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Big Week: Cataplexy That Lands Me In Er And No Rem On Mslt, What Now?


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#21 Ferret

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Posted 30 August 2013 - 09:34 PM

WarmColors,

Did you experience the all day/multiple day leg muscle weakness that Squirrel has commented on in her other posts?

Has anyone else out there experienced it with Cataplexy? (other than having the flu at the same time)

I agree that Cataplexy should stay on the table 'til completely ruled out.

I'm equally sure that we all wish Squirrel the best in getting to the bottom of her health problem...whatever it is.



#22 squirrel!

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Posted 30 August 2013 - 10:10 PM

I found Warm Colors post helpful. =)

 

She doesn't have to have ALL of the symptoms that I do to have our situations be similar .I appreciate the response, and yours too. It's all pieces of a puzzle that I am trying to figure out. Some pieces fit, others don't match at all. I'm walking a fine line here between figuring out exactly what is happening, and overanalyzing everything. I'm doing my best!  Many of my posts on here are just thinking out loud, if that makes any sense. I hope this is a safe place to do that. So far you guys have offered some great advice.

 

In response to my weak legs- I spoke to my neuro today at our follow up and she suggested that it is likely a sleep deprivation issue for me along with the possible cataplexy ( that stems from an emotional response) Since the weakness is often on days I am especially tired. Just a theory, again, we are still putting the pieces together.

 

Thank you guys again for giving me things to think about!



#23 WarmColors

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Posted 31 August 2013 - 01:30 AM

Ferret,

I haven't read any other posts by squirrel! but according to what you said  no, I had no other symptoms that I ever noticed other than the episode itself.

 

Squirrel!,

I'm glad you found it a little helpful, when I read your post I was very surprised to see someone who has had such a similar experience so it's nice to speak with you. :] 



#24 squirrel!

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Posted 13 January 2014 - 08:14 PM

Update: it's been a few months since my original post. I did end up with a NwC diagnosis and the episode I described was rebound cataplexy. ( which explains why there was no trigger) They happened daily, multiple times a day for weeks on end. They started slowing down after about 10 weeks but I still deal with weak legs and twitching. My sleep dr said it could take a year to get back to baseline.

It's been a crazy long few months but the pieces finally came together!

#25 Hank

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Posted 13 January 2014 - 09:09 PM

Well, welcome to the club.

 

I am so glad for you that you finally got your answers. So, rebound Cataplexy was the smoking gun.

 

Out of curiosity, what were you rebounding from. I know you had mentioned no meds 2 weeks before psg.

 

What medication are you on now and how is it working for you.

 

I hope you are feeling better and relieved to have your mystery solved. Having an atypical presentation of a rare illness certainly put you into a very small group. You must have some very good doctors to have gotten the answer.



#26 Ferret

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Posted 13 January 2014 - 11:11 PM

Squirrel! So glad that you've got your problem sorted out. I sincerely hope that you are on your way to a better life.

 

I need a smiley inserted here that's slapping my forehead and saying "Duh!" at the same time. I never thought to

ask about meds that you had stopped before the onset of your symptoms. I shoulda known better :(.

 

If you could let us know what those meds were, it would be helpful to other readers to be aware of the consequences.  

Rebound cataplexy is nasty and I wouldn't wish it on my worst enemy.



#27 squirrel!

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Posted 15 January 2014 - 05:59 PM

Hi guys!

  It's okay.... its crazy how it all panned out. Just a series of pieces that didn't fit together but I KNEW something was wrong.

My first Dr, the one who did the Psg dismissed me based on my results. he actually said the same thing about the first episode- that it couldn't have been cataplexy without an actual trigger.

 I struggled with that for weeks (the no trigger thing) So did my family. They pushed depression and "all in my head". Saw another neuro, sais it was "pseudo seizures". I knew better... these few weeks were such a low point for me, my body telling me something but what? I would collapse all the time, for no reason. Walking into a room, brushing my teeth, getting the mail. It was awful. I had to keep looking for answers.

I went to my regular dr, had an episode in his office (he went white as a ghost, never seen anything like that!) and he recommended this particular sleep dr in the area.

I went to him and and showed him some videos of my episodes and he diagnosed me on the spot.

 

I was originally on Adderall and wellbutrin and now am on Zoloft, Adderall (as needed) and Xyrem. It's a work in progress but at least the episodes have slowed down.

 

 I have been sleepy for years and years but the leg weakness and twitches started about march of last year. I never figured out why even after EMG, MRI, EEG, etc. as it turns out around that time I caught "fifth disease" from my son. Its a simple kids virus but can be tough on adults. My dr says that is what triggered an immune response in me and unlocked the narcolepsy.

 

 So today I am doing Ok... family still questions diagnosis and that weighs on me. But I am proud of myself that I stuck to it when I knew something was wrong.

 

Thanks for all your support guys, it was so helpful to come here when I was so lost.



#28 Hank

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Posted 15 January 2014 - 07:51 PM

I am still curious about the "rebound" part. Did you have to discontinue Zoloft for the sleep study and that was the cause?



#29 squirrel!

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Posted 15 January 2014 - 08:29 PM

Yes, I discontinued wellbutrin cold turkey for the study.

I started zoloft after.

#30 squirrel!

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Posted 15 January 2014 - 08:32 PM

http://m.youtube.com...h?v=W2nWakJa5iM

#31 Ferret

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Posted 16 January 2014 - 12:28 AM

Thanks for posting the info Squirrel. Dangerous stuff those "antidepressants"...sent me searching for more info.

I came across this link...

http://survivinganti...-xl-buproprion/

The actual site is...

http://survivingantidepressants.org/

The category "Tapering" has detail on just about every antidepressant known.

Please, if anyone is taking any of these medications, read carefully what you have to do to IF you have to get off them.

These drugs can hide symptoms like cataplexy. Since many Narcoleptics are misdiagnosed for years, they are often on these various antidepressants. Be aware, be wary and be safe...and never do Cold Turkey for any medication.