19 replies to this topic

[Saraiah]

Here's the basic question: Does anyone know of anyone who definitely had narcolepsy caused by a lack of hypocretin who was later CURED entirely of narcolepsy? And I don't mean that their symptoms improved on meds and with lifestyle changes, and I don't mean folks who have narcolepsy-like symptoms due to gluten insensitivity. I mean someone who had no hypocretin in their cerebrospinal fluid who was somehow completely cured. I've never heard of that happening, has anyone else?


I just got back from Quaker Meeting (which is essentially church, just different). I had been really scared to go, partly because:

• I was afraid I'd fall asleep and snore LOUDLY (my sleep apnea makes me snore so loudly that the neighbors used to call in the middle of the night), and
• because I am so super-sensitive to people's ignorant comments about my newly diagnosed narcolepsy.

So I sat between two close friends who could wake me if I fell asleep & snored, and I didn't fall asleep, thanks to starting Xyrem.

BUT. I chose to tell an acupuncturist acquaintance that I have narcolepsy, thinking she would be a safe person. She told me that I didn't need to live with narcolepsy, that alternative holistic treatments could cure me of it, and that she could refer me to the appropriate "healers." I realized as we talked a bit more that she had absolutely NO idea what causes narcolepsy, and believed that it was due to the body "being out of balance." She stated that since she had helped soldiers coming back from Iraq to cure their problems with getting to sleep at night and staying awake during the day, she could therefore cure any narcoleptic. I explained the neurological differences between depression, PTSD, and narcolepsy. I explained that in the narcoleptic brain, the cells that manufacture the sleep hormone hypocretin are killed by the immune system, and that the brain is not able to grow more of those cells, which is VERY different from the neurological imbalances of neurotransmitters in depression and also much of the problems with PTSD. Finally, I asked her whether she would say that she could also claim to cure MS, which results from different permanent neurophysiological changes. She FINALLY backed off at that point. But she did argue that she could cure my narcolepsy, still.


The whole conversation was upsetting to me. I have no problem at all with alternative therapies in combination with Western medicine. But her argument that alternative therapies could CURE my narcolepsy made me feel as if I am, in her judgement, essentially AT FAULT for having narcolepsy. Because clearly, if I've still got N, then it must be my fault for not seeking out and paying through the nose for whatever the "right" alternative therapy is. I've got enough problems without perceiving that people that I like and admire are BLAMING me for having narcolepsy!!!


So, I'm going to calm down, and write her a note, because I am sure that she didn't mean to leave me feeling angry and sad. But I'd like to know if ever in the history of narcolepsy, anyone has ever magically been cured. I want to know if there's really any basis, historically or recently, for her claim, or if she's just not making any sense.

Thanks all,

Saraiah

[Stacy D]

Tell her you'll pay her for treatment AFTER you're cured. See if she's still confident she can cure you.

Luckily being a tom-boy and soldier has made me pretty hardened to what people do or say, the side-effect being a serious lack of friends. When you don't care what others say you kind of come off as a b!tch.

I think that sometime "cure" is subjective. I think she thinks that she can treat your symptoms so that you are not bothered by them and in her mind that is a cure. I personally put a lot more faith in meds for that sort of thing. For some people they are cured when they are no longer bothered by symptoms even if it requires meds or treatments for the rest of their life. I don't think N can truly be cured, just made bearable with meds.

I'm sorry she made you feel that way. I have had a really hard time with people not really understanding how awful N really is. For the most part it doesn't bother me, but when it's friends and family that don't understand it's a lot harder. I am so sick of being told I just have too much on my plate and it will be better when I get out of the Army. Yeah, right. I still have over a year left and I am stressed (terrified, actually) every day about how hard it is going to be to find a job and keep it.

[greatbig47]

argh....things like this REALLY irk me.

I don't want to be ignorant, but I definately don't hold my breath.

Unless she has a magic way of putting hypocretin in your brain, you ain't cured any more than she can "cure" an amputee or a diabetic. Bless their hearts for trying, I'd like to see a little more research on the part of these kinds of folks.

You don't have to worry about coming across like a *BEEP* or losing friends here, Stacy. We get it. So many of us here know EXACTLY what this is like.

Welcome to the forum!

