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Cataplexy Without Narcolepsy


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#1 Gary

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Posted 08 May 2009 - 06:48 PM

I have just been diagnosed with cataplexy, without narcolepsy. My Cataplexy is triggered will eatting. Is there other's like me? I am taking Xyrem and Protriptyin for the second month. I am having some side effects, night sweats and really bad headaches. My doctor will not let me take anything but 2 Tylenlol and 2 Ibuprofen, this knocks the edge off. My cataplexy symptoms have went from 3 a day to only 2 in the last 2 weeks. Has anyone else had these these side effects? The headaches seem to have triggered my last attack. My doctor suggested that I get online to talk to other like myself who are dealing with cataplexy from eatting.

Looking for answers,
Gary sad.gif

#2 dogdreams

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Posted 08 May 2009 - 07:34 PM

QUOTE (Gary @ May 8 2009, 04:48 PM) <{POST_SNAPBACK}>
I have just been diagnosed with cataplexy, without narcolepsy. My Cataplexy is triggered will eatting.

It is possible to have Isolated Cataplexy. I'm curious as to what you meant by "My C is triggered will eatting." Most of my C is triggered by a gluten intolerance and allergies to several fruits. Is that what you meant?

#3 Gary

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Posted 08 May 2009 - 08:32 PM

My Cataplexy seems to be triggered by any type of food. The meal size seems to affect the severity of the attack. Larger meals tend to trigger a full blown attack greater than 15 minutes up to 90 minutes. A smaller meal seems to trigger a lighter attack that doesn't last as long (less than 10 minutes). Since I was diagnosed, I have been keeping a log. I have even had an attack while drinking tea at lunch and not eating (I was afraid to eat in public at this point). These attacks started on a more frequent scale about 8 months ago, I was diagnosed 2 months ago with cataplexy.

Gary

#4 sleepless sleeper

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Posted 09 May 2009 - 12:20 AM

I remember someone saying this, but it was a long time ago on here. It's going to take some serious searching. I believe whoever it was has not posted in a long , long while.

I can't help with this, but I'll try to pay more attn from now on and keep you in mind.

#5 Gary

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Posted 09 May 2009 - 08:12 AM

One thing I left out, my Cataplexy symptoms started in Sept. after supper (Dinner if you are from the North) one evening. I just turned 40 this past August, I have seen on Youtube stories were Cataplexy is more common starting in teens. As I look back, I have notice times were I would feel dizzy or light headed, but I always thought it was due to low sugar. As matter of fact, one doctor told me about 15 years ago that I may be boarder line diabetic, but when he would check my sugar it would be OK. When this started in September, I could remember back last spring having dizzy spells at a baseball game. At the hospital (Neurologist and family doc), my first diagnosis was Hypoglycemia (low sugar) even though my sugar was fine. The reason was I had a severe attack after a Glucose Test while in the hospital, though the sugar test was normal. They sent me to an Endocrinologist who after 6 weeks of checking my sugar and changing my diet, he said my sugar was fine and the diagnosis was wrong. My symptoms got worst while on the diet because it required me to eat 6 small meals a day, so I felt like I was having a cataplexy attack all day. My vision stay blurred and I saw double a lot, my co-workers said at times I looked spaced out. I went to many specialist and was even sent to the Mayo Clinic 2 times. The Doctor at Mayo ask me to eat and come to his office, I did and he observed me having an attack for about 50 minutes. They decided that I should see a Pulmonary Specialist at home, they felt that there was some reason I was not getting enough oxygen to my brain. So a local pulmonary Specialist ordered some breathing tests, one which was at the hospital. I am not sure why, but I had an attack at the end of that test in the hospital. The nurses called the Pulmonary Doctor and he diagnosis me with Cataplexy after doing some more studies. The Pulmonary and Neurologist are treating me now. This seems to be a relatively unknown condition around here. I was shocked that the Mayo didn't diagnose me, my Doctors say that this is very rare, especially the eating triggering cataplexy. I am learning as much as I can about this and at the same time trying to educate those around me. Hopefully they will make good decisions if and when they observe an attack. It is no fun being carried out of restaurant by EMS to the hospital with people crying and scared because they have never seen such a thing.
Gary

#6 jenji

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Posted 09 May 2009 - 11:47 AM

Gary:

I have many questions:

And so, if EMTs are carrying you out then you are losing consciousness? I mean, if you are losing consciousness then that's very much like narcolepsy b/c that's REM sleep invasion when you're not asking for it.

