Reply To: Prolonged cataplexy and rapid Rx tolerance

Hello. So sorry you’re in such a rough place.
It’ll take time, having a diagnosis is one step, the next is grasping it, as it is for yourself. It’s a different path for each of us and a bumpy one for sure, a rollercoaster I often describe mine as.
I’m totally with Ferret, slightly on a different plain in regards to my method being vaping Cannabis more so than ingesting it. As I read your posts I felt like you need a rest, some down time to recover, to help cope with the stresses and/or just being overly exhausted.
A) just the discovery of the term such as Cataplexy is like a huge door opening, if you’ve been dealing with it unknowingly, yet it all depends on too many circumstances and I won’t begin being thorough there…
B) if you’ve been exerting yourself physically and mentally, beyond say what you may eventually discover as, to be, your own ‘limits and boundaries,’ there’s a good connection of that to amplified, increased, progressing Cataplexy.

In time, with time, things appear clearer, which is of good and bad.
-Some good, being you can arm yourself by learning through the internet, focus on terminology, medical writings and definitions, and interacting, reading other experiences on forums like this. You can improve Narcolepsy symptoms by improving your overall health situation, it goes both ways, and I’m definitely not saying you’ve brought anything upon yourself, not at all.
-Some bad, many things are frustrating repetitively, that being others misunderstandings, confusions and the conflictions out there in even the last places you’d expect it to be, or for that matter where it should be solid but there’s no quality assurance overseeing nor control (that’s my knock on the medical realm in regards to this disease which involves an enormous spectrum).

Get this, statistically (according to people speaking at a Narcolepsy Network conference, yet this is my description of what was said) people who have at some point collapsed regularly from Cataplexy is around or less than 10% of the total, including both types of Narcolepsy, 100% of persons with the disease, around 70% of that 100% have experienced some form of Cataplexy.
The only reason I mention this is to say, there is very limited expertise and knowledge on or of it, Narcolepsy is more known but hardly, obvisouly. It’s very hard to find anyone willing to talk about the depth/s that Cataplexy reaches.

Basically, personally, I must be neurotic AF (in many ways, one could say) about what I eat, how I behave, with whom and when, to what extent I interact and/or participate. To be blunt and honest, I don’t do much socially, I don’t have a career nor relationship, I hang on and cherish what I can, doing what I can manage to do. That may sound worse than it is, but I’m content and comfortable, which is all that I dream of being, hoping to make it work trying to figure the non lifestyle, reality of living type shit out. It took me many years but for me the ‘lifestyle’ part was what I had to figure out, how to possibly balance it, preserve and maintain as best I can; a grounded mindset, behavior and environment are everything.
-Allergies can be hugely heavy and burdening, it’s also easy to overlook or not pick up on for what they are. There’s a lot of stuff we can be allergic or sensitive to, and lot of ways to avoid or minimize being exposed to it.

-Don’t fight nor resist, mentally nor physically, Cataplexy, doing so will amplify and prolong it. Learn to be comfortable with it, if you’ve not already learn to meditate (count and breath, take yourself out of your mind) as it is valuable for much and very much severe Cataplexy. It’s an odd thing to say you’re comfortable with ‘unexpected complete temporary muscle paralysis’ but fearing or being angry at it, gives it a card to play.

The best of luck to you, you’ve come to a good place.

Reply To: Questionable efficency test of medication.

Hey you all!
Thanks for the response. It seems like we more or less agree. Weird that my doctor can’t see it this way…
And yeah the test in it self isn’t stupid. Probably not too bad of an indicator for knowing if you’re safe to drive.
And doing some MWT sessions without meds and then some with I guess also could tell you something about the efficency of the drug.
I’ll see how this develops. I’m in for some more tests before my doctor feel like she can prescribe me the heavier stuff like GHB and ritalin…

Take care everybody!

Reply To: Questionable efficency test of medication.