-Stu

[sleepless sleeper]

I HATE this! Yeah, and PLEASE tell her that if she can cure you that I'll send her all the money in all my accounts, including retirement, so that she can cure me. Tell her that I will help promote her to fame for being the one that could cure it.

While my mother was dying from brain cancer, one of her "holistic" lifestyle buds came over. I already knew the woman and liked her, and she did come over to help. She wanted to know why I was having such a hard time, and unfortunately, I was drinking a Coke at the time. Did any of you know that sugar is what was causing my narcolepsy? And if I would change my diet I would be so much better. And hey, if I had gotten out for a long hike (with my 18 month old, herniated disk in neck, insomnia from hell, no narcolepsy meds because doctor was late sending me new rx) then I would get all the rejuvenation that I could ever need. What was the best was a CNA that told me that all I needed to do was head down to the local health food store and pick up a can of Creatine (sp?), which is the stuff that Mark McGuire used to become a homerun legend. That would replace all the hypocreatin that I needed.

The local neuromassage therapist told me about (I forget the name) how you can determine a person's health by looking at how clearly the color shows in a person's irises. All humans should only have blue eyes or brown eyes, and there should only be minor variations of these. If you're born with hazel, green, or speckled eyes, then you were polluted in your mother's womb. Why is it that I've developed worse n over the years, but my eyes are the same? If I would do colon detox, drink only purified water, eat only truly organic, etc, then all my ailments would be cured. And what? Live forever? I do whole heartedly believe that everyone can benefit from exercise, change in diet, attitude enhancement, etc, but to cure some of these diseases? It may happen for some people, maybe. Who knows? There's always a story of someone that was able to completely overcome terminal cancer, etc, and they are great to hear. We can always strive to live the best that we can and to be the healthiest that we can be, but the stupidity of some people makes me want to punch them right in the kisser. And they think that we are the deluded ones.

[Saraiah]

Heee heee!!! You guys are so funny, and so great! That's what I thought - everything I've read has said that N couldn't be cured, but I wanted to make sure I wasn't missing anything. I wonder if it's because it's sleep that's affected in N that makes the general public so sure that they are experts on both what ails us and how to cure it. Because everybody sleeps, and everybody has a bad night now and again, and so maybe folks figure they know all about it. Creatine, Coca-cola, acupuncture, more exercise, whatEVER.... Maybe after I've gotten used to the N diagnosis and lived with it for awhile, I'll be able to just laugh and shrug this stuff off.

After I got home, I came up with the wicked repost that I fantasized it would have been nice to have on the tip of my tongue: I could have told my acupuncturist-acquaintance that since she knew how to cure N, she'd better get on the phone to NIH and Stanford right away! Because she was going to do something that had never yet been done in the history of medical science, and that there are 150,000 PWN in this country alone who were going to be CURED, FINALLY, based upon her radical new insight!! AND WE'D ALL BE LINING UP! Sigh.... But it's the kind of thing that plays better in fantasy then reality, at least in this context. But maybe I'll remember it for some other person ready to cure narcolepsy that I just don't really like....

I read somewhere reputable that a normal person would have to go between 48-72 straight hours without any sleep at all, before he/she would feel the same kind of fatigue that a person with N (without effective meds) feels every minute of every day. I wish I could remember where I saw that. I've been relating that to people as I go around educating folks about N.

I start by asking if they've ever stayed up all night, and they say, oh,yeah, I know how you feel. I get them to tell me about this time they stayed up all night, so that they've got it clear in their minds.

And I say, so then, did you go to work the next day? Most people stop right there, and look surprised, but some people say, yeah, I did this one time. So I get them to tell me all about that, so that they really remember how they felt after 24 hours with no sleep.

And I say, then, did you stay up again all night the second night? And that's where everyone drops out. But I keep going. I say, well, imagine that you DID stay up all night that second night. And then, imagine that you went to work that second day. And they're starting to get it.

And I say, and then, imagine that you stayed up all night again that third night. And then I say, so, you're in the morning of the next day, and you have to go to work. And they look at me, sort of overwhelmed.

And I say, that's how a person with narcolepsy feels, and how their body functions, up until they finally get diagnosed and hopefully finally get some effective meds. Every. Single. Day. For you, to feel this way, you'd have to stay up for 72 hours straight, with no sleep at all. EVERY DAY (which of course is impossible - you can't have gotten your last sleep 72 hours previously 2 days in a row, but I leave that part out).

