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Coping With Severe Cataplexy


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#1 CataChris

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Posted 22 November 2013 - 07:21 AM

So a week ago I was diagnosed with Cataplexy, I 've suffered it for 7 years (since I was 13). I have a full episode of complete paralysis of my whole body, the only thing I can move are my eyes. These episodes can last anywhere from 10 minutes to 2 and a half hours and can occur any time. I've recently had health and safety tighten up at my university. I do Geology and so there is a lot of fieldwork involved and I'm currently banned from fieldwork due to several episodes in the field but no serious harm. I have also recently lost my job at the SU bar due to this condition. 

 

So my question is how do people with this condition cope with all the "brick walls" that come with this condition? 

 

Sorry about the wall of text I felt I had to explain my own particular situation.

 

Chris



#2 Ferret

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Posted 22 November 2013 - 08:51 AM

What wall of text? There's not nearly enough information there to help you although I certainly do sympathize.

Who diagnosed you? Triggers? Sleep problems? Tests done to confirm? Meds?

"Anytime"???

From your description, something is definitely wrong...but?

 

edited to add: just read your response to CreativeConfusion. I am interested to know how a diagnosis of Cataplexy can be made without Narcolepsy too.

 

Also found this old post from Wisher...

http://forums.narcol...out-narcolepsy/

and I really hope that Wisher will weigh in on this.



#3 IdiopathicHypersomniac

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Posted 22 November 2013 - 08:08 PM

Xyrem can eliminate cataplexy, or make it so mild that it won't be an issue anymore.



#4 CataChris

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Posted 23 November 2013 - 10:49 AM

Hi to reply to Ferret, I was diagnosed at Derby Hospital in the UK, I have no sleep problems and the meds I'm on atm is Venlafaxine. As to triggers I'm still trying to work it out.

By anytime I literally mean I could collapse at any moment with or without warning.

 

The diagnosis of Cataplexy without Narcolepsy is unusual in that they are associated with each other but are separate conditions I'm one of the very rare but not unheard of people who just has Cataplexy, no Narcolepsy. (Based on chats with my doctors and my own research)

 

Chris



#5 Ferret

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Posted 23 November 2013 - 11:59 AM

You are indeed very rare. I have never read of such a thing and would appreciate a link.

If you were on Venlafaxine at the time of your sleep study, it would have suppressed REM.

BTW, if you ever have to come off that med, please withdraw VERY slowly or you will experience rebound cataplexy. You've got a huge problem now...rebound cataplexy is even worse.

You should also be aware that nicotine is very helpful in controlling the severity of cataplexy. I am NOT recommending that you start but I want you to be aware of the option. We all make choices to live with our disability. An e-cig is quite possibly less damaging than some of the meds that are available to us. Each to his/her own.

Take care.



#6 Ferret

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Posted 23 November 2013 - 11:46 PM

Found some more information that may be of interest to you...

http://forums.narcol...out-narcolepsy/

 

Poor Gary has been put through the ringer. The whole thread is fascinating...his post from January 30th, 2010 is a real eye opener...

"Hypokalemic Periodic Paralysis"

and his links (which are really good ones)...

http://hkpp.org/patients/hypokpp-FAQ

http://simulconsult....ces/hypopp.html

 

Hank may remember a similar case which he thought might have the same diagnosis  just this past summer. I don't recall that poster ever coming back to give us an update. It would be nice to know if you get your problem resolved so please don't leave us in suspense.

Take care.



#7 CataChris

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Posted 24 November 2013 - 07:28 AM

Hi, in reply to the last posts, I won't leave you wondering as this is the only place I've found for support with people with similar problems. 

To answer Ferret I didn't have a sleep study as I presented no symptoms of Narcolepsy, at the minute I'm just on the venlafaxine for a while to see if that does help my situation or not, it's all very early days for my testing.



#8 Hank

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Posted 24 November 2013 - 11:31 AM

Hi, in reply to the last posts, I won't leave you wondering as this is the only place I've found for support with people with similar problems. 

To answer Ferret I didn't have a sleep study as I presented no symptoms of Narcolepsy, at the minute I'm just on the venlafaxine for a while to see if that does help my situation or not, it's all very early days for my testing.

Just to clarify a few things:

 

"I presented no symptoms of Narcolepsy"- Cataplexy is the signature unique symptom of Narcolepsy. Cataplexy only occurs in the presence of Narcolepsy, with the very rare exception of a brain lesion.

 

"I didn't have a sleep study"- yet you report a diagnosis of Cataplexy which is a "symptom" exclusively linked to Narcolepsy.

 

So, in essence, Cataplexy is a unique symptom of Narcolepsy. So, you have been diagnosed with a "symptom" while ignoring the "illness" that causes the "symptom". That is like being diagnosed with a "big belly" when you are actually pregnant. The cause of the symptom is very important.

