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Experience With Meds


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#1 beefey

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Posted 01 October 2012 - 08:09 PM

Hello All!

I am new to the forum. I was diagnosed with Narcolepsy around six months ago. I have felt tired for many years. Like most people jumped through all the misdiagnosis of depression, not enough sleep, or just being a wuss. When I finally did nail it down I was excited because I could get to making it better.

I started with Xyrem which seemed to make me almost absent minded and not as sharp as I once was.

I then moved onto Ritalin 10mg twice a day. The crashes after that second dose wore off are brutal. The doc now prescribed me extended release which gives me headaches instead of the jittery crash.

After all this nothing has really been done for my EDS. It's still pretty rough. Also all these meds seem to dull my senses and make me "float". I even have a hard time formulating a proper thought now sometimes. I feel my cognative ability going out the window. I always was tired but I've always felt sharper minded. I made it through engineering school sleeping but smart. My question is has anyone ever felt their cognitive ability tank when starting on these meds? I just really hope it didn't jar my brain chemistry for the long haul...

I look forward to hearing from you guys!

Thank you,
Beefey

#2 Hank

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Posted 01 October 2012 - 09:18 PM

Hello All!

I am new to the forum. I was diagnosed with Narcolepsy around six months ago. I have felt tired for many years. Like most people jumped through all the misdiagnosis of depression, not enough sleep, or just being a wuss. When I finally did nail it down I was excited because I could get to making it better.

I started with Xyrem which seemed to make me almost absent minded and not as sharp as I once was.

I then moved onto Ritalin 10mg twice a day. The crashes after that second dose wore off are brutal. The doc now prescribed me extended release which gives me headaches instead of the jittery crash.

After all this nothing has really been done for my EDS. It's still pretty rough. Also all these meds seem to dull my senses and make me "float". I even have a hard time formulating a proper thought now sometimes. I feel my cognative ability going out the window. I always was tired but I've always felt sharper minded. I made it through engineering school sleeping but smart. My question is has anyone ever felt their cognitive ability tank when starting on these meds? I just really hope it didn't jar my brain chemistry for the long haul...

I look forward to hearing from you guys!

Thank you,
Beefey


Yes, being sharp carried me through a lot of bumps in the road. I have felt dull from so many changes, but the sharpness is returning. You're not fried, just a little crispy around the edges.

I started on Ritalin and had a similar experience. It felt like a gallon of espresso in a small pill. There are more refined versions of Ritalin like Focalin or Concerta. I moved to Adderall XR and it worked for me. Everyone seems to respond differently to stimulants/doses and you may need to try a few on for size.

Are you still on Xyrem- not sure from your post. I have begun to feel better since being on the full 9g/night.

Welcome to the club

#3 beefey

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Posted 01 October 2012 - 09:21 PM

Yes, being sharp carried me through a lot of bumps in the road. I have felt dull from so many changes, but the sharpness is returning. You're not fried, just a little crispy around the edges.

I started on Ritalin and had a similar experience. It felt like a gallon of espresso in a small pill. There are more refined versions of Ritalin like Focalin or Concerta. I moved to Adderall XR and it worked for me. Everyone seems to respond differently to stimulants/doses and you may need to try a few on for size.

Are you still on Xyrem- not sure from your post. I have begun to feel better since being on the full 9g/night.

Welcome to the club


I shook the Xyrem because of the floaty dull feeling. I actually started dazing out randomly which I CANNOT do for my job. I did 4.5g 2x per night.

#4 Megssosleepy

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Posted 02 October 2012 - 09:37 AM

I have to agree... Ive always been tired but could focus study hard and remember things long enough to take an exam. I would remember to pay bills, and give my dog his meds, ect ect...

Anyhow I am officially a space cadet! I will be working hard with my meds till I find my brain again!! I am hoping its "just fried around the edges" lol

#5 beefey

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Posted 03 October 2012 - 10:56 PM

I have been "clean" for 2 days and I feel my cognitive reasoning and general attentiveness return yet I'm more tired than ever. I sure wish a drug could just wake me up without bringing my brain into a fog. For me, I'd rather be asleep the rest of my life while being with it than being a mental potato.