Are you able to hear what's going on around you when you have these attacks? that is also indicative of N.

Food intake: Dogs with N will often have cataplexy attacks with the presence of food as well, but these are dogs who have N with cataplexy. I mean, doctors get things wrong, especially with N. I was dx'd 15 years ago with vasodepressor syncope/orthostatic intolerance (blood pressure disorder) among a myriad of other things b/c I would get woozy, dizzy, clumsy, heavy and many times drop and pass out (many other symptoms too), but once I would drop, I could hear what was going on around me during these episodes, however several doctors failed to pick up on that key point. It turns out I don't have a blood pressure disorder, in fact my blood pressure is perfectly fine; I have narcolepsy.

Did you have a sleep study? I assume you have had a sleep study b/c they ruled out N? And if you haven't had a sleep study and they ruled out N, well then I'll be forced to smack my forehead in outrage at this medical negligence; however, seeing as you went to Mayo, I'm sure they gave you a sleep study. And so, if you have had one, perhaps you should have another one done b/c often N will show up on one test but not another depending on circumstances (prescription drugs, environment et al.).

And if that doesn't sound right, let me ask you this: has anyone ever thought of taking an EEG/EKG/EMG--aka sleep study--on you whilst eating as opposed to when you're sleeping? If N is not showing up on your overnight study, well then perhaps your brain goes to sleep only when you eat, which is an entirely different trigger than most, but it doesn't surprise me in the least. Nothing about N surprises me anymore. If it were to show up on the EEG/EKG/EMG sleep study test that your brain goes into REM sleep upon eating, well that would be very interesting indeed.

Do you have any other symptoms like sleep paralysis, hypnogogic hallucinations, excessive daytime sleepiness? You said your coworkers say you look "spaced out": this is very much like the narcoleptic microsleep episode which may or may not entail automatic behaviors (ie you're spaced out yes, but still having a conversation or doing your work).

Have you been thoroughly tested for food allergies? All food allergies? What about epilepsy? Have you been checked for that?
Have any of these doctors investigated autoimmune disorders for you? It is now known that N is an autoimmune disorder and so if you have cataplexy, perhaps it is being triggered by some autoimmune issue, whether N or any other autoimmune disorder.

N is related to hypocretin, which is related to orexin as orexin is a hypocretin and the orexin/hypocretin system is involved in the stimulation of food intake and sleep, based on the finding that central administration of orexin A/hypocretin-1 increases food intake. In addition, it stimulates wakefulness and energy expenditure. wiki So why doesn't your food intake stimulate wakefulness? Hypocretin/orexin related to sleep/food; food/sleep. I mean this sounds very much like some sort of neurotransmitter misfire, which is triggered by food, so the question is: what neurotransmitter is being screwed with and what is that misfire indicative of? I'm just spitballling here, thinking outside the proverbial box a little bit to give you some ideas as to what you may or may not want to look into.

And finally, there can be gradual, as well as sudden onset with cataplexy, as well as N w/Cataplexy in adulthood, it doesn't necessarily have to be an ongoing issue since childhood, although for some it is. It's going to take a lot of poking around and hearing others' stories for you to track this down b/c I have not heard of one case of N or N w/Cataplexy that is the same on this network. We're all very different, yet we can relate to one another quite well b/c we all suffer in varying degrees from N or N w/Cataplexy; but textbook wise, there is not an A + B=C template and very often this confounds the medical community, which is why it takes an average of 15 years and dozens of doctors to finally get the correct diagnosis of narcolepsy (or any other enigmatic disorder) in the first place. Sad but true.

Some of your symptoms sound like N, but there are still others that don't sound like N.

Now I have had to do the majority of deliberative investigation myself over the years to finally figure out what may be going on in my system (as dozens of doctors were clueless or negligent) so that I may finally head out to see the correct doctors; and so I would highly recommend that you take some time and go to the autoimmune wiki page (although I cannot stand wiki, it's easiest to get to, speaks in language most can understand and links you to other sites within a site) and run down all of the suspected/accepted autoimmune diseases out there and see if any of those fit your specific symptoms. Here is that link. Cataplexy or what may be perceived as cataplexy can be indicative of many other autoimmune disorders.

