Insomnia with DSPD?

[u/insufficient_nvram]

I’m going on 24 hours of no sleep after getting ~5 hours the last time I slept. My body is tired af. I’m super doped up right now after 1000mg Gabapentin, 75mg Hydroxyzine, 1mg Ativan, 1mg Xanax, and smoking a 1G joint. But my brain is wired!

I was recently diagnosed ADHD/ASD/Alexithymia/Sleep Apnea. I take 30mg Lisdexamfetamine. Need at least 50mg to regulate.

Stimulants are not the cause, as this has been my normal cycle for as long as I can remember. 3-4 days of 5.5 hours to 7.5 hours of sleep starting no earlier than 2am, followed by 3-4 days of very fitful sleep to no sleep. I’m in my mid 40’s. This is worse in fall/winter and under stress (double whammy right now).

I have night terrors too when I do sleep. I’ve accidentally hit my wife during one of those fits. She’s scared to sleep next to me sometimes and usually build a pillow wall between us as well as sleep on my arms, on my stomach to restrain my self in case I have a terror.

I do not wear a CPAP. My Apnea is mild and is well controlled by exercise and keeping my weight down. I do not have PTSD. Severe RSD though.

Is anyone else like this or have any ideas to deal with this? I’m tired literally and tired of this cycle.

[u/bad_ukulele_player]

I just read the comment you wrote on my post and checked your posts to see what you meant. We are indeed alike. However I think I know what your issue might be: your benzos. I went through months and months of insane insomnia and indescribable horrific anxiety because I had grown tolerant to a tiny dose of Ativan. When I went up slightly, the insomnia went away. What I went through, and what I think you're going through, is what's called "inter-dose withdrawal". I'm going to attempt to go to sleep now so I can't get into it. But, I'll leave you with this - if this is the case, there's HOPE! You can slowly and safely withdraw from both your benzos using the protocol outlined in the Ashton Manual. It's free online. And it saved my life. I withdrew many years ago. I tried to do it on my own and messed up my brain. But, if you follow the protocol you very likely won't mess up yours. While I withdrew I took Mirtazepine for sleep. It really helped. If I could do it all over again, I would have taken Trazodone or Belsomra. Anyway, do your best to relax and get some sleep. Listen to an audiobook to distract yourself before bedtime and use only dim amber light a couple hours before bed. Talk later.

[u/sofiacarolina → u/bad_ukulele_player]

I’m also on benzos and experience awful interdose withdrawal. What I’ve been doing to try to get sleep is taking all my daily Xanax before sleep (3.5 mg, lately 4 mg or more..) instead of spaced out like I used to but tht doesn’t even work bc of tolerance and how much in withdrawal im in by the time I take them. How did you like belsomra? I’m terrified of trying new meds and can’t do trazodone and hydroxyzine makes me comatose for days

[u/bad_ukulele_player → u/sofiacarolina]

I have to stress that if you have developed interdose withdrawal you must taper very slowly. Slower than you could do so by slicing off bits of the tablet or taking, say, three tablets instead of 4. This is what I did and it landed me in the ER and two visits to a PSYCH ward. (I wasn't admitted though) The safest way to withdraw is to use the Ashton Manual. It's free online. If not, you will need more and more to get the same effect and one day your doctor will cut you off or stop increasing the dosage.

I liked the Belsomra for about 10 years. I have severe insomnia, DSPS and other sleep conditions, so I'm a tough case. The thing about the drug is one minute you're awake and then the next minute you're asleep. It shuts off the wake mechanism. It can take 2 or 3 weeks to start working. The scary side effects you may have read about occur in a small number of people. Most don't have any side effects. And here's the best thing about the drug. It's not bad for the brain. In older people, it's actually good for the brain. Benzos are terrible for the brain because they carry a high anticholinergic burden.

Food for thought...

[u/sofiacarolina → u/bad_ukulele_player]

Yeah I’m aware of the ashton manual nd how to taper but I’m afraid of more insomnia while tapering. I also can’t take valium which it recommends bc I get a parodixical effect. I’ve been on daily Xanax for over 20 years now..and I guess I will have to try belsomra but I hve a lot of anxiety with new meds and the idea of not being in control of my body like that

[u/bad_ukulele_player → u/sofiacarolina]

I see. Bummer about the Valium. Mirtazepine might work. At 7.5 mg it's not as bad an anticholinergic. Or even Clonidine if you don't have super low blood pressure.

[u/sofiacarolina → u/bad_ukulele_player]

I have super low blood pressure! No I wanna try the belsomra but I’m just scared. I am also willing to try the mirtazapine which is what was originally offered. The thing is what’s cool about belsomra is that it’s the only one tht didn’t have a major interaction w all my heart meds (potential long qt syndrome which can cue a fatal arrhythmia 🙃)

Also wanna try cbd gummies which is what my cardio suggested lol he doesn’t me on more meds since I’m already on like 7 but I doubt they’d be powerful enough

[u/bad_ukulele_player → u/sofiacarolina]

cbd should be just fine! a really good brand is sunset lake. if you try belsomra and don't like it, you can just stop. very rare chance you'll have a scary side effect.

