55 replies to this topic

[sleepless sleeper]

I couldn't agree more.

[Rrrapture]

Wow! That is HILARIOUS and also freaky, it happens to me, too.

I've been wondering for a while now about my "word swapping". I don't know what else to call it. Years ago, I stopped using cliches in conversation, because 80% of the time I would swap crucial words with one that was way out of context. Or combine two cliches to form one weird new cliche! Lol

For example, in reply to a joking slight, in mock indignation I said,

"What am I, sliced meat?!"

(Yes I really said that. I believe the correct phrase is, "what am I, chopped liver?")

I have a clear memory of when I was a kid (10? 12?), sitting at the table with my dad and little sister. We all hear the same familiar sound/ signal. I say brightly,

"Better get that, it might be the phone!"

They roll with laughter. It was the microwave. A dinner item had just finished cooking.

I remember feeling confused at first (what did I say?), then embarrassed, and then, thinking sure, it is kind of funny. I still don't know if I thought it was the phone ringing, or if I just used the wrong word for microwave.

Incidentally I often transpose words that I hear or see written. Sometimes a key word or sentence gets translated in my brain into something really graphic/ inappropriate (I'm not making this up, really).

I've trained myself to just look again or ask the person to repeat what they just said. Instead of saying what I think they said, which can earn me really weird looks. Unless I'm with a friend who thinks it's funny...then I'll go with it and we can both have a chuckle. Fortunately the word swapping is usually G-rated.

Last week I asked the butcher to cut me 8 sirloin steaks, 8 inches thick each instead of 8 ounces each. His look was hilarious <img src="style_emoticons/<#EMO_DIR#>/laugh.gif" style="vertical-align:middle" emoid="" border="0" alt="laugh.gif" />

[sleepyk]

I can't find the right words sometimes, and I am known to also put the wrong word in a sentence. This is especially troubling during work meetings. "Patient is hypoglaucoma..." "You mean, hypoglycemic?" "Yeah, what did I say?"

The best, though, is coming home from the grocery with random things. I SWEAR I grabbed canned green beans, but what's in the bag is canned brussel sprouts. My husband actually kind of likes unpacking groceries with me now, because you never know what you're going to find!

[Sleepingcrow]

I've done all of this over the years. The most severe is when I start to get a tick, where my head jerks and words come out repetitively, or sentences come out sometimes even in rhyme. This, I can say, has never happened in front of anyone else. But the slurring, the total subject change, the not knowing the word, feeling drugged, going into mini dreams while in conversation (haven't had that for years), I've had it all.

Last summer I was grocery shopping and was very drawn to a vegetable (yes, this has to do with the subject at hand. Ha ha!). Anyway, I got it home and didn't know what to do with it, so I juiced it. It was certainly refreshing, although a bit bitter. Something was happening though. I was having a bit everyday, and noticed, my veins were being cleaned out, and for a few days my cataplectic attacks were happening frequently, but knowing I was getting detoxed, I kept going to see what this thing was doing.... a week later, I wasn't having any cataplectic symptoms when I normally would, so I looked it up online. First I had to find out what it was, and found out it was bitter melon aka balsam pear. I read a lot about it, and the one thing that stood out was that it helped auto immune disorders. I kept taking it, and within three weeks the cloud was being lifted from my head. I've been learning French for 10 years and suddenly the French was sinking in, without tons of repetition, my mind was sharper, I was remembering words, no more ticks, I was able to stay focussed, there wasn't a haze I didn't even realise was there all these years that I had apparently gotten used to,I didn't experience any more slurring, or that drugged feeling. Even my night time sleep like it actually worked - I was bright eyed abushy tailed within 15 or 20 minutes after waking ... The one thing it did not do was help with the actual narcoleptic attacks, but with the rest gone, I was accomplishing things without thinking about it.

One day, I ran out and wasn't able to get more for a few days, and within 2 or 3 days I started getting the shakes (my warning sign to slow down, or else I'd have more serious cataplectic attack), I wasn't able to think of words, and the haze was back, only this time was very apparent. Within 4 hours of taking more juice, everything went back into place!

Anyway, I wanted to share this with all of you - maybe I'll copy and paste it into the "treatments" area. All I can say is, my mind is feeling as sharp as it did 20 years ago, before my symptoms began, and it's given me hope in so many ways.