I hope this gives you some ideas or perhaps highlights a link between your experience and others' experience that will allow you to better figure out your issue.

best,
jenji

#7 sleepless sleeper

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Posted 09 May 2009 - 01:01 PM

supper (Dinner if you are from the North)

Another Southerner. Am I relieved to meet you.

Jenji is right. There could always be other things going on, but sounds like REM with going unconscious - if that is what happened. But cataplexy can keep you conscious with no ability to communicate. There are a few people on here that have had an ambulance called because of cataplexy episodes. Mr. BB? Care to participate?

Please let us know about the overnight and daytime nap sleep studies. If you had them, were you off ANY and ALL medications? For an appropriate amount of time, which is related to the half-life of each drug?

Some autoimmune disorders can carry similar symptoms with others. Some med affects will mimic autoimmune disease symptoms, also. This is difficult to wade through. You know what? With my MS symptoms and persistent fever, my doctor sent me to an infectious diseases doctor. What is fantastic about these guys is that they are a persistent bunch. Their whole field is research while having "hands on" with patients. They are incredibly intelligent, curious, and if they are anything like the guy that I was sent to, tenacious and will NOT let you stop seeing them until they know what is going on with no doubts. This doctor that I have still wants to see me because I have developed sinusitis that is not going away. He told me he was not letting me out of his care until we KNEW what was going on with me with 100% certainty. And he knows about sleep disorders, not because he dabbled in the art, but because he HAS to know about them for what he does for a living. If you are still uncertain about what exactly is going on with you, seeing one of these guys may be beneficial for you.

I just checked Wikipedia, which had excellent info on cataplexy and listed several other disorders and diseases which could cause cataplexy, but now, someone has changed that info again. Bummer, because I checked most links on what it was before, and all had some validity. It is too easy to change info on wiki, but I suppose that is part of its purpose.


#8 dogdreams

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Posted 09 May 2009 - 04:58 PM

Well, I'm stumped because for me it's specific foods, not just eating everything.

The dogs get C when they eat because dogs just loooove food and they're so happy when they eat. They have C just thinking about food or smelling it. I only knew one pup who wouldn't eat because she had such bad C while eating. I think it's because her litter mates would hog all the food while she was in C and then she didn't get any so she decided it wasn't worth it. Poor thing. She got over it tho. tongue.gif

Anyway, I'd look into food allergies and Celiac disease just to be safe. Could also be some sort of nerve getting triggered by the action of swallowing or something. I've heard of that causing synscope...maybe it can cause C too. Who knows?

#9 jenji

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Posted 09 May 2009 - 06:32 PM

I agree. It sounds very vasovagal.

Quite a pickle indeed.

jenji

#10 malachi777

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Posted 10 May 2009 - 10:18 AM

[quote name='Gary' date='May 9 2009, 12:48 AM' post='9897']
I have just been diagnosed with cataplexy, without narcolepsy. My Cataplexy is triggered will eatting. Is there other's like me? I am taking Xyrem and Protriptyin for the second month. I am having some side effects, night sweats and really bad headaches. My doctor will not let me take anything but 2 Tylenlol and 2 Ibuprofen, this knocks the edge off. My cataplexy symptoms have went from 3 a day to only 2 in the last 2 weeks. Has anyone else had these these side effects? The headaches seem to have triggered my last attack. My doctor suggested that I get online to talk to other like myself who are dealing with cataplexy from eatting.

Looking for answers,
Gary sad.gif
[/quote

Gary, You can also try Prozac or its generic form. It is extremely cheap and it has done wonders for me. I have not had anymore problems with slurred speech, or loss of muscle tone in my jaw. I did not think I had cataplexy too until the dr. said I was having minor symptoms. I take 20mg a day and it has helped drastically. I was having insomnia quite a bit but it seems this week that has diminished too. As dogdreams stated too, you may be one of those patients who have celiac disease. I was afraid to take Xyrem because I also have apnea and I feared I would stop breathing altogether.


