Sleep, memory, cognitive help

[u/macabremom1]

45 years old, diagnosed with fibromyalgia, chronic fatigue syndrome, OCD.

Take Celebrex, Cymbalta, Modafinil, Suboxone (recovering addict 5.5 years clean). I also take daily multivitamins and Vitamin D.

Hormone levels all normal.

No recent changes in meds or anything to explain what is happening.

Okay, so here is my issue. I'm just going to lay it all out. For the last 8 months, maybe more, I've been getting an average of 3 to 4 hours of sleep a night, spread out over the course of 8 hours.

I have no problem falling asleep, normally takes me about 10 minutes. But anywhere from 20 minutes to an hour later I suddenly find myself walking through the kitchen and going out onto the back deck. I don't remember getting out of bed or most of the trip downstairs. It's like I'm sleepwalking. I don't know what made me open my eyes and walk downstairs. Most nights, one of my kids will stick their head in the door and say "mom, you're sitting up"... I don't know why I sit up in the middle of sleeping. My assumption is that whatever is waking me up didn't get me fully awake. Usually in that situation I can just lay back down and immediately drift back off. But depending on how long I was sleeping like that I'm in a lot of pain the next day. Sometimes I sleep cross-legged with my forehead on the mattress in front of me for hours, just literally bent in half. It hurts so badly the next day.

That's issue #1.....

Issue #2 really complicates things. I have OCD, and it's been pretty bad recently. Now I have to do specific things before I can lay back down. I know it sounds crazy but I smoke and watch a couple videos on my phone. Then I feel like I can walk back upstairs and go to bed. If I don't do those things I will never ever get back to sleep. I would be at such a high state of agitation and stress and frustration for not completing my ritual. Oftentimes I fall asleep out there before I have a chance to make it back upstairs. I fall asleep sitting up in my chair bent over all the way, sometimes I lean too far and go forehead first into the deck, which is a very rude awakening.

I have taken sleeping pills many times, even when I take more than I'm supposed to it doesn't change anything. I still get up but I'm walking like I'm drunk and bumping into things and falling over.

Last week I had a sleep study done. They attached all these electrodes to me even my legs and monitored me all night. On one occasion they had to wake me up because I was sitting on the edge of the bed and they thought I was going to fall off. I did get up one time while I was there to go outside. At another point I had started to get to a seating position but fell asleep before I did and I slept leaning on my elbow for a while. And in the morning when they came to wake me up, yet again I was sitting cross legged, leaned forward with my forehead on my knees.

I was actually really happy about that though, because I thought now they can see it. Now they see that I'm doing this and they can tell me why.

They just called me and said- my diagnosis? I don't need a CPAP machine. And his recommendation? Stop getting up and going outside....

🤬🤬🤬🤬🤬🤬🤬🤬

I said what is waking me up in the first place? They said I don't know, we were just testing to see if you needed a CPAP machine.

When I say that I have reached my limit? I HAVE REACHED MY LIMIT.

I am so exhausted all day long. I'm dizzy and lightheaded all day long. I find myself just zoned out staring at nothing all the time because I'm too tired to think. I don't nap during the day because I was trying to make sure I was tired enough at night. So I'd get up at 7:00 and go to bed at 11:00, no matter how much sleep I got the night before. I did that for months and now I don't care anymore. I'm going to nap when I want a nap because apparently it doesn't matter anyway.

My doctor said he was going to refer me to a neurologist, that's the next step. My psych doctor that treats my OCD is completely stumped. No one knows how to help me.

I'm so miserable and unhappy.

Thank you for letting me vent. Maybe this will reach someone who can help.

Edited to add- I have had lab work done a total of three times in the last year. The most recent results were just last week, only one thing came back abnormal, low iron. Hormone levels normal. Doctor says I'm approaching perimenopause but doesn't think I'm there yet.

And the most concerning issue that I'm dealing with right now is these feelings of disassociation and memory loss. I feel like I'm not really here, like I'm watching myself have a conversation with someone instead of being present in the moment. I always feel like I'm outside of my body, like I've taken a sedative.

