cataplexy symptoms

[lysergia]

i know i need a sleep study. i know it. this is not a time in my life that i can make this happen. i'm waiting to get the call any day that my dad goes into surgery and then i'll be unavailable for months while the radiation happens... and then whatever scary things happen to him.

after that i'll get on the uberlong waiting list, IF i can get a doctor to believe me long enough to put me on it.

but the cataplexy is coming back - that heavy feeling in my legs where i can't really feel them from the hips to the knees. in the last month they've buckled under me a few times and i've fallen.

i really thought what was aggravating it was the effexor.... i really did. i was at 225 when the worst of the cataplexy was showing itself (posts from september probably?). i'm at the lowest dose now and trying to get off it and can't seem to yet.

not only does it freak me out (i can handle the heavy limbs... it's just the nightmares and the falling i'm afraid of). i'm scared i'm going to do this while i'm at the hospital with dad. i can't be unwell or mental or anything while this is going on, i just can't... my family needs me to be strong for them, just as i would probably need them if i were getting some more cancer ripped out of me.

is there anything - ANYTHING - i can do in the short term? my searches have come up with nothing. i refilled my benzos again yesterday, something i don't like to take every day but i will (i'll take 'em anyway just so the being mental part stays in check). a vitamin? mineral? animal or vegetable? broomstick up my ass so i don't fall down?

if i could just pinpoint what the trigger is, but it seems to be so random. i think it's anxiety that triggers it, but it doesn't always fit. when you have narcolepsy it's emotion-triggered, right? just the emotion is different for everybody.

thanks if you even read this. i'm not really expecting there's anything i can do, i'm just hoping for some miraculous piece of information that will get me through the next few months *tears out hair*.

[AirMarshall]

Sounds frustrating and a bit scary. I did just a quick read on cataplexy. Looks like treatment is straightforward with common psych meds, e.g. TCA's, MAOI's.

You can't get better till you see a doc. You may as well get the ball rolling and get scheduled, regardless of what treatment course your dad follows. You can't tell me that that it's impossible for you to take one or two nights to get medical care for yourself. Somewhere in the circle of family, friends, neighbors or even paid care, someone would be willing to sit with your dad for a few hours. Taking care of yourself is the best way to help your dad.

best wishes, a.m.

[crazycatnapper]

Basically, ADs are used to treat cataplexy. Otherwise, Xyrem, but you must have sleep studies and even then many docs are scared silly of it.

Not all of us have only emotions as triggers. For me, getting really cold and staying cold used to trigger an attack. My meds keep my C in check for the most part, but I still get breakthrough episodes in extreme circumstances. My big one is fear. Stress/anxiety is at the top of my list too. It all just depends, but laughing doesn't really do it for me. I'm one of those that the "negative" emotions are triggers. Anger makes me fall down sometimes, even on meds, but I have to be really, really pissed off.

There are times when I cannot pinpoint an emotion that precedes a C attack. Try as I might, I just can't find one. I'm not the only person who says that either. I chat with a great group on another site (talkaboutsleep.com) and you may want to check it out.

About the only thing I could say that will help is magnesium. Just make sure you balance it with calcium. Effexor is used to treat cataplexy, but it made mine worse. Once again shows how we all react differently to meds.

Good luck. With the stress you are facing, controlling your C may not be easy. Just remember that cataplexy doesn't mean you are unwell or mental, so don't add that stress by beating yourself up. Yes, it sucks, but if you have attacks, just try to cope as best you can. It's all we can really do, after all. And I agree the nightmares really suck. Ugh.

[lysergia]

thank you both.

i know getting that study scheduled is important. i'm in that stupid depression cycle that makes actually taking action really hard :/

but i know nobody else will do it for me, and i won't have any of this solved until i do. if i call my GP today (which i have to anyway, so this works), i'll get an appointment for next week or the week after (maybe i'll be here to go, maybe i won't... my family lives 200 km away). then he'll listen to my symptoms and either dismiss me, try to pass it off on to my pdoc (who i already tried to talk to about this, he thinks it's me being dramatic), or actually refer me to a sleep specialist (yay!). then i'll wait at minimum three months for a call from that clinic, who will schedule me for an intake interview minimum three months after that. at that point, i have no idea how long it will take to get an actual "sleep study", if they give me one at all.

