8 replies to this topic

[georgebailey]

I was finally daignosed at age 51 when my symptoms were to the point of falling asleep mid-conversation and driving was just scary. I take Ritalin that helps, but have tried Provigil and it is very inconsistant recently I began slurring my speech and fell deeply asleep an hour after my ten hours, with provigil.
I also am awake, apparently, but have no recall of what I've said or done. I tried ritalin long acting did not seem to help and ritalin takes a bit to kick in and sometimes I'm asleep before it works. I have summers off and have been sleeping 10 or more hours a night and then napping while on 400 mg plus 3-4 10mg ritalin. I get dizzy a lot and can't sit down much or I will fall asleep. I take meds for high blood pressure, but it's been going very low. I just wondered about the slurring speech and the no recall. I do not drink and am normal weight. Caffeine has no effect on me. Is there something else besides provigil and ritalin. Has anyone else experienced worsening in symptoms . Thanks

[Kimberly]

Hi George,

My symptoms always worsen with stress.

You said you are on Provigil and Ritalin. They are stimulants that treat EDS (Excessive Daytime Sleepiness).

Treating Excessive Daytime Sleepiness with stimulants is only half of the equation for Narcolepsy. We also have fragmented nighttime sleep, so the other half of the equation is improving nighttime sleep.

Are you on anything to help improve your sleep at night? Xyrem is one medication that can help with this.

Hs your physician tested you for any other neurological conditions? My speech slurs and I have forgetful episodes when I am fighting to stay awake and shouldn't be, but what worries me is the dizziness and your blood pressure going low. With all that Ritalin in your system, it shouldn't be low. You should have that checked out.

Kimberly

[ikon0304]

I have somewhat the same problem. Too much stress or excitement will set me into sleeping for hours during the day and then sleeping all nite ( going to bed at 7:30 and waking up at 7 am) If I do paperwork(like paying bills organizing lawyer documents, reading a book, watching tv) i fall asleep easily or get very tired and have an episode of cataplexy. I have been told that i have hallucinated and i dont remember any of it. See people that arent there say things i dont remember etc...my speech starts to slur and thats when i know to lay down...usually followed by cataplexy episode. I have given myself two concussions from this. the cataplexy has gotten so bad that i no longer can tell when its going to hit. before i knew because my right side would start getting very heavy and my speach would slur. i have spent hours being asleep and doing household chores without ever knowing it. im on 75 mgs of ritalin, 200mgs of lamictal, 30 mgs of lexapro. not only do i have narcolepsy, but i am suffering with post traumatic stress and bi-polar. i also have panic attacks and take klonopin when needed. .5 mgs that i cut into quarters because i hate to take it. I am no longer driving because when i do i cant stay on the road and i fall asleep. thats my two cents..

[nanasus]

Funnily enough, my slurred speech decreased when I stopped taking Modafinil (Provigil) after reading an alert by the drug company that was issued by Health Canada re potential anaphalactic shock when taking med. My tongue and the inside of my mouth had been swollen for years. I had blamed dental work and anything else I could think of, except for the pills. My hands and feet are no longer swollen and my eyesight has vastly improved. I was on Ritalin and Modafinil for the EDS along with Prozac for the cataplexy. The only med I take now is Zopiclone, which affords me a few hours of "quality"sleep.
I am not advocating that everyone discontinue their meds but I do hope everyone takes note of the potential effects of their meds.
Worse, for me than the swelling was the increased sensitivity to smells. I would end up wheezing and having to use an inhaler because of perfumes and colognes, even scented deodorants made breathing difficult. I haven't used an inhaler, haven't had a cold nor do I feel a need to shower twice a day since coming of the pills. I am not working at this time and will be seeing my neurologist in 2 weeks time to review but when I first heard of the warning re the Modafinil, the neurologist told me that there were no other meds that he could/would give me. Of course, off the meds, I am more tired and not always as sharp as I would like to be and I do experience more CAT attacks. However, I no longer spend 3/4 of my day trying to figure out how to keep my tongue inside my mouth.
Read all the information available re the drugs you are taking.

