I was just diagnosed with Narcolepsy with Cataplexy yesterday, after six months or so of having what I thought were fainting spells daily. I'm very relieved to know what's going on now, but I have some concerns on how to function with this condition long-term. Originally I thought my problems would just go away but with my diagnosis I realize medication/lifestyle changes may help but I'm still going to have much of the same issues. I haven't started meds yet but I will be taking Provigil soon.
My question is, does anyone have any advice regarding having severe sleep attacks/cataplexy in public? I'm going back to college within this month, and am very nervous because when I have an attack I lose control of all my muscles and can barely talk. I also need to lie my head or full body down. Usually the people around me understandably panic, and I never know how to handle the situation. For the past few months I've been avoiding being in public places, simply because I don't know how to deal with the reactions but I realize that this is not a good solution.
I would love to hear about any similar experiences.
Here are a few suggestions that I have found helpful for Cataplexy:
- consider a medical alert bracelet. You can order it on line and write your own text. Mine has a description of Cataplexy.
- learn how to fall. For me, fighting it or trying to push through it has caused injury. Just let yourself go down gently.
- know your triggers for cataplexy and keep yourself safe. For me, startle is a trigger so I try to keep aware of my environment. I am careful crossing busy streets.
- Know that medications do reduce Cataplexy, so it should be less severe than it is now. My minor and mild Cataplexy is well managed with Effexor. My severe is infrequent but not really impacted by medication.
- Keep yourself fed, hydrated and reduce stress as much as possible.
- Reduce carbs and sugars during the day.
- Get some regular exercise.
- Let your loved ones and those close to you know just to let it pass. They do not need to call an ambulance or make a big deal unless your safety is at risk or you are injured (unlikely).
- I was concerned about annoyingly helpful strangers in public when Cataplexy occurs. I have joked with my wife that I will say I have bad gas- so they just go away and ask no questions. But honestly, with medication it really doesn't happen much.
- Since you are returning to college, make sure to avoid too late nights and try to keep a regular sleep schedule as much as possible. Be veeerrrry careful about drinking- alcohol amplifies my sleepiness.
- Avoid walking alone at night. I would be concerned that a young woman alone with cataplexy could be an easy target- not to scare you but just cautious.
- Know that your medications have a street value and are desirable on a college campus. Keep them locked up and don't tell other people what you are taking.
- Consider letting your college office know that you may need some accommodations to help you manage.
I hope this helps. Others will have suggestions as well.
Hank gave you excellent advice.
You will learn to control them better as time passes. There isn't really much you can do when they happen with strangers around. Fortunately they don't last too long and when I am able to speak again, I usually apologize for scaring them and tell them I'm OK.
Who knows...you may meet the love of your life as he rushes to assist you.
Thank you for all the suggestions Hank! I'll make sure to be extra cautious and take care of myself. Also I like the idea of getting some type of medical alert jewelry as I have had an ambulance called for me before when it wasn't needed. I'll definitely look into it.
Ferret, thank you, It's encouraging that they should become more controllable and that would be an interesting story to tell if that's how I met the love of my life. Haha.
I've not had luck with the meds, but that was due to negatives (side-effects) outweighing any benefit/s. Although, over years of adjustments I've come a long way and have more or less flipped my Cataplexy (which was quite severe and frequent) to being more generally sleep attacks (which is preferable) - yet I still do have Cataplexy attacks/episodes here and there, but thankfully not so much of the collapsing and rather the head droop/s...
I'll chime in with perhaps a bit of other elements, which for me have been huge, regarding specifically Cataplexy (referred to as 'it' below).
-Do not 'fight' it, during the attacks, such can escalate it and make it worse, longer as well as more intense.
-If you sense it coming on hard, but it sort of freezes you up rather than instantly collapsing, attempt to get down to the ground ASAP safely, and sprawl out however you can.
-Once you are safely down on the ground, focus only on your body and breathing, calm/relax.
-Wait it out, it may dissipate quicker if you are able to entirely let go of, and/or ignore, the trigger. Such can be difficult if it is continuing (for instance a tv show or public)...
-It is not really predictable but also not entirely unpredictable, in that over time you do figure out what things tend to be triggers yet there is always the chance of unknowns or unexpected triggering/s.
-Learn and know your limits as well as boundaries, then stay within them and/or be cautious accordingly.
-A medical bracelet is good to have, also perhaps having a small card or even narcolepsy/cataplexy description/definition paper along with a card is good too. Such can help minimize any explaining, and/or something to just point at and say 'I have Narcolepsy, no big deal, do not worry.' I've had multiple occurrences were having such has eased others nerves and/or concerns, although I've still had people basically gasp and walk away very quickly with a strange stare as they look back...
The above card and paper that I describe, is something easily made. Mine is small and is laminated. It has a small definition of 'Cataplexy' = minimal loss of muscle tone to complete temporary paralysis, triggered by most commonly positive emotions such as laughter or excitement, but sometimes fear, surprise or anger.
At the point that my Cataplexy was happening A Lot, like 5-20 collapses daily, I'd carry a Narcolepsy brochure around too...
The below video is of me during that point of time, and is something I threw together just to put out there, for awareness:
I agree there's a lack of such. There seems to be, especially over the past year or so more and more videos relating, some helpful and some not.
Skateboarding couldn't have better prepared me, or helped me better in adjusting along with, to Cataplexy.
From just the necessity of constant awareness of surroundings and the intended path, to the constant possibility of hitting a rock or just a foot slipping; along with very much practicing the art of falling, in whichever or whatever direction, at any given moment...
I'll add that as a kid I did all sorts of sport activities, including getting a black belt in TaeKwonDoe at age 13, the run and roll involved was very good for skateboarding.
Playing the piano for years and years when very young through teenage years too.
Everything plays into it though, in weird and odd ways.
Hey all, I'm just wondering if anybody gets shaky before/during their cataplexy attacks? Maybe it's just me because my trigger is anxiety mixed with anger, like when my neighbor and I just had a very heated confrontation about their Fios box beeping for 6 months. (Condo living). I came back inside and was shaking along with my muscle weakness. my cataplexy is mild so I just sit or lay on the floor.
Maybe my shaking is from anxiety.
What you described fits with some of the Cataplexy I experience. My body starts to "flicker" like a fluorescent light bulb- not enough for a collapse, but just enough to make me feel off. This may not even be noticeable to others and seems to "pass" as normal range. I know it is the tip of the iceberg for me and a red flag that it may progress if I do not get away from the "trigger".
I have an annoying neighbor who is retired and cranky. He has chased my children out off our own land because they were too close to his fence (which he actually put on our land). He has been the source of a few awkward conversations- I have to make them brief.
Anxiety can be a trigger for Cataplexy or make it more severe- so it can definitely be a 1-2 punch.