so i'm looking at maybe a year from now... if i start the ball rolling today, and if my gp will listen to me.

i wish i were exaggerating, or that i could tell you there are other options for me. this is the way it works here, rich or poor. you can't even buy your way into doing this faster. for example, i've been waiting for a tdoc appointment for about seven months now. my daughter's been on the tdoc list for three months, and she's in the children's system - no mention of an appointment yet.

so yeah there's my panicky need for quick short-term solutions :/

i won't be able to take time out to go to a doc.... i'll be three hours from home, without a car ( i don't drive).

so all i have to rely on are meds and the ideas of smart people here heh

magnesium and calcium.... thank you! i will go get some today. i'm also buying some ensure to make sure i get enough calories too, in case that's aggravating things. i've also thought that maybe i'll break up my sleep for maybe four hours twice a day, so that there isn't as much time to get into (and get mental over) the nightmares. i'll let you know how that one works

thanks again. i think i'm worried more about upsetting them than me. last time my mother saw me do this she freaked out.

[crazycatnapper]

Holy Crap. I can't believe it takes so long. I guess you aren't in the US, but your profile said unknown location. However, I saw Canada mentioned. Do you have to get a referral? Luckily, I was able to just call a sleep specialist and set up an appointment. I was seen in about a week and had a sleep study done about a week or two later. I'm so sorry it will take so long, but don't give up. The sooner you make the call, the sooner things will be put into motion. If your docs won't listen to you, then complain over and over. The squeaky wheel gets the grease!

Has it ever ocurred to you that you may not even suffer from depression? The only reason I am asking is because I was labeled that way for 20 years when it wasn't my problem at all. Almost everyone in my support group was given a psychiatric diagnosis, incuding depression, bi polar, and borderline personality disorder just to name a few. Unless you get a sleep study and get treated for narcolepsy, you can't find out if you also suffer from depression, which you may or may not have cocurrently.

Even though you will be away from home, you will be at a hospital I suppose. Can you possibly get a study while you are there? Maybe there is also a sleep clinic in that area and a family member could drive you. Just some thoughts.

Good luck and keep in touch.

[lysergia]

thanks

yeah, unfortunately everything here needs a referral - unless it's allowed to be paid out of pocket - like private psychiatrists, dentistry, plastic surgery, and so i found out a few months ago, myofacial pain specialists (yeah, like i'm gonna find money for THAT! ha.).

even if i could get around this with money, i don't have any. so it's moot anyway.

dad's having surgery in the next province over, which means unless it's a lethal emergency they aren't allowed to touch me.

i sometimes do wonder if all this depression really is real, or a product of my fucked-up sleep. the first time i ever had a bad cataplexy attack was just before i hit a major rock-bottom depression, for the first time in my life. then the night terrors started, and my depression got worse and worse.

like all the shrinks i've ever seen, i've explained it all away by saying the sleep stuff is trauma-linked and so is the depression... but man this has been happening all my life (just not as frequently as now). in all these years no kinda talk therapy has made one iota of difference in the depression department. maybe it's time for a new answer.

thanks for keeping up with me

i'm learning real well how to be a squeaky wheel heh. in this system, you have to or you're dead.

i haven't lost any limb control or anything like that since the last episode, so maybe it'll calm down now for awhile. usually the episodes hang around for awhile.... this one seems to be mostly finished. so i have a little confidence that i won't fall down in the waiting room, at least

i've also decided to print out something about narcolepsy/cataplexy for my mom. it's her that gets scared the most, and i think if she reads that i'm not going to like die from it or anything then she'll feel better.... even if i do fall down. it doesn't mean anything right now other than i need help getting back up. and i'll need a chair (or the floor) for a little while

interesting but probably just coincidental: extra yoga helped the heaviness and tingling sensations to some degree.

thanks again

[chipmunk]

I have found that if I feel a cataplexy starting that if I concentrate on wiggling my toes that it helps circumvent an episode. I read it on a cataplexy website and have found that it really helps. I don't miss the terror that goes with it either! HTH!