[lilbrez51]

I was just diagnosed with N about 6 mos ago. I have been misdiagnosed for over 10-15 years. I wanted to know if anyone has experience memory loss, mind cloudiness, and most of all word finding? I am a trainer. For years I have dealt with pushing myself to keep going. However, as I am getting older(30 with 2 children) I feel like I am going to pass out. I was put on provilgil. It did good for a couple of days then I got sick everytime I would take it. I cut down on my dosage. I am struggling now bc I am having huge issues with performing at work. My work ethnics are very high! Therefore, when I started to have problems typing a simple email. I knew this was a big issue. I am out on leave now, however, my Dr is referring me to another Dr bc he don't understand why I am having issue speaking/word finding, etc. I was in class one day and I opened my mouth to say something and nothing would come out of my mouth. As bad as I was trying to get it out I couldn't. It continued everytime I would talk. I wanted to see if anyone else has experience anything like this?

[lilbrez51]

Hi, I am new to this forum but, not to Narcolepsy/Cataplexy. I think the memory loss is one of the hardest things to deal with. I am an EEG/Sleep tech. by trade from the age of 19 on. I am now 51 on disibility. The hospital pretty much said don't let the door hit you in the ass on the way out! Loyalty, Right! I took the exams to be registered 3 times. I either slept thru them or couldn' d remember the answer. So, the memory loss /can't remember the word symptom goes right along with tha nasty word Narcolepsy. I hope this helps, unfortunately there is no cure YET! Take Care, Lori

[Lorz]

I'm having this problem, although I just started Xyrem and I take 20mg of Adderall XL, all of my symptoms have been getting much worse and still are. I feel like I can't think straight, can't speak a full sentence, find the right word, etc. I constantly forget what I'm doing or where I put something.

My car, house and purse are all jumbled messes full of prescription bottles, supplements, and coffee mugs....

At work, all I can do is sit here at the computer and zone out. I can't seem to finish my projects because I can't even think about them or remember to do them. I am so bad I went to a neurologist (before the N diagnosis) and got a brain MRI, which is normal.

If it keeps up, I'm going to get fired. What should I do? How do I tell my doctor this? I'm newly diagnosed, and have only had time to discuss symptoms, not their effects on daily life. On another post, someone recommended that they have their psychiatrist write them out of work on short term disability while they straighten out the meds. Maybe I need to do this too.

[AYCV]

I often find myself yawning or forgetful when I'm conversating. It seems rude like if I'm not paying attention. But I am and I eant to. I think that its a microsleep or something because I don't recall what I was about to say. Its embarrassing and very frustrating. At work I feel that throughoutv the years. N vhas become worse. I feel so foggy,unable to concentrate or frespond at times. I really feel so stupid at times I can't. Help myself. Does anyone else feel like this?

[Lorz]

I often find myself yawning or forgetful when I'm conversating. It seems rude like if I'm not paying attention. But I am and I eant to. I think that its a microsleep or something because I don't recall what I was about to say. Its embarrassing and very frustrating. At work I feel that throughoutv the years. N vhas become worse. I feel so foggy,unable to concentrate or frespond at times. I really feel so stupid at times I can't. Help myself. Does anyone else feel like this?

This is happening to me too. I just drift off, or micro sleep or whatever. But when I am really awake and trying to think about something or talk about it, it still gets all messed up. I used to be a good communicator, now I'm just ....blah.

[Fluffybunny5000]

Bad thing is that is effects all of our relationships, working, and just daily living. You forget to do things, forget things youve done so you do them twice.. I'll pay my truck payment twice and then ill forget to pay it. I have no idea what im doing anymore. The woman I was with i was so happy and then she just had enough. Everything just got screwed up over me not being able to remember what i've said and not said so it makes me untrustworthy when the truth is i am very trustworthy i just cant keep track of things.. So now a days i just kinda keep to myself so there are no mis-communicaitons but I tell ya the depression is reaching levels that I cannot handle anymore. If dealing with something as easy as narcolepsy ( i mean seriously how hard is it to just give someone the benifit of the doubt its not like i have some kind of horrible illness that is taxing on others) then how can i ever be with anyone?

[Sleepingcrow]

Bad thing is that is effects all of our relationships, working, and just daily living. You forget to do things, forget things youve done so you do them twice.. I'll pay my truck payment twice and then ill forget to pay it. I have no idea what im doing anymore. The woman I was with i was so happy and then she just had enough. Everything just got screwed up over me not being able to remember what i've said and not said so it makes me untrustworthy when the truth is i am very trustworthy i just cant keep track of things.. So now a days i just kinda keep to myself so there are no mis-communicaitons but I tell ya the depression is reaching levels that I cannot handle anymore. If dealing with something as easy as narcolepsy ( i mean seriously how hard is it to just give someone the benefit of the doubt its not like i have some kind of horrible illness that is taxing on others) then how can i ever be with anyone?

Sorry she didn't get it fluffybunny5000. I think I was talking the same way you were about a year or two ago, and my friend, who has witnessed not only the full on drugged up affect of narcolepsy I get where sleep doesn't come, but the full body major cataplexy too (a rare thing for me), seriously didn't get why I didn't think anyone would want to be in a relationship with me - at that time my cataplexy was not only getting worse, but was happening at what I'd call a medium level for days at a time with a day or two in between that was fine, but was filled with narcolepsy.

Now that I have most of it worked out, with a scattering of bad days here and there, I'm looking back and thinking, if someone can't handle the ups and downs as something as innocent as narcolepsy, then there's something else going on there too. I say this, because everyone has some sort of issue, physical, mental and/or emotional. I understand she might have gotten frustrated, but you two could have figured something out by getting a chalk board or something. I doesn't sound like she took the time to truly try and understand and learn how to support you, as she would have done with any issue.

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My mind has changed too. I had a photographic(?) auditory memory - I remembered anything and everything I heard, so if I talked about what I was studying I got, on average, a 98% in my classes. Then everything went to hell, I was able to help other students understand the subjects, but even talking about it didn't help me remember what I needed during an exam. My marks fell down to a C+ average. Telling a counselor "something is wrong!" didn't help. He gave me an I had an IQ test, which resulted in him saying I should be getting the grades I was getting, but all through the test, I couldn't answer half the questions, many of which I knew I knew the answers to, but in that moment of frustration, I had to say "I don't know". That was 1993. It wasn't until 1998 that I began falling asleep at work in the most severe way, and my doctor didn't hesitate in getting me an appointment with a sleep neurologist.

On a bad day I'll have a dreamy, vague recollection of knowing something, I'll just have no idea what it was. It feels like the knowledge is pushing through a 6 foot thick rubber barrier. I can feel it coming, I know it's there, but it never get's through. On a good day, as I mentioned in my post above, I have those moments of clarity where I'm just absorbing new information like a sponge, my mind feels so quick and "normal", but not on the level I had 20 years ago, there's still a thin silk veil.

I do believe there is some sort of genius there. I say this because I think narcolepsy allows us to access other parts of our brains while awake.

Despite this, I'm having trouble getting things done. Things I would have done easily, that are extra in life, ex. calling to get my appliances fixed, takes so much... effort? I don't know the word, I just feel a resistance that has fear mixed in, it's a feeling of being overwhelmed easily by the extras. Most days, I'm only able to focus on the primary parts of life.These extras... somewhere in my mind I know it will only take a moment, but for some things, it has taken me years to not do. It's not the same as procrastination. It's about what my brain can handle. And it all plays into the confusion and memory thing - it's so easy to forget.

[Heidi L]

Dementia?
I had it so bad I could not remember how to take a shower or get dressed.

IT DISAPPEARED AFTER TWO WEEKS ON A GLUTEN FREE DIET.

AND I HAVE NOT HAD ANY NARCOLEPSY SYMPTOMS SINCE.

It has been almost five years.
And I now have dozens of reports of similar remissions from narcoleptics.

[Lorz]

Dementia?
I had it so bad I could not remember how to take a shower or get dressed.

IT DISAPPEARED AFTER TWO WEEKS ON A GLUTEN FREE DIET.

AND I HAVE NOT HAD ANY NARCOLEPSY SYMPTOMS SINCE.

It has been almost five years.
And I now have dozens of reports of similar remissions from narcoleptics.

Heidi,

I have been finding this to be helpful for me as well. I usually eat the Paleo diet, gluten free by design. If I cheat and have anything with gluten, I need to sleep. Otherwise, between gluten free eating and taking my meds, I've been doing extremely well.

[shakysleppy]

I am just glad that I am not the only one who has these memory issues. I have to assume it is a common thing for us Narco's to have this problem along with the high doses of medication. There are some days I cant remember anything that I did an hour ago or even the day before.

[Katty0]

This really affects me on the phone... I hate talking on the phone now because I don't have anything to concentrate on and will "zone out" I think even nap! If I have the TV, computer or anything on I find myself forgetting I am ON the PHONE! It is so so so embarrassing

I have taken to telling people to text me not to call me, because I dont zone out reading a text and I still have a photographic memory so I at least remember something when it is in a text...

[tabster1]

I think this is called aphasia. It is common in brain injury (which I have as well). I never thought that it could be part of narcolepsy I always just thought it was my brain injury. I've gotten really good at talking "around" the word I want. Instead of trying to think of the word I just try describing it then it usually comes to me.

Some medications can also cause this, I was on Topamax for awhile and I forgot EVERYTHING.