Posted 13 October 2007 - 10:13 PM
Part of the problem is that the EDS doesn't happen in full strength every day. It does happen more after exercise.
Six months ago I had the first of several unexplained falls, that landed me in the ER because I hit head first when I landed. Both of the two outdoors falls involved my left leg collapsing--but it's my right foot that has the drop foot. I was tested for Myasthenia Gravis, but don't have the characteristic response to the acetylcholine test, so it's not that.
One day as I came out of a store I "wobbled." I couldn't quite walk, and lurched from one side to another. I'm sure I looked drunk. It last all of 20 seconds, and then I was fine. I've had another short episode when I couldn't plant my feet where I wanted, although balancing was not as hard. That was for 3 minutes or so. Tonight I suddenly lurched into the kitchen counter when my right leg gave way for a second.
Several years ago I went to the Matrix Reloaded with my daughter and son-in-law, saw the opening scene, and fell asleep. I can be wide awake, turn on the TV news, sit, and be asleep without being aware I am falling asleep.
I'll pause here. My main question is about cataplexy--how many different forms does it take? Does it usually affect the legs?
Below is some more description if you want to respond to that.
I have called my doctor and made an appointment for a week from Monday. I'm not too hopeful that she will agree, or help.
(extra, on sleep)
When I read the NINDS description of how PWNs fall asleep, I was pretty sure that described me. I've fallen asleep for 20 seconds in the midst of a conversation with a friend; I've faded out and couldn't function mentally when tutoring. Sometimes I barely make it to the bed to fall asleep; today I did grocery shopping, came home, put away the groceries in quite an active fashion, fixed some food and ate it (standing up), took the last of my coffee to my favorite reading chair, sat down, put my feet up, and fell asleep for 45 minutes. Once I could walk, I walked around a bit, got some water, and sat down to read a book. I read a chapter, and was asleep again for an hour. Typically when I get into bed, I'm dead asleep within 5 minutes or less. I remember that I used to doze and daydream when falling asleep--I don't anymore, I just blackout.
Posted 14 October 2007 - 12:00 PM
My first catapletic episode that I remember I was riding in the car with my then boyfriend, I was holding a big gulp (that was still full) and telling him some stupidly funny story, in the midst of my laughter my throat felt as if it sunk into my chest and my wrist which was holding the cup completely gave out as well... needless to say the floor was covered in lemonade.
My second episode came a few weeks later, we were walking across 5th Ave. in manhattan and of course my (once) jokester self was at it again, this time my knees both buckled as my legs gave out leaving me kissing the crosswalk. He picked my up and I laughed it off.
Over the next few weeks and months I would feel my neck giving out for what to me felt like 10 min, but really lasting only just a few seconds, I began to ask people if they could notice, and sadly they could not.
A few months later we were in my home and in a heated argument, while shouting and feeling my blood boil, I felt the jello-like feeling taking over my body... this was new. Suddenly my bottom was touching the ground I pumped my self back up to a stand and buckled again, I pushed my self up the third time only to be 'thrown' back by this feeling inside of me... honestly I felt as if I was seizing... (what one would imagine seizing to feel like based on witnessing a seizure),
I blanked out for a few minutes in this position... my poor boyfriend was ready to take me to the ER thinking that I had experienced a seizure, but after I explained to him that I had not lost consciousness, we decided it was time for bed, and a doctor's appointment in the morning. I never went to the doctor.
At this point (after that argument) i'd observed on my own that all these "jello-body' experiences I was having were brought on by strong emotions.... such as only when i really thought something was so funny, when i was so upset and verbally expressing it, or when i was trying to use my voice to protect others ( like yelling at these kids to get out of the road cause of a speeding car but my tongue going limp and jibberish coming out instead.)
This lead me to the internet I began looking up everything that i thought it could be muscle spasms, seizure like activity, pinched nerves and muscle control, nerves and emotion; and suddenly after days of searching I saw a word I'd never seen before, Cataplexy. When I clicked that link my life changed... there were all my symptoms of cataplexy and all my symptoms of Narcolepsy.
