Cause
Did anyone else develop severe Narcolepsy Type 1 following a cough during Covid?
Thank you for confirming this. Doctors in our area are unaware of narcolepsy so it has been a very rough 5 years of several misdiagnoses and chronic mistreatment. All symptoms are present and extreme due to meds that increase tiredness. To add to this, catatonia keeps returning and masked symptoms for the first 3 years and will continue until the underlying cause is treated. Fluoxitine is helping as it is a stimulant used in IH and is reducing severe cataplexy but the sleep attacks are excessive so often wide awake and dreaming along with automatism and impaired awareness. Sleep meds are desperately needed but now awaiting advice from top doctors.
I hope your doctors are on board and that you get on a treatment plan that works for you. Have the medications that increase tiredness made a diagnosis difficult? Often, doctors require that you stop those meds for narcolepsy testing, which can be difficult, especially if they are psychiatric meds. - Lori (Team Member) The few symptoms of narcolepsy that look similar to neurological or psychiatric disorders have caused a lot of confusion for doctors. They misunderstand the nightmares too, thinking they reflect actual life experience. Narcolepsy is treated by respiratory sleep medicine doctors here and they do not appear to understand that a psychiatrist or neurologist cannot remove symptoms that are related to narcolepsy before a sleep test is performed.
Hi
. I hope you get some responses from the community. We still don't know everything about what causes narcolepsy, but if it is an autoimmune disease, it makes sense that it might develop after a bout of COVID. Infections can cause the immune system to accidentally attack the brain cells that make hypocretin. That loss of hypocretin can then cause Type 1 narcolepsy. Here is an article about the causes of narcolepsy that might interest you: https://narcolepsy.sleep-disorders.net/types. Are you on a treatment plan that helps? Wishing you the best. - Lori (Team Member)