And once in awhile, somebody says, I thought I understood before, but I didn't.

[sleepless sleeper]

Thanks for sharing that, S. I've never said that to anyone, but I am now going to be well prepared if the circumstance ever presents itself.

[Luckypomo]

Here's the basic question: Does anyone know of anyone who definitely had narcolepsy caused by a lack of hypocretin who was later CURED entirely of narcolepsy? And I don't mean that their symptoms improved on meds and with lifestyle changes, and I don't mean folks who have narcolepsy-like symptoms due to gluten insensitivity. I mean someone who had no hypocretin in their cerebrospinal fluid who was somehow completely cured. I've never heard of that happening, has anyone else?


I just got back from Quaker Meeting (which is essentially church, just different). I had been really scared to go, partly because:

• I was afraid I'd fall asleep and snore LOUDLY (my sleep apnea makes me snore so loudly that the neighbors used to call in the middle of the night), and
• because I am so super-sensitive to people's ignorant comments about my newly diagnosed narcolepsy.

So I sat between two close friends who could wake me if I fell asleep & snored, and I didn't fall asleep, thanks to starting Xyrem.

BUT. I chose to tell an acupuncturist acquaintance that I have narcolepsy, thinking she would be a safe person. She told me that I didn't need to live with narcolepsy, that alternative holistic treatments could cure me of it, and that she could refer me to the appropriate "healers." I realized as we talked a bit more that she had absolutely NO idea what causes narcolepsy, and believed that it was due to the body "being out of balance." She stated that since she had helped soldiers coming back from Iraq to cure their problems with getting to sleep at night and staying awake during the day, she could therefore cure any narcoleptic. I explained the neurological differences between depression, PTSD, and narcolepsy. I explained that in the narcoleptic brain, the cells that manufacture the sleep hormone hypocretin are killed by the immune system, and that the brain is not able to grow more of those cells, which is VERY different from the neurological imbalances of neurotransmitters in depression and also much of the problems with PTSD. Finally, I asked her whether she would say that she could also claim to cure MS, which results from different permanent neurophysiological changes. She FINALLY backed off at that point. But she did argue that she could cure my narcolepsy, still.


The whole conversation was upsetting to me. I have no problem at all with alternative therapies in combination with Western medicine. But her argument that alternative therapies could CURE my narcolepsy made me feel as if I am, in her judgement, essentially AT FAULT for having narcolepsy. Because clearly, if I've still got N, then it must be my fault for not seeking out and paying through the nose for whatever the "right" alternative therapy is. I've got enough problems without perceiving that people that I like and admire are BLAMING me for having narcolepsy!!!


So, I'm going to calm down, and write her a note, because I am sure that she didn't mean to leave me feeling angry and sad. But I'd like to know if ever in the history of narcolepsy, anyone has ever magically been cured. I want to know if there's really any basis, historically or recently, for her claim, or if she's just not making any sense.

Thanks all,

Saraiah

I stopped taking my meds last summer in 2008 sometime in August and I have not had any sleep attacks. My doctor never tested my hyprocretin levels so I don't know about that but I did have a sleep study done that proved that I do have Narcolepsy and that was done in 2004. MY doctor doesn't understand what happened to my Narcolepsy, he said he's never seen this happen before. I wish I knew what exactly happened. I am glad that I no longer need the medications to get through my day but It would be nice to understand it. I lost a very good job because of my narcolepsy.

[Saraiah]

I stopped taking my meds last summer in 2008 sometime in August and I have not had any sleep attacks. My doctor never tested my hyprocretin levels so I don't know about that but I did have a sleep study done that proved that I do have Narcolepsy and that was done in 2004. MY doctor doesn't understand what happened to my Narcolepsy, he said he's never seen this happen before. I wish I knew what exactly happened. I am glad that I no longer need the medications to get through my day but It would be nice to understand it. I lost a very good job because of my narcolepsy.

Hmm. August 1st, 2008 was the day on which I first became extremely ill with a GI problem, and when that illness ended, my narcolepsy symptoms for the first time became so wildly out of control that I could no longer stay awake while working, driving, etc. Maybe the universe decided to visit your symptoms upon someone else for a change. (I'm just KIDDING guys!)

