Cannot Focus
I cannot focus. I'm exhausted and disgusted with treatment. I've had four sleep studies and the doctor told me I have narcolepsy but he can only prove idiopathic hypersomnia. I've had cataplexy for 20 years. So, it's obvious I have narcolepsy type one.
I finally went and got on Vyvanse in desperation and it worked great for a couple of months. Now, not so much. If it works at all, it's gone by around 1:30 pm.
I finally see the sleep specialist tomorrow. Is there anything I should say to him or ask him?
I keep having narcolepsy related vagal surges and since I have bradycardia, it makes my heart take a pause. It's got me freaked out in addition to my complete exhaustion & dangerous driving episodes. My brother died from wrecking his car because of narcolepsy. My sister and her son also have narcolepsy. So, I'm sure I have it. My doctor says I have it, too. Getting proper care seems almost impossible, though.
Any advice is appreciated.
Hello, just wanted to mention I use to take zyway but now take lumryz. Both are super good with sleep and helps with sleep paralysis and excessive day time sleepiness. May try talking to your dr about that?
Hi
. It shouldn't have to be this hard to get a diagnosis given all your symptoms. I really hope this doctor understands narcolepsy and diagnoses you accurately. Does this specialist have a neurology background or a pulmonary background? That can make a difference. Doctors with a pulmonary background are often less knowledgeable about narcolepsy.
Though I'm sure you are very familiar with the diagnostic criteria, I thought I would share this article as a refresher: https://narcolepsy.sleep-disorders.net/Diagnosis. The more you know, the better you'll be able to advocate for yourself.
Here is another article about medical gaslighting that might at least help you feel less alone: https://narcolepsy.sleep-disorders.net/living/medical-gaslighting .
I hope others chime in with advice. The best advice I can give you is to arrive fully prepared with your medical records and a list of questions and to maybe bring someone with you. In the midst of it all, it can be hard to focus sometimes. A friend or family member might help you stay on track.
Please let us know how it goes. I'll be thinking of you. - Lori (Team Member)