@max totally agree with @natdoc but I think it’d be fair to say that if you didn’t fall asleep or had significantly better results on medication it might be an okay test to measure the effectiveness. But it’s still a bit silly to use a diagnostic test for medication.

Unfortunately the only medication shown to restore pwn to the performance levels of a person without narcolepsy is methamphetamine. Obviously it’s not used very often however.

Reply To: Questionable efficency test of medication.

Neither the MSLT or MWT are scientific in that they are not reproduceable. Both of these “tests” will vary from day-day in the same patient.
The best monitoring parameter is YOU. How do you feel, are you better, worse or the same.
These tests are performed more per insurance company requirements than Physicians needs.
MSLT and MWT should not be compared as they are different tests, the MWT can in no way tell if your meds are working.
SorryBest of luck

Reply To: Questionable efficency test of medication.

I’m giggling here because I absolutely agree with you. I’ve never done that test but I also question it. Still, it’s often done for those who have had their driving licenses suspended due to a diagnosis of Narcolepsy. If they can stay awake then they can usually get their license back.

Reply To: Questionable efficency test of medication.

Hello Ferret!
Thanks for specifying what the yet was called.
I’d agree to that it was a failure.
In the link that you sent though it says in the “results” section that you can’t “fail” the test. Just that a doctor can analyze the test result and come to a conclusion from that.
What I didn’t agree with its that my doctor came to the conclusion that the meds worked. And especially that she came to that conclusion only by the comparison with the MSLT results.
I can understand that the test is done like it is and that, in cases where people don’t show any sign of falling asleep, it could show if the medication is efficient.

But to compare it to the MSLT and just because it’s slightly better say that mediation is working must be science at its lowest…

Reply To: Prolonged cataplexy and rapid Rx tolerance

Are you taking anything to improve the quality of your sleep? It really cheeses me that Doctors give stuff to stop cataplexy and stuff to keep you awake but leave you with the crappy sleep quality which is the cause of the other two things.
If you are in an area of the world that allows cannabis, please go to the Non Rx Strategies and read the Cannabis Oil Cheat Sheet. Great sleep and eliminated my cataplexy. This was a game changer for me and I only started it in 2014 with the hope of getting some quality deep sleep. After having daily episodes of cataplexy since 1985, you cannot imagine the difference it has made in my life.
If you can’t use the cannabis then please consider a CBD oil from hemp because you most likely won’t be having the anger episodes or sadness. Just no CBD after 6 pm.
You need to consider alternatives to your pharmaceutical meds because I think you sound a lot like me in the years ’86 to ’89. Have you talked with someone close to you who has noticed changes in your personality and behavior? Please listen to them if that is the case.
Best of luck going forward… and don’t EVER give up. You will find what works for you.

Reply To: Prolonged cataplexy and rapid Rx tolerance

@capeofgoodhope usually an SNRI like effexor is used for cataplexy rather than an ssri.

You have not tried any other stimulants? Xyrem is a pain in the ass to get covered. It’s because the pharmaceutical company charges 13k per month for it. Personally, I found it horrible as a medication but others find it helpful. It’s very hard to tolerate the side effects for a lot of people. They used to give a 30 day supply for free. I don’t know if they still do.

Dexedrine is more wake promoting than adderall supposedly. I prefer it. It’s similar to adderall but has less side effects for me.

Focalin is another possible medicine you could try. It works differently.

Nuvigil is usually first line for sleepiness and it doesn’t have the rapid tolerance problem. My doctor did the clinical studies on it.

Reply To: Prolonged cataplexy and rapid Rx tolerance

My insurance denied the Xyrem prescription in February and my nuero told me she is going to appeal but still has yet to. It’s May, so I’m pissed.

I have been on SSRIs for almost 10 years.

Also, I was super active leading up to the diagnosis. I would say that until this past week I was still more active than most, walking/biking everywhere (uni student so all over my city and campus multiple times a day), and my job requires me to be standing (25 hrs/week) so I was doing that as well.

I keep a healthy diet concerning the food itself, should just eat more. And healthy weight, check.