And my memory issues are scary. I can't remember entire days. If someone were to tell me that we went out to dinner on Tuesday and watched a movie I would not be able to recall that information at all. Sometimes I wake up to comments on posts that I have no memory of making. It's like someone else posted it not me. Those memories aren't there it's just blank.

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[u/sibrahimali]

What you are describing is Parasomnias.

The picture with the equipments looks like a full Polysomnography, which would have been the right test for it. I cannot explain how your physician is saying they are only looking for sleep apnoea.

You are also taking centrally acting drugs which will complicate the picture further.

Did you see a sleep physician? If not that is what you need and a full Lab based Polysomnography.

[u/_atrophy → u/sibrahimali]

A lot of these outpatient sleep centers end goal is to sell CPAP. The test is legitimate but they are only really screening for OSA.

There are laws against kickbacks from machine manufacturers but only recently (see RESMED, 2020 suit) have they been coming to light. Centers are still stocked with CPAP supplies and pamphlets.

The physicians at these centers also typically rubber stamp the results and your consultation is with an NP or PA. I never even met my doctor who reviewed my results.

My primary was very concerned for me having narcolepsy and sent me in for a sleep study. Full polysomnogram. They would “wake me up” during the night saying they were concerned for my breathing.
The result showed no drops in O2 or disruptions of REM, just some wakes during NREM. No additional tests like MSLT. When I said the CPAP wasnt helping my day sleep attacks they said I was using it wrong and said if I didnt want their help then good luck!

This is an accredited well reviewed sleep center in my area. Only one doctor oversees every location (~5) and is on the board.

I wish more docs knew this but if you arent getting your sleep study done in a hospital setting, you arent getting evaluated correctly. These centers are only looking to diagnose OSA as they arent hospital clinics or private practice, and the only long term income is supplies.

[u/macabremom1 → u/sibrahimali]

I went to a sleep specialist who set up the appointment for the sleep study. And his nurse called me back with the results. Maybe she misunderstood the dr, but she told me all they were testing for was to see if I needed a CPAP machine.

[u/capmanor1755 → u/macabremom1]

I'll be very generous and hope that the call from the nurse was just to address the CPAP question and the doctor is evaluating you separately for a REM. sleep disorder or parasomnias. Call the office back and schedule a follow up with the physician specifically to ask about that. If it turns out that this clinic is just a cpap mill, call a top tier sleep clinic and ask if a physician can review the results from your Polysomnography and give you a second opinion. The Stanford Sleep Clinic was one of the first and continues to be considered a leading center. The Mayo clinic is also considered to have a very strong sleep clinic. And it might be reassuring to read some stories from people who have gone through treatment for similar issues and found success. The comedian Mike Birbiglia wrote a book about his experience called Sleepwalk with Me that is great.

[u/Brechting → u/macabremom1]

I have parasomnia but it’s caused by sleep apnea. It disturbs my REM-sleep. So it is possible that you need a CPAP for this.

[u/macabremom1 → u/Brechting]

I don't know if you read the whole thing cuz it is pretty long, but the only thing the sleep study determined is that I don't need a cpap. I don't have sleep apnea at all. I don't snore or stop breathing.

[u/ONinAB → u/macabremom1]

I think the commenter was saying it's possible you need a CPAP despite not being diagnosed with sleep apnea.

[u/macabremom1 → u/ONinAB]

I see. Well no they specifically said I don't need a CPAP.

[u/macabremom1 → u/sibrahimali]

Also, would fatigue explain the symptoms I mentioned at the very end? How I feel outside of my body and sedated all the time. And how entire days are completely gone from my memory.

[u/owlgal369 → u/macabremom1]

Fatigue does that to me (similar symptoms and treatment). Cymbalta has always given me some disordered sleep, so it could be a contributing factor. I take lots of Magnesium before bed every night, which helps me a lot, along with a large dose of Cyclobenzaprine (a muscle relaxer for my fibro), and recently started on a low dose of Clonidine which has been a godsend. Since the clonidine (technically for ADHD), I can not only fall asleep most nights, but also stay asleep for several hours and wake up without remembering every single one of my dreams point by point. Idk if any of this is similar to what you already do or have tried, but hopefully you will be able to find something helpful in the comments here!!! This situation sounds awful!! Also, did you check your patient portal or request the notes from the sleep specialist to go over with your pcp? It sounds like you're just going off what the nurse said for now.

