Now we know what causes narcolepsy


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Frighteningly, the article not only doesn’t discuss a potential treatment, the description of the killed cells makes a successful treatment for existing cases more remote. Having a family member with narcolepsy I was hoping for more near-term treatment options.

Perhaps very early intervention can prevent escalation of the severity in individuals and development of the disorder prevented entirely in some cases with genetic screening for susceptibility.

Seems like half the autoimmune disease ‘cures’ out there pretty much use the same sort of pathways.

Cut off TNF-α‎ and the disease goes away…and the ability for dead / dying cells to go peacefully into the night allowing for mutated cells to stick around and multiply. Or you suppress the immune response…pretty much give yourself artificial aids a few times a month and hope no immune system / hyperactive immune system balances itself out. Or sometimes chemo-in-a-pill works…I miss MTX in my diet. Sadly, a mixture of TNF-α‎ blockers and MTX doesn’t stop the big cancer that one can get with this (much to my doctors surprise).

And they all seem to work on just about every autoimmune disease to a good extent, just got to pick your side effects!!!

As for narcolepsy…there has been several treatments already…my favorite is provigil. I mean, I never had this disease, but I do get debilitating times where I just want to fall asleep and not wake up for two days and this is one of the few that works to keep me up without feeling like I’m on crank. I get it off label from a friend after she had seen it work on MS patients. However, its labeled purpose is for narcolepsy and apparently it works well…

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Seems like a great deal of seemingly disparate chronic illnesses and disorders are finding a common source in autoimmune issues (particularly in the gastrointestinal tract/gut-brain-microbiome matrix). While still early, some are thinking it might lead to the “Grand Unified Theory of Chronic Disease, at the very heart of which we will find the gut microbiome” (GUT, appropriately). That line comes from this excellent Michael Pollan article from the New York Times:

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Welcome to the wonderful world of autoimmune diseases! I have a couple (not narcolepsy though) in addition to having a heart attack which may or may not be related. My cardiologist didn’t even want to discuss autoimmune issues saying, "well, there’s nothing you can do about it, " which is pretty much where I’ve been for the last twenty years. Good luck to your family because, needless to say, autoimmune diseases suck wind.

This is probably only the case for the great majority of narcoleptics, who have very low hypocretin levels. In a minority of cases, particularly those which appear to be familial, hypocretin levels are normal. These people may have a hypocretin receptor defect or deficit. Two causes, one disease.

Clifyt: Neurons don’t regenerate (much), so by the time the patient is diagnosed, I doubt there is much we can do to stop the cell death. A drug that mimics hypocretin would be ideal, but we have known that for a while now.

It is interesting you say this…I had my ck levels checked as part of my blood panel work. A week before, I had some chest constrictions and a little pain, but I thought it was stress related. The elevated nature of the ck along with something else led my doctor to believe I had a minor heart attack. My dad had the same autoimmune disease I did and had several heart attacks in his day. He got to the point he stopped worrying if he was healthy and started getting fat because in his mind, it didn’t matter if he was going to drop dead of a heart attack anyways. And then he did.

Have you done any research to see if this might have been related to your autoimmune or if there is any co-morbidity of it the diseases (err…other than people that have autoimmune diseases generally stop taking care of themselves because it hurts too damn much). I’m a little tempted to do some research on this now…

I’d like to begin with a little background. I’ve been out of work for more than I’d like, and of course haven’t had insurance for quite some time. The only thing I knew about pre-heart attack was a history of Reactive Arthritis, a form of Spondylitis, which appears to be in remission knock on wood. In the years since I last had health insurance I’ve had plenty of autoimmune type symptoms: arthritis, weird aches and pains, sensitivity to hot and cold, rashes that come and go, muscle cramps/spasms, EXTREME exhaustion, etc. I always thought it was part of the Reactive Arthritis. Then I had a heart attack earlier this year.