[crazycatnapper]

I'll have to try that chipmunk. Thanks. Unfortunately, I generally don't get much warning. They just happen and I have to deal with them. On the plus side, the Parnate controls my cataplexy very well, so I only have episodes in extreme cases, like when I get extremely scared.

[lysergia]

I'll have to try that chipmunk. Thanks. Unfortunately, I generally don't get much warning. They just happen and I have to deal with them. On the plus side, the Parnate controls my cataplexy very well, so I only have episodes in extreme cases, like when I get extremely scared.

glad the parnate makes it less frequent! i wish i could say thus far what helps and what doesn't. i don't get much warning either (usually), just randomly the limb is "gone". the limb heaviness thing can be gradual though. so maybe i'll try the wiggling too!

i am glad you resurrected this topic. i wasn't putting together, again, that this was happening just before a downhill depressive episode. i forgot i posted this not only three months ago, and it's been since around then that i started being too tired for life and then consequently depressed.

i'm getting bloodwork results back tomorrow to rule out other physical stuff, but maybe if that comes up with nada (i hope not for the sake of ease)... maybe this should be brought to the pdoc's attention before we go messing with my psych meds again (which is what i am trying to make the last resort of).

if narcolepsy is generally treated with ssris, and i don't have one in my system anymore, wouldn't that mean my symptoms would present more often or regularly? truly this is the first six-month period where i haven't been on an ssri or snri for about ten years. i can't remember what to compare it to. except that it always existed. bleh i hope this does not mean back on the prozac. wouldn't be the end of the world but i was pleased at being able to drop a med.

- rita

[LikeMinded]

My cataplexy is only mild and partial... mainly occurs with yawning or extreme laughter, and makes my left leg buckle... so I guess I'm lucky (just need to make sure I've got something to hold onto whilst yawning... pretty much listening to a Judy Tenuta routine is a slip/fall accident in the waiting).

I put up another vote for talking to your doc about Xyrem, it seems to be touted much for cataplexy specifically (as opposed to EDS, which theoretically Xyrem could exacerbate it if it gave you a hangover).

[Silver]

Rita,

I see from the above that you don't drive. However. What happens if you politely ask your GP (or whoever the referral source is) about what you should do about driving until you have a diagnosis?

I'm in a somewhat rural area with limited sleep lab options. I just learned last week that this little trick moves one far, far up the line at the sleep lab, as long as it's in writing in the referral.

US, not Canada, so entirely different milieu, I know. Just throwing it out there...

[lysergia]

thanks all for the ideas. my thyroid tests did show i need more synthroid, but this isn't the entire picture. once i get back up again (just about literally) i will definitely use the "i can't drive because of this" argument - you are right that would speed things up real fast (it's a human right to be able to drive you know! heh). i never thought of that, thanks. and then when it does get listened to more seriously i will talk about Xyrem and its success (or not) in people like me on the meds i'm already on and whatnot...

i'd do anything not to be this tired and have these many fucked up dreams anymore. i'm not waking up without my legs right now, but i can't fall asleep after two minutes often because i have the DEFINITE sensation that someone is scratching a nail up the right side of my back - like pins and needles but SHARP and enough to startle me into checking if something is there - the muscles actually contract and go momentarily numb for about ten seconds. it is so convincingly real. it occasionally happens when i'm awake too. this is just too much fun.

when i was a kid i thought narcolepsy was funny. fuck me.

- rita

[crazycatnapper]

Xyrem works wonders for many people. Didn't for me, unfortunately. Just because they Rx AD's for Narcolepsy, doesn't mean they will again in your case. And you have to find the right one for you. Many AD's make you tired, so they should be ruled out if you have N. Anything that works too much on Serotonin makes me tired and nuts. You have to get some sort of stimulant if you have Narcolepsy. Even some who use Xyrem successfully still have to use a stimulant in the day. If you want more info, go to www.talkaboutsleep.com. Their Narcolepsy board is an amazing wealth of information and I actually pieced together how many of my symptoms were all related to N while looking at their boards. It's amazing how many things having N affects. It's not all about sleepiness or catalplexy. There is a whole range of other bodily functions N affect. Thyroid, hormones and blood sugar are some of the biggies.

I don't check this site too often because the sleep boards aren't extremely active, but I always drop in on occasion to read posts.

Please keep us up to speed on what you learn and good luck.