Hi everyone. My name is Josh i am new to this place and having a hard time.
I was diagnosed about in june last year with narcolepsy plus cataplexy. i am taking riddlin
but not sure if its really worth it as i am still every symptomatic and dropping weight rapidily.
i am so tired all the time i just don't know how to cope and the only advice i get from my doc is to take more drugs.
I need to heard it gets better cause right now i feel hopeless.
Have you seen your family phy. as well? Weight loss could be from other health issues.
I found that Ritalin was really like only a booster for me. Sounds like you should be taking one of the few meds for Narcolepsy itself. Follow up with your dr. regarding your condition. At times I have needed to write my questions or concerns down and take by the dr's. office in order to get answer or appt. with my dr. (done nicely).
In my thoughts and prayers.
You should definitely be taking something else because ritilan is only a booster. You should be taking some that is long lasting for the whole day and also some medicine for your cataplexy. I know that its a lot if medicine but its the reality of Narcolepsy.
At least your not were I am. My doctors are at the point were there is nothing else they can do for me.
Treating narcolepsy is a long process, I've doing it for years.
How is your appetite? Ritalin is more or less speed. Are you taking anything for your cataplexy? Most meds I’ve taken for my cataplexy are antidepressants which often lead to weight gain. When I first started out my neurologist gave me Cylert which turned me psycho. My neurologist didn’t want to change my meds so I went to a psychiatrist. The psychiatrist in turn put me on Ritalin instead and I started feeling much better. Years later I started gaining weight rapidly after being put on a particular antidepressant. I was gaining one to two pounds a month over a two year period. It was my neurologist who then stepped up and changed my antidepressants when my psychiatrist wouldnt. when one doctor won’t listen you might want to go to another and perhaps in a different field of study as well.
I agree with a lot of what the previous commenters had to say. I don’t think anyone here is going to tell you it will ever be easy, but it does get easier and there are good days. Most people with Narcolepsy (with or without cataplexy) need more than one medication to manage symptoms. There’s a lot of variation in how many and which ones. At the moment I take six different prescriptions, including one for my blood pressure. There are times when I question taking so many. A big part of me hopes that being on Xyrem for awhile will allow me to cut back on other prescriptions because I’m getting the sleep I need. I find it’s an ongoing battle to find some sort of balance and I suspect it always will be. But I’m in a place now between okay and good. It’s a huge relief!
In my journey I have found that having the support of not only family or friends, but also professionals who you feel comfortable working with is hugely helpful. I know not all of us have the same resources and access, but, if you have the option, look for a sleep specialist, a primary care physician, and at least one mental health care provider that you feel like you can trust and really talk to. It’s okay to try different doctors, if you have access to them, to find one you feel good about. This condition is really hard for all of us. It can really help to have a counselor to support you through the hard stuff. Of course, we are here for you, too!
Unfortunately if u have good insurance…you will have to try multiple useless meds until you can get the right one. With the insurance industry and it’s games they won’t pay for the right meds right away. Everyone is different. I finally found providing which is twice daily and nuvigil which is once daily. Nuvigil Has been great. I still had to quit my career but I can’t now at least watch a half hour tv shown wi r h dr