I waited a year to go for a sleep study, because no one else around me believed me when I told them what it was that I had diagnosed my self with. I needed on positive reinforcement, so that I would know that I would have at least one person who would understand how my life would have to change.
Needless to say now with Provigil I have very few catapletic episodes a year ( I have been on it for 2 years now.) Before hand I was having 5-10 a day. Mostly my cataplexy is centralized in my legs and in my chest, it feels as if I am internally convulsing. But I know what triggers it and i try to avoid it, it has become subconscious and seemingly has taken my laugh away, my temper and my enthusiasm... because all of those would have me falling down. The only place I allow my self to fall victim to cataplexy is during sex.... makes for a very interesting climax. lol.
Posted 14 October 2007 - 04:05 PM
And your partner knows, absolutely, you're not faking it!
I'm on a couple of medications that may blunt the effect of triggers for cataplexy. The meds are gabapentin (Neurontin) and low dose nortriptyline (Pamelor), for peripheral neuropathy. I think surprise may have been part of my two falls to the sidewalk--but that's not terribly convincing. I've tried to get up from a chair (with good quad development) and done what my PCP called "Jelling"--just nothing there for 40 seconds or so. I just don't remember anything unusual beforehand. I've done the sudden drop and throw of a full container of chocolate shake, all over the kitchen floor. Again, I don't remember anything beforehand; it just happened.
Then there are micro events, dropping a bottle of pills all over the floor, things like that, but no palsy, and hands work fine the rest of the time.
I *am* schooled not to have outbursts of emotion, and try always to be on task.
In other words, without triggering events, how do I convince my doctor that it *is* cataplexy and not some non-specific symptom she calls "jelling?"
My internet search has been for some kind of muscle wasting that's not connected to what nerves are doing: I just found "myositis" of various kinds, possibly connected to taking Lipitor, which I've stopped.
When you were having 5 to 10 cataplectic episodes a day, were they all in response to triggers like anger, laughter, surprise--or did some of them just happen?
I'm very grateful for your post--and all the best!
Posted 14 October 2007 - 10:14 PM
If you cannot get any answers from your Dr. find another Doctor. Like I said, I would not give up, I knew I had become a different person, and could not get any answers, I was told I was exaturating, all of my symptoms, was sent to psychologists , psychiatrists, had several MRI's but until I got to a Dr. that really knew about sleep disorders , I was not diagnosed. I have been on several medications with little relief , now I take Xyrem and also ritalin, besides all the other meds, anxiety and depression , fybromyalgia, and blood pressure. I have now not had a catepletic attack in a few months, still have severe EDS, and fatigue, but the Xyrem still is being adjusted.
Until you get a true diagnosis don't ever give up even if you feel the dr.s think you are crazy.
Narcolepsy is still such a mis understood , and rare condition there is not a whole lot of regular M.D.s that have really studied about the symptoms of narcolepsy. In my research about narcolepsy I found out that in medical school there is not a whole lot of time spent on sleep disorders.
I have a rare case, because my head injury is what triggered mine, and I suffer from all of the symptoms. which my dr. says is a small percentage of the people that is diagnosed with narcolepsy.
So don't give up until you get answers.
Posted 15 October 2007 - 04:39 PM
Lucky: I had a doctor that I would explain to how tired i was for years... she was my pediatrician, It's Mono it's epstein Bar it's strep throat it's Chronic Fatigue.... It's cause you need your tonsils out... GOt my tonsils out (Best diet ever in adulthood not that my 130lbs frame needed it.) I was healthier yes but still tired...
Next doctor now family practioner for another 2 years. LUckily i had insurance that did not need referalls after I diagnosed my self I went in for a sleep study I was sent home after 3 naps on the second day.... lol... totally had narcolepsy.
The sleep dr. said to me what are you here for and I said to him I am a narcoleptic he said he would be the judge of that and apologized the next day while telling me that I was right.. .lol.
