9 replies to this topic

[bingisking]

Just curious, has anyone else had problems with their menstrual cycle and xyrem? I started taking it and I've become irregular and even missed. Is this something that's normal?

[Megssosleepy]

Just curious, has anyone else had problems with their menstrual cycle and xyrem? I started taking it and I've become irregular and even missed. Is this something that's normal?

I was told by the nurse it was not something they saw often, only a few marked cases. But, from being on the NN I posted a similar question and it seems more common then the success program has led on.

Mine has been very off, and I am on BC so I should be right on the dot as I have been for many years. Not so much. This makes me worry about the ladies who are still taking Xyrem while pregnant I worry that if it affects our hormones so much how could it not affect a prego? Just a thought.

[bingisking]

I was told by the nurse it was not something they saw often, only a few marked cases. But, from being on the NN I posted a similar question and it seems more common then the success program has led on.

I've had this issue quite a bit with the success program. They'll tell me that something is rare, and then either by my doctor or via this site, I learn that it's rather common. I'm getting pretty sick of it to be quite honest. I've had very little luck talking to my nurse and no matter what I call her about it always ends with "check with your doctor" who usually then tells me that it's not a big deal at all and I feel like a big dumb. What's the point of calling them then in the first place!?!

Anyways, thanks for the response, I'm feeling a little better about it now

[Megssosleepy]

I've had this issue quite a bit with the success program. They'll tell me that something is rare, and then either by my doctor or via this site, I learn that it's rather common. I'm getting pretty sick of it to be quite honest. I've had very little luck talking to my nurse and no matter what I call her about it always ends with "check with your doctor" who usually then tells me that it's not a big deal at all and I feel like a big dumb. What's the point of calling them then in the first place!?!

Anyways, thanks for the response, I'm feeling a little better about it now

My nurse always says that too, check with your Dr. I kind of wanted to say my doctor charges me $25 to talk to him, and he is a he and don't wanna discuss the fact that XYZ is going on! I normally don't go to my Doc with troubles he's more of a medication guy not so much on the chit chat lets help you! I prefer to just come on here with my questions... better answers, advise, and understanding!

[sleepylune]

When I first started xyrem, I got PMS and breakthrough bleeding for the first time since I was in high school. And mood swings along with that period. It was very unusual for me. I brought it up to my doctor and she said she had never heard of that before and would try to find out more for me. I have another appointment on Thursday so I'll see what she found. I'm pretty convinced it was messing with my hormones because I am also on birth control, the kind you take for 3 months at a time (because I get such bad cramps and my period makes me so tired I couldn't function). I have also tried talking to the nurses and my doctor about things and they say they've never heard of that before but then I come on here and everyone's like, "oh yeah, me too!"

I'm really lucky to have such a great doctor. She has never made me feel uncomfortable about all the side effects I tell her about. She is more intrigued than anything, and always compassionate. I wish everyone could have such an understanding and empathetic doctor. I know that I had to do a lot of searching before finding one. It really makes a huge difference in my treatment because I feel like I have an ally and not someone who just gives me my meds. At least we always have the forums to talk freely and feel supported by one another!

[DeathRabbit]

When I first started xyrem, I got PMS and breakthrough bleeding for the first time since I was in high school. And mood swings along with that period. It was very unusual for me. I brought it up to my doctor and she said she had never heard of that before and would try to find out more for me. I have another appointment on Thursday so I'll see what she found. I'm pretty convinced it was messing with my hormones because I am also on birth control, the kind you take for 3 months at a time (because I get such bad cramps and my period makes me so tired I couldn't function). I have also tried talking to the nurses and my doctor about things and they say they've never heard of that before but then I come on here and everyone's like, "oh yeah, me too!"

I'm really lucky to have such a great doctor. She has never made me feel uncomfortable about all the side effects I tell her about. She is more intrigued than anything, and always compassionate. I wish everyone could have such an understanding and empathetic doctor. I know that I had to do a lot of searching before finding one. It really makes a huge difference in my treatment because I feel like I have an ally and not someone who just gives me my meds. At least we always have the forums to talk freely and feel supported by one another!

I wonder if it can be also perhaps a combo of N and the side effects of Xyrem. I know N really screws with male hormones. Before I was diagnosed, they thought my problems were all due to low testosterone. They did a hormone panel on me and I had the test level (220ug/dL) of a 95yr old man or a really athletic woman haha. Turned out it was just another symptom of N. So if it can screw with our equipment, it wouldn't surprise me if it was a two way street.For me, the N diagnosis explained so many things. I had always wondered why guys my age were so interested in girls. It wasn't that I didn't find women attractive, I just didn't see the reason people felt the need to be in a relationship. When I started the test injections, I actually kinda went through the puberty I never had and became girl crazy for a while, lol. Now I've evened out and I think my reproductive system is in the state it should have been probably a long time ago.

[Sisu]

Mine skipped when I started it. I often wonder if the symptoms we get- oily skin, thinning hair- are because of tesosterone, since I know that these are what people on testosterone report as well.


I don't care, because this is working for me, but still, I wonder.

[Megssosleepy]

Mine skipped when I started it. I often wonder if the symptoms we get- oily skin, thinning hair- are because of tesosterone, since I know that these are what people on testosterone report as well.


I don't care, because this is working for me, but still, I wonder.

My oily skin only last a week or so when I up my doses, my skin actually looks so much better then it has ever, even glows a little... instead of looking dull. I have had so many people ask if I changed makeup. lol
Also, my hair has become much thicker and is growing super fast... not just on my head... getting really tired needing to shave my legs so much! I think thats due to having deep sleep for the first time in over 10 years?? but these are just my ideas.

[DeathRabbit]

Mine skipped when I started it. I often wonder if the symptoms we get- oily skin, thinning hair- are because of tesosterone, since I know that these are what people on testosterone report as well.


I don't care, because this is working for me, but still, I wonder.

That's a possibility. N lowers the T count. Than whatever wrongs get righted by the Xyrem, maybe T goes back up and the body's become acclimated to a low T level. Usually, though, hair thickens with increasing T levels unless you overdose on steroids or T injections and give yourself hypogonadism again. They monitor me for that pretty closely, cuz if you drive that T level too high the body can stop making its own, which can lead to you ending up with a lower T level than you started with.

[sleepylune]

My oily skin only last a week or so when I up my doses, my skin actually looks so much better then it has ever, even glows a little... instead of looking dull. I have had so many people ask if I changed makeup. lol
Also, my hair has become much thicker and is growing super fast... not just on my head... getting really tired needing to shave my legs so much! I think thats due to having deep sleep for the first time in over 10 years?? but these are just my ideas.

I have noticed that I need to shave my legs more, I thought maybe I was going insane.