55 replies to this topic

[ltanyaperry]

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?

[WakeChallenged]

I can't speak for others, but what you are describing is something I struggle with often. Between the Narcolepsy and the medication, I have memory lapses and most days I feel my mind is cloudy and unclear. I don't know how many times that I have been talking and I just stop in mid sentence because my mind goes blank and I can't remember what I was saying. There have been many times that I will start to say something and the words won't come out, or if they do they are all jumbled and don't make any sense. I too am on leave from work because the Narcolepsy/Cataplexy was impairing my ability to think clearly and the memory lapses effected my ability to perform my work.

[Andrea Egan]

You are not alone on this. Word finding has been a huge problem for me, as well. One particularly bad experience I remember was when it happened during a speech for my public address class. I totally lost my train of thought...in the middle of a sentence. And so I went on like a blubbering idiot and having all of those silent, beady eyes on me did me in. The anxiety overwhelmed me and triggered a cataplectic attack: I caught myself one...two...three times before I went down for the count. Once I was on the ground, everything was fine. I got up and said, "uh...sorry about that" and finished my speech. My teacher was impressed with how I handled the situation (the brain-lapse was long since forgotten), and all things considered, I earned an AB on the speech. If only all of these situations had happy endings...

And as a side note, I have since switched from xyrem (which I was taking at the time for 2 years) to effexor xr (75 mg). The latter has provided more complete cataplexy control but not without some very unpleasant side effects. Still trying to figure out how to get a sense of a normal life back and enjoy it, too...

[Cryopathic]

I have lots of memory Lapses and Microsleeps throughout the day, Sometimes it gets that bad I forget my own age.

[Chuck Z.]

Memory loss and loosing track of conversations/words is the main reason that I initially sought help. I guess it comes with the territory. Afterall, looking at the big picture, having this means that sleep is the body's main mode. Do you remember what goes on around you at 2 a.m when your snuggled up in bed? No. :)

My wife has given the micro-sleeps a pet name of "piffs". She is so used to it, that all I have to say is, crap, I justed piffed, and she will immediately recap the last minute or so of conversation, so I can regain my train of thought.

Chuck...

[Cryopathic]

Lol Thats a really good idea actually. I just 'piffed'. lol

[Andrea Egan]

My family jokes about it too. When someone is going to take a nap they say, "I'm going to narc out for a bit."

And my little sister will call and ask, "when are you going to come home [from college] so we can engage in narcoleptic endeavors together?" (she has narcolepsy, too) Ha ha, I love my sister. She is the best napping buddy!

[Timothy G. Havey]

Tim H. May 4, 2008
Has this happened to any other PWN? I am talking to someone, when, mid-sentence, I find myself talking about something totally unrelated. I usually realize what has happened, and with people I do not know well, I brush it off or claim I misspoke. With my wife, I just say DREAM INTRUSION and she understands. Or, she says 'dream intrusion' because she understands. I invented the term out of necessity. I compare it to watching television and the channel gets changed -- for a few seconds -- and then back again. Not surprisingly, this happens more often when I feel sleepy...but it has happened when I do not feel sleepy. I would guess this is some kind of a micro REM burst. I am conscious, but temporarily in an alternate world. ..like a micro sleep with consciousness, of some sort, retained. I am a 40 year veteran of narcolepsy, controlled reasonably well with a 'traditional' medication.'
About trouble finding words -- yes, yes. Trouble finding words, trouble making sentences, trouble even talking ('uh...ur...umm...').

[Chuck Z.]

Tim H. May 4, 2008
Has this happened to any other PWN? I am talking to someone, when, mid-sentence, I find myself talking about something totally unrelated. I usually realize what has happened, and with people I do not know well, I brush it off or claim I misspoke. With my wife, I just say DREAM INTRUSION and she understands. Or, she says 'dream intrusion' because she understands. I invented the term out of necessity. I compare it to watching television and the channel gets changed -- for a few seconds -- and then back again. Not surprisingly, this happens more often when I feel sleepy...but it has happened when I do not feel sleepy. I would guess this is some kind of a micro REM burst. I am conscious, but temporarily in an alternate world. ..like a micro sleep with consciousness, of some sort, retained. I am a 40 year veteran of narcolepsy, controlled reasonably well with a 'traditional' medication.'
About trouble finding words -- yes, yes. Trouble finding words, trouble making sentences, trouble even talking ('uh...ur...umm...').

It's all part of the "piff" for me Gawd, can i go on "tangients", ROTFL.

[Kimberly]

Well.. if you cut down on the Provigil and you aren't taking anything else to combat your daytime sleepiness, yes, you will likely have these kind of problems. Maybe you should look into one of the alternative simulants like Ritalin, Dexedrine, Dextrostat, Desoxyn. Lack of quality sleep can result in ADD-like symptoms.