So Luckypomo, that's pretty interesting. Did you make any sustained changes in your lifestyle, or diet, or where you lived, or your daily routine, or your medications, etc., that summer? Did you by any chance permanently give up gluten in all its forms that summer? What were your symptoms like before they went away? Do you have any remaining narcolepsy symptoms?

Have you introduced yourself to any of the leading narcolepsy researchers? Because seriously, if you've had the first ever documented spontaneous remission of narcolepsy, one of these researchers should be getting to know you well! It might be a great service to the rest of us!

Saraiah

[ohiolor]

In addition to Saraiah's great questions...I'm curious as to why you discontinued you medications?

[LynnH]

I know I'm late to the party here, but...

Finally, I asked her whether she would say that she could also claim to cure MS, which results from different permanent neurophysiological changes. She FINALLY backed off at that point. But she did argue that she could cure my narcolepsy, still.

-- and --

I start by asking if they've ever stayed up all night, and they say, oh,yeah, I know how you feel. I get them to tell me about this time they stayed up all night, so that they've got it clear in their minds.

And I say, so then, did you go to work the next day? Most people stop right there, and look surprised, but some people say, yeah, I did this one time. So I get them to tell me all about that, so that they really remember how they felt after 24 hours with no sleep.

And I say, then, did you stay up again all night the second night? And that's where everyone drops out. But I keep going. I say, well, imagine that you DID stay up all night that second night. And then, imagine that you went to work that second day. And they're starting to get it.

And I say, and then, imagine that you stayed up all night again that third night. And then I say, so, you're in the morning of the next day, and you have to go to work. And they look at me, sort of overwhelmed.

And I say, that's how a person with narcolepsy feels, and how their body functions, up until they finally get diagnosed and hopefully finally get some effective meds. Every. Single. Day. For you, to feel this way, you'd have to stay up for 72 hours straight, with no sleep at all. EVERY DAY.

And once in awhile, somebody says, I thought I understood before, but I didn't.

Saraiah, both of these things are awesome. I really like the way you put it in perspective for people who think that narcolepsy is just like being tired after a bad night's sleep (I'm totally going to steal this, by the way).

In addition to drawing a comparison with MS, which is a great way to highlight the neurophysiological connection, I like to throw in type-1 diabetes for the autoimmune component. People with type-1 diabetes have their insulin-producing pancreatic cells attacked and destroyed, just like we have our hypocretin/orextin-producing neurons attacked and destroyed, and I can't imagine taking seriously an alternative healer of any sort who argued that someone with type-1 diabetes should stop insulin injections and come to them, instead.

With all that said, I have great faith in science

[Saraiah]

Saraiah, both of these things are awesome. I really like the way you put it in perspective for people who think that narcolepsy is just like being tired after a bad night's sleep (I'm totally going to steal this, by the way).

In addition to drawing a comparison with MS, which is a great way to highlight the neurophysiological connection, I like to throw in type-1 diabetes for the autoimmune component. People with type-1 diabetes have their insulin-producing pancreatic cells attacked and destroyed, just like we have our hypocretin/orextin-producing neurons attacked and destroyed, and I can't imagine taking seriously an alternative healer of any sort who argued that someone with type-1 diabetes should stop insulin injections and come to them, instead.

With all that said, I have great faith in science

Hi Lynn!
Sorry it's taken me a long time to see your post. Thank you for the idea about drawing the comparison to type-1 diabetes, I hadn't thought of that one. I've been thinking more recently about how so many of us have family members or friends or coworkers, etc., who see our sleepiness and cataplexy (and for me, problems with memory, attention, and concentration too) as a character flaw, rather than as the symptoms of a disease. It's so hard for other people to understand, partly because there is no way for a person to see that each of us PWN has lost a very tiny part of our brains.

I've been trying to come up with a comparison to a person who has lost her right hand (and doesn't wear a prosthesis) -- which would of course be easy for another person to see. I cannot imagine, upon meeting this amputee, a person who would become angry and blame her for being unable to shake hands with her right hand - it's just obvious that shaking hands would have to be done differently. We have to do other things differently - like sleeping at times during the day. Somehow it's not as elegant a metaphor as the diabetes idea - I think I like yours better.