I used to be really hyper and happy and active... so people were starting to think that I was bipolar and I was starting to resent that , cause one minute i'd be jumping around acting out my stories and the next I'd be passed out on the couch. But I knew what I knew and I felt and believed that I was right. Luckily I found a doctor who stopped to listen to a desperate 22 year old girl.
Posted 15 October 2007 - 07:40 PM
Posted 15 October 2007 - 09:59 PM
Posted 15 October 2007 - 10:26 PM
Posted 16 October 2007 - 03:33 PM
Posted 19 October 2007 - 04:03 AM
Posted 22 October 2007 - 02:03 AM
Posted 22 October 2007 - 02:22 AM
Posted 26 October 2007 - 01:29 PM
Posted 27 November 2007 - 01:04 AM
Cataplexy can take so many different forms in different people it isn't a good idea to try to put the symptoms in a box or define them.
You were smart to go to a doctor. As should anyone that begins falling down and losing balance or any other unusual symptoms. Unfortunately, it can take many doctors and many years, to receive the correct diagnosis. After 3 years I finally cried when they found the problem. I live in a small town. I knew something was very wrong, but got the old pat on the knee that I was fine and should just go home and rest. Knowing what I had was a huge relief.
Don't ever stop looking for the right doctor when you know you have a problem. I'll bet I'd been to over 25 doctors. Refuse to give up and refuse to accept any diagnosis you don't believe to be correct.
Posted 17 December 2007 - 06:12 PM
was sitting down on the floor watching tv comedy
then I started to laugh and the next thing I remember was I couldn't move at all, not even my fingers...
after that was just keep droping bowl when I eat and books when I walk
but right now it doesn't happen often
Posted 21 December 2007 - 01:46 AM
Have you checked out artifical sweeteners-their side effects are just like our syptoms. I have given up coke. I am also getting neuro feedback with good results. Anyone else?
Posted 29 January 2008 - 07:47 PM
Could be! I feel like if I could ever get rested I wouldn't ache all over and be so darn sensitive to pain! I am set to start Lyrica...is that like Xyrem?
Posted 12 February 2008 - 03:10 AM
Well...I got fat...I hated to be around people...I started seeing (what appeared to be) the sky melting...
Oh...and one other ugly side effect...Zyprexa makes you want to sleep.
I actually had a Doctor tell me to, "Get up! Get some fresh air!"...
When I told him that just couldn't be done, his professional advise was to "Fake it until I make it".
It is important that we take our own health matters in to our own hands, and I don't mean with just narcolepsy. WE HAVE TO ASK QUESTIONS! Just because you call the person "Doctor" doesn't mean they can't hand out advise that can kill you.
The "Shrink" will approach it as a mental issue...
The Neurologist will have his hypothisis on what it is...
Whatever the Specialist, they will want to help with the knowledge that they have. It's important that we ask other doctors and ourselves what it MIGHT possibly also be that makes us drop to the ground when we laugh. Sometimes we have to have the courage to ask the doctor, "Are you SURE this is a mental disorder? What else could it possibly be?"
Otherwise the wrong medications are just going to keep on coming, and making life worse.
PS...I LOVE THIS BOARD!!!!
Posted 12 September 2008 - 10:50 PM
My episodes can last anywhere from a few seconds to a few hours. It can affect any part of my body, but it happens in my legs a lot.
Posted 12 September 2008 - 10:56 PM
The Neurologist will have his hypothisis on what it is...
Actually, they both do the former. I've seen countless neurologists and a few psychologists and the neurologists all love to practice amateur psychology rather than do their job. I think this is because they hate to be wrong and they can't bring them selves to say "I don't know." It's easier for them to just pass the harder cases off as 'anxiety and depression' than go through the diagnostic process. Furthermore, "Sleep Specialist" is an oxymoron. I've only met 1 that knew what they were talking about. [no, I'm not jaded, never!]