4 replies to this topic

[drago]

I've been reading some stuff about hypothalamic hamartoma -- among other things -- that cause what's called "secondary narcolepsy." That is, narcolepsy develops as a result of something else -- and (in some cases) that the underlying thing could be treated INSTEAD of the narcolepsy.

Trouble is, a lot of the things I've been reading about aren't things you generally ask about -- brain abnormalities, etc. I had a head CT a few months after I was DX with narcolepsy due to headaches and some issues with dizziness (which turned out to be unrelated). However, the CT wasn't done with contrast, and no one really thought it would reveal anything. No suggestion of CT with contrast OR MRI came up.

The hypothalamic hamartoma can be missed on a basic CT -- especially if no one thinks something might be there. You need an MRI for it -- among a few other things that cause secondary narcolepsy.

I started looking into the hypothalamus because I have some non-narcolepsy-related symptoms that all point to issues with the hypothalamus region of the brain - that and no one in my family has a history of any sleep disorders (except for those due to obesity) OR neurological disorders of any kind.

Has anyone else suspected they might have some form of secondary narcolepsy? If so, how did you approach talking with your doctor about it? I don't want to tell my neurologist I think I have a brain tumor -- but I would like to be SURE that I don't, as well as a few other neurological issues...

drago

[Hank]

I've been reading some stuff about hypothalamic hamartoma -- among other things -- that cause what's called "secondary narcolepsy." That is, narcolepsy develops as a result of something else -- and (in some cases) that the underlying thing could be treated INSTEAD of the narcolepsy.

Trouble is, a lot of the things I've been reading about aren't things you generally ask about -- brain abnormalities, etc. I had a head CT a few months after I was DX with narcolepsy due to headaches and some issues with dizziness (which turned out to be unrelated). However, the CT wasn't done with contrast, and no one really thought it would reveal anything. No suggestion of CT with contrast OR MRI came up.

The hypothalamic hamartoma can be missed on a basic CT -- especially if no one thinks something might be there. You need an MRI for it -- among a few other things that cause secondary narcolepsy.

I started looking into the hypothalamus because I have some non-narcolepsy-related symptoms that all point to issues with the hypothalamus region of the brain - that and no one in my family has a history of any sleep disorders (except for those due to obesity) OR neurological disorders of any kind.

Has anyone else suspected they might have some form of secondary narcolepsy? If so, how did you approach talking with your doctor about it? I don't want to tell my neurologist I think I have a brain tumor -- but I would like to be SURE that I don't, as well as a few other neurological issues...

drago

I had previously been misdiagnosed. I spent a lot of my doctors visits convincing that my symptoms things were not secondary to other things.

You have done your homework. If you do have this, I am so glad for you that it is not cancerous. Ours sons friend has a similar congenital malformation. You definitely would not be telling your doc "you think you have a brain tumor" at all. I think it is amazing you have found this possibility. If you have other symptoms, and your N could be secondary, and this could potentially help you- an MRI is not much to ask for. Docs order those things all the time.

[Megssosleepy]

This is very interesting and I have been trying to find the culprit of some other symptoms as well! I went to see an ENT and he told me I didnt need to follow through with the contrast CT I had scheduled for the next morning. I regret that decision! The ENT wanted me to see just an Ear specialist or an oral surgeon. I try very hard to not seem like a hypochondriac... I feel most doctors see patients in this light. But, after my N symptoms had been blamed on me for so long, and then got so bad along with some other things I cant help but wonder if the reason the N has climaxed is because of the problem with behind my ear and jaw.

So that being said and after reading your post. I think its time to reschedule the CT. If insurance is willing to pay, why risk not doing it. I know my body... I know I went from being tired/sleep deprive healthy to an utter mess! Ive lived with N for 13+ years and never felt this crappy. I havent even had the common cold it years!

So thanks for your post Drago!

[The Dreamer]

I don't know if I have primary or secondary Narcolepsy....at this point I'm just glad that I finally got the diagnosis.