#11 Gary

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Posted 10 May 2009 - 08:29 PM

First of all this is great to get so many different perspectives from so many. Let me see if I can answer some of these questions. On the sleep study, I had a sleep study and a day study that followed. This was before I start any meds for cataplexy. I was observed eating during these studies. I have had several EKG's, EMG's and EEG's one of which I had an Cataplexty attack during. Of coarse during this time the neurologist and the family doc thought I might have hypoglaycemia. I have tried prozac at 20 mg along with Xyrem 2.5 2 times a night. But I had some unbearable headaches while taking the Prozac. They now have me on Vivactil 5mg 2 times a day instead of Prozac. The headaches are not as bad, but I still have them. I'm still taking Xyrem at 2.5 2 times a night. Another question was about my attacks. When having my attacks, I get in a comma type state, but I can hear everything going on around me. I cann't gain musle control of my eye lids, neck, hands, and legs. I can't talk, it usually comes out slurred. Usually my attacks start with a tingling sensation around my face, My eye lid close and I try to reopen them by looking up with my eyes without success. I usually become so weak that I cannot stand up. If I am in a place where I cannot lay down, it usually takes several people to lift me. I always know where I am an my surrounding, I can even remember what people say around me. Now on the other hand, I usually can not accurately describe how long the episode has lasted. For example, in the ER they were asking me what kind of allergies I had and my words were slurred as I tried to speak. I have even had people tell me that in the beginning of an attack while I was trying to fight it off, that my speach would start being slurred. One guy described it like someone who had had 1 too many to drink in a bar. I have had several Neurologists look into my Autoimmune system. One of the Neurologist that witnessed my attacks at the Mayo was an Autoimmune specialist. He ran a lot of tests that all came back OK. In the beginning they ruled out Epilepsy. The Neurologist even tried me on seizure meds in the beginning that did not help my episodes. The attacks always seem to be after or during a meal. Home by myself or in public- the surroundings don't seem to matter. One thing is for sure, since I started taking Xyrem and taking an antidepressant I am a lot better. I went from having up to 3 attacks a day at different levels to only having 3 in the last 3 weeks. I feel a lot better most of the time now. One thing I notice is that if I'm not feeling good or just drained for energy, I will have some kind of episode. I was having episodes that lasted 45 minutes to 1 hour 1/2 to these last 3 only lasting about 15 minutes or so. Oh, one other thing, I really get Pale complexion when I'm not feeling well or having an attack. Does anyone else feel drained, almost like your getting over the Flu after having an attack?
Great questions,
This is good to help me understand,
Gary

#12 Lais02

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Posted 10 May 2009 - 11:15 PM

QUOTE (Gary @ May 10 2009, 06:29 PM) <{POST_SNAPBACK}>
I'm still taking Xyrem at 2.5 2 times a night.

One thing is for sure, since I started taking Xyrem and taking an antidepressant I am a lot better. I went from having up to 3 attacks a day at different levels to only having 3 in the last 3 weeks. I feel a lot better most of the time now. One thing I notice is that if I'm not feeling good or just drained for energy, I will have some kind of episode. I was having episodes that lasted 45 minutes to 1 hour 1/2 to these last 3 only lasting about 15 minutes or so. Oh, one other thing, I really get Pale complexion when I'm not feeling well or having an attack. Does anyone else feel drained, almost like your getting over the Flu after having an attack?
Great questions,
This is good to help me understand,
Gary


You could be taking more Xyrem. I couldn't tell any difference at 2.5 twice a night. I take 4.5 twice a night now, and it works very well for me.

As far as feeling drained from C... if I'm not on my Xyrem I always feel drained like that... really bad excessive daytime sleepiness.

I also suggest cutting gluten out and seeing if it helps, and msg too maybe.

I don't really know though! good luck and welcome to the NN forum! smile.gif

#13 dogdreams

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Posted 11 May 2009 - 09:33 AM

Gary, your symptoms sound just like my C when I've been eating gluten. Have you ever kept a food diary or gone on an elimination diet to rule out food allergies and gluten intolerance? It's worth looking into. Celiac Disease can cause other autoimmune problems and can sometimes manifest itself as neurological symptoms rather than gastro-intestinal. There's a blood test that can be done for it, but it's not always 100% accurate. Sometimes the antibodies are in the CSF, not the blood. The easiest way to find out is to go 100% strictly gluten free for awhile and see if it helps. I used to get the pale look, feeling like I had the flu afterwards, losing track of time, etc. It used to happen as I ate, right after I ate, and randomly for days after I ate the wrong thing. Now it hardly ever happens to me anymore. If the meds are giving you problems, this alternative would give you a way to find out if you even have to take them.

