My problem with narcolepsy

I was diagnosed with narcolepsy without cataplexy last February and life has been going downhill since. At first I thought the news was great! It explained a lot of things, like the way I felt all the time. I was always tired and felt like I never got any sleep. I always had a hard time sleeping so my dr. put me on sleeping pills. Those didn’t seem to help me feel rested and I was told that I was just depressed so they gave me meds for that too. They made me feel better but never rested. I finally got tested and got answers. I was happy because I would finally have the correct meds to make me feel better. I was put on xyrem and it has been wonderful! I have never felt so rested in my life! The down side is that now I feel very alone. Nobody understands and doesn’t seem to want to understand what is going on with me. They treat me like I have some disease. I lost my job & my friends. And those that do try to understand tell me it isn’t that bad and I need to get over it. I just have the “cheap” form because I don’t have cataplexy. Therefore it’s more like a fake problem that’s in my head or something like that. My husband doesn’t seem to even want to be around me anymore either. We don’t snuggle anymore at bed time; his excuse is that if I fall asleep on him it hurts him because he can’t move me. I get that but he still doesn’t want to snuggle any other time. And sorry if this is TMI but we haven’t had sex since the diagnosis either! We also just moved recently and instead of a couch or something like that we got individual chairs so we don’t even sit next to each other anymore. It’s just killing me that he doesn’t spend time with me anymore! I don’t really care that all my friends abandon me but it’s my family I don’t get. I don’t know what to do……..

You may want to do two things: (1) take your husband with you to your doctor so he can ask questions and receive information about the illness. It IS hard to understand how someone is tired all the time. (2) Seek professional counseling together or alone. It may help you both understand your individual reactions to the diagnosis by identifying your feelings and emotions about a chronic illness and how you can work together to maximize your energy levels, cope with the illness, and reconnect as husband and wife.

He has been with me to every dr appt and seems to understand everything as he has almost the same problems as me. He has no insurance so he cant get tested. He is vocally supportive just doesnt seem physically supportive. As for seeing someone we both dont have insurance (mine expired just after being diagnosed) so we cant afford it. And our church pastor just moved so we have not gotten a new one yet so we have noone to go to there either. We will just have to wait. I havent really talked to him about how i feel because im afraid of how he will take it. If he takes it the wrong way he tends to get moody and things will get worse. Thanks for the advise though! As you can see my life is complicated… :confused:

I'm so sorry you and your husband don't have medical insurance. That certainly complicates things. I use yoga to relieve my stress. Stretching and focusing on breathing helps me get a new perspective on things. I also have read so much about the illness on the internet and such that I know it's not my fault that I feel the way I do. One of the things I have learned to do is not show emotion. Perhaps, you are doing that too and your husband doesn't understand your behavior. Remember, he is not being treated and is probably depressed and has turned inward. That may explain his disinterest in you and your physical relationship. Just a thought. I hope you are to get the counseling you need just as soon as you can. I will pray for you.

Thankyou so much. I know he is going through alot right now and i am trying to be understanding. Life is stressful right now but im sure it will eventually get better. And yes i do hide my emotions alot! I always have. Thanks for the prayers! We can use all we can get!

I'm so sorry. Are you able to see a counselor with him?

due to not having insurance and that my chruch is between pastors there isnt much in the counselor deparatment for us. he is trying a little bit more now but its a slow process.


I would encourage you to give your self time to adjust, count your blessing and realize that your diagnosis is a major change for "both of you".

Also in every way possible try reconnect with your husband. Doing the things that you both enjoyed in the past..parks, food, movies. Maybe even taking "the active" lead in your romantic relationship... Most guys I think, would respond to that and possibly this would help your husband open up to what he is feeling... You know your husband best and how touch his heart on a deep level. Remember your "girl power", you didn't lose that when you were diagnosed with narcolepsy!!!

Certainly keep seeking a good counselor, your church and supportive friends.

Most importantly choose to not give up, choose a picture both of you getting through this. Keep reinforcing your self with positive thoughts and actions.

Thank God you know what you are dealing with now.

You and you husband are in my prayers.


Quick question: what is TMI?


TMI = to much information

and thanks everyone! we are working thru things

great advice Ranger

Hello Scott,

Thank you!

Relationships are too important to not try everything under the sun to restore. The other choice is to invite pain into your life that you may never get over, or suffer a great life time of loss over.

I'm a 100% committed to restoration, reconciliation, and real relationships. "Silent divorce" has no place in anyone's life or society. What ever the problem is both parties must take responsibility for resolving and the healing. Anything less is a cop out and irresponsibility.

This understand came at a price that I would never want anyone else to go through...


Roger - (totally committed to healing, preventing pain, restoring and building relationships.)

PS: A Good guide line in a marriage would be "speak the truth (your truth) in love, especially your truth, be totally honest in a loving way. (don't hide or pretend) because it is toxic to a loving and growing relationship.

Old post. CSUB has student in training counseling for students and non students. there suppose to be based on income. mine was 15.00 a session. Problem you have to pay for semester parking 45.00 or 5.00 a day pass. They do have 1 hour parking for a fee but its a pain to get back in time. They also have group counseling Some are learning about n/c. It would be nice to get Julie here to educate the nursing class or get a hold of her new book a doctors' narcolepsy textbook,