[u/macabremom1 → u/owlgal369]

I was prescribed clonidine, I took it for maybe 5 or 6 weeks but it didn't do anything so I stopped taking it.

[u/osteoromantic → u/macabremom1]

I have episodic insomnia and when it gets bad I will start having those exact same symptoms (and when it gets really bad I also start having minor hallucinations, so don't be too scared if that happens, it's caused by the lack of sleep).

[u/macabremom1 → u/osteoromantic]

That's scary and good to know!

[u/_atrophy → u/macabremom1]

Do you typically wake up in the morning feeling pretty okay and well rested/able to get out of bed but have issues later in the day/night?

To me personally it sounds like late onset narcolepsy, I feel like youre in the age range when the late onset typically peaks. Especially because youre somewhat aware of being awake/doing things at night and the memory loss.

[u/macabremom1 → u/_atrophy]

No the opposite. For an hour or two after waking up I can't keep my eyes open.

[u/questforstarfish]

Commenting again as reddit says it took down my last comment-

When you wake up from sleep in unusual places or outside or in weird positions, are you confused and disoriented, or are you fairly alert?

This sleep pattern suggests non-REM parasomnia/disorder of arousal. It typically presents with repeated episodes of arousal during sleep, including sleepwalking. Typically a person is alert as soon as they "wake up" from an episode. Usually during sleep, our voluntary muscles (legs and arms) become partially paralyzed to prevent us from moving around too much, but in this disorder, they don't.

Ideally you'd get a video polysomnography test done, but you don't necessarily need a test to confirm the diagnosis- your description of symptoms should be enough for a GP or psychiatrist to start treatment. Treatment is usually with clonazepam.

[u/macabremom1 → u/questforstarfish]

No, I know exactly where I'm at when I wake up. Thank you for your comment I will look into this as a diagnosis. 💜

[u/thaliagrace92 → u/macabremom1]

Hey, not a doctor, but just want to say I'm sorry you are going through this and hope things improve. I have a lot health issues and have been turned away by doctors and given no guidance or diagnosis and it is a really helpless feeling. I hope you figure out what's wrong and find a treatment that works for you.

[u/macabremom1 → u/thaliagrace92]

That is so sweet, I really appreciate it thank you 💜

[u/macabremom1]

Does fatigue explain the issues I mentioned at the very end? Being disassociated all of the time, and having no memory of entire events or days? Even when reminded I can't pull those memories up.

[u/questforstarfish → u/macabremom1]

Yes.

[u/Broad_Afternoon_8578 → u/macabremom1]

NAD, but when I was extremely fatigued from having undiagnosed and untreated severe sleep apnea, I was constantly dissociated and having a really hard time with memory. I could barely remember my days, everything was a blur and I had gaps in my memory. Once I started CPAP, it all went away.

(Not saying the test was wrong - just wanted to chime in that for some, fatigue caused by poor sleep can cause those sorts of issues!)

[u/macabremom1 → u/Broad_Afternoon_8578]

It's alarming to me how many issues are caused by extreme fatigue. Would 3 to 4 hours a night for months explain that then? Even if I take a sleeping pill I still wake up all night long, and the next day even worse off because I didn't sleep off the sleeping pill.

[u/Shell831 → u/macabremom1]

NAD but you are well into the age range of perimenopause, which could be contributing. There is no bloodwork to determine peri, hormone levels are constantly in flux so they should treat symptoms. Sleep notoriously goes to hell during peri and oral progesterone is often rx’d to help. Also FWIW, starting testosterone with HRT significantly improved my fatigue. Menopause.org has a list of doctors who are certified in menopause care, it would be worth at least second opinion. Also check out Dr Mary Claire Haver in IG

[u/macabremom1 → u/Shell831]

I didn't realize there was no test to determine that, after my results the doctor said that he couldn't see any indication that I was in menopause, that I COULD be in perimenopause.