HOWEVER: I want to caution that you should never quit antidepressants cold-turkey if you have C. You'll get what's called 'rebound C' where it gets worse than normal if you don't taper the meds slowly. It will make your life a living hell.

Also, I took vivactil for mine and found that I only needed 5-10mg to control my C. Maybe your dose is too high? Just a thought. I hope you can get things managed a bit better soon. smile.gif

#14 sleepless sleeper

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Posted 11 May 2009 - 08:22 PM

QUOTE (Gary @ May 10 2009, 07:29 PM) <{POST_SNAPBACK}>
First of all this is great to get so many different perspectives from so many. Let me see if I can answer some of these questions. On the sleep study, I had a sleep study and a day study that followed. This was before I start any meds for cataplexy. I was observed eating during these studies. I have had several EKG's, EMG's and EEG's one of which I had an Cataplexty attack during. Of coarse during this time the neurologist and the family doc thought I might have hypoglaycemia. I have tried prozac at 20 mg along with Xyrem 2.5 2 times a night. But I had some unbearable headaches while taking the Prozac. They now have me on Vivactil 5mg 2 times a day instead of Prozac. The headaches are not as bad, but I still have them. I'm still taking Xyrem at 2.5 2 times a night. Another question was about my attacks. When having my attacks, I get in a comma type state, but I can hear everything going on around me. I cann't gain musle control of my eye lids, neck, hands, and legs. I can't talk, it usually comes out slurred. Usually my attacks start with a tingling sensation around my face, My eye lid close and I try to reopen them by looking up with my eyes without success. I usually become so weak that I cannot stand up. If I am in a place where I cannot lay down, it usually takes several people to lift me. I always know where I am an my surrounding, I can even remember what people say around me. Now on the other hand, I usually can not accurately describe how long the episode has lasted. For example, in the ER they were asking me what kind of allergies I had and my words were slurred as I tried to speak. I have even had people tell me that in the beginning of an attack while I was trying to fight it off, that my speach would start being slurred. One guy described it like someone who had had 1 too many to drink in a bar. I have had several Neurologists look into my Autoimmune system. One of the Neurologist that witnessed my attacks at the Mayo was an Autoimmune specialist. He ran a lot of tests that all came back OK. In the beginning they ruled out Epilepsy. The Neurologist even tried me on seizure meds in the beginning that did not help my episodes. The attacks always seem to be after or during a meal. Home by myself or in public- the surroundings don't seem to matter. One thing is for sure, since I started taking Xyrem and taking an antidepressant I am a lot better. I went from having up to 3 attacks a day at different levels to only having 3 in the last 3 weeks. I feel a lot better most of the time now. One thing I notice is that if I'm not feeling good or just drained for energy, I will have some kind of episode. I was having episodes that lasted 45 minutes to 1 hour 1/2 to these last 3 only lasting about 15 minutes or so. Oh, one other thing, I really get Pale complexion when I'm not feeling well or having an attack. Does anyone else feel drained, almost like your getting over the Flu after having an attack?
Great questions,
This is good to help me understand,
Gary

Your C is like mine when it's bad. But mine isn't food related. Xyrem does help alot, but I can't take it. Antidepressant help tremendously. I've gotten off those, though, and it's been almost a couple of months. I'm too tired to type more. It's getting too difficult to pay attn.

btw - pls anyone - i know is hijacking, but i've had drugs for add, adhd, and attn is bad anyway. drs don't think iz add adhd, but how do u know if it is or isn't? i'll start topic elsewhere. lets see if i remember this time.

#15 Gary

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Posted 12 May 2009 - 07:32 PM

Someone asked me if I had done a food diary, the answer is yes. I really appreciate all the thoughts and insights. I think someone also asked me about being drained and tired. For me it is usually after I have a really bad attack. I will look into the gluten. I have had several tests at different times for Celiac Disease. The doctors at the Mayo would even have me eat and then go straight for a blood test during the attack. I know that someone else mention gluten, but I notice that some of my attacks were after eating foods without gluten. I will still keep that in mind.
Gary

#16 Bobbie

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Posted 21 January 2010 - 03:32 PM