 

Have you taken the Epworth Sleepiness Scale?

 

You say that you have no symptoms of Narcolepsy. So did I. For example, I never just fell asleep, I just had concentration problems and had trouble sitting still for too long. I had become so accustomed to fighting sleep that I did not recognize that it was sleepiness related.

 

I often appeared more hyperactive than Narcoleptic because I never stayed still. I kept myself in almost constantly and actively engaged. Family, work, chores, running, biking, swimming- always on the go. When I stopped, I crashed- but I thought I was tired because I was so active. So, I was oblivious to the reason - causes and effects all became muddled.

 

It sounds a bit dodgy. What are the qualifications of your physician? It seems like the diagnostic process of a doctor who does not know what he or she is looking at.



#9 sk8aplexy

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Posted 24 November 2013 - 03:28 PM

CataChris - I can relate with you, to a large extent, I think.

Very much, at first upon discovery/realization (when 28-30) of having the disease, I did not think there was much or really any possibilty of what I had, being Narcolepsy with Cataplexy.

I'd been collapsing for over 8 years, as a kid I couldn't lift my arms while being tickled, because they were limp and muscle-less.

 

I had 5 sleep studies before an MSLT (which are really not a good, no where near 100% accuracty, test -according to David B. Rye, MD, PhD of Emory edu-) because a unusual 'sleep apnea' was discovered.

'Idiopathic Central Sleep Apnea' is a rare form of sleep apnea were the brain and respiratory muscles communication is messy.  Mine thankfully, is only minimal-moderate, but I had many months of real troubles/ordeals and intense (500%+) escalation of the severe (collapsing) Cataplexy.

Prior to discovering the word 'Cataplexy' after doing a search of "laughter AND paralysis" on the internet, after collapsing with a friend who'd had a potty accident while crossing a street in Mexico (we were attending a other friends wedding, and he'd had the Poo's for a couple days), it was funny but collapsing on the corner was not... 

 

Anyways, I'd never considered myself to be tired, yet it had disguised itself to me that is, all my friends seemed to already know or note that I was often ('normally' -I hate the word 'normal'-) tired.

I did get the dx of 'Probable N w/ C' after an MSLT was done at Mayo Clinic, the 'probable' was due to my 'mean sleep latency' being 9.5 minutes which is above the 8 minute rule of diagnosing N; and Mayo is thorough.

Also, they offered me a spinal tap to check my Hypocretin level/s, to give me a more definitive dx; but since I'd been there 3 weeks already, had a long bus ride coming up to return home, wasn't expecting any treatment or anything positive to come from having it done, I passed it up.  I'd not complained one bit about tiredness, only about Cataplexy; they thought it was unusual.

 

As time has gone on, the more I read of other experiences as well as the more that I learn about the disease (including what seems to be more and more research being done, new discoveries like the 'excess antihistamines' for example), and the more I reflect upon my past; it becomes very clear and obvious that this is the disease that I have.

Today, I know I'm often tired, as I've managed to through 'lifestyle adjustments' come a long long way from where I was.  I was very fatigued prior, I disovered many allergies and I worked on minimizing them.  One major thing I did was changed my diet, eliminating Gluten and Dairy has been Hugely Beneficial.  Now, I'm not fatigued or with Migraines and headaches, like prior; yet I have sleep attacks more distinctly now...

 

You'll learn a lot as you read through research and others experiences.  Reflecting is a good thing to do, too.  You gotta keep your head up and do your own research as unfortunately, not all doctors know enough or accurately.



#10 Hank

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Posted 24 November 2013 - 04:42 PM

Great post Sk8.

I just read this while coming out of a "sleep attack". I never knew what they were since I rarely actually fall asleep or allow myself to. I experience it as a wave- I feel nauseous and irritable- almost like a migraine without the headache is the best way I can describe it. My experience of the symptom is not the text book description- I just feel miserable. There are many "shades of gray" when it comes to symptoms- and doctors often look for "black and white".

So give some thought to what you experience.

Do you seem moody- do you often not feel well? Maybe that is a place to start looking.

#11 Kimpossible

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Posted 27 November 2013 - 02:52 PM

Cataplexy without Narcolepsy is possible.  (Anything's possible...)

I worked with a woman back in 2001-2003 who had problems of falling.  She had MRI's, EEG's, all kinds of tests to try to explain what could be wrong with her.  It took a long time, but she was finally diagnosed with Cataplexy.  She does not have Narcolepsy.

 

One thing I have difficulty with concerning doctors is that there are some that say "that's not possible".  Occam's Razor is a good idea, but sometimes, what doesn't seem possible or likely is possible.  If you are closed to that possibility, you will miss diagnoses.



#12 Ferret

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Posted 28 November 2013 - 10:18 AM

Of course, things are possible but there are also things that are unlikely.

