I have a problem that is effecting my life horribly.

[slightlv]

I do have lupus, fibromyalgia, and a bad back. I take hydrocodone for the pain; and an off label old drug for the fibro issues. Other than that, I'm on Effexor for anxiety and depression, and a blood pressure drug. But this ailment, while I've suffered from it for lots of years, is getting worse and impacting my life.

Since I was a child, I always knew I was a "night person." I used to crawl under the covers with the Funk and Wagnells unabridged dictionary and read til the wee hours, because not only did I love finding out about words, but I just wasn't sleepy. This has always made my life hard, because of course, life isn't set up to deal with people like me.

A few years ago, it got so bad I just couldn't go to sleep at night at all. It'd be 5am before I even began to feel sleepy. I thought it was part and parcel of the fibro. It, along with not being able to work out a telework situation with the DoD, led me to retire from work... which I hate. I wasn't ready to stop working, I just needed to work within the confines of my fibro, lupus, and THIS condition.

Over the last few months this has gotten worse, tho. I'm lucky if can go to sleep before 7am, and I sleep all day. Sometimes, I can sleep 10-12 hours, and when I wake up I feel worse than when I went to sleep. In addition, I have horrible brain fog, and I'm clumsy as hell. I can fall getting out of bed or trying to get dressed. Going into the kitchen to try to fix something to eat, I'll drop everything... my hands are so clumsy and shaky. I feel like I could go back to bed a few hours later and sleep another night's worth of sleep without any problem. Needless to say, I don't have a life, and I hate it. I mean, this is getting so bad it's bordering on suicidal. I have friends I'd like to get together with, but they're living a "normal" life. I can never be around when they're up and going. I actually like being with them, and the "aloneness" is driving me bonkers. My animals are even upset with me, and I don't blame them. I miss being with them, but I have no energy and no stamina... not to mention steadiness to play with them, especially my 100lb dog. One good swipe from his tail and he knocks me down -- I'm 4'9" and 95 pounds on a good day.

I thought this might have to do with my meds, so despite dealing with the chronic pain, I stopped everything I was taking that said it could make me sleepy. It had no effect. I still do "drug holidays" to try to see if it'll change. But so far, all it does is give me more pain when I AM awake.

A month or so ago, I saw an add come across my phone and I actually read it. It was advertising a medicine (which sounds like a pain to use) for something called "idiopathic hypersomnia." Has anyone heard about this, know anything about this? I did enough research to know that even the Mayo Clinic talks about it... so I have to think it's actually something real... not made up by drug companies to sell more drugs. But I checked off every damn symptom they talk about.

I have an appt with my doc on the 29th of next month, and I'm gonna tell her about this and what I've tried to do, both before knowing a "name" and afterwards. But if anyone has every known anyone with this, or has it yourself, I'd love to know what you've tried, if anything helped, and how you cope. I'm at the end of my rope.

[eppur_se_muova]

1. "Idiopathic hypersomnia" is just a technical term for "you sleep too much and we don't know why".

I'd be a little skeptical of a claimed targeted treatment, but maybe that's just me.

Have you ever had a sleep study (hooked up overnight to an EKG)? This is standard for diagnosis of possible sleep apnea and narcolepsy. I actually came across the term Idiopathic hypersomnia while researching my own sleep problems -- like you I've always been a night owl, stayed up late reading under the covers (may have ruined my eyes that way), watched Letterman and Conan at work back in the day and often worked a 12 to 12 schedule, stopping by the pizza parlor on the way home to pickup any unsold pizza order for $1 (they closed at 1AM). I don't have your other maladies or any symptoms that might be attributable to them, just the sleep issue. My doctor suggested I might have sleep apnea and recommended a sleep study, but I have no insurance and the test is expensive, so I keep putting it off. (Also, I'd never be able to tolerate a CPAP machine, so a diagnosis of sleep apnea would bring me no real practical benefit.)

In my own case, I suspect narcolepsy type 2 is more likely than sleep apnea, and it can be treated with medication* so I really hope I can arrange the test before too much longer. My mom had a similar test done a few years ago and Medicare covered all her expenses. With neither insurance nor Medicare, I don't know how I'm going to swing it. It's likely to cost over $1000 and maybe a lot more without coverage.




*Ironically, the usual treatment is Nuvigil, which I believe is one of the drugs the WH physician was distributing like Halloween candy. So ass-kissing Trump minions could get all they needed for free, and I can't get it at all without a Rx.

[Basic LA]

2. This might seem too simple.

But your circadian rhythm is out of whack. Klonopin, a sedative, might get you back on track gradually. It's worth a try, and I'm sorry you're going through this.