Gary, I, being 67yrs old, and having N/C for 55yrs, I've had every Cataplexy experience possible. I was also first diagnosed with Cataplexy. I was also experiencing sleep paralysis, hallucinations, not realizing they were part of Narcolepsy. To be honest, I never got enough sleep and always blamed that on being tired or sleepy. The blatant sleep attacks became evident after my first child and worsened with my next 2 children. I still have severe cataplexy. If I forget to take a pill on time I am subject to a big time attack in which I go into a comma type state....like half awake yet having dreams while still being able to hear what is going on around me. If the TV is on, the dreams or hallucinations take on the same theme. Actually, many of which were quite entertaining and enjoyable. Some pretty scary. Now, I have an excellent doctor who has me on Anafranil for my cataplexy which has been nothing short of a miracle. I seldom have cataplexy at all. Sometimes, due to stress or lack of sleep, I will have an episode which will go away after I take another pill. BTW, I haven't experienced any side effects. I spent most of my life fighting to stand up while having cataplexy, masking it so no one would notice. Sometimes, looking drunk or about to fall asleep to many people. I would have well over 50 a day, some for no reason at all. I have read so many descriptions of what Narcoleptics/Cataplexy are experiencing and they all boil down to the same symptoms.....people are just relating them differently.
I don't doubt that you have Narcolepsy with Cataplexy being the most prevalent symptom right now. You have the other symptoms that accompany Narcolepsy. I think that most physicians have a hard time understanding what we really go through thus making it hard for them to diagnose or treat. I urge you to talk to your doctor and ask him if you can try Anafranil. It's certainly worth a try.
And to Jenji: Excellent info (I am from NY)

#17 Gary

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Posted 30 January 2010 - 02:12 PM

Gary, I, being 67yrs old, and having N/C for 55yrs, I've had every Cataplexy experience possible. I was also first diagnosed with Cataplexy. I was also experiencing sleep paralysis, hallucinations, not realizing they were part of Narcolepsy. To be honest, I never got enough sleep and always blamed that on being tired or sleepy. The blatant sleep attacks became evident after my first child and worsened with my next 2 children. I still have severe cataplexy. If I forget to take a pill on time I am subject to a big time attack in which I go into a comma type state....like half awake yet having dreams while still being able to hear what is going on around me. If the TV is on, the dreams or hallucinations take on the same theme. Actually, many of which were quite entertaining and enjoyable. Some pretty scary. Now, I have an excellent doctor who has me on Anafranil for my cataplexy which has been nothing short of a miracle. I seldom have cataplexy at all. Sometimes, due to stress or lack of sleep, I will have an episode which will go away after I take another pill. BTW, I haven't experienced any side effects. I spent most of my life fighting to stand up while having cataplexy, masking it so no one would notice. Sometimes, looking drunk or about to fall asleep to many people. I would have well over 50 a day, some for no reason at all. I have read so many descriptions of what Narcoleptics/Cataplexy are experiencing and they all boil down to the same symptoms.....people are just relating them differently.
I don't doubt that you have Narcolepsy with Cataplexy being the most prevalent symptom right now. You have the other symptoms that accompany Narcolepsy. I think that most physicians have a hard time understanding what we really go through thus making it hard for them to diagnose or treat. I urge you to talk to your doctor and ask him if you can try Anafranil. It's certainly worth a try.
And to Jenji: Excellent info (I am from NY)



#18 Gary

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Posted 30 January 2010 - 02:27 PM

