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Insomnia and other sleep disorders

That feeling when you’re tired all day, you lie down to finally get some rest and you’re suddenly wide awake. Hypersomnia, parasomnia, insomnia, why does sleep have to be so complicated? Some days you want your brain to shut off and it fully agrees with you until the second it’s time to do just that. Unfortunately in life there are no easy answers, as much as we wish their were.

So what’s with all the -somnia anyway?

Well for those not in the know, lucky you. Insomnia is the inability to fall asleep, or at least not be able to fall asleep easily. Parasomnia is restless sleep, sleep talking is a good example. Now hypersomnia, that’s a fun one. When you hear the prefix hyper, feel free to think overdrive, now if the suffix -somnia means sleep, you basically have a simple definition. Always fucking tired.

Now me, I get to enjoy a combination of the three. To be fair, parasomnia isn’t so much of an issue these days. Thankfully, I can enjoy the full extent of my nightmares without having to wake up or thrash about most of the time… thankfully…? I still deal with it from time to time and on occasion I’ve had sleep paralysis to deal with, which sucks.

Hypersomnia is a fun one because it means I’m tired all the fucking time. I’m sure to a certain degree we all are, especially now that we’re on year 2104 of the pandemic, the world is burning, people are dying, other people don’t give a shit, and time ultimately has no meaning anymore.

Hypersomnia is the reason why in the course of a single day I will single handedly consume enough caffeine to cause an elephants heart to explode. Oh and fun fact, more often than not I’ll still feel that pressure to sleep even though I’m shaking like I’m going through withdrawls. Brains are fun kids. Unfortunately there’s not a lot I can do with it and doctors like to blame the PTSD, depression, other xxx mental health condition, it’s my sleep, it’s due to my TBI, it’s bad sleep hygiene, it’s always the fault of something else and not a stand alone issue.

Then after a long hard day of trying to stay awake long enough it’s finally time to climb into bed, wind down and go to sleep. Except now I’m awake. Yeah that’s a fun one too. My insomnia isn’t as consistent as my hypersomnia. You would think it’s all the caffeine, but I have routinely tried no caffeine days, weeks, etc and then I just get to suffer fully on both ends and that’s not fun. Caffeine has never really done much for me in terms of “waking me up” and it turns out it doesn’t do much to keep me awake when it’s time to sleep, my brain can (and does) do that all on it’s own.

If I had to choose I would take insomnia over hypersomnia any day, unfortunately I don’t get a choice in the matter. Is this just me complaining about my health issues? Probably, but hey it’s my blog I can complain about the struggles of life while I try to get my PhD. The crappy part about the whole ordeal isn’t even so much that I can’t get doctors to take me seriously, or to give me the help I need. The extra crappy part is that I found relief… once.

For about a year or so I was regularly medicated with something that helped. Looking back it was the first, and so far only, time in my life where I felt remotely normal. After a lot of back and forth with the only good psychiatrists, before she went to private practice (because of course she would working for the VA), she… I wouldn’t say forced, but pushed other doctors to prescribe me modafinil. With the new prescription came a new doctor since she couldn’t prescribe it directly, a new doctor who I hated, but that’s besides the point. This was a golden year for me, for once a medication did what it claimed.

Like I said, I felt more normal than I had my entire life. It didn’t just help me not feel tired, it literally helped my depression more than any of the antidepressants I’ve taken too. Weird, but true and after I was taken off I researched it because I didn’t notice the change until after the fact. Turns out I’m not the only one who noticed and there are some studies showing this effect with hard to treat depression like mine.

Then between a few moves, other new doctors, and apparently missing an appointment (which I found out about years, with an s, after the fact) my medication was abruptly no longer being refilled despite the requests and no one bothered to explain to me why. Like I said, I am not a fan of that doctor or the clinic I had to go to for that prescription.

Since then I’ve been struggling (see: begging) to find a doctor to just give me the medication that gave me so much relief. Ironically it’s non-addictive, gave me zero side effects, and you can’t abuse it or get high from it, or anything weird, but super hard to get prescribed. What the problem is, I have no idea, but I think part of the issue is it’s taboo for patients to request medicines specifically. Thus my pleas are often answered with sturn frowns. It’s sad to have something that so completely fixed this major issue in my life taken away without any real thought, but here we are.

Oh and today’s post is brought to you by the fact that I got like three hours of sleep last night. Which you would think would make the hypersomnia worse, but strangely it’s always at a pretty constant level. It does make concentrating harder and waking up tomorrow will suck, but thankfully it’s the weekend so I’ll have the day to recover. It’s nights like last night that make me thankful that I don’t work a normal job. I still have work to do mind you, but I can at least have the morning to get myself in a position to do some work.

I share my story because, well, I’m hoping that by making enough noise maybe someone in a position to do something will realize that sometimes the -somina is the cause of the problem, not a symptom. It can be its own standalone condition without needing something specific to cause it. Brains are like that sometimes, people are squishy and forcing everything into a nice little defined box just doesn’t work.

8 responses

  1. Aw, keep trying. Somebody’s got to listen sooner or later. Even if the sleep issues aren’t causing your other problems, it stands to reason you would just plain cope better when you don’t feel exhausted all the time. Have you gotten a chance to use your health benefits and go to a not-VA doctor yet?

    Now I’m a little worried about you, drinking all that caffeine. You have to do what works for you of course, but frequently taking so much that you get the shakes can’t be good for your body. Are you sure it’s not making your fatigue worse via dependency?

