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What happens as you become older with Narcolepsy..
I am now 67. I've had narcolepsy most of my adult like but it wasn't diagnosed until I was in my 40's. I'd be curious to know how others are experiencing this lack of hypocretin/orexin in their lives. I can't prove it in my case but I've read that that this lack is linked to hypertension. I'm thin and active yet I have high blood pressure. It now takes me 10 hours to get 5 hours of sleep at night. I chose my Part D coverage on the basis that it covered Xyrem and was successful in obtaining Xywav. I have the occasional sleep attack. But no cataplexy anymore. Migraines. I take Modafinil 400 mg but I don't know if it helps. I do think it prevents sleep attacks but it doesn't help with feeling particularly alert anymore. It's the same disease but manifests differently now. I've had numerous other health stuff but if I were to tell you which is the most debilitating I would choose narcolepsy. Most doctors know so little about it even now. I think it's affecting my well being far more than anything else. Far more than spinal fusion at 5 levels now. Never had back pain simply nerve pain. I recovered. So I'm wondering how others getting old with narcolepsy are experiencing it. Also most of my doctors don't appreciate its relevance when treating me. The profound impact it continues to have on my quality of life.
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Hello @dredk, It must be difficult having to deal with narcolepsy for as long as you have. I'm not sure if you have done a search on Connect but there are quite a few other discussions and comments from members on narcolepsy. Here's a link that shows the discussions and comments - https://connect.mayoclinic.org/search/discussions/?search=narcolepsy.
The NIH has some information on narcolepsy and also list some tips that might be helpful - https://www.ninds.nih.gov/health-information/disorders/narcolepsy.
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2 ReactionsYes. I've read research papers about the rather surprising effects of that lack of orexin/hypocretin in other areas of health. But many people are recently diagnosed and trying to understand what how this will impact their lives. But I have not discovered much about what growing old with narcolepsy is like. The manifestation has changed. An Epworth sleep test isn't aimed at a 67 year old. My symptoms are different than they were decades ago although I'm reasonably sure it's still due to something in my brain being different.
What I do wish is that when my physicians list my health problems they would not completely neglect mention of narcolepsy. My reading leads me to suspect that some of my health problems could in fact be influenced by narcolepsy rather than lifestyle or genes. So it is relevant. Especially as I get older.
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3 ReactionsI do understand narcolepsy and cataplexy. Having lived it. But at 67 the bullet points no longer apply as far as do you have narcolepsy? The questions now would be different, as I age. Same disorder and same drugs but it manifests differently. And I different impact on my life and well being.
First researchers had to figure out the orexin/hypocretin matter. Autoimmune perhaps with a genetic tie in. But only in the last decade are they beginning to understand the role of orexin beyond sleep regulation. Its role in eating and obesity. I don't have that particular problem but I see the statistics and wonder. Cardiovascular problems which I do have. Gut problems. Perhaps migraines. And the dreaded mental health problems. Mine are in remission. Not cured. But no longer worth noting. But narcolepsy is my biggest obstacle even now in having a normal life. I would not have predicted this several decades ago. And physicians simply regard it as something quaint. And do not consider how it might be a factor in something like my hypertension. Good sleep hygiene. Right. If only.
But at my age I'm no longer textbook narcolepsy in terms of symptoms. The pendulum has swung towards a different set of symptoms. My idea of paradise would be to sleep 6 hours nonstop. I'd settle for 5 hours. I am always sleep deprived. And yes I have the occasional sleep attack but I think it's due to sleep deprivation. The EDS is less. But simply feeling lousy is normal.
@dredk
What type of specialists have you worked with? I’m assuming a neurologist, pulmonologist, cardiologist, etc.
Were you tested/treated for sleep apnea? Have you ever been prescribed a stimulant medication?
I've treated by sleep doctors at Henry Ford ever since I told my psychiatrist " gee I lie down for a nap and it's kind of cool that I start dreaming immediately" Not to mention falling asleep etc. a lot. 2 sleep tests. Henry Ford is serious about sleep disorders and didn't trust the first test. Yup. Narcolepsy. My first neurologist was great. After he retired they assigned me to a pulmonary idiot. Now I'm back with a neurologist again.
For 20 years I have taken Xyrem but switched to xywav because I have hypertension. Even though I'm on the verge of skinny and active. I laughed when the drug insurance woman began to suggest yoga. Look lady. I am 5'8" and weigh 133 pounds. You think I need the salt? Yoga! That cracked me up. I walk but my spine is fused from L2-S2. Yoga my ass. But I can 10,000 steps. And yes I see a real live cardiologist. Another neurologist for migraines. I also take 400 mg of Modafinil. At about 5 am. And I see an endocrinologist for osteoporosis. My neurosurgeon would like the 12 screws to stay put. I have no complaints really. This was winter of getting a tune up. I'm sick of doctors. But I'm intrigued by how only now the comorbid conditions are coming to light. Orexin/ hypocretin. What does it do? A special little sleep job. Oh no. It does more than that as it turns out. Plus if you have narcolepsy your blood pressure doesn't behave so well at night. I stopped reading stuff but lately I'm becoming curious all over again. I've lived with it for 50 years. But the symptoms have changed as I've aged. Morphed. That doesn't surprise me one bit. I am fortunate that my doctors talk to each other in the sense that they try very hard not to screw up. And my neurologist is likewise becoming fascinated with the other stuff that comes with this apparently autoimmune (with a gene here or there) disease. The brain is a very weird place to snoop around in. No tidy little rooms marked sleep. The hypertension on the next floor. Migraines are outside around the temporal lobes. Oh no that's not right. Start over. Shall we look for manic depression in the attic. Oh that one decided to retire. But narcolepsy is the bitchy star thumbing her nose at everyone. Can't touch her. Unless I guess you're a lab rat. She's a blood brain barrier warrior in high heels. Bitch.
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3 ReactionsI have been known to tell my husband I'm not getting up now. I need to finish this dream and find out the ending. 5 minutes tops.
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1 Reaction@dredk
I really like your response and sense of humor. You are bright and witty! You really have had quite the health journey, haven’t you?