9 replies to this topic

[eph]

Hello,

 

I just recently got a mixed/temporary diagnosis of Narcolepsy or Idiopathic Hypersomnia. Bascially my doctor has narrowed it down to those two choices and I will discuss it further at my follow up with him in three weeks. He did say "I think you have narcolepsy" at the end of our last appointment but he also said he will probably dx hypersomnia if my blood test comes back negative for the HLA gene which it did. Therefore, my insurance won't cover Xyrem even though there is still a possibility of narcolepsy.

 

I am currently on 0.5mg of Klonopin a night even though I don't always take it every night. It definitely helps me get nice, restful sleep which I love and occasionally helps with my anxiety. However, it makes me feel so groggy in the morning!! Some days are much, much worse than others (like today I feel like a zombie) and I attribute that to my anxiety levels being higher on the days that I feel less groggy (could be wrong though). The biggest issue is that I am a working college student and I often CAN'T wake up for classes and work when I take it.

 

Since I can't take Xyrem at this point, does anyone have any suggestions as to what medications might be better at night and cause less daytime drowsiness?

 

[Tre]

If it is N no sleep aid will help.  sleep aids basically just make you tired...aka make you fall asleep the structure/way you sleep will still be the same and you won't go through the correct stages of sleep for the right times.  xyrem changes your sleep and gives you more slow wave sleep.

Not having the gene doesn't define if you have Narcolepsy.  Narcolepsy can be caused by illness, injury or autoimmune issues.

You can try stimulants with either disorder however.  If you have insurance I would say try Provigil or Nuvigil if you can.

[DeathRabbit]

If it is N no sleep aid will help.  sleep aids basically just make you tired...aka make you fall asleep the structure/way you sleep will still be the same and you won't go through the correct stages of sleep for the right times.  xyrem changes your sleep and gives you more slow wave sleep.

Not having the gene doesn't define if you have Narcolepsy.  Narcolepsy can be caused by illness, injury or autoimmune issues.

You can try stimulants with either disorder however.  If you have insurance I would say try Provigil or Nuvigil if you can.

This is maybe perhaps a little overly pessimistic. While it's true nothing will eradicate/fix the problem, it's still possible to find certain medications that will help. Everyone's brain is different. I have found that 5-htp helps my sleep a lot. For some people it doesn't. Many people find some measure of relief from SSRI or tricyclic/tetracyclic antidepressants. Even Xyrem doesnt work for everybody, despite being oft billed as the narcolepsy silver bullet. Keep in mind, you will never be nromal. But with a little bit of searching, perhaps you can find a treatment that makes your scondtion mangeable and less overwhelming. You might want to switch the Klonopin for some Xanax. It gets out of your system quicker.

[eph]

Thanks for your replies!

 

I will probably do another MSLT in the future as I'm very confident that it will yield more definitive results now that I know what to expect. Just wish it wasn't so expensive

 

DeathRabbit do you have any experience with SSRIs or antidepressants?

 

Pretty much every doctor I have been to has suggested them to me due to the sleep disorder/anxiety combo. I even got a perscription for Paxil that I never filled. I just always hear terrible stories about those medications and it seems like the side effects outweigh the benefits. I also hate the idea of being on something that so constantly alters your brain chemistry. At least with with things like Klonopin and Xanax they are out of your system within a day or so and I can decide when to take it/take breaks.

 

I would love to hear about anyone's experience with SSRIs and antidepressants though as I might reconsider if necessary.

[MINItron]

I know that my doc prefers to use tricylics first as he considers them more effective for the treatment of N, but they have a higher incidence of side effects. He switches to SSRIs if the patient cannot tolerate TCAs (tricyclic antidepressants). The good things is there are a large number of slightly different meds at the doctors disposal to find the one that works for you. Everyone's brain reacts differently to each medication. I personally have taken three different TCAs from the same family, but can only tolerate one of them.

 

Narcolepsy is a disease of the brain, and there are basically two ways of treating it. You can modify your lifestyle and diet to maximize your life, or you can use medications that alter the brain's chemistry to help mediate the symptoms. Adding anxiety to the mix just compounds the difficulty of treatment.

[Hank]

Hello,

 

I just recently got a mixed/temporary diagnosis of Narcolepsy or Idiopathic Hypersomnia. Bascially my doctor has narrowed it down to those two choices and I will discuss it further at my follow up with him in three weeks. He did say "I think you have narcolepsy" at the end of our last appointment but he also said he will probably dx hypersomnia if my blood test comes back negative for the HLA gene which it did. Therefore, my insurance won't cover Xyrem even though there is still a possibility of narcolepsy.

 

I am currently on 0.5mg of Klonopin a night even though I don't always take it every night. It definitely helps me get nice, restful sleep which I love and occasionally helps with my anxiety. However, it makes me feel so groggy in the morning!! Some days are much, much worse than others (like today I feel like a zombie) and I attribute that to my anxiety levels being higher on the days that I feel less groggy (could be wrong though). The biggest issue is that I am a working college student and I often CAN'T wake up for classes and work when I take it.

