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Xyrem & Stimulants...still Exhausted

xyrem provigil excessive sleepiness

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#1 Jennell

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Posted 05 December 2013 - 10:16 AM

So I'm finally fairly regulated on the Xyrem and a lot of times get a full night's sleep. Although the length of sleep seems to change unexpectedly. Sometimes it will only be three hours a dose for a few days...then oh ok we're at 4 hours or five hours a dose. :) Roll with the punches.

 

But even after starting to go to bed at a decent time, getting a full night's sleep and taking my prescribed stimulants - 200 mg provigil a.m. with 15 mg adarral (sp?), repeat at lunch - I'm sooooooo exhausted.

 

This scares me. perhaps I had unrealistic expectations. I am happy at least that I can now wake up to one little alarm - used to have five alarms and sometimes sleep through them all. Roommates declared it sounded like a bomb going off.

 

I'm at work, but I can't focus, I don't want to work, I don't want to move....I JUST WANT TO SLEEP. But the reality is, after the nighttime sleep I can only do one one hour nap a day. Other than that I can do the "twilight" naps - where you don't really fall asleep but you're not exactly awake.

 

This sucks. Boo. :(

 

Wondering if I can add some more stimulants in - ??

 

It's not the sick tired I had before Xyrem, but it's still I'm So Exhausted I Can't Function Tired. :(

 

I know sleepiness will always be there but I'm worried - how can I keep a job when I'm so tired I can't focus and take long breaks mostly cuz I'm too tired to walk back?

 

This is more than sleepiness and I well I don't get it - thought it would be different. Sigh.



#2 jennel

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Posted 06 December 2013 - 01:08 PM

Just a vent...I know others have said it in different posts, just tired of people who think they understand but really don't the fatigue of n. It's been miserable painful tired all week and I just moved in with a new roommate. 13 years younger and happily working two jobs. I am completely overwhelmed by the disorder of my areas, filled with totes and boxes and not knowing where anything is. Roommie and I to work on kitchen this weekend. Lawd I pray I'll have the energy for it. I am frustrated to be back to sitting in my car trying to talk myself into going into work and then after way too long breaks to talk myself into returning to my desk, to hope my boss leaves early so I can sneak out, to even sit in my car upon arriving home and need to talk myself into gathering my stuff and walking up the stairs. Just so so so very tired. And even though I see people on here with much higher doses of stimulants my dr has had that hesitant look and little give in his voice that say he doesn't want to increase. And it was a fight to find a dr who will give me the 4.75 grams of xyrem I need. So it's not so easy to just get another dr.

I was thinking about how I won't use my narcolepsy as an excuse for missing work even when it is the reason for missing. ...people just don't believe it's very bad and seem to give you that you're just actually lazy and wimpy for not pushing through look or comments.

Had an interview today and no matter how hard I tried I couldn't for the life of me focus on preparation or think through what my strengths and weaknesses are. Thank God it didn't turn out to be one of those interviews!

And I realize part of the difficulty is the lack of good friends in my life. There are still a couple but I don't have anyone I can keep going to for encouragement or enough someone's to spread around and reach out to different folks so the few don't get overwhelmed. I'm actually happier than I've ever been but I miss having more friends.

I know everything will be just fine alright but there is so much mental pressure now. Recovering from debilitating vertigo which necessitated surgery, moving, new roommate, will be laid off in February, broke, have separated myself from my dad because of his temper and didn't do family Thanksgiving and am preparing myself for being home and alone on Christmas. And not being able to work hard now.

Boss gave me verbal warning Tuesday cuz I took two unpaid unplanned days off for move.

Acted as if it were a lazy weekend at the beach and I think taking out frustration for all my leaves. Called me selfish and inconsiderate. How dare I- what? Take care of my life? ?? Suppose for someone able to hiremovers easily can't understand doing it alone. Yes guys came for big stuff thank God!

Ok, enough of that vent for now may post more later. It's ok if no one has a response. Don't know how you would respond to all that. July putting my business out there when I normally never do helps me somehow. Thanks everyone.

#3 Hank

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Posted 06 December 2013 - 04:42 PM

Rant away- you are doing the best you can. We all need an outlet to spare the friends and family from listening to it.