    When I was having my autoimmune neuropathy issues last year, I (who have not darkened medical doors much) hoped I would go to my first appointment, describe what was happening, and come home with some pills. I was sorely disappointed. I tried to get doctors to give me gabapentin or prednisone – just to see if they worked – while I was waiting (weeks) for test procedures and a diagnosis. But no, that was not allowed, due to the risk of side effects. (And one guy also said that in case I had something big, like MS or MG, he didn’t want to suppress the symptoms and possibly interfere with diagnosing it.) The main risk I was worried about was the chance of accumulating long-term nerve damage while I crept through the diagnostic process, but I wasn’t visibly impaired (yet), so nobody seemed to care. After none of the “standard” tests turned up anything, I finally got the prednisone, and even then doc seemed queasy about prescribing it to me. “Well, it’ll be an off-label use, since I haven’t diagnosed you … but it works for the Bell’s Palsy patients, so we’ll try it.” I was about ready to scream at someone to JUST GIVE ME MEDICINE.

    I felt very neglected. But in hindsight, and given some of the stories I’ve heard since (particularly from you) … I might be lucky that they even believed me and ran me through the tests at all, and that I eventually got a (tentative) diagnosis. I was dumped on the sidewalk and ignored for weeks, not months or years. Quite a few people don’t even seem to get that much.

    Anyway, I hope you make it through the weekend okay and still manage to clear your to-do list. Sorry that you had a bad night. Stay strong.

    Liked by 2 people

    January 29, 2022 at 4:11 pm

    • Yeah it’s a tricky business getting help, especially when so many of my other diagnoses lead doctors to assume one of them is the cause.

      I’m sorry you had to go through all that just to get a moderate amount of help. I think doctors forget that “do no harm” doesn’t mean do nothing because sometimes doing nothing is more harmful than trying to help. Then again I’m not a doctor, so what do I know. I sincerely hope you get the care you need though.

      Don’t worry too much about the caffeine intake, I try to avoid getting the shakes. It’s just a way for me to tell I’m over caffeinated, which for me is hard to gauge. I routinely try going days/weeks without, but usually it’s detrimental so finding a good balance has been my focus (even if the quantity consumed is still comically large).

      I have not had a chance to get a lot of care outside the VA yet. COVID has made doctor appointments (at least in my area) hard to come by. I’ve started the process, but it will probably be months or even longer before I get the care I really need (after initial visits, tests, more visits, etc.).

      I’m feeling better today thankfully, yesterday felt like I was going through a fog though, I hate those days. Luckily those days are far and few between (at least these days).

      Liked by 1 person

      January 30, 2022 at 11:01 am

      • Glad to hear you’re feeling better today. Want you in good shape.

        Thank you for the well-wishes. I did eventually get to a neurologist who had a clue what was going on, and did an NCS/EMG test that actually detected the issues, and he’s been monitoring me since. So I think the medical profession is at least doing what it can do for me at this point.

        The prednisone turned out to be one of the recommended treatments for what I probably have (ha!), but there are people it doesn’t work for, and I appear to be one of them (boo). The main thing the neurologist did was reassure me that the damage was “minor,” and my immune system might stop rampaging and let me heal up on my own. Which I have been doing; I’m far better off than I was last June. It’s just taking a very long time for the last little bits of it to fix themselves.

        Liked by 1 person

        January 30, 2022 at 12:10 pm

      • Yay! I’m glad you found a neurologist who took you seriously! Recovery can take a long time, but I’ll keep my fingers crossed for you.

        Liked by 1 person

        January 31, 2022 at 12:06 pm

  2. When it comes to sleep, I instantly think of death! I don’t know why but that’s my default thinking. I suffered from sleep paralysis as a kid I completely kept it a secret from my family just researching how to fix myself!!
    Sleep disorders like you said are always attached to major mental health issues but that knowledge doesn’t bring comfort if anything it is more confusing! Reading through your post made me remember how much pain and agony sleep brings, people think sleep is a resting state but for others, it isn’t’, we’ve never for once rested in sleep cause for us it’s a constant battle!
    My sleep disorder was sleep paralysis, but I can only imagine you going through multiple sleep deprivation! It’s not easy or palatable to experience.
    Thanks once again for your post

    Liked by 2 people

    May 21, 2022 at 1:13 am

    • Ugh sleep paralysis is terrifying. Luckily I’ve had to deal with that a handful of times (if that). Thank you for sharing your story and I hope you find peace, or at least restful sleep! It’s a struggle for sure.

      Liked by 2 people

      May 21, 2022 at 7:41 pm

  3. grimsmom

    Your sleep struggles sounds much like mine. Did you have the daytime sleep study, the MLST? I have Idiopathic Hypersomnia. It took me from Junior high until I was 36ish to find a Dr to take me seriously and order the sleep study which diagnosed it. Modafanil was my best friend for almost 2 years, allowing me to at least function most days…and then it stopped working. We have not found anything else that helps.
    Sending you thoughts of good luck and answers.
    PS- my husband has VA medical and we cannot stand it! Thankfully, it is a secondary insurance for us.

    Liked by 1 person

    August 28, 2022 at 3:37 am

    • I’m sorry to hear! I’m happy to hear you had someone take you seriously though. I’m a big fan of modafinil, but I’m sorry to hear it stopped working for you. I hope you find some relief, sometimes if you go off of it for a bit it starts working again, just a thought. I know you can build a tolerance to it fairly quickly (from what I’ve heard anyway).

      Glad it’s not just me!

      Like

      August 29, 2022 at 11:34 am

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