7 replies to this topic

[smg08009]

My sister is on 3g 2x/night and has been having some scary daytime side effects related to visual perception. She is complaining of "things looking larger or smaller than she knows they are (like her arms, piano keys, etc), brain fog, increased difficulty with concentration and daytime sedation and slower than usual reaction time. Our doctor told us to stop taking the med for a few days. Just wondering if anyone else has experienced something similar or if this is something we should be seriously concerned about. Thank you for reading and any input is greatly appreciated!

[Hank]

I have been on the 3.75x2 dose for about 1 month. I noticed a great difference over the 3.0x2 dose when each night and day seemed like a coin toss. And 2.25x2 was a rollercoaster. I did not experience any visual perception problems, but I certainly felt foggy and just "off". It has been difficult to determine a symptom from a side effect, since I have had so many medication changes. This month on the same dose is the most consistency I have had in the past year. I hope your sister's trouble resolves- she certainly needs to rely on what she sees. Just wondering though- when I get C in certain situations, my vision starts to get tunnel-like and warped. Any chance this is C related- maybe not.

[Megssosleepy]

I have had all of the above, and it is hard to tell what med is creating what side effect. I made an appointment with my sleep doc today (cant see me for 3 weeks!!) I am thinking that the Addys are creating more of a problem then they are worth. I am still sticking with the xyrem, Ive read it takes months to get used to it and see results. Im two months in and can not give up yet! The side effect do seem day to day tho, some days are better then others. Once the dose is higher and your body gets used to it... they level out a bit.

[cloudtalk]

I've only been taking it for like a month, but I have noticed that my perception of things is different. I feel like I have wider peripheral vision and my voice doesn't sound as loud in my head, so I'm able to speak up more. My sister is taking it too and she said she feels like time is moving more slowly, like if she looks at a fan or a second hand on a clock they actually seem to move more slowly. I also still get brain fog during the day, which gets worse and worse as the day goes on. I think maybe my brain is still getting tired even though my body might not be. Maybe because it's not used to being awake for so long, without a bunch of naps to process parts of the day in little pieces? I feel like it's making pretty much everything different, getting some deep sleep at night. I notice different things and feel like my brain must be rewiring or something. It's actually been a pretty difficult adjustment. Being on Xyrem has been a strange and sometimes scary experience, but I'm hoping that it just takes time to get used to.

[bluesbrother20]

I've only been taking it for like a month, but I have noticed that my perception of things is different. I feel like I have wider peripheral vision and my voice doesn't sound as loud in my head, so I'm able to speak up more. My sister is taking it too and she said she feels like time is moving more slowly, like if she looks at a fan or a second hand on a clock they actually seem to move more slowly. I also still get brain fog during the day, which gets worse and worse as the day goes on. I think maybe my brain is still getting tired even though my body might not be. Maybe because it's not used to being awake for so long, without a bunch of naps to process parts of the day in little pieces? I feel like it's making pretty much everything different, getting some deep sleep at night. I notice different things and feel like my brain must be rewiring or something. It's actually been a pretty difficult adjustment. Being on Xyrem has been a strange and sometimes scary experience, but I'm hoping that it just takes time to get used to.

Everyday is a different feeling for me, sometimes I wake up with major hangovers if I wake up too early into the medicine and then it can last 4-6 hrs later. Have you ever been tested for sleep apnea cause xyrem can slow down you breathing and even though you get deep sleep you can have disrupted sleep which wakes you up and you don't realize. It's possible which ever stimulants you are taking are not effective and efficient. What are you currently taking and dose? Naps are good but limit them to 20 min or 90 min so you go through the cycle and not too late in the afternoon. You should also try at least 30 min of exercise and keep hydrated throughout the day. It does take time till you find the right dose and there ways of sleep hygiene to help you sleep better.

[cloudtalk]

Everyday is a different feeling for me, sometimes I wake up with major hangovers if I wake up too early into the medicine and then it can last 4-6 hrs later. Have you ever been tested for sleep apnea cause xyrem can slow down you breathing and even though you get deep sleep you can have disrupted sleep which wakes you up and you don't realize. It's possible which ever stimulants you are taking are not effective and efficient. What are you currently taking and dose? Naps are good but limit them to 20 min or 90 min so you go through the cycle and not too late in the afternoon. You should also try at least 30 min of exercise and keep hydrated throughout the day. It does take time till you find the right dose and there ways of sleep hygiene to help you sleep better.

They tested for sleep apnea when I did the sleep study and didn't say I had it. But my boyfriend has told me that on nights that I've raised the dose I snore really loudly sometimes, I figured because all the muscles are so relaxed or something. I stopped taking any stimulants other than coffee since I've been on xyrem because xyrem make me even more shaky than the stimulants did, and I have to take a small dose of propranolol to stop it, and propranolol makes me feel kind of foggy/dumb. I was taking Vyvanse, before that I've tried adderall and ritalin, they all made me kind of wired yet still exhausted at the same time. I tried nuvigil and it just made me feel foggy all day. I've started trying to take a midday nap, which on xyrem is totally different from the naps I used to take, shorter and less sleep-y, and I feel a little better for a couple hours after that then start to get foggy again. I walk a lot, and try to stay healthy, but I probably should try exercising, too. It's just another thing I've never had enough time to do.

[Megssosleepy]

They tested for sleep apnea when I did the sleep study and didn't say I had it. But my boyfriend has told me that on nights that I've raised the dose I snore really loudly sometimes, I figured because all the muscles are so relaxed or something. I stopped taking any stimulants other than coffee since I've been on xyrem because xyrem make me even more shaky than the stimulants did, and I have to take a small dose of propranolol to stop it, and propranolol makes me feel kind of foggy/dumb. I was taking Vyvanse, before that I've tried adderall and ritalin, they all made me kind of wired yet still exhausted at the same time. I tried nuvigil and it just made me feel foggy all day. I've started trying to take a midday nap, which on xyrem is totally different from the naps I used to take, shorter and less sleep-y, and I feel a little better for a couple hours after that then start to get foggy again. I walk a lot, and try to stay healthy, but I probably should try exercising, too. It's just another thing I've never had enough time to do.

This is interesting... I wonder if I should just go back to caffeine myself... I stopped drinking coffee, got past the withdrawal but Ive gotta say it worked way better then the stimulates, the problem was 5 hour energys cost more then a whole month of Adderall. I am very Wired and very exhausted right now. I feel like if I had an active job it would be okay, but a mindless desk job is not good at all. (the reason I am on here all the time, so I will use my brain and wake up a bit) I took extra Adderall today, and my whole body feels heavy and im short of breath like I am asleep? Weird feeling when I am clearly awake.

[smg08009]

Wow! It's awesome to know that other's are experiencing similar effects. My sister got better after two days or so and is back on xyrem. I however have switched back to ativan for a few days and upped my daytime ritalin. Never thought I say this, but I miss xyrem! I hate the side effects and the weird drunk feeling it gives me, but I definitely notice a difference in how well I sleep and cataplexy without it. I'm hoping to start up the xyrem again tonight since I don't have school again til Tuesday...but I'm a little worried about having visual perception issues on a day when I have clinical or something. Hang in there everyone!