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
. How did that sleep study appointment go? Are you happy with this new doctor? Thinking of you. - Lori (Team Member) Hey Lori, thanks for thinking of me! I'm doing some better. There are definitely good days and bad days. The doctor said even though I have cataplexy, the sleep study only reflected idiopathic hypersomnia. He said the treatment is the same either way and increased my Vyvanse, then subsequently added Adderall to help me get through the day.
The medication has corrected my bradycardia and another doctor started me on high dose, 6,000 mg of vitamin C for low PH. So, I haven't had any more heart pauses at all. It's been a huge relief!What great news! I'm glad you are finally on treatment that is effective for you. There are more, newer treatments, in the pipeline as well. Are you aware that we have a community specifically for people with idiopathic hypersomnia? You are always welcome in this community. We have many members who have an IH diagnosis and, as you noted, the treatments are similar, but here is a link to the other community in case you are interested in that support as well: https://idiopathic-hypersomnia.net/. I moderate there also. Did your doctor have any explanation for the cataplexy in absense of a narcolepsy diagnosis? - Lori (Team Member)
Here is what I would tell this doctor: Is Cataplexy associated with idiopathic hypersomnia ? The answer to that, is NO, and I have had cataplexy for 20 years.
Cataplexy, is a HALLMARK SYMPTOM of Narcolepsy Type 1.
a hallmark symptom is a distinctive, characteristic symptom that is highly indicative of a specific disease or condition. The presence of cataplexy, eliminates Narcolepsy 2, and if narcolepsy is diagnosed, then obviously it can only be type 1While we are here, please explain to something to me. Since cataplexy is not associated with idiopathic hypersomnia, and I have had cataplexy for 20 years, it is eliminated as a possible diagnosis. You claim you can prove that ? Tell me something else. Since there are specific indicators involved in the sleep tests that have to be considered to confirm a diagnosis, how much money was I charged for services that had no possibility whatsoever of producing a diagnosis when we should have had a conference the first visit, a sleep test scheduled for the very next action ?
The insurance people want the sleep tests so whenever they can point to a cheaper way out like treating sleep apnea if they can get away with that. Don't you feel insulted that they are preventing a physician from making a diagnosis because they hope to get out cheaply whenever they think they can get away with it ?
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)