I'm asking again for a link which puts it into the realm of possible.

A headache is just a headache until it's a symptom of something else more insidious.

IMHO, this young person has received a slap dab diagnosis...the only thing that matches cataplexy is the "fall down" part. I hope he seeks better medical care in the future...his life may depend on it.



#13 Kikisu

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Posted 28 November 2013 - 05:44 PM

I don't have severe cataplexy, but I do have it often. It drives me crazy; random numbness here, loss of feeling there. Any time I'm feeling almost any emotion (laughing/ being happy, sadness, anxiety) can bring it on. My grip gets loose, my jaw feels like it's gonna fall off and makes it hard to talk, my thighs lose feeling and it gets hard to walk. I get an attack at least once a day, some times more. Some times even reading aloud to my brother or mom can make my words get slurred. Anyone that knows a good way to help deal would be lovely. My doctor didn't focus much on the cataplexy since it was mild compared to my exhaustion (I've slept 14-16 hours a day if left alone since I was 12 depsite being on heavy stimulants for what was thought to be ADHD). The best I can do is concentrate really hard on moving or just let it pass.

#14 sk8aplexy

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Posted 28 November 2013 - 06:10 PM

"The best I can do is concentrate really hard on moving or just let it pass."

I'd suggest trying to always both, briefly/momentarily let go of (try an forget) whatever the trigger was (be it humor, happiness, tension, etc..) and strictly just concentrate on relaxing your body. 

If you find yourself frozen or continueing, over and over, to be experiencing Cataplexy, try concentrating on breathing and focusing only on your center; perhaps sprawl out on the ground briefly and let your limbs relax entirely, just for a few seconds.

Also, I suggest that you 'not fight or resist' it, as at least in my case doing such makes the Cataplexy much more intense and prolongs it...

Again, do not concentrate on it.

Learning to, adjusting to and along with it, is really all that you can do for now.

You've been doing so already, I am sure.  Stay strong, continuing on. 



#15 Kikisu

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Posted 29 November 2013 - 08:43 AM

I actually tried that this morning; I was watching a funny youtube video, laughed WAY too hard, and found I couldn't pick anything up. So I just laid down on the ground and relaxed and it passed MUCH sooner than normal. Thank you so much!



#16 justdroppingby

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Posted 18 December 2013 - 11:35 AM

Hi all,

This is my first time putting a post on this site. I was diagnosed with Narcolepsy 33 years ago. All that time I continued driving.  (Ten of those years were on the SanDiego Freeway ! I had frequently had to fight to stay awake.  I know my guardian angel must have worked overtime because I never had an accident.)

Finally, however, after driving for 46 years, my narcolepsy has progressed to the point that I no longer can drive.  Fortunately I am of retirement age, so I just retired.( My job was doing Home Care which involves constant driving.)

     I am amazed at how rare N is.  In all those years I have only met, personally, one person with it. My cataplexy is even rarer.

     I thought I would share an experience I had with you all.

A couple of years ago, my doctor noticed that it had been about 20 years ago when I had had my last sleep test.  So he sent me for  day and night tests.  In order to get accurate results he said I should not have any sleep-related meds in my system a MONTH before my tests.  I was really leery of that because I know how much the meds help my condition.

3 days after I stopped taking my venlafaxine I could not stand up for any more than a few minutes..My cataplectic attacks involve my whole body; I collapse, I cannot even speak. My husband had to rent a wheelchair so I could get from one room to the other.

I also had to have a neck brace because I could not always  hold my head up and thus the weight of my head hurt my neck.

When I would try to eat,  I would lose my grip and spill food on myself.

When I would go to the bathroom, I would collapse getting out of the wheel chair.  My husband got a foam mattress to put on the tile bathroom floor so I would not bang my head on the tiles. When we went to town,  I collapsed trying to get out of the car.

My son called me twice while my husband was at work and, although I was able initially to pick up the phone,  I could not form words or keep my grasp of the receiver.  He called the ambulance and then I spent several days in the hospital.

I was a real oddity....most hospital staff had never seen anything like it .  And while they  were used to supporting patients by their arms, or torso, they were not used to someone being, from head to toe, like a wet noodle.  In fact, that is how I would try to describe the effect that cataplexy had on me,  "  Just think of me as spaghetti" I would say.

As it happened, the sleep therapist was on holiday and the local staff were stymied as to what to do with me.

They decided that I would just have to go back on my regular medications.So at about 11AM I had my first dose of venlafaxine, and by that afternoon, I was  getting back some of my strength and could start talking and moving around a bit.  Within a day or two I was completely back to normal. When my therapist got back from his vacation he said I didn't need one of the tests because it was quite obvious I had narcolepsy ! 



#17 Ferret

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Posted 18 December 2013 - 02:26 PM

And that is the most beautiful description of Rebound Cataplexy that I have ever read.