[narcats]

2007----have a psychiatrist here who says he knows all about cataplexy-all my son has to do is see him twice a week for two years and he'll be normal again - lets see at 200.00 a session because he has no insurence twice a week for two years that adds up to $$$$$$$$..........the psy should write a book- worlds greatest psychiatrist-a noble prize winner-- he be on the best seller list for years--wonder why theres not a line at his door--talked about his mom waisting her time on him and made a big issue hes going to die soon if he did not come in and see him--as my son and I lisened to what he had to say -we gave each other the look- laughting all the way to the car-we have 10+ years of wonderful stories.... what makes thing worse is people hired him to help defend them in court---as of today hes not in the phone book

[Saraiah]

2007----have a psychiatrist here who says he knows all about cataplexy-all my son has to do is see him twice a week for two years and he'll be normal again - lets see at 200.00 a session because he has no insurence twice a week for two years that adds up to $$$$$$$$..........the psy should write a book- worlds greatest psychiatrist-a noble prize winner-- he be on the best seller list for years--wonder why theres not a line at his door--talked about his mom waisting her time on him and made a big issue hes going to die soon if he did not come in and see him--as my son and I lisened to what he had to say -we gave each other the look- laughting all the way to the car-we have 10+ years of wonderful stories.... what makes thing worse is people hired him to help defend them in court---as of today hes not in the phone book

Oh, Lordy, narcats, that sounds awful!! I'm glad that you and your son had the wherewithal to realize that he was full of nonsense and laugh your way out.

[Big Dog]

The funny thing about anyone claiming they can cure anything is this. You come to me and say I have (insert any condition here) can you help me? I say "I have a magic pill that will cure (condition) and will treat you for $200.00 a week". Then one of the following three results will occur:

1) Condition improves
2) Condition stays the same
3) Condition gets worse

Here's the beauty of my "cure". If you improve, I say "see... I cured it". If it stays the same I say "well what do you know, I stopped it from getting worse". If it actually gets worse, no problem. I just say "that's to bad, if you would have come to me sooner I could have helped you but we didn't get it in time".

Medicine is subjective trial and error. What works for me may fail for you. Now, will all of you please send me $200.00 for my cure. I'll discount 10% for the people who did not get to me in time.

[drago]

Well, here's the thing:

Narcolepsy is a disorder, not a disease. Right? Doctors... kinda know why we have it. But some of us have different issues, since disorders are collections of symptoms. It's not like getting bronchitis -- which is a specific disease -- which is something doctors know the cause of and, by such knowledge, are able to eradicate it from the body and restore the body to health.

Has someone with narcolepsy been cured? I don't think it would be ridiculous, or even impossible, for someone who has been diagnosed with narcolepsy to have been 'cured' of it.

Isn't there a possibility that narcolepsy is kind of like Diabetes, where there is more than one type? Type I Diabetes is manifested early in life, but Type II Diabetes is another thing, usually developed later. Both of these things have a genetic component; Type II Diabetics generally have Insulin Resistance in their genetics that can aid the onset of Type II Diabetes.

The treatment for both of these is vastly different, too, for both types of Diabetes.

So, perhaps one day we will know enough about narcolepsy to know that it comes in more than one Type, and perhaps Type I (being the narcoleptics generally being represented here, who are not 'curable') is more widely understood, while Type II is less understood, and can be 'cured' (or, better phrase, controlled) by diet instead of medications. Some Type II diabetics monitor their symptoms via diet and not with medication.

So while I am very cautious with anyone saying they could cure me, I don't want to be so skeptical as not to believe someone who has been 'cured' (whether that means a lapse in symptoms OR perfectly controlled symptoms without medications). I mean, my life improved a LOT when I started taking Taurine supplements (recommended after during a neurotransmitter test that showed my GABA levels critically low as well as my Taurine). My EDS got worlds better after that -- of course, I was still on my other narcolepsy meds that also improved it, but those weren't changed. So I do know that a change in diet can make narcolepsy easier to live with--not necessarily 'cure.'

In short...no, I have never known anyone to be 'cured' of narcolepsy, but since we're not entirely sure what it is... well, you never know. :-p

drago

[Saraiah]

Now that I know a fair bit more than I did back in August 2009 when I first started this thread, I think you're exactly right, Drago, that there are different causes of the symptoms of narcolepsy.