I now have a new diagnosis of Hypokalemic Periodic Paralysis. Please read below and you might understand.
It’s a long story,some say it should be on TV some day, like Mystery Diagnosis or House. It started about 2 years ago, and doctors from Seneca,SC, Greenville SC, Mayo Clinic, Stanford, and now Emory have been trying to figure it out.Spring 2008,I started getting tingling and numbness to my face, arms, and legs that led to slurred speech, double vision and collapses during episodes that would last up to 2 hours.It would usually be 1 every month or so.Sometimes I would have them at my son's baseball games or after I would eat.The spells or episodes got more frequent in September 2008. When I ate I would have some form of symptom. Sometimes it was tingling of face and double vision, other times it would be a full range of slurred speech, trouble breathing, and collapses with consciousness.The doctors put me in the hospital for three days thinking I had an aneurysm,stroke,diabetic seizure, or some kind of heart problem.The conclusion after the test came back normal was that it may be periods of low blood sugar (hypoglycemia) that was causing these episodes. The endocrinologist ruled out hypoglycemia along with a pituitary gland disorder. The most interesting episode was while having lunch at a local Mexican restaurant with friends Sunday after church. I started having them other times for no real reason at all (ie church), even during the night while I would sleep. I was sent to the Mayo Clinic in Jacksonville, Florida. After many tests and even observing an episode we still had no answers. The neurologists there felt I might not be getting enough oxygen to my brain at times, so they suggested I see a pulmonary specialist. He ruled out that theory and started searching. I have been on a lot of interesting meds. None seem to completely make the collapses go away. I was diagnosed with something called cataplexy back in April and if you look it up on You-Tube you can see some examples that are similar to my collapses. There was a video series named "I woke up in the Morgue" but I haven't seen it lately. The problem is I do not have the sleep disorder called narcolepsy and it will be about a 1 in 2 million shot that I have pure cataplexy without a tumor or something in my brain causing it. So the pulmonary specialist and local neurologist felt that they needed to find someone else. They contacted a doctor at Stanford. Stanford then found a doctor at Emory they could work with and save us the travel expense. Guess what, they think I have something besides cataplexy. They ordered some blood tests and a spinal tap that had to be sent to Spain to try to determine my diagnosis. The doctors at Emory changed my meds before Thanksgiving 09 to treat me for what they think it is, basilar migraines, you will have to look that one up for a good description. It has something to do with an artery at the base of the brain. We should know something by the first of the year. Thursday Dec. 3 2009, I collapsed at work which led to them calling an ambulance. The doctors at Anderson Hospital called Emory to see what to do. Any way they gave me some meds for a post collapse headache and I had a reaction to the drug that just about made me crazy. It reminded me of someone you would see on TV who is going through DT's or withdrawal symptoms. My wife called the ambulance. Then Friday and Saturday morning I had developed the inability to swallow because my month was as dry as cotton and my muscles began to cramp, so I had to go to Urgent Care and get some IV fluid. Turned out the med's they gave me dried me out to the point my body would not take in the fluids that I was drinking; it would just pass through me. Right now I'm doing OK, just dealing with a headache or 2 from time to time. I guess I'm out of work until the doctors at Emory can diagnose me and come up with a treatment plan that stabilizes me. On January 8,2010,Emory sent me to a Neurologist in Greenville who believes I don't have basilar migraines. The spinal tap came back negative for cataplexy. Blood tests and sleep study negative for narcolepsy. He feels I have a condition called Hypokalemic Periodic Paralysis. To confirm, the doctor put me in CCU at Saint Francis Hospital Greenville. Went fairly well. Tested positive for Hypokalemic Periodic Paralysis. Feel like I've been run over by a bus or getting over the flu. The test in the CCU basically made have one of my major spells. My potassium dropped because they made my insulin run up in the test to see if it would trigger an attack. They did this by running up my sugar, give me glucose by mouth and by IV. It got as high I remember as 560 then bottomed out latter at 60 before stabilizing. Test worked well, nurse said she thought it looked like someone having a stroke. Doctor had me in CCU because of cardiac risk with test. Started medicines and potassium today. I will need to have genetic testing to confirm which type, there are several they can treat, no cure. Thanks again Gary
Here is a great link explaining my condition and to see updates.
http://www.caringbri...d/mystory<br />
http://hkpp.org/faq/..._paralysis.html

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



#19 Day Dream Believer

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Posted 31 January 2010 - 09:29 PM