 

Since I can't take Xyrem at this point, does anyone have any

suggestions as to what medications might be better at night and cause less daytime drowsiness?

Here are my suggestions:

1. Do get the MSLT- sleep onset REM is the gold standard for a Narcolepsy diagnosis.

2. Stay away from Klonopin for 3 reasons. Firstly, it decreases slow wave sleep and supresses REM sleep. So, while it extends sleep, the quality is poorer. Secondly, it is a long acting benzodiazapine with a long half life (24-48 hours). So, while it helps you feel sleepy at night, that sleepiness lasts through the day also. When you take it each night, you begin to stack half lives. Lastly and most important, it created a very strong physical dependance and messes with GABA. To discontinue Klonopin, you must begin a long slow taper to minimize a significant withdrawal syndrome. I mention this because I was prescribed Klonopin for a misdiagnosis. It took me 6 months to taper off and an additional 6 months to get my personality/brain back. Basically, Klonopin robbed me of a year of my life. I recommend this website: http://recovery-road.org/

I could not repeat my MSLT until I had been off Klonopin for 1 month.

3. You cannot take Xyrem and Klonopin together because both supress respiration and together the can be fatal. That would certainly be a drag.

4 Consider Trazadone for sleep. It is an antidepressant that is rarely used for depression because it is so sedating. I have significant insomnia from Narcolepsy and Trazadone does the trick for me with no grogginess in the morning.

 

I hope these suggestion help.

[doinmdarndest]

stimmies help some of us.  if nothing else works, they might be for you.  you must fortify yourself to disregard their side effects such as paranioa. CONTROL is the key to lock-step your every act strictly according to that which is logical, even as amphetamine induced illogical behavior seems so correct when experienced.

 

over time, one can become accustomed to stimmies.  i did it.  they sure aren't for everybody. yet they are certianly the only way for some of us.

 

we should all be highly supportive of each other differences in our meds should never divide us.

 

a threat to some pwn is a threat to all of us. that is my opinion.

[DeathRabbit]

Thanks for your replies!

 

I will probably do another MSLT in the future as I'm very confident that it will yield more definitive results now that I know what to expect. Just wish it wasn't so expensive

 

DeathRabbit do you have any experience with SSRIs or antidepressants?

 

Pretty much every doctor I have been to has suggested them to me due to the sleep disorder/anxiety combo. I even got a perscription for Paxil that I never filled. I just always hear terrible stories about those medications and it seems like the side effects outweigh the benefits. I also hate the idea of being on something that so constantly alters your brain chemistry. At least with with things like Klonopin and Xanax they are out of your system within a day or so and I can decide when to take it/take breaks.

 

I would love to hear about anyone's experience with SSRIs and antidepressants though as I might reconsider if necessary.

I have been on Paxil, Zoloft, and Lexapro prior to N manifestation, because I was over-anxious/depressed as a teen. Of the three, Lex was the best. Zoloft made me gain 20 lbs in a month, Paxil did all sorts of things, but the worst thing about Paxil is that it is very hard to kick. When you try to quit Paxil, you get horrible brain-fog, brain zaps, terrible REM rebound, etc. All of which when stacked on top of N symptoms makes for a very unfun experience. Of course to be fair, I was on the Paxil much much longer than the other two, but my research of has led me to simiIar accounts of how nightmarishly hard it is to kick Paxil. I haven't experienced any TCAs myself, but my mom swears by anafranil. She says she can't sleep without it. But I have not used any antidepressants specifically as a treatment for N, so I cant speak as to how effective they are. I do have mixed feelings about using SSRIs or TCAs for long term treatment, seeing as I had such a horrible experience with Paxil, but it's just a judgement call based on how well it relieves your symptoms versus the side-effects. One thing I can say is that I am on a mood stabilizer (lamictal) right now to deal with the after effects of my horrible Xyrem episode (It brought back my anxiety/depression 10 fold) and it has helped a lot with the brain fog and overwhelming sleepiness. I'm still tired throughout the the day, no matter how much I sleep. But it's a normal tired, not a "my brains are leaking out of my ears" tired. And that I can deal with, being that it's so much easier to function, even if I'm still imparied to a certain degree. The anxiety/depression however, is still not completely controlled. They started me on Xanax, but I think I might need a slightly higher dosage, as it currently only really takes the edge off. Not that Xyrem isn't a wonder drug for some people, but for me, it came damn near close to ruining my life, and it still might if I am never able to succesfully KO this anxiety issue. My experience with Xyrem was nonstandard, so I won't warn you off from it. However, my Paxil experience was far too common upon investigation, and I believe GSK had some legal trouble because they knew how addictive it was and suppressed the research.

[Vanessa Elizebeth]

I dont like pharamaceuticals either but natural herbs and remedies seem to work good for me.So there is these natural pills called Melatonin and you can get them at Walmart or any health food store.Your brain makes it when it gets dark out to help fall asleep.I take 1 to 2 1mg pills to go to sleep.Just make sure it is dark in your room.Good luck.

[DeathRabbit]

Melotonin doesn't work well for a lot of narcoleptics because our circadian rhythm is befouled. At least, I know I can down half a bottle and feel nothing.