[Damian]

hi all,
Were not offered or told of dexidrine after modafinil, I got similer effects of it, ended up on dexidrine only problem is, your will build a tolereance to it, and because of my Cataplexy I am also on Xyrem.
Even though I am on different meds with these two my condition seemed to improve. But then every thing came back and this is still going on at moment.
Different meds work then don't.
back to square 1 again.

[Prfctlilangel30]

Hey everyone-
I have tried taking ritalin, it made me really nauseas everytime I took it. I can't take Provigil because it interacts with my birth control... so, if I take Provigil the birth control doesn't work. Currently, the medication/instructions prescribed to me is adderall 10mg. 1 pill every 4-6 hours up to 3 times a day. It worked at first for a short amount of time but for the last 2-3 months all my symptoms are getting worse... I've had to double, sometimes triple my dosage 2-3 times a day...and to add to it all, my doctor isn't too much help!!! The first time I saw her, she tried advocating for a different allergy medicine she wanted me to switch to. I just saw her today, for the second time, and she was advocating for Chantix (a pill to help quit smoking... which... by the way, she said I would have to take behavioral therapy along with the pills because people have comitted suicide while taking Chantix!!)..I guess she forgot I was there to see her about my sleeping disorder?!?!?!?! haha.
I did tell her that she should probably increase my dosage of adderall but she said wait another month..but then said she would see me in 3 months!!
Anyways, is there any other medication I could suggest to her? Something else that would work for me? Or should I just stick with adderall but contact my doctor and tell her to increase my adderall dosage, since that medication was working for me in the beginning? I dont know..
Thanks for listening!

[Henry G]

Hey everyone-
I have tried taking ritalin, it made me really nauseas everytime I took it.

I get nausea from Ritalin but only if I take 2 pills or more (ie 2x10mg)

But if I break up into 1/2 pills spread out during the day - I get no nausea.

Also when I do get nausea - when I intentionally take 2 pills or more because I really wanna wake up no matter what; I've found out that drinking a bit of ginger-powder (like 1/2 teaspoon) mixed with water makes the nausea go away.

I don't know who taught me that but it works and on verifying it is actually a proven remedy - so give it a try!

http://en.wikipedia....i/Ginger#Nausea

[Marcianna]

I was finally daignosed at age 51 when my symptoms were to the point of falling asleep mid-conversation and driving was just scary. I take Ritalin that helps, but have tried Provigil and it is very inconsistant recently I began slurring my speech and fell deeply asleep an hour after my ten hours, with provigil.
I also am awake, apparently, but have no recall of what I've said or done. I tried ritalin long acting did not seem to help and ritalin takes a bit to kick in and sometimes I'm asleep before it works. I have summers off and have been sleeping 10 or more hours a night and then napping while on 400 mg plus 3-4 10mg ritalin. I get dizzy a lot and can't sit down much or I will fall asleep. I take meds for high blood pressure, but it's been going very low. I just wondered about the slurring speech and the no recall. I do not drink and am normal weight. Caffeine has no effect on me. Is there something else besides provigil and ritalin. Has anyone else experienced worsening in symptoms . Thanks

I was actually told when I was first diagnosed it would get worse as I get older and that seems to be true so far. If I look at my life in 5 year increments, it seems really subtle, but if I look at myself when I was 15 compared to now 31.... the change is very very drastic.
I actually noticed this summer that things are starting to go on a downward slide again, I'm going to a new specialist to see if I can get some new answers!

[Prfctlilangel30]

I get nausea from Ritalin but only if I take 2 pills or more (ie 2x10mg)

But if I break up into 1/2 pills spread out during the day - I get no nausea.

Also when I do get nausea - when I intentionally take 2 pills or more because I really wanna wake up no matter what; I've found out that drinking a bit of ginger-powder (like 1/2 teaspoon) mixed with water makes the nausea go away.

I don't know who taught me that but it works and on verifying it is actually a proven remedy - so give it a try!

http://en.wikipedia....i/Ginger#Nausea

well if i do go back to that medication i might try it... thanks for the info!!!