8 replies to this topic

[thecatnapper]

I'm wondering if anyone else has noticed their senses becoming hyper-sensitive when their Narc symptoms are worse. After about 3 weeks of being able to sleep at night I'm back on my nocturnal schedule and I'm back to having to stick cotton in my ears. About 5:00 this morning I tried to go to sleep but the clock on the wall was ticking so loud that after a while it sounded like it was banging instead of ticking. Normally I don't even notice it. When I finally got to sleep I was woken up by my neighbor mowing his lawn and it sounded like the mower was right under my window. After he got done the guy on the other side started cutting his and I was nearly in tears because the noise was bothering me so much.

I have also noticed that my sense of taste gets really sharp when my symptoms are worse. For instance there are some packaged/prepared foods that I can no longer eat because some of the flavors have become so intense and I notice new flavors that I've never experienced before even though family and friends say the foods taste exactly the same to them. I've also developed the nose of a hunting dog. I notice smells that no one else can smell and find myself gagging at smells that are unpleasant to me. I used to love perfumes and scented candles but now I can't tolerate them.

Light can sometimes be another issue. I have a desk lamp and a pendulum light above my sink that I have tried multiple bulbs in but still can't use because for some reason they really bother me.

All of these things are like what I experienced in my late teens and early 20s when I had severe migranes which thankfully I don't have anymore. So I'm guessing it's just something that happens within the brain when it's not functioning properly. I wish I could say that my vision has improved but the opposite is true...LOL!

It's not all bad though because some of the smells and flavors can be quite pleasant. Maybe I'm evolving into a super hero!

[Hank]

Thank you- you wrote what I have been thinking. It has been difficult for me to tell the difference between a personal quirk, a side effect or a symptom. I have always lived with being "uncomfortable". I was wide awake the other morning around 3 am and it seemed like our quiet house was on full volume. The ventilation, the flashing light on a power cord, a hamster wheel squeeking downstairs and a dog breathing- and the rest of my family was quietly sleeping. It was like trying to sleep on the Vegas strip. My wife has learned that things affect me differently at different times- I am not being picky or demanding. Before my diagnosis, it seemed like I was just picky. I feel like I have needed a translator for how things impact me. We keep a sound machine upstairs with "white noise" to cover up any sounds, which does help. I also find that bright light bulbs- like the one in our kitchen- bother me. There is a "natural light" lightbulb that is bright but not harsh. I have described this like a migraine (without the headache) or a hangover (without the party). Background music is really distracting for me. Tastes and smells do not impact me much. Exercise helps me a lot and does help me to sleep better. Drinking a big glass of ice water while warming my feet also helps by making me sleepy- I learned that trick from a medical journal study. I also take a big vitamin D dose weekly, because I am unusually low- this is common in other auto immune illnesses also. Low D can make you cranky and bothered. If you have found ways to improve/manage please let me know.

[Narcguy56]

I seem to only be super sensitive to such things when I am overcome with a random attack of exhaustion and just want to sleep. Then I can hear everything, lights are painfully bright, etc. I can not smell, however. For some reason I've never been able to smell my entire life. Possibly related to narcolepsy somehow? I'm not sure, it is very strange

[thecatnapper]

Thank you- you wrote what I have been thinking. It has been difficult for me to tell the difference between a personal quirk, a side effect or a symptom. I have always lived with being "uncomfortable". I was wide awake the other morning around 3 am and it seemed like our quiet house was on full volume. The ventilation, the flashing light on a power cord, a hamster wheel squeeking downstairs and a dog breathing- and the rest of my family was quietly sleeping. It was like trying to sleep on the Vegas strip. My wife has learned that things affect me differently at different times- I am not being picky or demanding. Before my diagnosis, it seemed like I was just picky. I feel like I have needed a translator for how things impact me. We keep a sound machine upstairs with "white noise" to cover up any sounds, which does help. I also find that bright light bulbs- like the one in our kitchen- bother me. There is a "natural light" lightbulb that is bright but not harsh. I have described this like a migraine (without the headache) or a hangover (without the party). Background music is really distracting for me. Tastes and smells do not impact me much. Exercise helps me a lot and does help me to sleep better. Drinking a big glass of ice water while warming my feet also helps by making me sleepy- I learned that trick from a medical journal study. I also take a big vitamin D dose weekly, because I am unusually low- this is common in other auto immune illnesses also. Low D can make you cranky and bothered. If you have found ways to improve/manage please let me know.

OMGosh that is exactly what I meant about the lights! It's like I get disoriented and feel like I'm going to barf. I just got some of the daylight bulbs for my bathroom vanity and I've done okay with those so I might try switching to that for the light over the kitchen sink.

I have looked into buying one of the white noise machines. One of my previous doctors had an older office with thin walls and they had several of the machines and they worked very well for maintaining privacy plus I found the sound very relaxing. Maybe I could get more than one and that would help drown out some of the neighborhood noises during the day as well. They are a bit expensive which is why I haven't already gotten one.

Being so sensitive can make it difficult to enjoy things. For instance my friend owns a boutique and once a month she has a live jazz band come in. If they are set up outside I really love it but when they are inside the store the noise is just to intense for me. I also have a screened porch that I absolutely love but sometimes the noise from the street bothers me so much that I can't sit out there. Oh, and my AC in my car is not working right now so I have to ride with the windows down. I try to stay on back roads if I can because the noise from large trucks on the highways and the "wind" from driving at higher speeds really grates on my nerves.

