Help me rejoin the land of the living.
July 17, 2014 8:30 AM   Subscribe

I've been diagnosed with idiopathic hypersomnia - which means I sleep too much and nobody can figure out why. With the diagnosis, I was essentially told that there's nothing the medical establishment can do for me beyond prescribing modafinil [Provigil]. Provigil only works a little for me, and is extremely expensive. I am currently disabled by my oversleeping (11-16 hours a day) and my inability to wake up before noon, and it's sort of ruining my life. I feel really let down by my doctors and hopeless about the future. Is there anything else I can do to manage this condition and/or my life with it? Way too much more inside.

Special snowflake details which might be useful or might just be obnoxious:
- Yes, I practice all the aspects of good sleep hygiene you can possibly think of, and then some.

- It is NOT due to: sleep apnea, restless legs, narcolepsy, or chronic fatigue.

- Confounding factor: I am severely depressed, and have been since around February 2013. The sleep issues did not become a major problem until about May 2013, but have since become progressively worse (along with the depression). I can correlate the depression with the hypersomnia, but I cannot determine whether one is causative of the other (I have experienced each without the other, but more frequently they are correlated). I am in treatment/on medication for the depression, but have only been able to reduce its severity a little.

- Confounding factor #2: I also have delayed sleep-phase syndrome. If and when I ever have a "normal" day (where I feel like a normal human being, rather than a particularly listless and sickly slug), it can be difficult to get to sleep at night, as my natural preference is to sleep around 3-4am and wake at 11am-noon. The depression medication I'm on helps with getting to sleep, though, so I don't see it as a big contributor to my current problems.

- I have done 2 overnight sleep studies, one at home and the other in a sleep lab. Both showed "normal sleep architecture" and no apnea.

- An MSLT (multiple sleep latency test) was also done. Result: Positive, meaning that I fall asleep in significantly less time than a normal person during the day when given the chance, but there was no REM-onset sleep, which means I do not have narcolepsy.

- I am deep-down bone-tired all the time. I do not, however, fall asleep randomly throughout the day; once I am up, I'm up, and I can make it through the day unless I sit still with nothing to keep my attention or lie down on a couch or bed. Driving is not a hazard for me. Tired, not sleepy.

- Waking up in the morning is my biggest issue. I routinely sleep through upwards of 15 separate alarms with no memory of having heard them at all. I have slept through final exams and important life events. When I do wake up, it is physically painful for me.

- The last major bout I had with this issue was from 2004-2005. Some days during that period were worse (my personal record: 27 continuous hours of uninterrupted sleep), but the overall episode was much shorter (~9 months as opposed to ~18 and counting this time around). In between the end of that episode and the beginning of this one, I was able to hold a job starting at 8:30am for years at a time. That sort of thing is now completely impossible for me.

- Caffeine helps, but ramps up my anxiety really badly.

- Provigil (modafinil) helps, but it's very cost-prohibitive (and no, purchasing it quasi-legally from overseas is not an option).

- Currently I am sleeping around 12 hours a day, although now and again I'll have a bad day where I'll wake up at noon and then be out again by 8pm. It feels like this is just a build-up of sleep deficit that causes these bad days, but there should be no sleep deficit occurring when one is sleeping 12+ hours a day!

- Given my inability to wake up, strategies like blue light therapy have been total non-starters for me. If I'm able to wake up at all, it's usually barely in time or 10 minutes late for wherever I'm supposed to be; trying to wake up an extra 30 minutes early so that I can sit in front of a light just isn't doable at this point.
I feel like a failure because I'm so completely unable to cope with normal life at this level of energy. It's exacerbating the depression big-time (or they're feeding off one another, anyway). I'm wasting my entire life sleeping, and I have better things to do! I am better than this. It's profoundly depressing to know that I am a smart, capable, amazing person who... isn't smart or capable or amazing at all right now, because of this issue.

TL;DR: Has anyone dealt with idiopathic hypersomnia and figured out effective ways of coping? Is there anything else beyond caffeine/modafinil/good sleep hygiene that I can try? Are there any other potential causes that I should look into? Do I just need to adjust my attitude and realize that this is my life now, and that I need to learn to live with it? And if so, what are some good strategies for accepting this disability and carrying on?
posted by po to Health & Fitness (37 answers total) 13 users marked this as a favorite
(I do not have this problem. Just throwing a couple things out there: 1. Can you put blue light on a timer? 2. If you scroll down, here's someone who used research to supposedly eliminate delayed phase sleep:
posted by zeek321 at 8:48 AM on July 17, 2014

Have you experimented with your diet? I have a friend who has been through similar symptoms, and adopting a diet along the lines of Paleo has worked for her.

You can try this for yourself, or see a Nutritional Therapist/Dietitian, I'd recommend the latter as they might be able to help you see results sooner rather than later.
posted by greenish at 8:49 AM on July 17, 2014 [4 favorites]

I went through this. I slept 12-16 hours a day through my late teens and early twenties which resulted in disability (couldn't work or go to school) and severe isolation. It was really bad. I also went to sleep in the early hours of the morning and woke up in the afternoon. The cause for me turned out to be the medications I had been prescribed. I was taking antidepressants, mood stabilizers, stimulants like Adderal and Provigil (which also didn't make much of a difference for me), and benzodiazepines. The amount of drugs I was on had been slowly creeping up since the age of 13 - my doctors' response to my symptoms was to just give me more drugs, which made things progressively worse.