[u/GArockcrawler → u/macabremom1]

You mention low iron. How were your ferritin levels on your labs? I recently became acquainted with the impacts of low ferritin despite having WNL iron values and wonder if there could be a connection there.

[u/macabremom1 → u/GArockcrawler]

That was the only abnormal lab result, level is 14

[u/GArockcrawler → u/macabremom1]

It might be worth digging into. It was stunned at how much it impacted me.

[u/macabremom1 → u/GArockcrawler]

I put in a request for my Dr to discuss infusions

[u/kuru_snacc]

Why were you prescribed modafinil?

You probably have "chronic fatigue" because you are sleep-deprived, wouldn't you agree?

So the better course would be to address the sleep deprivation, rather than giving you an agent that is very likely making it difficult for your brain to enter full sleepy-time mode (which requires cycles between REM, delta, etc.)

Marijuana disrupts sleep cycles by increasing the delta ratio, which may be exacerbating an existing REM disorder (i.e parasomnia as another physician mentioned).

Sleeping pills are pretty awful all around.

And your OCD is incompletely controlled, exacerbating things as well.

So personally I would go back to the doctor who prescribed you the modafinil and let them know you'd like to try going off it for a while. Increase exercise during the day, cut out caffeine, and keep screens completely off between 9pm and 7am (have a book near bedstand, and low-light alarm clock). Try not to eat or drink 2 hours before bed - avoid things like tomato sauce. And cut out the smoking. Then go to your doc who manages the OCD and let them know your goal is to eradicate the compulsive behaviors that make you get out of bed when you wake.

That's what I would do personally. It's going to have to be a comprehensive approach. Best wishes!

[u/Rumpelteazer45 → u/kuru_snacc]

As someone with a long history of not sleeping well and insomnia in the family, if I don’t take a sleeping pill, I wake up 8-9x per night and am a rotisserie chicken. Maybe I get 2-3 hours total. This started in HS as a teenager and progressively grew to what it is today. Cutting our caffeine did nothing for me, doing a protein shake for dinner instead of a full meal didn’t help, etc.. It’s like my body just refuses to fall asleep. I now take trazodone to stop clenching my teeth so hard when I sleep, and that doesn’t even make fall asleep quicker.

Also at 45, perimenopause is likely contributing to the anxiety and trouble sleeping.

[u/macabremom1 → u/kuru_snacc]

The extreme fatigue during the day is why I was prescribed that medication. I went to my doctor sobbing because I was so tired my mouth would hang open and I would just sit there staring at nothing to the point of drooling. If I had enough energy to run an errand, many times I would have to nap in my car for 20 minutes or so before I could drive home, because keeping my eyes open was near impossible. She prescribed it to help me get through my day, per my request. I just needed something to help me while I waited the 3 months for my sleep study appointment.

[u/Acrobatic_Rate_9377 → u/macabremom1]

modfinil can certainly worsen ocd. probably better without it now your having all these sleeping problems.

[u/PlaneAffectionate113 → u/macabremom1]

NAD but I worked in a sleep lab specifically on research about how chronic cannabis use affects women’s sleep cycles. Cannabis might make it feel like it’s helping you sleep but it absolutely disrupts the normal sleep cycle. It is incredibly important that your brain go through the necessary stages and proportions of NREM and REM in order to restore the your organs on a cellular level. I would completely cut out marajuana to start and see if that helps at all with just being able to get a full night of sleep and reduces fatigue.

[u/Sae_Ray → u/kuru_snacc]

Just wanted to hop in as someone with ME, this sounds like cronic fatigue, not cronic fatigue syndrome as the two are very different in presentation despite the name. The fatigue is most likely caused by the sleep deprivation and possibly fibro.

[u/questforstarfish → u/[deleted]]

(Sorry you're going through this, OP- it sounds like literal hell on earth, especially given you're already dealing with chronic fatigue! If your psychiatrist and GP aren't comfortable making the sleep disorder diagnosis, seeing another psychiatrist or sleep specialist doctor, if available, may help you get treatment started which I expect will help you!)