We know that the vast majority of folks with narcolepsy with cataplexy are missing nearly all or all of the hypocretin neurons in the brain. And we know that once those hypocretin neurons die when attacked by the body's immune system, they don't come back. So for people who know that they do not have hypocretin in their cerebrospinal fluid, until and unless researchers come up with a cure in the future, narcolepsy isn't something that's going away.

There are a few people with narcolepsy with cataplexy who have "secondary" or "symptomatic" narcolepsy, which is caused by a brain injury or disease in the brain. And there are a few people with "familial" narcolepsy who have other, genetically caused forms of narcolepsy with cataplexy that are passed down through their families.

And then there are all the rest of us with narcolepsy without cataplexy and idiopathic hypersomnia. For the most part, there's little understanding of the causes of our diseases, and so there's no knowing whether we could get better or not. Two researchers at Emory University have found that a subgroup of people with these two disorders seem to have a hypersensitivity to GABA, but there's no knowing yet what causes that, or whether it's something that might improve.

[austeenob]

Only 20, hoping within 5 years I either feel really good everyday, or a cure has been found.. I had to give up on sports, nightlife, djing, traveling, some work... etc etc.. I am and always will push my self, but also will always be hopeful. Its really tough from going to excess adhd energy.. to downhill to exhausted all the time.. I can't even get into it its so frustrating. Just not fair =/ But I'm gonna keep trying, and hopefully one day I will be able to travel the world, play my sports, hang out late and have more fun then I am now. i missed out on alot, I dont want to miss out on it all. Hopeful for a cure for all of us.

[DeathRabbit]

Only 20, hoping within 5 years I either feel really good everyday, or a cure has been found.. I had to give up on sports, nightlife, djing, traveling, some work... etc etc.. I am and always will push my self, but also will always be hopeful. Its really tough from going to excess adhd energy.. to downhill to exhausted all the time.. I can't even get into it its so frustrating. Just not fair =/ But I'm gonna keep trying, and hopefully one day I will be able to travel the world, play my sports, hang out late and have more fun then I am now. i missed out on alot, I dont want to miss out on it all. Hopeful for a cure for all of us.

I felt bad today and was pretty depressed. I feel so stupid now. It makes me feel like a *BEEP*ty engineer/nerd. The cognitive setbacks are by far the worse symptom; I'd have rather lost a leg than the amount of brain function I have. Part of the mental decline I think is atrophy. I got so tired all the time, so I quit intellectually challenging myself. Now I find it difficult to follow even relatively simple logic. FML.

[Megssosleepy]

I stopped taking my meds last summer in 2008 sometime in August and I have not had any sleep attacks. My doctor never tested my hyprocretin levels so I don't know about that but I did have a sleep study done that proved that I do have Narcolepsy and that was done in 2004. MY doctor doesn't understand what happened to my Narcolepsy, he said he's never seen this happen before. I wish I knew what exactly happened. I am glad that I no longer need the medications to get through my day but It would be nice to understand it. I lost a very good job because of my narcolepsy.

Ummmmm... I wonder why this person never came back to explain? It really drives me crazy, someone comes on stating such a crazy wonderful important thing... like "my n went away" and then never comes back on... not cool

I did really like this thread and always wish some of the ol'NN people would come back and say hello sometime...

I really liked the post about the 72hours without sleep, def going to use that sometime soon!!

[The Dreamer]

Unfortunately there are things that can resemble narcolepsy and its possible to have a false positive in an MSLT.

I've heard depression can, but once heard a psychiatrist say the easy answer is prescribe Xyrem....if its depression, the Xyrem will do nothing. Though seems kind of an expensive test. Couldn't tell the context in which he was saying that....

In fact, I recall in a session ... Where I thought they said REM in the 5th nap is a good indication that its Narcolepsy...but then he shows a sample study where there was REM in naps 2, 3 and 5. And, said the patient in this case didn't have Narcolepsy....it was Depression.

Though not as depressing as the talk that went over neuropsych evaluations for accommodations....for getting more time to take the MCATs. First case had ADD, and the second case had Narcolepsy.... at the end we were polled on which one we thought went on to med school. Of course, most of us said the one with Narcolepsy But, the answer was neither of them did. :..(

The Dreamer.