3 replies to this topic

[allisonshealy]

Hi. I am newly dx with narcolepsy, since June 2007, and first I tried Provigil. It did nothing for me but make me sick to my stomach and unable to focus and concentrate. My sleepiness did not go away. Now I am taking Ritalin LA 20 mg's in the morning, and 20mg Ritalin short acting in the early afternoon. I find myself so nervous and jittery that I feel like I am losing control of myself at work and at home. I have decreased the Ritalin on my own lately, but it still doesn't work for me. On a scale of 1 to 10, with 1 being not anxious at all, and 10 being extremely anxious, I am a 10 even with a small dose of Ritalin. On the other hand, I am still sleepy regardless of how high or low the dose. It's like my body is wired to the max, but my eyes and brain tell me to sleep. Help! I cannot live like this! I am not getting relief from my EDS, and now feel panicky and anxious all the time. Is there a combination of meds that can fix this problem? I'm almost afraid to ask my doctor. I'm scared that it is a hopeless situation. :cry:

[greatbig47]

Hey Allison!

So sorry no one answered your post! What up with that????

First....your not alone. The "Med Game" can be the worse!!! But you have to have faith that you will find the right combo. I'd be willing to bet at least half of the people on this board are all still in search for the perfect mix of meds. It has to be such a taylored thing!

Second...Remember your goals, and imagine them happening. They will. Try with EVERY goal. Concentrate on getting the perfect mix of meds...Spend some time (literally) picturing what a day like that would feel like...What would your body feel like? What would your mind feel like? Imagine it being that way.

Third...Surround yourself with understanding friends and fam. If that don't understand your condition, it's okay to spend time with people who do. If you have no one that understands it...FIND SOMEONE!!!! It's important to be around people who are clued in, understanding and good to be around.

Fourth...Allison is my sister's name...what a cool name! (okay, that probably didn't need to be numbered).

If you ever need someone to chat with, I'll be around...K!?!?!

-Stu

[ElliottS]

Hi Allison, your experience sounds very familiar to mine - I have been on Ritalin for nearly 13yrs now (was a one of the first to test in UK for N) when I first started taking it at about 17 yrs old I felt terrible. Ritalin is amphetamine based which explains the anxiety panic feelings. I felt like I was going mad due to crazy rushed thought procesess etc..yet still feeling the need to sleep! Also I feel that the best way to deal with taking med's & the fact that you are now having to adapt your life to the news of this condition (so remember lot's on yr plate) you need to unfortunately give it time like Stu said. It is a constant trial & error thing to get combo right as everyone is different. In my experience over the years I have had many combo's due to tolerence levels of the drugs & changes in symptoms. Currently I have a combo of both Provigil & ritalin - yes provigil makes you feel sicky and rough under the gills (it did me ) but over time this will calm down as your body get's use to it - one thing with provigil it makes you less anxious but again still have the need to sleep & battle to carry out even the simplist tasks.... again different med's work for different people. I think that you need to speak with your dr (don't be worried to approach doc it is their job to help you) to monitor / adjust med's as you need - I can sit for hours to talk you through these horrid stages as I can understand where you are coming from but be assured that you will pull through -so please keep in touch and use and abuse me as much as possible as this can be a time when you may feel you're alone- Stu's advise also is spot on - stick with it it is hard, scary but if any thing make use of this site friends & family. Keep your chin up !! :wink: