Looking for support…

Index Support Center Forums Living with N Looking for support…

This topic contains 4 replies, has 4 voices, and was last updated by TheRabbitKing 2 months, 4 weeks ago. This post has been viewed 185 times

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    Hey everyone,

    I just got diagnosed with IH 2 days ago and I’m not 100% certain if I’m posting in the right place? But I could really use some support from people who get it.

    I’ve spent the last 5 years (all of high school and 1 year of college) feeling insane. Everyone told me there was nothing wrong with me and I fought my ass off for this diagnosis. And now that I have it, I feel 100% worse.

    Now that I have a theoretically chronic disorder, I have to rethink my entire life. All of the goals that I set for myself and the timeline I laid out means nothing now. I am absolutely terrified for the future and I have no idea what to do. I spend a lot of time driving around aimlessly trying to sort things out in my head, but I’m honestly just a mess.

    The worst part is that no one gets it. No one has any idea what to say when I tell them my diagnosis, because no one has ever heard of it. And I can’t blame them, but I still do.

    I am so angry that I fought so hard for this diagnosis and now that I have it, everything feels worse, and no one understands me any better.

    I guess I’m posting to see if anyone has any tips for dealing with the diagnosis. I can’t shake the feeling that my life is ending. What do I do with myself while I try to process everything? I took the week off work to deal with this and I’m spending it laying in bed feeling miserable.

    If anyone has tips about getting through this, I’m open to anything.

    Thanks for listening. Rant over.


    Allow some time for yourself to mourn. It’s OK and it’s part of processing your diagnosis.
    You haven’t indicated what meds you are going to be trying, if any.
    You most definitely can have a good, long and successful life and career but you are going to set boundaries for yourself and learn to live within them. Be diligent about your sleep time and take a scheduled nap if possible. Your body, your clock… find out what works best for you. Eat nutritious and healthy food prepared by your hand if possible. No sugar, no alcohol.
    Mosy on over to the Non Rx Strategies section… the OTHER things that you do besides “pharmaceutical meds” may have an impact on you in the same way that they have helped others deal with it.
    It’s not the end of the world even though it seems like it today. You can still be the best that you want to be even with this disability.

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    Hi Ferret,

    Thanks so much for the reply. I have been on varying doses of Modafinil for a few weeks without any luck. I’m hoping to have some luck on another medication, but I am not exactly optimistic. I think you’re right that I will just need to grieve for a while. Everyone keeps telling me that, it’s just very difficult and it’s hard to find good support. I have found a narcolepsy support group in my area which I’m looking forward to, and I will check out the resources you pointed out.

    Thanks again for the response, it’s great to just hear it from someone who knows what it’s like.


    This is NOT the end of the world for you, now you have a diagnosis, now you know what you are facing, now you simply need the correct arsenal of tools to deal with the problem. I am curious as to what the results of your overnight PSG revealed, sometimes treatments for hypersomnia lie in treating the night time sleep.
    It is my opinion that it is as important now to have goals even more so than prior to your diagnosis I think that your plans for the future should not change. You will need to make some adjustments but placing your life on hold is not the answer.
    There are many treatments available for this problem however, none are as important, or effective as your own attitude toward the problem
    I certainly wish you all the best


    It sucks, but over time, it can get better. Even if you end up pretty much running the gamut of all possible treatments and don’t really have much luck (like me) you will find ways to cope if you don’t give up. I’ve developed a lot of little bizarre sleeping rituals over the years, but they’ve really helped me maximize my “good days” to the point where most of the time I am just normal person’s level of tired all day long, instead of brain melting into a gelatinous puddle of tired all day long. It’s important in life in general, I believe, to live incrementally, more than setting huge fixed goalposts, but it goes doubly so when you have to deal with a chronic illness like this.

    My current jam: Anathema - Springfield

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