After the heart attack I’ve been lucky enough to get on a local low income insurance plan and decided to see about those symptoms I’d been having for years. Thankfully the day I went to see the in-plan clinic my inflammation levels were high enough to get a referral to a Rheumatologist. He did some tests and diagnosed me with Hashimoto’s Thyroiditis. A discovery which was, while disconcerting that I have another autoimmune disease, exhilarating because all of the symptoms I’d been suffering from for years suddenly fell into place.

Unfortunately, my primary care physician doesn’t agree with the diagnosis and won’t let me see an endocrinologist and has sent me to another Rheumatologist for a second opinion. He said that he doesn’t treat TSH levels until they get above 9. Mine are currently around 5.5. After digging around about these test results I discovered that aspirin apparently lowers all thyroid hormone measurements, “Single-dose aspirin or salsalate decreased … various total and free thyroid hormone measurements. One week of aspirin or salsalate decreased total T(4), free T(4) (salsalate only), total T(3), free T(3), and TSH.” Needless to say that after the heart attack I’m on a daily dose of aspirin as well as a blood thinner and blood pressure med.

That said, even if there weren’t mitigating circumstances regarding the accuracy of my test results, even a 5.5 is high enough to be diagnosed as hypothyroid from what I’ve read. According to the American Association of Endocrinologists in 2003, “Until November 2002, doctors had relied on a normal TSH level ranging from 0.5 to 5.0 to diagnose and treat patients with a thyroid disorder who tested outside the boundaries of that range. Now AACE encourages doctors to consider treatment for patients who test outside the boundaries of a narrower margin based on a target TSH level of 0.3 to 3.04.” So even at the old levels, my TSH is on the high side. If you add into that fact that my levels are lower due to daily aspirin use then I’m quite sure that I’m hypothyroid. Given my history of autoimmune disease, there’s really no other explanation for my hypothyroidism than Hashimoto’s. Forgive the lengthy treatise, but this has been so frustrating I could spit nails.

Anyways, one of the “symptoms” of Hashimoto’s is high LDL. Mine was over 300 when I went to the hospital with the heart attack. Mine was not a mild heart attack, it was a full-blown STEMI. While I didn’t pass out I nearly did and I fell down a couple times in an attempt to walk to get help. It was the worst pain I’ve ever felt and I really don’t know how I found the strength to get up and get help. Now I suffer from angina just walking to the mailbox and I’m not even 40.

I’ve yet to meet a doctor who is willing to confirm that autoimmune issues are related to my heart attack, in fact they consistently say they have no clue why I had one. While I am a bit overweight and I’ve got the high cholesterol, so does my Mom who is much heavier and in her 60’s. It really has been a, “What the hell?!” experience. Every cardiologist I talked to has no idea. I always ask about any autoimmune connection and most clam up about it, a few said it was a possibility in some universe, and an EMT (from when my stent got blocked within two months of the heart attack) said it’s absolutely related - go figure.

I’m guessing it was the high LDL, which perhaps can be laid at the feet of Hashimoto’s, although I wonder if there’s something else about the autoimmune factor that we’ve yet to understand. High cholesterol runs in my family (in raw totals Mom’s was 600, cousin’s was 500, I’ve hovered around 350-400) but I’m not sure if anyone had such high LDL levels specifically. The only person who died of heart disease was my Grandmother but she was in her eighties. I’m the only one who has had major autoimmune issues and a heart attack before 60. It’s the only thing that makes any sense to me. I’ve only started researching this, and I’ve got so many things to do I haven’t delved that deeply but I can’t believe that it’s an isolated factor.

As to your case, if there’s anything I’ve learned from my experience don’t fool around with chest pain - that goes for everyone. I very nearly died and I could have gotten help much sooner - like four days sooner when the pain first started. Because of the whole insurance thing I waited, but I’m sure less damage would have been done if I had gotten help sooner. According to my cardiologist, they can always see the damage from a previous heart attack on an EKG, so maybe that’s what your doctor is referring to. Your Dad’s story is a bit disconcerting. I dread the idea of having another heart attack, but I kind of feel like I’m doomed to another one. Regardless of my fate, I wish you the very best. I know how difficult it can be living with not only autoimmune but cardiac issues, so my heart (pardon the pun) goes out to you!

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