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.
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)
