8 replies to this topic

[818sis]

Hello, I'm new to this forum. All my life I've been exhausted. No matter how much I sleep, I always want to sleep more. I always took naps - always. Recently, I have been having a hard time staying awake while driving. I have been talking to doctors about it for years. They've ordered all of the usual blood tests, and came up with nothing.

Finally, My new doctor sent me to a sleep specialist. When I was there, he gave me that quiz where you rate how likely you are to fall asleep in certain situations, and all that. Then he surprised me by saying he thinks I have narcolepsy. I never expected that.

It would certainly explain why I sleep so much, and that would be fantastic, because the going theory is that I'm really lazy. But here's my concern, I only really have one - maybe two of the classic symptoms.

I know I have EDS, and I think I might get the hallucinations around sleep. If hitting snooze without recalling can be considered and "automatic behavior" then, I guess I might have that. I wake up every so often to change positions, but doesn't everyone do that? Then I am able to go right to sleep again. I do not have sleep paralysis to the best of my knowledge. And I'm unsure about cataplexy. My knees definitely go weak when I laugh really hard, but don't everybody's? I don't have other signs of cataplexy - slacking jaw, drooping eyes, or any symptoms related to anticipation, or most other emotions.

Am I the only one who really doesn't want a diagnosis of Idiopathic Hypersomnia? I already have irritable bowel syndrome. I don't need another condition that every one thinks is made up. I already feel like I must be the laziest person ever. I feel like that diagnosis would just confirm it (at least in the eyes of others).

I'm not even sure I trust my sleep doctor. Looking back on the appointment, I didn't even have time to explain to him my sleep habits. Only the answers to the quiz questions. He said even if I do not show narcolepsy on the sleep study (which I have on Tuesday, and I'm nervous about) because I could get a false negative from taking Lexapro (for depression).

Anyway, I've had zillions of things running through my head since the word "narcolepsy" came out of the doctor's mouth. These are just a few of my thoughts. I am really glad this community is here. Thank you for your thoughts!

[LauraL]

Hi! Also quite new here--diagnosed just a few weeks ago. My understanding is that, yes, you can have narcolepsy without having all of the symptoms. Stanford's Sleep Medicine Center has a really great website on sleep disorders. Check out the page on narcolepsy and hypersomnia here:

http://stanfordhospi...epsy.html#narc0

I completely understand your reaction! Like you, my head was kind of spinning at the notion of narcolepsy. I was elated that someone finally could explain what was going on, and that there were treatments, but also quite stunned. I'm in a similar situation with regard to antidepressants interfering with the diagnosis... I take celexa, which is chemically very similar to lexapro, and the results of my sleep study did show very little REM sleep. My sleep neurologist said that to get a definitive diagnosis for narcolepsy, I'd have to discontinue the celexa for a few weeks, and then have another sleep test. However, she thought it wasn't worth doing this, because the treatments she'd prescribe for narcolepsy and idiopathic hypersomnia are the same: stimulant medication during the day to help me stay awake (nuvigil, in my case). I was perfectly happy with that plan, even though I was a little disappointed that I wouldn't have a definitive diagnosis, but I talked about this with a friend of mine who is a neuroscientist (and happens to have narcolepsy himself), and he pointed out that narcolepsy without cataplexy is almost as vaguely defined as idiopathic hypersomnia. So, I guess it doesn't really matter...

The good news, though, is that nuvigil has been enormously helpful. It's not without side effects, but it feels so great to be awake during the day!

I actually went to two different sleep specialists before finding someone I was happy with. I didn't feel like the first doctor really paid attention to what I was telling him. And he didn't take a very thorough history, so I felt like he didn't have the relevant information to make a diagnosis. (His diagnosis ended up being wrong, anyway.) I stayed with him long enough to get the results back from the sleep study, because I didn't want to wait for another series of referrals, and then called my primary care doctor to ask for a referral to a sleep neurologist I discovered in my area. She's fantastic. I'm so glad I went with my gut and made the switch. I'd encourage you to shop around, if your insurance allows, and if you don't feel comfortable with the doctor you're seeing now.

Good luck with all this!

