Daughter with narcolepsy and cataplexy
She doesn’t want to take her meds anymore.
She says they alter her personality.
She recognises she needs them to learn ( she also has ADHD and Autism)
She is sad, anxious.
Please help
I my daughter is 34 she don't want to take her meds but the reason why she don't because they don't help her am try to find a doctor in Missouri that wants to help her they have her on 3 different meds one is 200mg Seroquel the other is100mg trazodone and the last is olanzapine20mg nothing to help her stay a wake she as where she does stuff like walks down the street at 4 in the morning no one wants anything to do with her because they think she crazy and i no she wants Alife like others but cant get a dr to help they want to send her to a Clark center that don't help and the weight gain they don't care about they want to try to say she does not have narcolepsy they say she schizophrenia but i have the sleep study test that say other way but all these in house treatment keeps taken her narcolepsy out so they wont treat it so please tell me what I can do to get the right help for my child it not far to her your her daughter
Hi
. That is a difficult situation. We have a member of our website community who faced similar challeges. He was diagnosed bipolar for decades and only recently learned the diagnosis was wrong. He has narcolepsy and is now being successfully treated for it. It took years of advocacy on his part to get that diagnosis. He saw specialist after specialist until he finally found one who listened. How does your daughter feel about the schizophrenia diagnosis? Does she also believe that her symptoms are actually caused by narcolepsy? At 34 years old, you can help her, but only if she wants to be helped. Has your daughter ever seen a neurologist? If not, that would be the best place to start. A neurologist who specializes in sleep disorders would be even better. If that neurologist doesn't listen and you are still both convinced she has narcolepsy, the only route I can think to take is to keep trying new specialists. It's exhausting and time-consuming, but it will be worth it in the end. I hope that helps and that she gets a diagnosis she can be confident in. Gentle hugs. - Lori (Team Member)
Hey, I'm so sorry to hear this! As someone who has struggled a lot with medication, I can understand where you're daughter is coming from somewhat. It's so so hard to find the right medication and then find the right balance of that medication AND on top of that be able to maintain that same effect over time. I'll be honest with you, I'm terrible when it comes to my medication and although a lot of people give me great advice...I confess that I rarely am able to take it on for some unknown reason.
In my experience, medication choices are up to every individual person and unfortunately, we can't make these decisions for anyone else.
I think the only thing you could maybe try and do as a parent is to be supportive and maybe show her other options that aren't medication that could help her deal with her symptoms (lifestyle changes, diets like keto, strict sleep routines like daytime naps, exercise...etc)
I know that this probably isn't anything you haven't heard before but hopefully it helps in some way. The best thing to remember is that life with narcolepsy is always hard but everyone has their own story and their own way of dealing with it.
She is extremely lucky to have you as a mum! I wish I had the same kind of support so trust me you're already doing an amazing job!! Take care hun! Iris xxx
Hi
. You are in such a difficult position. If you don't mind me asking, how old is your daughter? Have you and she talked with her doctors and/or a therapist? It's hard enough being a kid, but it is even more difficult when medical issues make you different from your peers. Has she stopped taking all of her medications or only the medication for narcolepsy/cataplexy? Keep in mind that we are not experts. I am responding simply as a mom to four kids who were all on anxiety or OCD medications at young ages. It was really scary for me when they each reached an age when they wanted to come off them. Three are still med-free years later and doing well (Maturity helped tremendously with developing coping skills. Medication bough them that time.). One has gotten a more accurate diagnosis on his own and better medication. Of course, none of them have narcolpesy. So it's a very different scenario. As hard as this is, how do you feel about letting her give it a try? If she is looking for control and it's safe, it might be helpful to let her go off her medications for a bit and decide for herself whether to go back on them or which meds she wants to take again. You could make therapy a condition if she is agreeable and if you have the time to take her. It can be really important for kids who have always been on medication to know what it is like to be without them. The experience might ensure that she takes charge of her medications herself as an adult and that she stays on them. Better to have her go off meds at home for a bit than to go off them when she is old enough to make those decisons entirely on her own. This is the time for mistakes, when she is young enough to recover from them.
I might be entirely off-base, so I hope others will chime in with their experiences and advice. I do know that your deserve all the hugs and support in the world. It is hard to see your own child contend with something like this. It can leave you feeling helpless and alone sometimes. But please know that you are never alone. We are here for you whenever you need us. Warmly, Lori (Team Member)
