2 replies to this topic

[BeautyCochran]

Hay Gang! I gots a question! Have any of you ever had one of your drugs interact with another? My MD put me on 40 mgs of regular Aderall (not extended release) and several weeks later I woke up at 3:30 am having a "something something" like seizure but not. I emailed narcolepsy network about it and asked if it was cataplexy and the nice person wrote me back and said, "Didn't sound like that to them, but more like my adderall interacted with my anti-depressant, to call my pharmacist and then make appt. with Dr." So I did. Sure enough my pharmacist said that "Aderall can interact with Anafranil and to go down from 40 mgs to 30 mgs." So I did and things got better but then this morning at 3:30 am the same thing happened but not near as bad (the first time I got up and looked in the mirror and I looked like I had MS or parkinsons disease). My question is this, why would it always happen just at 3:30 in the morning when I only take 25 mgs of Anafranil (and by the way Anafranil has helped immensely so I won't go off of it).? I took provigil and it about put me in the grave! I also took dextrostat and can't take that, so my MD put me on the Aderall. Let me ask this? Are any of you STILL sleepy even on these anti-narcoleptics? I'm on 30 now, and I can't stay awake on 30 mgs of aderall let alone 20 plus I get rebound real bad when these drugs hit their peak and drop out of the system. So that means I have rebound if I'm on 20 mgs. almost right away and have rebound symptoms btw 8 am and 12 noon because I won't take it all at once, I refuse to get addicted to this stuff. I don't see how anyway, because the side effects at 30 mgs on my tongue and face are bad enough to keep me from getting addicted. (And rebound is hell!) So after 6 pm when the 3 pm dose has worn off, I feel awful!!
I think this is a great site to come to for this!! I hope I haven't written so much that no one will read it but I really need to learn how to cope with narcolepsy as I did with ME-CFS. Thanks!!! Love & Huggles-Beauty

[Kimberly]

I see a Psychiatrist for my medication management for just this reason. Most psychiatrists are trained in medication management so they can look at the entire landscape of what you're taking, your side effects, and try to tailor your treatment. My Psychiatrists works directly with my PCP and Sleep Doctor to get their input when needed.

The people at Adderall probably don't know anything about Cataplexy because it is a stimulant, and it does not have anti-cataplexy properties.

I was on 200 mg of Provigil twice a day and I could still sleep. My doctor added doses of Ritalin in between and that seemed to help keep me more alert, but in the evenings after work and before bedtime I could still sleep.

Using stimulants only treats the Excessive Daytime Sleepiness component of Narcolepsy, not the Fragmented Nighttime Sleep. If you want to treat the Fragmented Nighttime Sleep, you could look into a medication called Xyrem. I've just started on Xyrem, but both my Sleep Doc and Psychiatrist think that if I am able to get better sleep at night I might be able to cut down on the stimulants during the day.

Also, Effexor is an anti-depressant that also has anti-cataplexy properties AND regulates norepinephrine, which is one energy-related hormone. YOu might want to see if switching to that as an anti-depressant could take the place of your Anafranil, since Effexor is well-tolerated with stimulants as long as the usage is monitored by physicians.

This is probably such a confusing message because of all the drug names. I guess what I'm saying is, collect all of your medicines and why you take them, and your side effects, and take them to a clinical pharmacologist or psychiatrist that specializes in medication management. Also check out the research page on Stanford University's center for Narcolepsy website that talks about different medications:
http://med.stanford....edications.html

Good luck!

Kimberly

Hay Gang! I gots a question! Have any of you ever had one of your drugs interact with another? My MD put me on 40 mgs of regular Aderall (not extended release) and several weeks later I woke up at 3:30 am having a "something something" like seizure but not. I emailed narcolepsy network about it and asked if it was cataplexy and the nice person wrote me back and said, "Didn't sound like that to them, but more like my adderall interacted with my anti-depressant, to call my pharmacist and then make appt. with Dr." So I did. Sure enough my pharmacist said that "Aderall can interact with Anafranil and to go down from 40 mgs to 30 mgs." So I did and things got better but then this morning at 3:30 am the same thing happened but not near as bad (the first time I got up and looked in the mirror and I looked like I had MS or parkinsons disease). My question is this, why would it always happen just at 3:30 in the morning when I only take 25 mgs of Anafranil (and by the way Anafranil has helped immensely so I won't go off of it).? I took provigil and it about put me in the grave! I also took dextrostat and can't take that, so my MD put me on the Aderall. Let me ask this? Are any of you STILL sleepy even on these anti-narcoleptics? I'm on 30 now, and I can't stay awake on 30 mgs of aderall let alone 20 plus I get rebound real bad when these drugs hit their peak and drop out of the system. So that means I have rebound if I'm on 20 mgs. almost right away and have rebound symptoms btw 8 am and 12 noon because I won't take it all at once, I refuse to get addicted to this stuff. I don't see how anyway, because the side effects at 30 mgs on my tongue and face are bad enough to keep me from getting addicted. (And rebound is hell!) So after 6 pm when the 3 pm dose has worn off, I feel awful!!
I think this is a great site to come to for this!! I hope I haven't written so much that no one will read it but I really need to learn how to cope with narcolepsy as I did with ME-CFS. Thanks!!! Love & Huggles-Beauty

[Chuck Z.]

So I did and things got better but then this morning at 3:30 am the same thing happened but not near as bad (the first time I got up and looked in the mirror and I looked like I had MS or parkinsons disease). My question is this, why would it always happen just at 3:30 in the morning

Sounds like what i get a lot. When I get up "too fast" after a "crash", I can get the same problems. I feel like I cannot control anything, I'm a bit disoriented, and my arms, legs and even eyes just go wacky for a few minutes. I would almost guess that it is the opposite of a classic cat attack. Classically, the brain tells the body to pump chemicals to shut down the motor system. In the situation you describe, the brain is not properly shutting down that pump and the body is getting just enough shutdown signals to totally screw up coordination. So, to directly answer your question, you're body is simply not "ready" to wake up when your brain does . To cope, I just wait 10 to 20 mins before I try to get up.