[Asleeper]

818sis,
One good possibility. Once I got my narcolepsy under control, my problems with irritable bowel syndrome have almost gone away.

[StayAwakeStayAwake]

Hello, I'm new to this forum. All my life I've been exhausted. No matter how much I sleep, I always want to sleep more. I always took naps - always. Recently, I have been having a hard time staying awake while driving. I have been talking to doctors about it for years. They've ordered all of the usual blood tests, and came up with nothing.

Finally, My new doctor sent me to a sleep specialist. When I was there, he gave me that quiz where you rate how likely you are to fall asleep in certain situations, and all that. Then he surprised me by saying he thinks I have narcolepsy. I never expected that.

It would certainly explain why I sleep so much, and that would be fantastic, because the going theory is that I'm really lazy. But here's my concern, I only really have one - maybe two of the classic symptoms.

I know I have EDS, and I think I might get the hallucinations around sleep. If hitting snooze without recalling can be considered and "automatic behavior" then, I guess I might have that. I wake up every so often to change positions, but doesn't everyone do that? Then I am able to go right to sleep again. I do not have sleep paralysis to the best of my knowledge. And I'm unsure about cataplexy. My knees definitely go weak when I laugh really hard, but don't everybody's? I don't have other signs of cataplexy - slacking jaw, drooping eyes, or any symptoms related to anticipation, or most other emotions.

Am I the only one who really doesn't want a diagnosis of Idiopathic Hypersomnia? I already have irritable bowel syndrome. I don't need another condition that every one thinks is made up. I already feel like I must be the laziest person ever. I feel like that diagnosis would just confirm it (at least in the eyes of others).

I'm not even sure I trust my sleep doctor. Looking back on the appointment, I didn't even have time to explain to him my sleep habits. Only the answers to the quiz questions. He said even if I do not show narcolepsy on the sleep study (which I have on Tuesday, and I'm nervous about) because I could get a false negative from taking Lexapro (for depression).

Anyway, I've had zillions of things running through my head since the word "narcolepsy" came out of the doctor's mouth. These are just a few of my thoughts. I am really glad this community is here. Thank you for your thoughts!

Hi 818sis! I'm new to this too. I was just diagnosed two months ago and like you, feel like the laziest person ever. I feel guilty about it. I read alot of books on different things to try to figure out what is wrong with me. Foggy mind, can't stay asleep, can't stay away, cataplexy, anxiety, irritable bowel...Before seeking my N diagnosis, I changed my diet. I went gluten free a year and a half ago and never looked back. Within 2 months I noticed that my concentration improved tremendously, I had fewer bouts of EDS, and my irritable bowel was irritable no more! I still struggle with N & C, but the diet helps. Food for thought... Let us know how your sleep study goes.

[sleepywriter]

818sis,
One good possibility. Once I got my narcolepsy under control, my problems with irritable bowel syndrome have almost gone away.

Same here!

Yes, it is possible to have only a subset of symptoms. Supposedly, only 10-25% of people with narcolepsy experience all four symptoms. http://www.ninds.nih..._narcolepsy.htm

You should wait to do your sleep study until you have been off medications like antidepressants for at least two weeks. And if you don't trust the doctor, find a new one! It's so important to feel comfortable with the person who could be treating you with a lifelong condition.

[818sis]

Wow, thanks to everyone who has replied so far!

I'm surprised to see so many people with N & IBS. I asked my doctor if cataplexy could involve the digestive system in some way, and he said no. What do you guys think? Food goes right through me when I'm upset, excited or anxious. It's such a problem that I've pretty much eliminated excitement from my possible emotions.

Actually, my IBS has been largely taken care of since being treated for anxiety. I have occasional problems if I drink something icy on an empty stomach, or if I down carbs too fast.

I just had a biopsy to be sure I am not allergic to gluten. It came back negative. (But I do have erosion of my stomach and esophagus, which combined with N might make for some weird situations - i.e. feeling a sleep attack coming on and being unable to drink coffee).