And, I don't know if there's a way to tell...since there were probably factors for both in my childhood around the time when I started having trouble. I had gotten strep and then pneumonia as a child. I was probably prescribed penicillin...which I'm allergic to....which my mom would've then thrown out, cut off the doctor as a quack and used potions that enhance my own immune system to cure me. She doesn't think there's such a thing as too much immunity....or auto-immune. Though she seems to be coming around to that sleep disorders do exist. Though she thinks my Narcolepsy is more likely due to a secondary cause.....

Also, around that time...I had gotten beaned in the head by a baseball....the year before a kid died and they started requiring batters to wear helmets. My parents picked me up and left me to sleep it off on the sofa. No ER for me. I don't think I went to the ER until I was 18....got the flu so bad that year that it looked like I was going to die. But, not bad enough to be allowed to ask for a postponement of having to write my finals. My little brother OTOH, got to go the ER a lot....starting when he was a week old. Didn't find out until a few years ago that both my parents have the Thalassemia trait....my dad didn't know he had it, but my mom found out a few years ago from his sister. I was told that I don't have it, because they never tested me for it. Huh? Though my mom freaked when I was taking megadoses of iron, because doc was trying me on that to see if it would fix my EDS.

More than likely my iron was low that time, because it hadn't been that long since I had given blood....and I guess I probably shouldn't have ever been, since I have RLS....

Though my mom is more likely to point to the car accident that I had in 1997 as the cause for my Narcolepsy....ignoring that it was a microsleep that led to the accident. I often wonder what would've happened if I hadn't slammed on the brakes when I woke.... Though I didn't really have trouble sleeping until after I started CPAP....before then I could fall asleep instantly anywhere, under any conditions...like next to a loud speaker at a concert....slept through the whole thing too. Though I did have sleep issues well before the car accident.....including a few years where I got into heavy self-medication....that we don't talk about.

The Dreamer.

[DeathRabbit]

I don't know if I have primary or secondary Narcolepsy....at this point I'm just glad that I finally got the diagnosis.

And, I don't know if there's a way to tell...since there were probably factors for both in my childhood around the time when I started having trouble. I had gotten strep and then pneumonia as a child. I was probably prescribed penicillin...which I'm allergic to....which my mom would've then thrown out, cut off the doctor as a quack and used potions that enhance my own immune system to cure me. She doesn't think there's such a thing as too much immunity....or auto-immune. Though she seems to be coming around to that sleep disorders do exist. Though she thinks my Narcolepsy is more likely due to a secondary cause.....

Also, around that time...I had gotten beaned in the head by a baseball....the year before a kid died and they started requiring batters to wear helmets. My parents picked me up and left me to sleep it off on the sofa. No ER for me. I don't think I went to the ER until I was 18....got the flu so bad that year that it looked like I was going to die. But, not bad enough to be allowed to ask for a postponement of having to write my finals. My little brother OTOH, got to go the ER a lot....starting when he was a week old. Didn't find out until a few years ago that both my parents have the Thalassemia trait....my dad didn't know he had it, but my mom found out a few years ago from his sister. I was told that I don't have it, because they never tested me for it. Huh? Though my mom freaked when I was taking megadoses of iron, because doc was trying me on that to see if it would fix my EDS.

More than likely my iron was low that time, because it hadn't been that long since I had given blood....and I guess I probably shouldn't have ever been, since I have RLS....

Though my mom is more likely to point to the car accident that I had in 1997 as the cause for my Narcolepsy....ignoring that it was a microsleep that led to the accident. I often wonder what would've happened if I hadn't slammed on the brakes when I woke.... Though I didn't really have trouble sleeping until after I started CPAP....before then I could fall asleep instantly anywhere, under any conditions...like next to a loud speaker at a concert....slept through the whole thing too. Though I did have sleep issues well before the car accident.....including a few years where I got into heavy self-medication....that we don't talk about.

The Dreamer.

It's possible mine is secondary to MS. Getting an MRI in a few weeks to make sure. Two people in my family have MS.