You wanna shoot your Therapist or would you like me to do it for you? First of all you don't EVER come off an antidepressant cold turkey...NOT EVER! and especially not if you're cataplectic. Your Therapist should have known what would happen but, at the very least, he/she should have been within calling distance to put an end to it sooner for you. What a *BEEP*ing asshole.

Glad you survived it and kudos for writing and describing it so well.



#18 Zolmix

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Posted 05 January 2014 - 06:41 PM

In Feb of 2013 my 34 year old husband was admitted to the hospital for what they thought was a TIA. After that incident he has been having what I would term as progessive cataplexy....started out with what he described as a foggy/dizzy episode then progressed to neck weakness, then progressed tofoggyness with upper torso weakness and now is progressed to muscle weakness and buckleing of the knees but he dosnt fall over ....we had a sleep study done at the local hospital and they failed to do the testing correct. That lead us to have a four day eplisy study done at one if the larger hospitals in the area. They referred us to their sleep testing center for narcolspy at their hospital as they believe it is cataplexy. primary doctor if course dosnt think he had a Tia anymore becuase he has them everyday. We have of course been aborbing any and all info we can find on cataplexy. From what I have read there is a huge debate out their on cataplexy without narcolpsy. We want to believe this is the answer as most of the symptoms for cataplexy fit but narcolpsy does not fit. My husband never takes naps, never falls asleep doing anything, is active from 7 am to 11 pm and never stops moving. We have been trying to figure out his triggers ....and the only one we have been able to someone pin down is his activity level now a days. Sometimes if he rides his bike he may have three or four bad days where he can't leave the house other times he can be active three or four days stright and not have any problems. My husband hasn't been able to return to.work due to the varying degree of his episodes and the fact that he has to drive. Now that it is after the holidays we r hoping that we will finally get scheduled soon.

#19 Hank

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Posted 05 January 2014 - 07:41 PM

What you are describing does not seem to fit with Cataplexy. For example, I sometimes experience Cataplexy after exercise- my legs get wobbly and I may sit down until it passes. Once it passes, that's it.

 

Occasionally, I will collapse completely paralyzed for up to 2 minutes after a sudden, strong emotion- like fear for a child's safety.

 

So, the thing with Cataplexy is that it is sudden, brief and transient- usually following a strong, sudden emotion- like laughter, startle, joy, fear. Catching a thrown object is also a trigger not related to emotion.

 

Having 3-4 bad days when he cannot leave the house just does not sound consistent with Cataplexy.

 

Maybe I have misread or there is more you have not mentioned.

 

Cataplexy can rarely occur without Narcolepsy. But, generally, Cataplexy is considered to be a symptom exclusive to Narcolepsy. And with Narcolepsy, there are unmistakable problems with sleep disturbances at night and sleepiness during the day.

 

http://www.periodicp...sh/view.asp?x=1

 

Cataplexy is not the only condition to cause paralysis, like the above link.

 

It is really hard not knowing the cause- and concerning when the doctor's don't have the immediate answers.

 

Just as you are doing- observe and learn. See what fits. See what doesn't. Be careful about accepting medications and treatment until you have a confident diagnosis that makes sense. Second opinions can be helpful - especially if a diagnosis seems more like a best guess.

 

I hope you find your answers. Ask as many questions as you need until you solve the puzzle. Consider starting a video diary to document these symptoms and how the appear, so that you can share the images with the doctors.



#20 Zolmix

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Posted 05 January 2014 - 08:50 PM

Video diary is actually what started us on the road at the eplisy unit. After seeing the video the doctor throught for sure it was eplisy but after him being monitored in the unit for 4 days and having only 2 small episodes which did not show up on a eeg....the doctor said it wasn't epslisy and may be cataplexy.
As I stated before it seems kinda linked to physical exerise.....before he went into the unit we made sure he was physcially active but to no luck becuase once in the unit he had to stay still because of the eeg. Once he got out of the unit it.was Halloween night. Our seven year old daughter was so facitanred with the big fancy hospital that she wanted.to climb the glass staircase. Husband against his better judgement didn't want to disaappont her so he climbed it with her. Then didn't want her to miss her Halloween so he walked about three blocks with her in the rain for Halloween that night. The next three days were horriable....
What started all of this wad a back injury / physvial therapy/traction on his back....he has had mri of his cervical and lumbar, mri if brain, mra of corretwd artiery and brain....if anyone watch ncis then just like gibbs says there is no such thing as considence but we can't seem to get a doctor to buy into the possibility that these r seisures linked to the back injury.
When he reads what ctaplexy is it mostly fits he can hear and kinda see what is going on around him during an episode, lasts any where from 10 seconds to 5 min though they can be back to back and feel like they never end. They do not ever happen or will quit hppenkng when he lays down.
Some episodes he can "fight" through and others he is just to tired from them happening all day to keep fighting them.