My Neurologist explained it to me that it is really a 2-fold problem (3-fold if you have Cataplexy). Daytime sleepiness, which must be treated with stimulants; fragmented nighttime sleep, which must be treated with hypnotics (Xyrem or Benzodiazepenes); and the third is Cataplexy if you have it, which is typically treated with anti-depressants.

I started off only treating the EDS with stimulants and the Cataplexy with anti-depressants and I saw a slight improvement (I was a trainer for 15 years and more recently was a training manager, so I understand what your days are like and that you have to be "on" all the time) but I still had low points during the day, both from an energy perspective and from a mental function perspective.

I just started on Xyrem last week so I am giving it some time, but I am already feeling more refreshed in the morning and more alert during the day. So treating that nighttime component is so far very encouraging. I also switched to a different anti-depressant for my Cataplexy.. Effexor.. which also works on the norepinephrine in the body. Norepinephrine also contributes to energy so that is another little boost. If you are depressed about your work situation this might be something to consider as well if you can tolerate it.

Check out the Stanford University website for a list of generally-accepted medications for treating each component of Narcolepsy: http://med.stanford....edications.html and bring it in to your doctor.

There is another theory that is not researched enough to really have the backing of the medical community, but some people believe that people with Narcolepsy have a sensitivity to gluten (an ingredient in wheat, barley, and rye). I have read from people who eliminated gluten from their diet and felt that they had more mental clarity and fewer Narcolepsy symptoms, but at this point it seems to be completely anecdotal. http://www.lindborgl...m/SummaryN.html is the site, but I can't get it to load right now. You could try http://209.85.165.10...B...;cd=1&gl=us for a cached version.

It's good that you're out on leave. You should learn what your "highs" and "lows" are like by keeping a regular schedule and tracking when you are alert and when you are tired. Then when you do go back to work, you can structure your days around it. During your best times, do your interactive facilitation and during your low times, assign participant-centered activities so your students can do the work and you can rest. In my office we have a "mother's room" which is where breastfeeding mothers can go to pump their breastmilk, and I have gotten permission to go in there and take naps. Maybe during your low times you can organize guest speakers so you can literally step away and take a nap.

I ended up having to be off work for about 2 months to get everything regulated medication-wise. Even then, my doctor only released me back to 6 hour days. By the time I go back full time, it will be another 2 months of the shortened schedule. Just letting you know.

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?

[Chuck Z.]

Caveat Emptor: I hope this video link 'works'

Focusing more on the "confusion" *without* meds, I ran across this video which actually describes "me" to a "T" except that I would rate my confusion to be a little worse than described in the video.

Link to youtube:
My experiences with narcolepsy

[bella1963]

I was finally diagnosed with n about 3-4 yrs. ago though I had been sleeping my life away for over 20 yrs. prior to this time. I was dismissed as a depressed person and nothing further was done. Finally when I find a doctor who helps me and I start ritalin I feel like I am finally alive, I can go out, I can respond when spoken to, I am not constantly exhausted, day in and day out. Sadly, this happiness didn't last long. Less than 2 yrs. after getting the n diagnosis, I developed brain cancer and am terminally ill from it. Talk about being screwed! The medical community didn't believe me when I sought help either, depression again they claimed! Sure, I was falling down, was so nauseous I couldn't eat, I forgot what kind of car I had, and talk about fatigue! I had to nap after my shower and dressed one item at a time, I had to lay down I was so incredibly sick and exhausted.

Sorry, memory loss is the posted topic and I am off on a tangent as usual. I have memory loss, confusion, word finding problems etc. often. I always blame the brain cancer though. I can't work anymore but that is from the damage I have incurred.

[akemp0523]

I thought it was just me that did things like this. I have N. as well as hypothyroid and an extremely bad back. I simply figured that all the meds combined made me cloudy and forgetful. It's comforting to know I'm not the only one out there. BTW...I once told my Mom's nurse that there was urine in my Mom's blood (instead of the other way around)...LOL. Ann

[Julie A]

Because of the similarity, what about just forgetting what you're talking about in mid sentence? Although before I was treated, I had many sleep attacks lasting about 20-30 minutes each where I was sleeping while awake and know that this involved slurred speech, squigly writing, and forgetfulness, now that I am on Provigil, and still require naps, I do find myself having a converstaion and out of nowhere have no idea what I was just saying (and am wide awake). Maybe my sleep attacks are beeing consolidated into one split second sleep? Is this what you mean by "microsleep?" Anyone else have this with or without meds?

I will also post a question about this under the Provigil area in the Treatment forum, but figured it should be said here as well. Thanks.

[sleepylisa]

First of all, Bella1963 my heart goes out to you. You have truly been dealt a difficult hand and have so much to overcome. Life can seem so unfair sometimes. I always tell myself there must be a greater purpose for the trials we go through. You will be in my thoughts and prayers. Stay strong and never give up. That goes for all of us too!! This is a lifelong battle we fight and we have to keep trying, even when we feel alone, misunderstood, and cheated.

