switching providers and not having medication for over 30 days
I am switching providers for the treatment of my Narcolepsy and my old provider didn't give me any refills on meds so I haven't had them in over 30 days and I have noticed I have become irritable and cranky. Is this normal and will I feel like myself again when I start back on meds?
My doctor left practice and wouldnt reorder Ritalin. taking xywav and after taking modafinil for 20 years doesnt work anymore. Took Wakix for 1 year in 2024 with good effect but insurance company denied coverage at end of year. would not cover Wakix or sunosi if on xywav because will only pay for 1 expensive medication. they said I had to stop xywav if I wanted to take either daytime med. Very difficult to find Dr. that treats narcolepsy. I am going to new one 10/21 that said May Treat. the other drs in practice couldn't write the right RX. If new Dr doesn't workout will have to drive 2 1/2 hrs to my previous drs new practice. Haven't had my daytime medication for 1 month and can hardly focus, exhausted and anxiety, and I have to take care of my 82 year old husband. Its not right.
How frustrating. My heart goes out to you. I hope this new doctor works out. Is the doctor a neurologist? Please keep us update, if you don't mind. I will be thinking of you and sending lots of positive vibes your way. Gentle hugs. - Lori (Team Member)
I've considered changing providers for a long time, mostly becuz I've gone to the same one since Day One (15 yrs now) & feel it's time for new faces & maybe even new thoughts/ideas abt other meds & better daily management of my chronic condition; my biggest concern, however, the reason for my hesitation, is because many years ago, the laws changed in my state re prescribing of my controlled med; in fact, even though I'd been taking it for years, when the law changed, my Doc had to "prove" I had Narcolepsy, in order to continue prescribing to me; for this, I had the daytime, multiple sleep studies throughout the day (but I can't recall the term of that daytime sleep study at this moment☹️); but luckily, I did "qualify" & still continue taking that med; but my fear in changing providers is, will I have to have the same daytime sleep study again? I'm assuming/hoping that, since I've been on this med for so long now, my script will simply transfer/continue with my new provider? Is this a-l-w-a-y-s the case? Thanks for reading my too lengthy question!😃🇺🇸
Hi
. Most insurance companies allow you to get a "second opinion," which is different from switching doctors. Might that be a less risky option for you? You could find out whether another doctor would do anything differently in terms of your care and what logistics are involved in switching doctors. Is your current treatment effective? Wishing you the best. - Lori (Team Member) I'm sorry you are having to deal with the anxiety that comes along with possibly losing narcolepsy medication access! I have moved out of state since my narcolepsy diagnosis and changed narcolepsy providers multiple times. In doing so, I was able to bring my old sleep study each time to prove that I had narcolepsy. False positives in tests for narcolepsy are RARE, so having a second sleep study done will likely not be necessary. That being said, every care provider is different and it is possible that your provider might require a new test proving narcolepsy. However, if they do this might be a sign that they aren't very knowledgeable about narcolepsy in my personal opinion, since as I mentioned before, false-positive test results for narcolepsy are rare. I'd discuss these issues with your primary care provider, since they are real medical professionals and may be able to provide some accurate guidance for you! If you're interested in reading an article on switching providers based on care quality, you can find it here: https://narcolepsy.sleep-disorders.net/living/doctor-poor-care Thanks for writing in! Hope some of this is helpful. Please let us know if you have any further questions. Warmest regards, Tatiana (narcolepsy.sleep-disorders.net Team member)
I was on Sunosi and I have asked and previous provider states I have to see him for refills but I can't due to me not being able to drive ( I fall asleep in a moving vehicle). so I am waiting to see a new provider that is closer to my home. Hi
. How frustrating. That is the rule in some states, but it can be really hard on people like you. I hope others will share their experiences here and that you begin to feel like yourself again soon. Happy holidays! - Lori (Team Member) I'm so sorry to hear that you have been unable to get access to your medication. People without narcolepsy don't often understand the severity of symptoms that we experience due to not having access to our medication, which is absolutely frustrating. I hope you are able to get into your new doctor soon and continue getting refills for your Sunosi! Have you considered going to Urgent Care to try to petition for refills on your medication? This is something that my medical provider suggested to me when I was switching providers and wasn't sure if I'd be able to keep getting my medication refilled. (However, it was about my SNRI medication which is different from Sunosi, so I'm not sure if it will work for you.) Best of luck to you! When is your appointment with your new provider so I can check in on you? Warmly, Tatiana (narcolepsy.sleep-disorders.net Team Member)
Hi
. I hope others in the community can give input about the side effects of coming off your medications. Can you tell us what you were taking? Are you required to see your old doctor in person to get refills or can you simply ask for refills over the phone or online? until you get started with your new doctor, your old doctor should still be willing to refill precriptions. I hope the new doctor turns out to be a solid partner in your care. Wishing you the best. - Lori (Team Member)
