Sign in to follow this  
Followers 0

6 posts in this topic

Hello,

Some background: I'm a 40 year old man living in the UK. I am currently supporting my closest friends in what can only be described as a horrible experience for them, and emotions are very high. It's all very upsetting, which is what leads me to this post in an way. I am not seeking advice on that directly, though, to be clear.

For as long as I remember, when I cry I...well, my body kinda gives up (and a bit when I laugh, too) for a few seconds, quite slowly... It starts with my head/neck, then my face/arms and then, at it's worse (a full on sob) my legs join in. I'm not asleep, nor do 'I' change inside at all, I just loose control. Most of the time it was no problem really, as I wasn't much of a sobber, y'know? But I'm *really noticing it at the moment with what's going on...The extent of it, from top of my body to bottom, is based upon how upset I am. Crying at a sad/soppy film, but not being really hurt or truly upset, only makes my arms a bit limp and heavy, and mebbe some in my neck, and I'm not bothered by that too much. But right now, I have to cry this stuff out when I leave (I have my own family to look after, I need to release it)...it's, well, I flop (slowly, though, I'm not passing out as such, it's just my body). Also, it's happening a a bit...randomly, and right now when I laugh it's more intense. I need to sit down or I...not wobble...sag. I just want to make clear it's not...not emotion, directly, putting me on the floor. It feels physical. I can't choose to ignore it. As it's very noticeable at the moment. People see it. I don't like that.

My ex (of 15 years) and my girlfriend (of 5) sat me down the other day. The Ex always thought I had narcolepsy, but I disagreed cos I'm an insomniac and thought you'd sleep all the time with that They said as it's worse than usual they'd had a chat and a read (I'll not comment on them gossiping about me, grrr) online. They made me read the wiki pages on cataplexy, and then narcolepsy....and it's me!!!

At aged 17 I started to get what I now know to be sleep paralysis, and when I was younger it would happen 2-3 times a week (I used to party a lot, I thought it was down to that). Now it happens about that many times a month, unless I'm really tired then it's kinda guaranteed. Let's just say I'm not a fan of it, but it's just normal to me - although no amount of understanding/knowledge can get rid the fear and/or 'presence of other'(it sounds crazy) when I'm actually in it.

I hadn't connected them at all. I'm quite surprised at my own ignorance...I've never mentioned it to my doctor. I'm not sure I want to.

 

Is there anything I can do to to make it...be less in the way when times are hard? I have things to do! What do I need to do to stop this meat-bag I live in going floppy?

Any advice would be appreciated.

:)

 

 

 

 

Share this post


Link to post
Share on other sites

@amelia

First, I am so very sorry for what you (and many others) are experiencing right now. I can tell you that, although I had dippy knees for about three years before diagnosis, it was grief that made it glaringly obvious that I had cataplexy. Didn't know what it was but it sent me scurrying to the Doctor.

Please go to a Doctor (preferably a Neurologist who specializes in sleep medicine) and get started on a diagnosis. Without a diagnosis you will have no access to the prescribed medications that may help you. Because, you DO have cataplexy and it's not going to go away. Take witnesses with you or written and signed affidavits describing what happens and under what circumstances.

Nicotine (vaped NOT smoked) will lessen the severity of the cataplexy and also act as a stimulant but other health issues need to be taken into consideration if you decide to go that route. I'm still vaping. I also take a 1/2 a grain of rice worth of cannabis oil sublingually just before bed and have pretty much eliminated my cataplexy. I'm telling you these things because of the hell that other NHS patients have experienced in getting diagnosed and getting access to meds. Just do what ya gotta do to cope.

Sending gentle cyber hugs to you and your friends.  

Share this post


Link to post
Share on other sites

Funny you should mention nicotine and cannabis, they're the only two drugs I use these days - although, admittedly, not in the harm-reduction way you rightly recommend.... I'd noticed it happens if don't smoke a joint in the evening (it also helps me sleep much better than zopiclone), and when I try and stop smoking my roll-ups it's worse too. Annoyingly so. That's one of the reasons I still smoke either.

I don't want to mention it to my doctors because I have bi-polar...I suppose I just don't want another diagnosis.  I've had 3 full blown manias and numerous hypos/depressions. If I tell them about what happens when I fall asleep they'll write at off as me getting ill again, I fear. I am better able to predict my illness these days, early warning signs etc, take medication most of the time, and other things. I have got to a point where life is nice and stable. Truth be told I avoid them, as for quite a few years they were in my life a lot.

But I shall mull over yours and their advice on that doc thing. :)

It doesn't seem to be getting better with age, no. Not the cataplexy, mebbe a little worse.. As I said, the sleep paralysis has - cos I smoke it away. I never dream when I smoke weed, and I like it like that.

How weird are your experiences at night? Mine are...loopy. I've only told 2 people through my life what really happens.

 

Thanks for the love, Ferret, and it's great to read someone who seems to get it. Have a bit from me :)

xx

 

 

 

 

 

Share this post


Link to post
Share on other sites

Holy *BEEP*, it is funny you should recommend those two....I've been noticing it cos I can't smoke fags and get mildly stoned all the time, eh.

I know that sounds a little degenerate, but it's not as bad as it sounds. I'm functional :D

 

I fear I'm a study on self-medication waiting to happen :D

Share this post


Link to post
Share on other sites

Functional is all any of us wants to be. I was diagnosed in '86 so thirty years ago. At times it's been a rough ride and the "normal" meds don't work for me. I don't have sleep paralysis or the wild dreams any more. I maintain the status quo by eating healthy and taking a three hour nap every afternoon. I smoked cannabis once when I was thirty and only tried it again as oil when I was 62... now 65. I don't get high 'cuz I'm asleep. Please read "Cannabis Oil Cheat Sheet" on this forum for the information that I have put together. I also don't drink alcohol because it will screw up the quality of your sleep. Google for info.

Whatever works for you.

 

Share this post


Link to post
Share on other sites

I gave up all alcohol about a year ago. I can totally agree with you, in fact I'll go further; everything is better.

Will read up, thanks for heads up @Ferret

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
Sign in to follow this  
Followers 0