-Beefey

#6 DeathRabbit

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Posted 03 October 2012 - 11:56 PM

I have been "clean" for 2 days and I feel my cognitive reasoning and general attentiveness return yet I'm more tired than ever. I sure wish a drug could just wake me up without bringing my brain into a fog. For me, I'd rather be asleep the rest of my life while being with it than being a mental potato.

-Beefey


That's weird I thought Xyrem helped improve fogginess. I feel like an idiot child on a regular basis as it is! Thats my main symptom Im looking to eliminate. Sure hope it doesnt make me foggier too.

#7 Megssosleepy

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Posted 04 October 2012 - 07:48 AM

I find it odd that the drugs that people take recreationaly to help them be "smarter" dumb us down so much. I also have wondered why they barley keep us awake but a college student can stay up all night to cram take the exam and still not be able to fall asleep. Why can't it keep us awake, focusing, and active? Instead we are just living with our eyes open in a deep freaken fog!

I have decided to try the natural route, I got this interesting book about natural healing... it actually had a section on Narcolepsy. I was disappointed when I read... "The most dominate trait is falling asleep with no notice can be in the middle of a conversation" (not exactly what it said but you get the gist) I may try to figure out who to write to to fix that statement. No wonder no one thinks they have Narc. I know when I am going to pass out... and I fight very hard not to. I know in extreme cases or if I didnt have a set sleep schedule and drugs I may not be able to fight an attack but come on... We don't sip on soup and then fall in. Just lay our head next to the bowl lol!

Anyhow I plan on spending a small fortune on their recommendation and tweaking my diet a little (after I convince my sleep doc to give me and appetite stimulant) I wont be stopping the xyrem but I hope to get off the stimulants at least!

After a bit more research I will try to create a post about what I am doing and how I am feeling. I feel much better today having made a plan to become healthy again. I cannot keep going on the way that I have... weak, shaky, dull, and dumb! Its time to take control of our own bodies... The docs don't always know whats best! There may be another way... Im skeptical but having a plan an agenda will make it easier to feel some control over this nasty disease that no one understands!

First things first getting my appetite back, I think that's why my EDS has been unbearable! Prolly being zapped every night when I take Xyrem and haven't been able to eat the right amount/ right foods to feel good. I think if I didnt have N and ate the way I do, and get the amount of exercise I get I would be a pretty sluggish sleep person. So having N and not getting/doing what I need is why my symptoms have become soooooooooooooo much worse after starting treatment.

So I think we may have more options to add to Xyrem (aka deep sleep) I hope one day there will be something better then Xyrem something with less negative effects, but until then its the best we got.

Sorry if this was off topic :)

#8 DeathRabbit

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Posted 04 October 2012 - 10:34 AM

I find it odd that the drugs that people take recreationaly to help them be "smarter" dumb us down so much. I also have wondered why they barley keep us awake but a college student can stay up all night to cram take the exam and still not be able to fall asleep. Why can't it keep us awake, focusing, and active? Instead we are just living with our eyes open in a deep freaken fog!

I have decided to try the natural route, I got this interesting book about natural healing... it actually had a section on Narcolepsy. I was disappointed when I read... "The most dominate trait is falling asleep with no notice can be in the middle of a conversation" (not exactly what it said but you get the gist) I may try to figure out who to write to to fix that statement. No wonder no one thinks they have Narc. I know when I am going to pass out... and I fight very hard not to. I know in extreme cases or if I didnt have a set sleep schedule and drugs I may not be able to fight an attack but come on... We don't sip on soup and then fall in. Just lay our head next to the bowl lol!

Anyhow I plan on spending a small fortune on their recommendation and tweaking my diet a little (after I convince my sleep doc to give me and appetite stimulant) I wont be stopping the xyrem but I hope to get off the stimulants at least!

After a bit more research I will try to create a post about what I am doing and how I am feeling. I feel much better today having made a plan to become healthy again. I cannot keep going on the way that I have... weak, shaky, dull, and dumb! Its time to take control of our own bodies... The docs don't always know whats best! There may be another way... Im skeptical but having a plan an agenda will make it easier to feel some control over this nasty disease that no one understands!

