10 replies to this topic

[drexel]

I'm a 19 year old and diagnosed for around 6 months now. I was initially prescribed to Provigil, but even at higher doses it wasn't doing as well as we wanted. I then switched to Ritalin, which I am on now. It works, but I don't like some of the associated side effects with it and want to try other meds that I've researched and are commonly prescribed to see if we can further better my situation (ex., adderall, dexedrine, etc.)

The issue is that he is way overly paranoid about giving me anything else because I am a college age student and a marijuana user. I have a history with drug abuse (red flag, yeah I know), but have been completely clean for years now. Drug abuse is not an issue between us, as he accepts my choice for marijuana and recognizes the benefits as far as my treatment is concerned. I've even agreed to take a random drug screen whenever he wants (he hasn't had me do one yet because I think he trusts me to that degree). I'm by no means using my medication how it's not intended to be used. I go by the prescribed doses and times.

He's very reluctant to talk about anything but ritalin, and doesn't want to change anything. I don't know what to do to make him believe that I merely want to try and get rid of some bothersome side effects. He doesn't wan to hear it.

I've got a lot going on, what not with full time classes majoring with chemistry, and I need to be in control and at my prime.

So, what would you say?

[musicmamma46]

I suggest that you get a second opinion from a different physician and also get a sleep test done just in case you have sleep apnea as well.

[sleepyAndie]

I got diagnosed 3 years ago when I was 18. I had to try Ritalin before they would give me Provigil and the doctors had to fight with my insurance compnay forever. I hate my neurologist because he's kind of like your doctor and you have to beg them to change your medication. I get so upset when I have to go see him, which lately has been every month! When I was on the Ritalin my face would break out in purple rashes and I never felt good. I went off of it on my own, which I guess made the neurologist mad because he put that I was noncompliant on my chart and threatened to take my license away.

I feel like my family doctor helps me better then him. I'm the only case of Narcolepsy at my doctors office, so he doesn't know much about it. He trys to help in anyway he can. The neurologist on the other hand makes you wait an hour or more in the waiting room and then only comes into the room for one or two minutes. I know this cause I timed him one time. :wink: It's very irritating, because most nights I have to get of work early or I'm late for class that night.

My suggestion is to talk to your doctor or get a second opinion. My doctor told me that since I was younger he wanted a second opinion and since we only have one neurologist in town. Bingo, I got the idiot that now makes my life worse, not better, worse! :x

I hope this helps. Sorry, I just needed to vent a little. :?

[gurlzylla]

It may benefit you to consider abstaining from all recreational drug use. Not only could the marijuana you are using affect your narcolepsy, it may potentally interefere with your medications. Plus, you run the risk of losing federal grant money for school if you have any drug convictions. I am not sure where you care to head with your major, but I am fairly certain that most chem. companies frown on recreational drug use. It's better to just quit now, before you have bigger problems to contend with.

[drexel]

I'm aware of the potential consequences of my mj usage, and I appreciate your concern, but that's not the issue at hand.

I've had the PSG and MSLT done, no apnea, just narc.

That's what I was thinking, in that I should probably just get a second opinion.

Thanks for the responses!

[drexel]

Also, I know exactly what you mean with the neurologist. My current doctor I've had four appointments with and not one appointment has taken less than an hour to be taken from the waiting room and an additional half hour to see the doctor, and I haven't had a time when he was in my room for more than a couple minutes. asshole.

aye, and I don't receive federal grant money, btw.

[gurlzylla]

In that case, self-medicate away. Did you go to a sleep medicine MD? I see a neurologist for migraines and he won't touch my narcolepsy dx... he feels it is better handled by the sleep doc!

[sshuff723]

Just wanted to add to the discussion, about the meds, I've recently moved from Provigil (that helped for a bit, but evened out and then just didn't work any more) to Adderall XR. Though I've noted some improvement, the side effects are pretty harsh, especially if you miss a dose (my husband still doesn't understand N and thinks he's being sweet by letting me sleep in). Your doc. may be worried about the risks for addiction since adderall has addictive effects. Also, back to the side effects, after missing a dose I am the meanest (*) around, the sun light scorches my eyes, I'm wobbly, freezing, and I'm just in a BAD mood. And I've only been on it for 2 weeks. The first missed dose was after only 2 days of treatment, so I was a little worried about the long term effects. Basically, do all the research you can about the medications, especially the S.E.'s. I'd rather fall asleep all day than bite someone's head off. Good luck!!

[greatbig47]

Self medicate...ARGH that term makes me so angry sometimes! It's only "self medication" because a major pharmacuedical hasn't placed a 30 second spot on television telling you to ask your doctor if it's "right for you".

If it works, congrats on finding something that works. I know I've been handed medication from people with MD at the end of their name that have certainly made the quality of my life take a hit!

I'm not going to say mary j is the right choice, but I sure as heck wouldn't say that about ANY of the "perscribed" medications either. Every body is different.

As far s finding what will give you peek performance, for that i know EXACTLY what will work... 1000 mgs of confidence! You can do it! Believe it and make it happen!!!

[merrymom1013]

I don't have narcolepsy, so I don't truly "get it." But as a mom and a mental health professional with experience with substance abuse, I'd like to comment. I do have a teen with narcolepsy. Her sleep doctor makes it very clear that the medications he prescribes for have abuse potential. If he has any reason to question that the drugs are not going to be taken appropriately or that she is using other drugs, he will not prescribe the medication. That's the deal. My daughter has a choice- treating her narcolepsy or having more freedom to experiment and party. There is an added risk/consequence of legal or illegal drug use for my daughter and PWN than for her brother or friends who doesn't have narcolepsy. Maybe not fair, but there it is. Most doctors are cautious in prescribing stimulants and other drugs to teens and young adults; most will be concerned about other drug use and/or abuse. If you need medication to function with narcolepsy, then you need to recognize that means little or no alcohol, no marijuana. We all have the right to make our own choices. Your doctors also have the right & obligation to prescribe controlled medications in what they consider a safe way- to protect your health and safety and to protect their medical license & themselves. If being able to use marijuana is more important than treating a health problem, that's a sign of a problem. With cigarettes, alcohol, pot or any addictive substance, the question to consider is: "Is this negatively impacting any part of my life? What is it interfering with?"

[Julie A]

I have had N symptoms as long as I can remember. I used Marijuana daily (ok several times daily from 12-17) as a teen and as strange as this sounds, I felt that the M worsened my N. In fact it would bring on SEVERE CAT attacks. And no I did not OD on M. They were CAT attacks and they were frequent. My boyfriend would sit next to me and convince evryone around me not to call 911 and downplay the whole thing so as to make me feel less embarrassed when I could move and get up off the floor. I would just get up and say "It happens ALL the time."
Although I do not know the effect of M on your symptoms, I can say that quitting M at 17 was a great decision for me in relation to my N.
As for your doc, I agree, get a second opinion!
Good Luck!