OK, back to the topic. I have major problems with concentration that seem to be worsening with time. I often "space out" mid-sentence and completely forget what I was going to say. I find myself continually saying "uh, what was I going to say? I lost my train of thought." Sometimes I can get back on track, but more often than not I leave sentences incompleted and thoughts half processed. It's irritating because I often can't let it go and sit there with a nagging feeling like I was about to do something or say something and I can't just let it go and move on. It hangs there at the edge of my consciousness like an unwanted intruder.

I am also having problems with memory and lapses in time. On Wednesday I forget what I did on Monday and have to check my calendar to jog my memory. It's embarrasing and I think sometimes it makes me look stupid. Especially if I am talking to my son's teacher (who is autistic and has learning disabilities). I always wonder if they are thinking "No wonder her son has problems...his mom is a space cadet."

Does anyone know if this is from the Narcolepsy or from my medication?? I take Adderall and Effexor for my EDS. I've been on Adderall for about 3 months and while I can now stay awake all day I have these memory lapses. My husband gets irritated and says "I hate it when you are all pilled out.". But he hates it more when I am sleeping all the time so I guess I will just have to choose my battles wisely. --lisa

[sleepylama]

sleepylisa,
I do not think it is meds personally. I was only diagnosed in February and prior to that I had years of memory lapses and things like that. My hubby and I flew across the country on a 4 hour flight and I have no memory of it. He says we chatted, watched a movie, and ate a snack. Although I seemed tired, he didn't have an indication I was asleep. I have more of these types of examples than I can remember! (hehe, I know, bad joke.) During the flight across country, I wasn't on any meds at all, for any issue. Just my past experience.

Bella,
Stay strong, keep us posted on your progress. I will keep you in my thoughts!

[excuses]

I really have to add to this blog. I have had Narcolepsy with Cataplexy for so long now that it is great to finally be able to connect with others who are just like me Oh, how many times I have wanted to run and hide with embarrassment. I smile now when I think back to the faces of people when they ask me my age (blank), telephone number (blank), address (blank) or child's birthdate (blank). 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 What really gets me though is when I am speaking to someone that I know really well and their name goes blank. They do look somewhat annoyed and that really upsets me. Saturday, my daughter-inlaw called me to remind me of her open-house on Sunday. I marked it on my calendar and said I'd be there. I forgot to mention it to my husband. Sunday afternoon came and went and I forgot to go to the open-house - not great for family relations.

[Some1whocares]

Dear, MEmory loss and confusion ...............

Wow! I wondered what was going on with me.I read your entry and others that identified with you . I'M going through these things too. Memory loss of my age,times and dates of important events,my phone number( if i don't dial i often enough) my anniversery etc.Confusion and train of thought . Finding the words to say in the middle of a sentence.I wonder what it is about narcolepsy that causes this to happen. Is it the medication or what? I take adderall.

Lets talk, Some1whocares.

[RipVanWinkle]

What a relief, I'm not the only one losing it then. I have serious problems concentrating these days, forget the day, couldn't remember my age on my birthday, forget what I'm talking about, never manage to tell a complete joke, etc. Sometimes if I'm trying to study something I'll pick up the book and it just means nothing. I just don't absorb the information. Of all the the problems I have this is the worse to deal with and hardest to accept. It sucks, I've always relied on being sharp and able to process things quickly.

[Marcianna]

My memory is very funny. I can remember thing as early as 6 months old. (yeah that kinda blew my mind too) all the early stuff is very vivid for me. But as I got older my brain just kinda quite absorbing I guess. Or maybe was miss filing the information..... I dont know.

I am a very random person now. I will start a subject and then get side tracked and then like an hour later pick up where I left off. sometimes I will be all like "blah blah blah...." DEAD STARE INTO NOWHERE....... then back to talking again. I always have trouble with words. It seems my brain is faster than my mouth and my mouth loses track of what the brain wants to happen. It's complicated. I hate it when people ask me to repeat myself because usually I am not 100% sure of what I just said out loud, even though the concept of the conversation is very clear in my head. (which makes fighting with the boyfriend ever so pleasant... )
Another thing that I find very annoying is What I call "being clausterphobic in my head" That is where you are trying to do a million things at once and there is a lot of pressure and the words are jumbling out of your mouth and you feel like everyone is looking at you like your stupid. All this is going on then you get overwhelmed and your body decides "eh... I dont wanna do this right now..." and so now the only thing you can do is take a nap. Leaving behind you a whole lot of stuff unfinished.

(meanwhile anyone around you is thinking... "I dont see the big deal about making a PBJ sndwich?" because in real life these task are nothing at all to do. Your just to tired and cranky and "get off me!" to do it. Classic case of making a big deal out of nothing.)

Ok well speaking of naps I'm off to have one. I'm starting to feel a bit rambly..... lol. what you couldn't tell?
I cant even remember what this thread is about with out looking.......... ::dead stare::........ oh, what? ok I'm out for now!!!!