5 replies to this topic

[mrsmisery]

Ok so here goes. My husband was recently diagonisd as having narcolpsley and it is horriable for me. he takes Xyrem and he is on 4 grams X 2 a night. He is horriable when he takes this. 95% of the time I have to wake him up to take his second dose and we have 2 small children that wake up early in the mornings. And I get off of work at 12 am and I try to get him to take his second dose by 2AM- which when I wake him up he fights and argues with me. On some nights after he has taken his 1st dose he will be in bed and have the urge to hit something which is the wall. And every night I hate comming home from work because this medicine "makes him excited" and tonight was the last straw....I thought that he was going to go against my will if you all know what I mean. I love him dearly but I thought that tonight was going to ruin our marriage. Have others out there felt this when they take this? I mean this is a great med for him to be on but I want to know if I am the only one out there that feels this way? I really need some feedback on this!!

Please help out there!

[sleepylama]

Mrs. Misery,
Call his doctor yourself and let him know what is going on. Your husband may not be fully aware of his actions at the time of the issues. I have just been taken off of Xyrem and will never take it again. The hallucinations, nausea, etc, were awful, even after making sure I took it and laid down to sleep right away. I get hallucinations anyway and they are frightening, but these were the absolute worst. Not to mention eventual insomnia and a lovely hung over feeling each morning.

Xyrem isn't for everyone and in my experience it takes a while to find the right drug combinations, etc. I am still working on the right combination myself w/my doc and husband.

I find it especially helpful to have my husband explain to the doctor himself how things are going. It gives the doctor the perspective of the person who is not medicated, does not have narcolepsy, but is trying to live with the person w/the disease.

Good luck to you and let us know how it is going.

[Julie A]

Interesting that you brought this up. I have recently begun seeking out other PWNs (hence joining the forum), and came across a young man who told me he had taken Xyrem for a while and wanted it to help, and maybe it woul've if he hadn't had one problem; It made him so "excited" as you so modestly put it, that all he did was badger his girlfriend all night. He said it was his Viagra. He said the experience was longer and more satisfying after he had taken his nightly dose. He finally had to quit the medication due to the fact that he didn't sleep. He spent more time seeking out "other" ventures after each dose.
I personally get knocked out. But your husband is not alone.

[mrsmisery]

Interesting that you brought this up. I have recently begun seeking out other PWNs (hence joining the forum), and came across a young man who told me he had taken Xyrem for a while and wanted it to help, and maybe it woul've if he hadn't had one problem; It made him so "excited" as you so modestly put it, that all he did was badger his girlfriend all night. He said it was his Viagra. He said the experience was longer and more satisfying after he had taken his nightly dose. He finally had to quit the medication due to the fact that he didn't sleep. He spent more time seeking out "other" ventures after each dose.
I personally get knocked out. But your husband is not alone.

Thank you!! I thought that I was over exgratting about this, but I am glad that I'm not! Thank you!!!

[greatbig47]

Ok so here goes. My husband was recently diagonisd as having narcolpsley and it is horriable for me. he takes Xyrem and he is on 4 grams X 2 a night. He is horriable when he takes this. 95% of the time I have to wake him up to take his second dose and we have 2 small children that wake up early in the mornings. And I get off of work at 12 am and I try to get him to take his second dose by 2AM- which when I wake him up he fights and argues with me. On some nights after he has taken his 1st dose he will be in bed and have the urge to hit something which is the wall. And every night I hate comming home from work because this medicine "makes him excited" and tonight was the last straw....I thought that he was going to go against my will if you all know what I mean. I love him dearly but I thought that tonight was going to ruin our marriage. Have others out there felt this when they take this? I mean this is a great med for him to be on but I want to know if I am the only one out there that feels this way? I really need some feedback on this!!

Please help out there!

Can a medications REALLY be the cause of so much stress?
Every tried to wake up every morning to swig a few ounces of salty water?
It's icky.

There are worse things than missing his second dose. Maybe he needs to be responsible for himself and set his own alarm.

Have you tried encouraging him?

How's the Xyrem working out for him?
Any improvents?

[Lovemyhusband]

Ok so here goes. My husband was recently diagonisd as having narcolpsley and it is horriable for me. he takes Xyrem and he is on 4 grams X 2 a night. He is horriable when he takes this. 95% of the time I have to wake him up to take his second dose and we have 2 small children that wake up early in the mornings. And I get off of work at 12 am and I try to get him to take his second dose by 2AM- which when I wake him up he fights and argues with me. On some nights after he has taken his 1st dose he will be in bed and have the urge to hit something which is the wall. And every night I hate comming home from work because this medicine "makes him excited" and tonight was the last straw....I thought that he was going to go against my will if you all know what I mean. I love him dearly but I thought that tonight was going to ruin our marriage. Have others out there felt this when they take this? I mean this is a great med for him to be on but I want to know if I am the only one out there that feels this way? I really need some feedback on this!!

Please help out there!

Hello Mrs Misery. I am curious about something you said. "I mean this is a great med for him to be on" You told us the down side to the med but you didn't tell us about the good things that make it "great" for him.

Although my dh does not take Xyrem he does have his not so nice moments. I think that being newly dx for anyone is a lot to take and can add stress. Thats not to discount your feelings, but you have to be the one who stays strong and lets him know his behavior is not acceptable. He may not even be aware of what he is doing, but if he is aware you need to let him know his action are affecting your relationship in a negative way. On those hard to handle days I try to think about how I would feel if someone told me I had this medical condition that can or will turn my entire world upside down with no chance to make it stop or go away.

I have found that keeping communication open is key to keeping your relationship in good shape. In all relationships communication is basic maintenance, but being married to a man who has N it is no longer basic it becomes a necessity.

It's been 5 days since you posted, I hope you have had better nights since then. I am here for you if you feel the need to talk or vent.