 

If alone on Christmas is a snag for you, churches and other groups deliver meals to shut ins and gifts to children or serve meals. Sometimes volunteering can let us be around people without being overwhelmed by people- even if it is brief.

 

Alone or not your Christmas will be meaningful- just do what you want. A good movie and some rest might be just the ticket.



#4 Jennell

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Posted 09 December 2013 - 05:47 PM

Rant away- you are doing the best you can. We all need an outlet to spare the friends and family from listening to it.

 

If alone on Christmas is a snag for you, churches and other groups deliver meals to shut ins and gifts to children or serve meals. Sometimes volunteering can let us be around people without being overwhelmed by people- even if it is brief.

 

Alone or not your Christmas will be meaningful- just do what you want. A good movie and some rest might be just the ticket.

 

 

Thanks for the support :) And I like the idea of volunteering on Christmas. My father keeps nagging me about Christmas and finally I just laid it out for him of how hurtful it is to be around him yada yada yada (all through texts! lol) and his response was - I love you too, IF you come for Christmas I'll TRY to be nice (my emphasis). Yup, I'll be free for Christmas. ;)



#5 ruthie s.

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Posted 09 December 2013 - 06:33 PM

Maybe try switching stimulants.... 30mg adderrall 2x day is the most miraculous thing for me, has been for YEARS. But have tried Provigil, and - conversely! -just didn't work, plus made me feel really yucky.

im just an example. but, I took adderrall only for the last 10yrs before knowing my fatigue has been related to narcolepsy this whole time - so, no nite meds til now - but, as long as I had that medicine, I was definitely AWAKE and felt great.

#6 CheeryBunny

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Posted 19 December 2013 - 03:54 AM

Another vote for switching stimulants! Modafinil just makes me feel queasy and I'm sick in bed until it wears off, Adderall 3x a day is the only way I can be even remotely normal. :-)

#7 jennel

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Posted 19 December 2013 - 04:27 AM

Thanks for sharing your experiences. Actually for me I've always done well with the modafinal. And I take adderall in addition to it. I've done two doses for a long time -200 mg modafinal and adderall. Just recently I've started making three doses. Curious as to what time you take your doses?

I will say I realized perhaps some of the fatigue might be from missing thyroid doses after surgery last month. The thyroid medicine bottle somehow got separated from my daily meds and in the haze of pain meds it took a couple weeks to recognize it was missing from my daily routine!

Also wonder how much running out of vitamin D and daily vitamin supplement affected me. And lastly, doc recently increased coureg and I still had additional maxide which I think may be too much now and contributing to tiredness.

Boy, so many factors to regulate!! Enough to wear a girl out. :)

Dr did increase adderall to 4 20 mg pills over 2 30 mg. And we're trying a slightly lower second dose of Xyrem for a month to see if that helps me wake up.

My portion of the company is shutting down soon and my manager in another state seems to have stopped paying attention to my arrival time. Not trying to take advantage but for the time have stopped stressing difficult mornings and allowing myself to get extra rest when I just can't get moving in the mornings. Which sadly is more often than I'd like. But at least for the moment it seems I can be a little more gentle with my mornings!

The last couple days I also wondered about the impact of poor diet choices recently and the added stress of a new roommate on my energy. It's not that any one of these things would account for this fatigue...but put all together it may be a powder keg.

I sure do appreciate those who share on this site. It helps to know there are others facing similar struggles and that there are people who legitimately understand this exhaustion.

Thanks everyone! :D

#8 ruthie s.

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Posted 23 December 2013 - 06:12 AM

......and ive posted this problem a few times on here but no one seems to want to answer. don't know what im doing wrong or why im getting snubbed.

#9 ruthie s.

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Posted 23 December 2013 - 06:12 AM

my adderrall, which ive taken for ten years, for the first time suddenly no longer works - now that ive gotten to the higher doses of xyrem - and its very frustrating bc im so tired still all day long, and adderrall has been the one trusty thing ive ever known

#10 CheeryBunny

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Posted 23 December 2013 - 09:57 AM

I suspect this belongs in its own thread but Ruthie, I feel bad that you feel "snubbed." FWIW, I have trouble reading your posts because of the lack of capitalization, punctuation, and paragraph breaks.