I stopped taking antidepressants and noticed a HUGE difference, going from 16 hours of sleep to a normal-ish 9-10 hours daily. Plenty of doctors will not recognize that antidepressants can worsen depression and hypersomnia for some, but it happened to me and others that I know. I gradually reduced the rest of the drugs I was on as I continually improved. Today haven't taken any psychotropic drugs for 4 years and have had no adverse issues with sleep or mood during that time. I've still never gotten a satisfactory medical explanation for what I went through, but the drugs did dramatically negative things to my life and I won't touch them now. The book Anatomy of an Epidemic by Robert Whitaker is something I'd recommend if you're interested in exploring the possibility that your problems might have (at least in part) an iatrogenic cause.

Anyways, that was what worked for me. Feel free to MeMail me if you have questions or would like some support and I hope things start getting better for you soon.
posted by horizons at 9:01 AM on July 17, 2014 [3 favorites]

I strongly recommend that you get a second opinion, and I recommend you get it from the Mayo Clinic. The Mayo Clinic will give you a comprehensive workup, and they offer several programs for people who suffer from chronic fatigue, fibro, and ideopathic hypersomnia. The Fibromyalgia and Chronic Fatigue Clinic offers a three day class for people who suffer from Chronic Fatigue, Fibromyalgia, and Ideopathic Hypersomnia. Meanwhile, the Pain Rehabilitation Center (PRC) has three week long intensive program for people who suffer from these conditions. The program provides an integrated approach and includes physical therapy, occupational therapy, and more. (I should note that PRC has a very long waiting list, so you should call them ASAP if you are interested.)

I also wanted to offer you some encouragement and support for what you are going through. I am so sorry that you are going through this, but please know that you are not alone. Like you, I suffer from fatigue. I spent five years searching for a diagnosis before going to the Mayo Clinic. They performed a full work up and finally diagnosed the cause of my fatigue. I have taken the three day class I mentioned above, and it gave me tips and tools I need to manage my fatigue on a daily basis. (I am on the still waitlist for the PRC course.) While things are not perfect, I'm on my way to recovery. If you want someone to talk to, or if you need more information, please feel free to PM me.
posted by emilynoa at 9:21 AM on July 17, 2014 [2 favorites]

Hypothyroid causes hypersomnia. Given your unusual medical history, best to work with an endocrinologist, who might also think it wise to test your cortisol levels.
posted by Jesse the K at 9:21 AM on July 17, 2014 [2 favorites]

I've always slept loads more than anyone else I know. Yep 15 hrs in late teens when very depressed. I always framed it as a coping mechanism. Not the best but not the worst.. or like a mammal in hibernation.

Maybe worth reading up on developing other coping mechanisms if you identify with that at all.
posted by tanktop at 9:23 AM on July 17, 2014

There are two things that I would consider if I were in your shoes, and this would best be resolved by revisiting your psychiatrist:

-Trying a new med/modifying your medication for depression.It sounds like you currently have uncontrolled depression, and one of the signs that a med is working is if energy returns. So I would absolutely push for that as step one.So working the doctor to modify your medication for efficacy. You might already be n the middle of this process.

-This is the same approach as above, but slightly different. You tell your physician that you are experiencing this symptom, and you would like to optimize the medication so as not to experience this problem. The goal here would be to modify your meds for side effects, and in particular, energy/sleepiness. You might want to look at the PI for your medication, and within it, it should list the % of patients who experienced adverse events events with the active group vs placebo - if you see a high proportion of patients experiencing it, then it might be best to try an antidepressant that does not have as many patients reporting this as a side effect. Actually, some pharmacists might be willing to discuss this with you. You might want to consider talking to a pharmacist for suggestions, and then talking to your physician.

Assuming other physical symptoms have been evaluated already as that seems straight forward.

Good luck.
posted by Wolfster at 9:39 AM on July 17, 2014 [1 favorite]

hi! I have this problem as well, constantly tired but baseline-functional, same MSLT results but nothing "bad" enough for narcolepsy.

here is what is working for me: treating the depression, with meds and talk therapy. a really good psychiatrist, who was also open to prescribing stimulants to counter my constant tiredness. low doses of a stimulant have changed my life in terms of getting my ass out of bed and preventing falling asleep at my desk while at work. if you already have a psychiatrist, look for a better one if you need to! someone who is willing to throw lots of options at your problems and see what sticks.

treating the depression was HUGE and I was able to drop my stimulant meds by a lot.

things I tried that did not help me: strict bedtimes and wake up times, caffeine, blue light, provigil, thyroid hormone, [various specific antidepressants], not-being-on-antidepressants.
posted by ghostbikes at 9:47 AM on July 17, 2014 [1 favorite]

Sounds as if you could be one of those people who have idiopathic hypersomnia because they overproduce an endogenous benzodiazepine (endozepine).

