Doctors never take me seriously! I've been suffering unnecessarily

[Neenee Jellybeanie]

My entire life, i've had sleeping problems. It's been dismissed as bad sleep hygiene, being out of rhythmn etc. I saw a thing about sleep disorders on Oprah of all places lol, and stumbled across something interesting: sleep paralysis.

I have this ALL THE TIME. Not every single night but very often. That is not normal! I didn't even know this wasn't normal until today. So judging by how often I have this, plus other things in my sleep, it's entirely possible that I have narcolepsy (which doesn't necessarily mean you fall asleep while doing normal things like is dramatically portrayed in movies and such). I am so angry!! There are over 80 sleep disorders and since I'm still awake after midnight after 19 years of problems, I think it's pretty safe to assume I have one of them, I'm not just lazy and enjoy sleeping in!



Why did no one listen to me?!

I've changed Doctors, I have an appointment on Thursday, and I am going to keep changing Drs until SOMEONE refers me to a sleep specialist, which should've happened YEARS ago.

!!!

[paradise lost]

That's crud hun! Hopefully your new doc will get you some decent help - can you not self-refer? Maybe find yourself a sleep specialist and email/write to them and beg?

Here's something freaky. I never in my life suffered from sleep paralysis, then XP told me about it (he gets it occasionally) and BAM i began getting it all the time. I got it in the early mornings, when i'm falling asleep again after peeing or saying bye bye to XP (he worked early shifts). I had to TRAIN my brain not to do it!

I never saw a specialist. I can feel when it's going to happen, nowadays it's usually when i'm very tired but trying not to fall asleep for some reason, usually because DD is still awake, or because i know i have to get up soon but i'm exhausted. Then i fall into this state where my body has indeed gone back to sleep but the bit of my brain that processes reality thinks it's still awake. Thus i am awake, paralysed, and helpless and i frequently dream someone is in the room or hurting me and i can't move. My worst was when DD was about 4 months old. I woke to feed her, put her in bed next to me and tried to stay awake while she fed for a bit because she'd accidentally missed the nipple latched onto flesh rather than boob the night before and had given me a big lovebite and a sore milk duct underneath on my boob. I fought and fought to stay awake and then i realised DD was in the cot, with a sort of demon-man stood over her, eating her guts from her belly. It kept looking over its shoulder at me to see if i was moving, with intestine and blood hanging from its mouth, and i could hear it and DD making wet sucking noises. It was horrific. I woke up a few moments later to find DD in bed, making the noises, latched happily onto the boob, but it was a LONG time before i fell asleep again.

I can feel SP coming on when i am falling asleep. You know often when you fall asleep you kind of twitch a bit? I know if i'm fighting sleep but i don't twitch then i'm not "falling" properly and i'll get caught in the SP phase. So i try to wake up, think of something good, and relax properly into sleep again, or else i force myself to get up and have a coffee or whatever.

I hope you find a specialist who can help. With me i felt that if hearing about it could make it happen then i could stop it happening, iykwim.

Bx

[loulabelle]

How horrible for you! Glad that you are finally going to stand up to the Doctors and get some help.Goo Luck.

[Neenee Jellybeanie]

OMG hoobley that sounds just AWFUL. You poor thing!! I would've been a mess after that experience.

I'll post about how my Drs appointment goes <3

[Neenee Jellybeanie]

The Dr I saw today was not only a complete idiot, but a b*tch as well. When I told her about my syptoms and the sleep paralysis, she goes "What's that?" So I knew it wasn't going to go well. In between saying "I've never met you before, I don't know you from a bar of soap" and "I have no idea how to help you or who to refer you to" she told me that I'm too fat. THANKS. I didn't know I was overweight, I don't look at myself in the mirror every day. All those years of study have certainly paid off, Doc! Well spotted! The fact that I'm losing weight and don't need her help (she didn't offer it anyway, she just called me fat) didn't actually matter, that's all she focused on.

Anyway, I called the Sleep Clinic MYSELF since the Dr was too much of a dumb cow to bother, and the sleep Dr I spoke to said it definately sounds like narcolepsy, and that I really should come and see her (but it costs 100s of dollars without a referral). So I'm going to go to the NICEST Dr I know (He's always really busy) and explain to him that I've spoken to the Clinic, they want to see me, and I need the damn referral already.