#11 jennel

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Posted 23 December 2013 - 10:03 AM

Ruthie this is the first I saw of your issue. I wonder if that has anything to do with my fatigue. Just don't know anymore why the terrible exhaustion is back. Need a new job but don't know how I'm going to make it in on time anymore.

#12 Hank

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Posted 23 December 2013 - 11:52 AM

......and ive posted this problem a few times on here but no one seems to want to answer. don't know what im doing wrong or why im getting snubbed.

I have posted this elsewhere. I am concerned for you that you may be experiencing some side effects. While I was on Xyrem, I started to get very emotional and rigid in my thinking. I lost flexibility in my thinking. I don't know if this is the case for you, but I am concerned that you may be experiencing what I experienced.

 

I feel badly that you felt snubbed because you did not receive the replies you had hoped for. Please know that everyone here is struggling with the same exhausting symptoms. Sometimes, offering support to others is a good way to get support for ourselves. If you are looking for suggestions, I would suggest that you respond to the questions of a few other people who are, like you, looking for replies. Then you can support each other and becomes a back and forth. That worked for me.



#13 Jennell

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Posted 23 December 2013 - 03:28 PM

Hank - It's interesting the affects to our personality you have noted here and in another thread...  I'm pausing now to wonder if the way I've not felt "me" lately could be from that? Hmmm .... Deep Thoughts. :)



#14 supertired

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Posted 27 December 2013 - 08:34 PM

I take 60mg twice a day along with Klonopin for the associated anxiety. I tolerate it well. Maybe you need a higher dose. 15mg is quite low but cautious.

#15 supertired

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Posted 27 December 2013 - 08:44 PM

Ruthie, sorry you feel snubbed. I don't believe people are ignoring you.

As for being tired in the morning, my work reputation means the most to me. Just like a tortured artist, one must create evenin the darkest times. I've realized no ectra few minutes in bed will satisfy my body. That is a reality I must accept and more important priorities await. As hard as it is, force yourself out of bed and get jumpststarted in the shower. My alarm clock needs to be walking distance from my bed with no snooze button. Try putting it in your bathroom
You'll be halfway there.

I also prepare my clothes and lunch the night before so they are ready without needing energy to make choices.

Hope this helps and you start to feel validation here. N is not an easy one to deal with and is very misunderstood outside of the community. I spend a lot of time educating frieds, doctors and family so they understand my grumpiness.

#16 Hank

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Posted 27 December 2013 - 10:39 PM

I take 60mg twice a day along with Klonopin for the associated anxiety. I tolerate it well. Maybe you need a higher dose. 15mg is quite low but cautious.

Klonopin is a nightmare to discontinue. There are safer alternative for anxiety like Effexor. Google benzo withdrawal.

 

Do you take this with Xyrem- I hope not because it is a potentially lethal combination.



#17 jennel

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Posted 27 December 2013 - 11:22 PM

I'm not Ruthie, and perhaps you're able to will yourself up and having an alarm clock out of reach works for you and I'm sure you only mean to be helpful, but personally I had five alarm clocks, all but one out of reach and still slept through them almost every day. Last year I was rushed to the hospital because the onsite nurse feared a stroke due to my struggle to talk coherently and walk steadily. I slept IN the ambulance with sirens blaring, and awoke FOUR HOURS later in the ER asking where the dr was. I was told he'd come in four times but they'd been unable to wake me. And I'd taken extra stimulants for a total of 90 mg dexedrine and 400 mg provigil. I'd also had my normal sleep for some time prior to this.

I only caution that encouragement is great but what works for one may not work for another.

My earlier post said 15 mg adderall but twice a day with 200 mg provigil (twice also) though reading It again I can see that's not clear. Later I also realized I misspoke as it was actually 30 mg 2x of adderall. (Now at 80 mg with 400 provigil and it's not enough)

#18 supertired

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Posted 27 December 2013 - 11:28 PM

Sorry you're struggling so much and suffering. Sorry about the unsolicited advice. I'll be more empathetic and sympathetic to your condition.

#19 jennel

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Posted 27 December 2013 - 11:32 PM

I genuinely appreciate that and I do believe you're only giving tips to be helpful. 😊

I certainly don't understand why one thing works for some or even most, and not others. 😉

This is a terrific resource site and I'm sure your tips will be a goldmine for others. Thanks for sharing!





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