Narcolepsy/Other Hypersomnias
I was wondering if any other people with narcolepsy or other hypersomnias were around and if we could share coping skills. I am fairly recently diagnosed, and the first medications I put on helped my sleepiness a great deal, but I still suffer a great deal of anxiety going out for fear of experiencing problems away from home. I have a daylight, and am trying to work out medication timing, and I think I am improving, but experiencing irrational fear due to earlier problems.
@raspberryKitten7086
It sounds like a great idea to connect and share experiences. Sometimes someone has to start to get others attention to participate in such discussions.
I have no narcolepsy but I can relate to the fears and insecurities being away from home. Most often it's overthinking, since well, maybe nothing bad happens at all or it's managable if something happens.
What are your fears that many you feel unsafe when you're thinking about being away from home?
@kindSoul10 I'm afraid of cataplexy publically leading to hitting my head and getting put in an ambulance somewhere due to liability issues. I'm also afraid of becoming sleepy enough that i have to doze in a bathroom.
@raspberryKitten7086 I see, how that worries you. Can you think of safety measures, like having someone go with you to minimize risks of injuries?
@kindSoul10. My partner picked me up when I hit my head before, but has more regular and severe problems with going out. I don't have friends here :( I just have to stick with treatment and see what happens I think, I'm in the very early stages of treatment and im still adjusting to the sleepiness barely being an issue but being taken off some psych meds because I feel better.
@raspberryKitten7086
I have hypersomnia, but not cataplexy. I am also recently diagnosed, so I'm afraid I can't offer you much other than sympathy. :/ You said your medicine seems to be helping? That's a blessing. Do you also practice calming techniques? I know a lot of cataplexia is triggered by hightened emotions.
@KestraJean thanks for sharing and caring.
@KestraJean. I am in therapy for trauma, but am in a part of it where my emotions are not necessarily more controlled, but I have been thinking of taking a step back, especially with more difficult life events happening recently. My meds for cataplexy are being changed and the recent change seems to have helped after it kicked in, though I may not have been excited enough to trigger it yet. I went on a trip to see my family and I hope the experience from home helps when I get back to make it easier to get out more.
@raspberryKitten7086
Sounds like you're doing the right things, therapy, trying medications, etcetera. I suppose with cataplexia there's always going to be that risk in your life, but it needs to be one that you can take, not one that keeps you locked up. I hope that the medicine and the therapy give you enough freedom to live your life.
@KestraJean
Thank you