GRRR.

[The[cookie]Doctor]

Far out, soory you had such a hard time of it. I dont know what SP is but DF has sleep apnoea.
hope u can get the referral with not too much trouble

[Lulu]

Oh Im sorry I didn't see this earlier .

I had the same thing a while back for a few years. In fact I had to tell people sleeping in my bed with me (friends! not just boys!) that if they heard me breathing heavily or stop/start all of a sudden to SHAKE me, sit me up and not let me go back to sleep until they had me talking. I didn't have such bad hallucinations but it felt like something sucking my breath, sitting on my chest or just choking, actually alot of the time it was a shadow literally sucking my breath from my mouth (years before Harry Potter!) And my body could not move.
I once cut off all my long hair after a particularly bad experience waking up pulling it out of my throat. It had gone all the way down and to this day Im not sure if it was a dream or real.

I once mentioned this to a GF and she had it soooooooo bad. She ended up developing the same way to 'snap' herself out of it that I did. Whilst I found if I could lift my arm up (it took all the mental strength I had) and bang in down on the bed, or hit the person lying next to me (at this stage it was my husband ), I could break the paralysis. My GF discovered if she could manage to move her head to the left, she could break hers. She saw the aliens as well as monster lizards running across her roof. I had the 'dark man' sitting on my chest. It was truly awful. I also has to scream STOP over and over in my head and force the rest of my body to wake up. One horrible night I kept dreaming over and over that I HAD woken up, talked myself down and then went straight back into the same nightmare - just like Nightmare on Elm St. My GF's sleep dr actually wrote up her experience and recommended it to his other patients. Try to see if you can find a 'snap' too. It might take a bit of practice though.

Im not sure when it totally finished, but it went on for years. I think the episodes got fewer and far between and I learnt to become vigilant about my dreams (if that makes any sense).

I hope you get the answers you need, I hope its over soon

[~Trish~]

Oh my goodness, I had no idea it happened to other people too! I have had what Hoobley and Lulu described happen to me numerous times. I have "woken" to feel an unseen force holding me down and I am paralysed and can't call out, a week or so ago I thought DH was holding the doona over my head and I couldn't move to push him off. I just scream and scream in my head until I snap out of it. I didn't realise it has a name!

I hope you get to see the sleep specialist, I'm really interested to know what they do for you. Sorry you have been going through it for so long and have been ignored .

[Lenny]

I can't believe that the doc didn't refer you - that's just cr@p. Do they think you would go to all the bother of getting an appt and going in and waiting to see them just for giggles. Especially when wiating to see a dr means exposing yourself to a whole bunch of sick people.
I really hope that the clinic can help you, it sounds awful.

[Neenee Jellybeanie]

I had no idea this was so common!! WOW!! Maybe ya'll have narcolepsy too

This Dr was a real piece of work, I told her that I co-sleep with DD and she goes "Well that's a problem in itself" wtf? I'm going to make a complaint against her, I rekon.

I used to have ways to snap myself out of it, Lulu, but they all stop working after a while. Holding my breath used to work but it doesn't seem to much these days. When I try to move or do anything, I tend to *think* i've woken up, then try to get up and realize i'm still alseep. It keeps happening over and over again, like a dream in a dream in dream. Or I'd think I was making slight movements but I actually wasn't, I just thought I was. I used to find tensing my body my body as much as I could would help too, but not anymore.

Since I can't usually wake myself up, I tend to try to stay calm, remind myself that it's just a dream, and think positive thoughts. Like I imagine a bright light around me protecting me, or if there are nasty things attacking me, I imagine myself fighting back. I used to always be terrified that I'd never wake up.
I had a particularly bad one last night, I dreamt that I was being slapped in the face repeatedly. I've had that one before, and I knew what it was, so it wasn't SO bad.

edit: Oh and when I think it's going to happen (like I feel like i'm falling asleep too quickly) I deliberately move a bit to wake myself up. Sometimes I don't realize it until it's too late though.