- This topic has 5 replies, 5 voices, and was last updated 3 years, 8 months ago by Remmyma. This post has been viewed 753 times
- July 11, 2017 at 8:56 pm #1298iDaniels7Participant
So I was diagnosed about a year ago with narcolepsy with cataplexy. At first I wasn’t so sure about the cataplexy part, because I never experienced overt cataplexy that I thought of. Later I realized I have had cataplexy in highly stressful or anxiety inducing situations.
For example, while taking very important standardized testing for my post graduate education and professional certification, I doze off! I failed a test last year in which I fell aslee 5 times. This actually prompted me to seek medical attention and that’s when I was finally diagnosed. For some reason, prior to this I just dealt with my symptoms and thought I was just a sleepyhead… After having tried Ritalin and wellbutrin in the past for misdiagnosed ADHD, I asked my doctor to stay away from stimulants as the side effects were bad I was started on xyrem and felt ALIVE and awake for the first time in my life. Sadly, my insurance doesn’t cover the medication and the xyrem assistance program has not been able to help me so I was forced to go on adderall XR, because after experiencing being awake, going back to my “normal” was not an option
I don’t get the full benefit from adderall as I did from xyrem, but it did help me go through the day without falling asleep or feeling like I can’t stay awake.
However, I’m retaking that test I failed last year in August. Mind you, this is a $1400 test, so I really want to pass it because having to pay that much twice was painful. Not to mention the anxiety surrounding it. But now, my symptoms are worsening! I’m sleeping a good 7-8 hours nightly, I am on the same dose that had been working for me plus a small immediate release dose to take as needed (which has been doing NOTHING), and suddenly I’ve caught myself dozing off in traffic, fighting not to fall asleep by 3pm, and getting knocked out by 5:30pm for 2 hours only to wake up more tired! That, in turn, is keeping me from studying for my test, so it’s a vicious negative cycle for my anxiety…
Has anyone experienced this? How did you overcome it? I’d hate to go up on adderall and get palpitations and more anxiety… I feel so helpless! Any advice would be greatly appreciated!July 11, 2017 at 9:18 pm #1302TheRabbitKingKeymaster
I would suggest asking about a small dose of tricyclic antidepressant (I do Elavil 25mg) or something like trazodone at night. Many of us have had our EDS somewhat abrogated by doing this. Thats a honking expensive test. Im prolly gonna take CCNA ICND1 later this year and I dread failing that but its only 300. I’ll count my blessings now haha.
- This reply was modified 3 years, 9 months ago by TheRabbitKing.
My current jam: Anathema - SpringfieldJuly 11, 2017 at 10:52 pm #1318NatdocParticipant
DR is right, prior to xyrem Narcolepsy was treated with stimulants and antidepressants on a regular basis. Don,t forget good sleep hygiene, exercise and sunlight.You might consider a low dose of melatonin at bedtime also.
Just out of curiosity with a diagnosis of TypeI narcolepsy, why does your insurance refuse to cover the medicine? Xyrem is the preferred drug in this instance?
Best of luckJuly 12, 2017 at 7:07 am #1340iDaniels7Participant
Ok! I hadn’t not heard of that option but I guess it’s worth a shot. I have an appointment with my doctor on friday so I’ll bring it up for sure. Thanks.
That has been an issue all around. Initially they said I wasn’t a good candidate, no reason why. My doctor appealed, arguing that I have type 1 narcolepsy, and even submitted journal articles and guidelines for treatment. Then they said I had to have failed other treatments, such as stimulants plus provigil. Which is cheaper, really, but not standard of treatment for type 1 narcolepsy. My doctor appealed again, saying I actually didn’t tolerate stimulants in the past, meaning I did try it and failed it. Leaving xyrem as my only option. They again denied it, apparently they’re saying that it is too expensive and that I should be given less expensive alternatives like ambien.
It is so absurd! It’s like a bad joke over and over again.
My doctor mentioned there is a group of patients that got together because of this issue and they are suing the insurance company. I don’t know how that’s going, but that’s the last I hear. For now, I had to settle for adderall and bite the bullet until I can get xyrem again…
July 14, 2017 at 11:44 am #1572JasonKeymaster
- This reply was modified 3 years, 9 months ago by iDaniels7.
I’d try armodafinil (Nuvigil) before anything else if you haven’t tried it. Nuvigil has a better cardiovascular side effect profile than caffeine, much less Adderall or Ritalin. It works differently than traditional stimulants, like those you’ve mentioned above. Ritalin, Dexedrine, and Adderall all increase norepinephrine, Nuvigil does not.
It’s first line treatment for excessive sleepiness in either type of narcolepsy. It’s also much less annoying to access since it’s only schedule IV, meaning you can get refills. I believe they have a free 30 day coupon for the brand name variety. If it doesn’t work for you, that’s more evidence to use on appeal. Xyrem is second line treat for EDS. So if cataplexy isn’t really the major issue, it makes sense to try Nuvigil first since it has a far better side effect profile.July 20, 2017 at 1:33 am #1992RemmymaParticipant
I had the SAME experience on Adderall. I was taking the Adderall because it had worked in the past. It initially worked really well, until it didn’t. And it was only at that 3-5pm hour! So my doctor added Provigil to my regiment. And not only do I take it with my Adderall in the morning but I take a noon dose. I think it’s the noon dose that helps me continue to stay alert the rest of the day without the overstimulation. I hope all goes well at your doctor’s appointment and GOOD LUCK on your exam. I know it means the world to you right now and for good reason!
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