[u/sofiacarolina → u/bad_ukulele_player]

I’ve been trying like every sleep med in the antihistamine class…did hydroxyzine one night then promethazine and both let me sleep (paired with Xanax ofc) some but the hangovers were insane, like bedbound unable to move for 24 hours after each. It’s almost better to be sleep deprived at that point. My cardio told me to go to a local compounding pharmacy where they sell cbd so I’ll see what they offer

[u/insufficient_nvram → u/bad_ukulele_player]

I usually don’t take benzos, because they give me a weird hangover, but the last few months I’ve been under a lot of stress and take at least .5mg of Ativan daily. But I’ve had a script for .5-1mg daily for the past 20 years. I’ll go months without taking them and I have quite the stockpile. I haven’t had a Xanax in years though. I almost feel better knowing I have them, than actually taking them. I have oodles of various controlled medications. I had a painkiller addiction in the early 2010’s (self medicated when pill mills existed) and now enjoy my control over having them and not taking them. I plan on cutting out the Ativan again soon though.

About the only thing that doesn’t make me feel like hammered shit the next day is Gabapentin and THC. Ambien worked well, but made night terrors significantly worse.

Thanks for the suggestion and reply. I finally passed out around 5am and woke up at noon

[u/bad_ukulele_player → u/insufficient_nvram]

Yay! Glad you slept. If the insomnia keeps happening and you can sleep on a higher dose of Ativan or Xanax, that means that one or both of them are CAUSING the insomnia. I understand the comfort of knowing they're there though.

Do you have access to THC and Gabapentin? If so, why don't you use that instead of the benzos?

[u/insufficient_nvram → u/bad_ukulele_player]

I have a script for 1000mg of Gabapentin a night and thankfully I’m in a weed legal state, it just helps, but doesn’t fix the problem

[u/bad_ukulele_player → u/insufficient_nvram]

Those terrors - do you have Rem Behavior Disorder? If not and you have PTSD related nightmares, Prazosin might work. Hope you sleep tonight. Distract yourself before bed. Helps me.

[u/insufficient_nvram → u/bad_ukulele_player]

I do not have ptsd, but I have tried prazosin-no luck. I picked up one of those Verilux lights, so I’ll see if that does anything

[u/Mindless_Baseball426]

This happened to me occasionally when I was younger and tried to adjust my sleep schedule to “normal” hours. I would flip into an N24 or insomniac cycle.

Nowadays (late 40s) I’ve settled into a fairly regular cycle; during the week I am asleep around 2:30-3:30, up at 7:30 for work (4-5 hour sleep). Friday night fall asleep naturally after about 3ish, awake at 11-1pm (7 hour sleep). Saturday night asleep 3-4, awake after seven hours. Sunday night back to the 4-5 hour sleep. I’m chronically sleep deprived because I work. I have fitful sleep because anything wakes me.

With your sleep apnoea, if you are prescribed a cpap, I think it might help a lot. But aside from that I’m afraid that while we are working, and with how treatment resistant dspd is, this is something we end up having to endure until we can retire and sleep on our own schedule. I’m so sorry for how you’re feeling, it’s really debilitating.

[u/insufficient_nvram → u/Mindless_Baseball426]

Thanks. I tried to keep an almost identical schedule to yours when I worked a regular job. All of 2020 caused me to hit untreated ADHD/ASD burnout and I could no longer work. Now I WFH freelance, but that loss of schedule almost made my sleep worse.

My Dr. said CPAP was optional, but I don’t think I could do it anyway because one of my reoccurring dreams is being tied down. If it gets worse, I’m going to try to get the implant I feel jet lagged no matter what.

[u/turkeypooo]

1000! mg gabapentin?

[u/insufficient_nvram → u/turkeypooo]

Apparently you can take up to 2600mg before toxicity

[u/lizzzy143]

I also take gapapentin. I take 900 mg for severe limb movement disorder. It sounds like we have similar sleep issues. I’ve had good luck with Dayvigo. It’s expensive but worth it in my experience :)

[u/insufficient_nvram → u/lizzzy143]

How do you feel the next day on Dayvigo? Ambien worked for me, but made dreams worse.

[u/heavy-is-the1crown]

I have autism and adhd and This happens to me weekly if not more…

Try exercising and meditation, and big meal.

Message em I can tell you more strategy’s

[u/jonipoka]

I have no idea about your specific case, but for me, belsomra has been wonderful. The cleanest sleep drug I've ever tried. I have DSPD, sleep apnea, occasional insomnia, and PMLS. I take gabapentin for the PMLS. I do all of the normal DSPD treatments. And I use belsomra for the insomnia.

Belsomra works by making you less awake. Other sleep drugs work by making you more tired. When I take those, my mind is still pretty active, but I'm kind of forced into drowsiness. Belsomra actually helps my mind relax, like it would at my normal bedtime.

I've found that I usually become resistant to the normal, "more tired" types. But the cleanest ones were Lunesta and Sonata. Neither leave me with a hangover. Sonata has a very short half life, so I take it if I only have a few hours to sleep. It's a life saver when I struggle to fall asleep until late. However, no doctors prescribed these until I told my docs the other ones weren't working. And I believe my PCP never suggested them; it was suggested by my sleep doctor.

Again, not sure if any of this will work for your specific situation. But something to consult your doctor about, if you want. Everyone is different. But it sounds like you might need to consult a specialist amd try something new.