[slightlv]

4. I'm on a pill called "zanlopin" (or something close to that)

I started taking it while I was still working. It's a four-hour sleeping pill, to try to get things back in whack. It didn't work, although I still take it. If I didn't, I feel like I'd never lay down to purposely go to sleep. I feel so much better when I skip a night and just stay awake for the next day. This weekend, I almost stayed up all weekend... but I figured I'd better try to sleep last night. I missed a very good day to take my dog out for a good, long walk. I love Spring... and it would have been the perfect time for he and I to spend time together. Thanks, tho... isn't Klonopin also an anti-anxiety drug?

[Basic LA]

5. Yes, generic is Clonazipam

It got me back on track when I had trouble getting off swing shift hours after many years.
Hope you're back on track soon. Best wishes.

[slightlv]

3. Like you, I'm skeptical when I come across a malady

I haven't heard of before. I usually attribute to drug companies coming up with a drug and making up a malady to sell it. "Idiopathic" is pretty obvious. I don't have sleep apnea; I'd be scaring my husband to death if I did. I did have it at one time, when I was overweight. But that all seemed to go away once the weight started dropping off me. I went from over 200 lbs to 95, and I now stay right around 92-95 lbs. I do have night terrors - at least, since all these years with *rump. I've actually fought my husband as he tried to wake me up from them. Last time, I evidently clocked him a good one (LOL).

I'm just at the end of my rope with this. I mean, I feel like I'm sleeping towards my death... and that last is going to be a long, lasting sleep. I would like to do a few more things before I get there. The twice annual time changes do me no good thing, I know that. I'm screwed up for weeks after one of the changes. So, evidently in one way, I'm sensitive to "time" as a construct. I'm just throwing up my hands at this point, looking for ledges to grasp. It just gets to the point where you feel like you're going crazy. I set alarm clocks, and if I don't sleep through them, I find them thrown across the room when I do wake up. Right now, I basically live on 5-hour energy several times a day -- both bad for my body and for my pocketbook. If I could just get up while it's morning, I'd cope with the rest of it.

Thanks for writing... like I said, I see my doc for regular appt next month. I slept through the one I had previously scheduled! We'll see where it goes with her... if no where, then I have my rheumalogist to fall back on, as well.

[Maraya1969]

6. I take a benzodiazepine, Klonopin but I have been on it for years and it doesn

work like it did before but it does help. The other drug that helps me a lot, (but I take 2 or 3 a night and that knocks me out

Good luck to you. I'm sorry you have to go through this.

[slightlv]

8. Thats what happened to me and Effexor, an sari.

Doc finally added something to help its effectiveness, ariziprazol, but I'm not seeing much difference. What gets me is all this crap we take for our pain meds, but it would take over ten years of titering to successfully get off the Effexor. No one tells you that, and no makes a big deal out of it. But I consider it a big deal, especially after trying to switch to another in kind drug. I was nearly suicidal before I said anything and got back on the Effexor.

I think we've got some weird priorities for people. I'm sill not feeling right today... but I'm back in bed, sitting with pillows behind me where its more comfy. Don't think I'll sleep tonight and then try to catch up on stuff tomorrow.

[momta]

7. My son recently got diagnosed with "Non-24 hour sleep disorder"

There are a few websites about it, like this one:

https://www.webmd.com/sleep-disorders/non-24hour-sleep-wake-disorder

It's common in blind people, but he is fully sighted. His sleep doc told him that it's very rare for sighted people to have it, but here he is. He doesn't currently have a job, so his sleep schedule winds around the clock like a drunken sailor. It's frustrating for him, and I don't think he has found any "cure" but he's trying to find a doc or clinic who can help him.

Not sure if this is any help, but know that you're not alone.

Good luck.

[slightlv]

9. I think I've run across this in my research.

It hits some familiar points with me. Its like your circadian rhythm is set for a 25 or 26 hour day. Is that the one? I feel for him. From what I've read, these slip disorders have no cure, although there are meds that can help you cope. Which sounds about like what I've been told about fibro. It sucks. From what I've read they seem to know a possible protein (?) involved and they're working with that. Hope for your son they're on to something.

[XanaDUer2]

10. I'm so sorry

It sounds difficult. Holding you in light

[XanaDUer2]

11. Are you feeling better ? Nt

[slightlv]

12. Yeah... somewhat.

Out of the last 3 nights, one I stayed up all night. The next night (day) I found I'd thrown my alarm clock across the room, and didn't wake up til late afternoon. Yesterday, I woke up at 4:30, drank a 5-hour energy and called it a "nights" sleep for me. IOW, I'm still working on it. Am enlisting hubby's help for tomorrow morning.

The last nice day here... prior to the rains when it was nice and warm... too the dog out for a walk. I think that helped both of us! Now we've gone back to very cool weather (I won't call it cold... tho it's too cold for me). Hopefully the weather report is right and it'll be nice enough for Lexy to have another playdate with her favorite pup around the corner.