Before I got diagnosed I really started to believe that I had a mild case of Asperger's Syndrome and I spoke with a Psychiatrist about it but she immediately blew off my concerns and said it was just social anxiety. I'm still not so sure that I don't have AS but then again it could all be part of the Narcolepsy. So, I'm really hoping for some relief of all of these weird symptoms once I get on Xyrem.

I'm glad that your wife is understanding. My sensitivity drives my family batty and they think I'm just eccentric . It's the main reason that I choose to live alone.

BTW, I was diagnosed with severe Vit D deficiency back in April. I alternate between the big doses by mouth and just sitting in the sun for short bits of time on days that it's sunny during mid-day. I think it's actually a very common problem but for some reason doctors don't routinely test for it even when there are deficiency symptoms present.

[sunnydaysc6111]

I have always had really sensitive sense of smell. I smell scents no one else does and a lot of them are not pleasent. My family just ignores my complaints. And I hear things others seem to ignore and I can't. In a theater watching a movie someone opening their candy can drive me nuts. I always figured I was very ADD. I usually sit close like in a meeting or church so I won't get distracted. But then again if I am not interested I will fall asleep. So then a distraction could help. And at night I can hear every movement. As a mom of 5 that can drive you crazy. The kids have learned that once I've gone to bed to try and stay in their rooms or I'll be up and usually grumpy. I didn't relate it to N. Figured it was just me. Will be interesting to see if others with N has this problem.

[thecatnapper]

I have always had really sensitive sense of smell. I smell scents no one else does and a lot of them are not pleasent. My family just ignores my complaints. And I hear things others seem to ignore and I can't. In a theater watching a movie someone opening their candy can drive me nuts. I always figured I was very ADD. I usually sit close like in a meeting or church so I won't get distracted. But then again if I am not interested I will fall asleep. So then a distraction could help. And at night I can hear every movement. As a mom of 5 that can drive you crazy. The kids have learned that once I've gone to bed to try and stay in their rooms or I'll be up and usually grumpy. I didn't relate it to N. Figured it was just me. Will be interesting to see if others with N has this problem.

I laughed when I read what you said about the movie theater. It drives me bonkers when I go to a movie and can hear a theather full of people crunching popcorn and opening plastic candy wrappers during quiet scenes. It's like, can't you do that during the super loud previews BEFORE the movie starts? One time I went to a movie and it sounded like everyone who had popcorn had an iron jaw and I didn't say anything to the person I was with but I heard this kid a few rows back "whispering" like little kids do and he said "hehehhe...Mom...I can hear everyone crunching on their popcorn" and several people around them giggled. I knew then it wasn't just me.

My Mom tries to pull a fast one on me every once in a while by sneaking in a finely chopped onion into something she cooks. I cannot stand the smell, taste or texture of an onion and I can smell the slightest hint of one. I can smell them as soon as I walk through the front door of her house. We have this argument all the time because she always says "can't you just pick them out?" and I'm like "no I can't because if it smells like an onion, it tastes like an onion!" She swears the flavor is gone when you remove the chunk but I say "Mom, onions are flavoring foods just like spices. You add them to your food because you like the flavor. Once the flavor goes in, you can't just pick it out" then she tells me I'm being ridiculous. The onion thing is how I first realized that I was picking up smells and flavors that I hadn't before. I had gotten these frozen fish portions that I'd eaten for years and one day I opened the freezer and got a huge wiff of onion and couldn't figure out where it was coming from. I cooked one of the portions and when I took the first bite I tasted strong onion flavor and gagged! I looked at the ingredients and sure enough it had onion powder in it. Then more recently I was at a family gathering and there was salad and I got a bit of ranch dressing. As soon as I put one bite in my mouth it tasted like I'd taken a bite out of a raw onion. I gagged again! I thought it must be some off brand but I looked at the bottle and it was Hidden Valley which I've eaten since I was a kid. A few days later I was with a friend and we had sub sandwiches and doritos. The doritos tasted just like Cheetos and I said "I think there was a mixup with the seasonings because these doritos taste like they have Cheetos flavoring on them" My friend ate one and said they tasted like doritos and then a couple of other people ate some and said the same thing and of course everyone looked at me like I had two heads when I adamantly said no they had cheetos flavor. That's when I put all the pieces together as far as the smells and tastes.

When the doctor first mentioned to me that he thought my sleep problem was Narc. I searched online to see if the heightened senses thing had anything to do with it and found one article about it but it said it was a "rare subset" of patients with Narc. who reported the phenomenon. I imagine it's more common and most never link it to their condition.

[Megssosleepy]

This is too funny, I can not stand the sound of people chewing drives me bonkers! Its weird tho, because i have terrible hearing unless its a quite noise that bothers me... then its super loud. As far as smells and taste, I wouldnt say Im different from anyone else.

[ImSleepin]

I seem to only be super sensitive to such things when I am overcome with a random attack of exhaustion and just want to sleep. Then I can hear everything, lights are painfully bright, etc.

I have to second this. This seems to be something that has started more as I've gotten older and have been working. For the most part, I nap a few days a week after work and on the weekend. However, not everyone in my family respects or understands the need to sleep, so I do find if my sleep is disturbed consistently to a point where I become further exhausted that I have a very hard time going back to sleep and can hear everything and it can take days before I'm able to get back into a rhythm again.

[thecatnapper]

This is too funny, I can not stand the sound of people chewing drives me bonkers! Its weird tho, because i have terrible hearing unless its a quite noise that bothers me... then its super loud. As far as smells and taste, I wouldnt say Im different from anyone else.

Girlfriend, I can't even stand to hear my own self chew! They say you should not watch TV while you eat because it diverts your attention away from your eating and sets up bad habits but if I don't have something to drown out my chewing it drives me bonkers for sure.