanks for taking the time to write back with such useful information! I really appreciate it!

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Hello,
Another thing to consider that my daughter mentioned. It’s not unusual when making changes to diet or life style to improve for a while and then have “seemly set backs”. Two steps forward one step back. I think this is just the body’s way of healing sometimes. So don’t be discouraged if you experience this it might be a sign that you are actually getting “better”. There is a lot that we don’t understand about how the body heals. But be good to your body is wonderfully made! Speak gentle healing to it!
Ranger

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Ranger --Since you have adapted this diet and lifestyle change, what kind of improvement in your narcolepsy symptoms have you seen? In other words, if you used to sleep for several hours per day or fall asleep while talking to people or at social events, have these symptoms disappeared since adapting this diet and also -- how long have you been on this diet? Thank you.