First things first getting my appetite back, I think that's why my EDS has been unbearable! Prolly being zapped every night when I take Xyrem and haven't been able to eat the right amount/ right foods to feel good. I think if I didnt have N and ate the way I do, and get the amount of exercise I get I would be a pretty sluggish sleep person. So having N and not getting/doing what I need is why my symptoms have become soooooooooooooo much worse after starting treatment.

So I think we may have more options to add to Xyrem (aka deep sleep) I hope one day there will be something better then Xyrem something with less negative effects, but until then its the best we got.

Sorry if this was off topic :)


Yeah, the whole falling asleep at random times is such a misconception. I get sleep attacks, but I can fight them. I have microsleeps on bad days, but I don't ever nap against agaisnt my will. I think since narcoleptics are sleepy and have cataplexies, that has lead to people mistaking one for the other and thinking we Narcoleptics randomly fall asleep for long intervals

#9 beefey

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Posted 04 October 2012 - 07:40 PM

Yeah, the whole falling asleep at random times is such a misconception. I get sleep attacks, but I can fight them. I have microsleeps on bad days, but I don't ever nap against agaisnt my will. I think since narcoleptics are sleepy and have cataplexies, that has lead to people mistaking one for the other and thinking we Narcoleptics randomly fall asleep for long intervals


Yes, I have never fell asleep behind the wheel or even fell asleep uncontrollably. I likely need more sleep than a "normal" person but what differentiates me is I'm ALWAYS tired. I ALWAYS have the cloud. It just drags a guy down you know?

#10 Megssosleepy

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Posted 05 October 2012 - 09:50 AM

Yes, I have never fell asleep behind the wheel or even fell asleep uncontrollably. I likely need more sleep than a "normal" person but what differentiates me is I'm ALWAYS tired. I ALWAYS have the cloud. It just drags a guy down you know?


It really is a drag... I have however fallen asleep behind the wheel or smack myself so hard just to keep from dozing... But I know when its coming I know how it feels when if I close my eyes I would fall right to sleep! And always being tired I gotta say I am getting really tired of it. Why not for once can I just lift the fog... not feel like I could take a nap! I just want a day where I am awake... I am never freaken awake!!

#11 tdmom

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Posted 05 October 2012 - 04:41 PM

How long did you try the Xyrem for? What dose did you start at and how long did it take you to get to 4.5. You could have quite a large sleep debt and it could take a long time, several months until you feel better on it. Many people give up before the results are in, which may the case here.

Hello All!

I am new to the forum. I was diagnosed with Narcolepsy around six months ago. I have felt tired for many years. Like most people jumped through all the misdiagnosis of depression, not enough sleep, or just being a wuss. When I finally did nail it down I was excited because I could get to making it better.

I started with Xyrem which seemed to make me almost absent minded and not as sharp as I once was.

I then moved onto Ritalin 10mg twice a day. The crashes after that second dose wore off are brutal. The doc now prescribed me extended release which gives me headaches instead of the jittery crash.

After all this nothing has really been done for my EDS. It's still pretty rough. Also all these meds seem to dull my senses and make me "float". I even have a hard time formulating a proper thought now sometimes. I feel my cognative ability going out the window. I always was tired but I've always felt sharper minded. I made it through engineering school sleeping but smart. My question is has anyone ever felt their cognitive ability tank when starting on these meds? I just really hope it didn't jar my brain chemistry for the long haul...

I look forward to hearing from you guys!

Thank you,
Beefey



#12 SleepyDays

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Posted 05 October 2012 - 10:21 PM

One thing I've been trying is something I read on an ADD website. If you split your dose of Concerta to 60% in the morning and 40% four hours later it extends your medication by four hours while also keeping the ascending dosage profile.
So, for example....if your normal dose of Concerta is 90mg per day (a 54mg pill and a 36mg pill) Take the 54 mg pill in the morning and take the 36mg pill four hours later. (I take it 8am and noon)
I noticed that when I did this I was able to maintain my mental clarity throughout the day. And the evenings were much better.
One thing though....I find that the morning dose is too low....so I need to do some more experimenting.

Anyone else out there trying two doses of Concerta a day?