I now have a new diagnosis of Hypokalemic Periodic Paralysis. Please read below and you might understand.
It’s a long story,some say it should be on TV some day, like Mystery Diagnosis or House. It started about 2 years ago, and doctors from Seneca,SC, Greenville SC, Mayo Clinic, Stanford, and now Emory have been trying to figure it out.Spring 2008,I started getting tingling and numbness to my face, arms, and legs that led to slurred speech, double vision and collapses during episodes that would last up to 2 hours.It would usually be 1 every month or so.Sometimes I would have them at my son's baseball games or after I would eat.The spells or episodes got more frequent in September 2008. When I ate I would have some form of symptom. Sometimes it was tingling of face and double vision, other times it would be a full range of slurred speech, trouble breathing, and collapses with consciousness.The doctors put me in the hospital for three days thinking I had an aneurysm,stroke,diabetic seizure, or some kind of heart problem.The conclusion after the test came back normal was that it may be periods of low blood sugar (hypoglycemia) that was causing these episodes. The endocrinologist ruled out hypoglycemia along with a pituitary gland disorder. The most interesting episode was while having lunch at a local Mexican restaurant with friends Sunday after church. I started having them other times for no real reason at all (ie church), even during the night while I would sleep. I was sent to the Mayo Clinic in Jacksonville, Florida. After many tests and even observing an episode we still had no answers. The neurologists there felt I might not be getting enough oxygen to my brain at times, so they suggested I see a pulmonary specialist. He ruled out that theory and started searching. I have been on a lot of interesting meds. None seem to completely make the collapses go away. I was diagnosed with something called cataplexy back in April and if you look it up on You-Tube you can see some examples that are similar to my collapses. There was a video series named "I woke up in the Morgue" but I haven't seen it lately. The problem is I do not have the sleep disorder called narcolepsy and it will be about a 1 in 2 million shot that I have pure cataplexy without a tumor or something in my brain causing it. So the pulmonary specialist and local neurologist felt that they needed to find someone else. They contacted a doctor at Stanford. Stanford then found a doctor at Emory they could work with and save us the travel expense. Guess what, they think I have something besides cataplexy. They ordered some blood tests and a spinal tap that had to be sent to Spain to try to determine my diagnosis. The doctors at Emory changed my meds before Thanksgiving 09 to treat me for what they think it is, basilar migraines, you will have to look that one up for a good description. It has something to do with an artery at the base of the brain. We should know something by the first of the year. Thursday Dec. 3 2009, I collapsed at work which led to them calling an ambulance. The doctors at Anderson Hospital called Emory to see what to do. Any way they gave me some meds for a post collapse headache and I had a reaction to the drug that just about made me crazy. It reminded me of someone you would see on TV who is going through DT's or withdrawal symptoms. My wife called the ambulance. Then Friday and Saturday morning I had developed the inability to swallow because my month was as dry as cotton and my muscles began to cramp, so I had to go to Urgent Care and get some IV fluid. Turned out the med's they gave me dried me out to the point my body would not take in the fluids that I was drinking; it would just pass through me. Right now I'm doing OK, just dealing with a headache or 2 from time to time. I guess I'm out of work until the doctors at Emory can diagnose me and come up with a treatment plan that stabilizes me. On January 8,2010,Emory sent me to a Neurologist in Greenville who believes I don't have basilar migraines. The spinal tap came back negative for cataplexy. Blood tests and sleep study negative for narcolepsy. He feels I have a condition called Hypokalemic Periodic Paralysis. To confirm, the doctor put me in CCU at Saint Francis Hospital Greenville. Went fairly well. Tested positive for Hypokalemic Periodic Paralysis. Feel like I've been run over by a bus or getting over the flu. The test in the CCU basically made have one of my major spells. My potassium dropped because they made my insulin run up in the test to see if it would trigger an attack. They did this by running up my sugar, give me glucose by mouth and by IV. It got as high I remember as 560 then bottomed out latter at 60 before stabilizing. Test worked well, nurse said she thought it looked like someone having a stroke. Doctor had me in CCU because of cardiac risk with test. Started medicines and potassium today. I will need to have genetic testing to confirm which type, there are several they can treat, no cure. Thanks again Gary
Here is a great link explaining my condition and to see updates.
http://www.caringbri...d/mystory<br />
http://hkpp.org/faq/..._paralysis.html

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




Day Dream Believer: Gary, it sounds like you have been through the wringer with this one! I am glad that you finally ruled out other things like N and C. I hope you get the help you need and are able to get back on your feet and stable. Keep you chin up and I wish all the best.

#20 narcats

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Posted 15 August 2010 - 04:58 AM

new here--son finly got Dx with cataplexy without narcolepsy 2010-short history- problems started over 10 years ago--triggers happy sad or anything in between--and a few other thing-- 29 unDxs and Dxs worthless all these years-Drs- shrinks and useless meds-he lost the title of nuts -me the over protect mother-- very little rem to no rem- problems sleeping--test neg -sleep studies neg -blood work neg-drug neg- alcohol neg-- but tested pos for the nar test-- met a wonderful Dr in LA ahead of Neurology deperment--this up close and presonal thing with the floor sucks---something funny as one Dr wrote and tried to tell all conversion disorder means one can hear when ones passed out silly Dr---