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#1 CCPOT

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Posted 09 December 2013 - 12:39 PM

Im 23 years old and started feeling syptoms about 2 years ago....it started with sleep paralysis when ever i would fall asleep, then i started feeling the symptoms of cataplexy, i mean i cant even play catch with my friends without collapsing, i have been keeping a sleep journal for the past couple weeks  and i wake up at LEAST 5 times a night. I have sleep paralysis about 4 times a week. ive been setting an alarm everynight for 5 minutes after i try to go to sleep and usually it goes off before my paralysis kicks in so and it has been reducing the attacks some. imalways tired. ive gained almost 60 pounds since ive started feeling these symptoms ( not sure if that has to do with anything) ive talked to my doctor that ive had since i was a baby and he told me he thinks its Narcolepsy but he says he is not a specialist and i need to see a neurologist, i go to school full time in a welding program so i cant afford to go to a specialist and im about to make a move halfway across the country, any tips on how to deal with this naturally???



#2 Kimpossible

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Posted 09 December 2013 - 02:47 PM

No tips on natural remedies, but it might be worth finding a specialist and talking with the office or accounts manager.  It you really don't have money, they may be able to work out a payment plan or discounted rates.  It never hurts to ask.



#3 CCPOT

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Posted 09 December 2013 - 02:50 PM

Your right...and thank you



#4 Kimpossible

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Posted 09 December 2013 - 04:21 PM

Good luck with your move.  Remember you are not alone.



#5 Hank

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Posted 09 December 2013 - 08:19 PM

Im 23 years old and started feeling syptoms about 2 years ago....it started with sleep paralysis when ever i would fall asleep, then i started feeling the symptoms of cataplexy, i mean i cant even play catch with my friends without collapsing, i have been keeping a sleep journal for the past couple weeks  and i wake up at LEAST 5 times a night. I have sleep paralysis about 4 times a week. ive been setting an alarm everynight for 5 minutes after i try to go to sleep and usually it goes off before my paralysis kicks in so and it has been reducing the attacks some. imalways tired. ive gained almost 60 pounds since ive started feeling these symptoms ( not sure if that has to do with anything) ive talked to my doctor that ive had since i was a baby and he told me he thinks its Narcolepsy but he says he is not a specialist and i need to see a neurologist, i go to school full time in a welding program so i cant afford to go to a specialist and im about to make a move halfway across the country, any tips on how to deal with this naturally???

 

"catching a thrown object" is a little known trigger for Cataplexy. It happens to me if a ball bounces toward me, if I catch a Frisbee coming straight at me, if someone tosses me a pen or keys.

 

If this happens for you predictably, have someone take a video of you while this is happening. A Sleep Medicine Specialist (not just a neurologist or pulmonologist) will be able to identify clear cut Cataplexy. You can, potentially, receive a "clinical" diagnosis based on clear cut Cataplexy alone.

 

There is no way to manage Cataplexy naturally. You need to be careful regarding your personal safety with Cataplexy, especially if you will be driving for your move.

 

Certain antidepressants, like Effexor which I am on, are effective at reducing Cataplexy.

 

You could also ask your current doctor to try you on an SSRI or SNRI antidepressant to see if it decreases your symptoms.



#6 CCPOT

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Posted 09 December 2013 - 09:58 PM

@ Hank. I was prescribed Trazadone pretty much just for a trial run i guess but it was extremely unnaffactive. It helped my sleep paralyisis maybe for a week but completey stopped working. But it did nothing for my Cataplexy. I will definatly take your advice on recording a video (my friends would love that haha) The stuff that triggers my attacks are mostly stupid stuff....for example my friend was asleep and i tried hitting him with a pillow to wake him up (mainly just to aggravate him) and right when i was about to do it i collapsed complety and fell in a awkward position to where i twisted my neck. And sometimes its predictable but when my friends try to trigger it to show people who havent seen me have an attack (they think its funny) and im expecting it it doesnt always happen...especially not as severe. Also thank you for your concern and tips.



#7 Ferret

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Posted 09 December 2013 - 11:28 PM

"my friend was asleep...etc." That's cataplexy for sure. Trying to pull a prank on anyone will do it to me every time. Or coming up with a clever one liner...I'll just dissolve into a puddle.

You just can't make it happen though since it's the unexpected aspect of the event that triggers the collapse. So, although a video would be excellent, having your friends as witnesses is just as helpful.

I've never been able to take a med for the cataplexy that worked but others have had great success and that's what I wish for you. Do please be careful if on an anti-depressant for the cataplexy and NEVER stop taking it cold turkey. Rebound cataplexy is gawd awful...been there, done that.

 

BE SAFE!



#8 Hank

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Posted 09 December 2013 - 11:37 PM

@ Hank. I was prescribed Trazadone pretty much just for a trial run i guess but it was extremely unnaffactive. It helped my sleep paralyisis maybe for a week but completey stopped working. But it did nothing for my Cataplexy. I will definatly take your advice on recording a video (my friends would love that haha) The stuff that triggers my attacks are mostly stupid stuff....for example my friend was asleep and i tried hitting him with a pillow to wake him up (mainly just to aggravate him) and right when i was about to do it i collapsed complety and fell in a awkward position to where i twisted my neck. And sometimes its predictable but when my friends try to trigger it to show people who havent seen me have an attack (they think its funny) and im expecting it it doesnt always happen...especially not as severe. Also thank you for your concern and tips

What was the dose of Trazadone you were on. It comes in 50 mg pills. I take either 3 or 4 per night. Sometimes I need more, sometimes less will do just fine.

 

If you were on a conservative starter dose, it could have been too low. Just a thought.



#9 rayraybaybay

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Posted 10 December 2013 - 09:47 AM

Reiterating Kimpossible's post, if you're located in OK like your profile states (sorry if I sound like a creeper), conisder visiting a Mercy-owned sleep center. Here are the locations: http://www.mercy.net...order-treatment   

 

Not sure how close any of them are to you, but the Catholic-owned hospitals and outpatient centers have Charitable Billing Adjustments/Arrangements: http://www.mercy.net...ncecharity-care

 

And after my 1st consultation, my sleep doctor gave me medications samples and prescriptions before my sleep study (except for the Xyrem), due to all of the N symptoms I had. I suspect with Cataplexy, they would do the same for you, and get you on the right path even if you did have to delay the sleep study.



#10 CCPOT

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Posted 10 December 2013 - 12:36 PM

Reiterating Kimpossible's post, if you're located in OK like your profile states (sorry if I sound like a creeper), conisder visiting a Mercy-owned sleep center. Here are the locations: http://www.mercy.net...order-treatment   

 

Not sure how close any of them are to you, but the Catholic-owned hospitals and outpatient centers have Charitable Billing Adjustments/Arrangements: http://www.mercy.net...ncecharity-care

 

And after my 1st consultation, my sleep doctor gave me medications samples and prescriptions before my sleep study (except for the Xyrem), due to all of the N symptoms I had. I suspect with Cataplexy, they would do the same for you, and get you on the right path even if you did have to delay the sleep study.

Thank you. Im actually less than 45 minutes away from one