Also, I'm only on 10mg of Lexapro. My doctor thinks I may still have a true positive test result because my dose is so low. He said I would have to come off of it for 6 weeks to get a true result. If I came off of it for less than that, I could get a false positive (which leads to a question - I have a tendency to forget to take Lexapro over the weekend. Could that cause me to have N-like symptoms without really having N?). Anyway, I already know that coming off of the meds for 6 weeks could be very dangerous for me. I'm not willing to risk that.

[818sis]

Today I had my appointment for my diagnosis. I have IH. I fell asleep 3 times during the MSLT, but no rem.

Honestly, I'm a little disappointed. But I am going on nuvigil. I hope it helps!!!

[Holly3216]

From what my doctor has told me, IBS can be related to narcolepsy (or any sleep disorder), in that, our body relies on sleep in order to restore serotonin, and serotonin controls some of the contractions of muscles in the intestinal walls. In that way, bad sleep can result in bad digestion... From what I have read, though, IBS seems to be a functional problem -- simply the muscles of the digestive system failing to properly contract -- which means that there could be many causes of IBS.

Some of my IBS has diminished when I stopped eating things that my body has delayed allergic reactions to (diagnosed via blood test), and also anything that my stomach just refuses to agree with (such as coffee and quinoa). After a few months of a restricted diet, some of the worst of the IBS and *severe* fatigue (inability to stand and walk around for any period of time) has gotten better. For me, mild pressure on the abdomen (like a back brace or light corset) can also help with abdominal pain (from the research that I've looked at, it is possible that my circulation gets a little quirky and the blood pools a bit in the abdomen, causing the organs to become "irritable"). I also have ginger tea when I am having a bad IBS day (some herbs are known to be calming to the intestinal muscles... peppermint is another one, but it doesn't work for me).

It makes sense that other problems that involve the nervous system (such as anxiety) could also cause IBS. Research seems to point towards the nervous system and digestive system being very linked.



Because I have all four indicators of narcolepsy, the doctor has been pretty certain of my diagnosis... but I know someone who did not have all four initially (but narcolepsy showed up via the PSG and MSLT)...however, the narcolepsy has become more pronounced over the years, so that now it is more obvious that it is there. For me, the symptoms have gotten better over the past few years (although my schedule is also very regimented -- with the fibro/IBS/allergies, I am very careful every day about how I go about things). There are still some times when symptoms return, though, so I am just thankful that at this point, they are not severe and I can still work. From what I understand, illnesses tend to change over the years and everyone is different, so just keep an eye on how you are feeling and keep talking to the doctors...

It may be weird to hear "narcolepsy" or "IH", but it helps the doctors form a theory so that they can figure out what might help you... and putting a name on it also might help you to find resources and figure out little things that help your daily routine... or at least realize that there are plenty of people who know how you feel and have the same struggles. Sometimes it can be hard to have an "invisible illness", because not a lot of people seem to understand, unless they have one too... Fibromyalgia is another one that some people think doesn't exist (or that is psychological), but anyone who has been in pain for every waking moment for weeks on end will tell you that it's not made up... they just haven't figured out how to clearly diagnose it yet (find a test that "proves" that you have it). Hypersomnia is probably similar -- there is a reason for it, but no explanation or clear test yet. Don't let yourself feel bad or let people look down on you as "lazy" (or beat yourself up either!)... Getting better when I came down with fibro meant lots of rests, hot baths, sleep, special food... and very little exercise, until I was able to handle it! (Some friends were thinking that I should exercise a lot -- and I had to tell them, "No, that's not right for my condition right now. I'm not supposed to do anything strenuous...") You know your body better than anyone else, and you probably know how much you can do, when you need to rest and how much you can "stretch" yourself (which might change from one day to the next). I used to put a lot of my personal value based upon what I could do for other people... and then for a while, I could barely do anything (except lay around the house)... so now I am thankful on days when I can do things, but I've learned to value who I am a lot more than what I can accomplish on a particular day... If I do the best that I can with the physical challenges that I have on a particular day and take good care of myself, then I tell myself that I did really well... regardless of what I did or didn't get done. I'm learning slowly what it means to be a person with illnesses... Finding people that you can talk to, who have the same challenges, can help a lot...

Hope that you start feeling lots better! Blessings and best wishes...

[818sis]

Holly,

Wow, thank you so much. That was an amazing post!