Latkes made an excellent FPP about this a couple of years back, and her primary link describes a person whose experience was very like yours.

This person (Kathy Sumner) was able to resume a normal life with the help of an off-label prescription of the rarely used benzodiazepine blocker flumazenil in specially prepared pill form, but it wasn't clear she would be able to continue to get it.

Yet there is hope, apparently:
To date the use of this medicine was in rare cases of benzodiazepine overdoses but due to recent studies suggesting the successful treatment of idiopathic hypersomnia with this medicine, the demand of this medicine is estimated to increase drastically. Researchers have recently suggested that the prevalence of idiopathic hypersomnia is higher, at least 1 in 800, which translates to about 400,000 in the U.S. alone thus suggesting a potential market for this drug.[3]
posted by jamjam at 9:53 AM on July 17, 2014 [2 favorites]

Are you me?

If so, you're still too fat. Look into intermittent fasting, and try keeping a food journal for a month to investigate whether what and when you eat before sleeping affects how much sleep you need and how you feel on waking.

My own sleepiness is getting slightly better as I get leaner, though the delayed sleep phase is still way off-the-chart; normal head-down time is 5am, rising grudgingly and groggily at 1pm or willingly and refreshed at 2.

I am lucky enough to have a very understanding employer who has pretty much stopped complaining about the fact that so much of what they pay me to do ends up getting done at night when nobody else is around.

When I got my CPAP machine for apnea I was tipping the scales at 157kg. I'm down to about 128kg now and no longer snore, but I still find I need about an hour less sleep if I wear the CPAP compared to when I don't.

I can correlate the depression with the hypersomnia, but I cannot determine whether one is causative of the other

Lots of bodily issues are mutually causative.

One last thing: every now and again I'll get a regular exercise routine going, and once that's been in place for a couple of weeks I find myself waking earlier and less groggy. It's always been injury that puts a stop to that (when you mass 150kg+, tendon and ligament injury is pretty much par for the exercise course) so getting leaner has made regular exercise more maintainable as well.
posted by flabdablet at 9:55 AM on July 17, 2014 [2 favorites]

Honestly, some people require more sleep than others and while 12 hours is definitely on the outer edge of normal it doesn't seem untenable and doesn't have to interfere with your ability to live a normal life. What would interfere is if you are following what you describe as your "natural preference" -- falling asleep around 3-4 AM and waking up between 11 and noon. Have you tried Melatonin? Taken early enough in the evening (like 7-8 PM) it could help you to get to sleep early enough that you're still able to sleep 12 hours but also align with a more "typical" schedule.

I certainly empathize with you, I started suffering from chronic insomnia as a toddler. Seriously -- before my third birthday. It is still a problem, but Melatonin has been more helpful than any other pill or practice (prescription or not). It is available over the counter in the US and Canada [but I just read your profile and you're in Australia where it's prescription only, sorry! I would still strongly suggest looking into it].
posted by kate blank at 10:41 AM on July 17, 2014

When I went through my great depression. Which lasted 2-3 years, I could easily sleep 14 hours a say. So so easily.

Even now, if I am going through a rough time, I will get very very tired.

For me, if that happens- then I work with a strict wake up time and restrict naps. I will just go to bed earlier that night if I need to.

Aside: I worked at a supported residence where many people had "sleeping problems" but a lot of it was down to drug use.

So if you are smoking pot, definitely work with your doctor!
posted by misspony at 10:55 AM on July 17, 2014

I'm not offering this as anything more than a minor alteration, because you seem to be asking for deeper solutions, but I know people who take modafinil recreationally. Perhaps the US has stricter import laws, but it is perfectly legal to import prescription drugs to the UK. You can buy Indian-manufactured (and high quality) Modalert very cheaply through SE Asian vendors ($0.5 per dose). This might be nothing more than a slight aid to your wallet, but if the alternative is shelling out thousands of dollars on branded ones then it might be worth checking out import laws.
posted by nagoya at 11:04 AM on July 17, 2014

Po, Provigil (modafinil) is now available as a generic in the United States, meaning the price should be moderate or even cheap with insurance. When did you last price this medication? Were you getting the generic price? If it's been a while, you might want to check on how much the meds would cost you now. Importing from abroad should not be necessary.
posted by reren at 12:35 PM on July 17, 2014

Seconding flabdablet - I have this same problem, though not to the extent you do, and it was way worse when I was on antidepressants. I now (medication-free) have a pleasant, welcome routine for a brisk 3-mile walk daily, and while that hasn't solved it entirely, it's been a huge help. When I have to miss a day, it makes a huge difference.
posted by mmiddle at 12:46 PM on July 17, 2014

What medication are you taking for depression? Some anti-depressants can cause excess sleepiness while some (thinking of bupropion here) are more activating.
posted by bobobox at 12:49 PM on July 17, 2014

This is where you are right now and this is where you have to be.

It sounds to me like the hypersomnia is closely related to the depression - some kind of neurological thing. Many people suffer from hypersomnia while they are depressed. The other time when people have incredible sleep needs is when they are healing. If you had an infection or you'd lost a quart of blood you'd probably be sleeping sixteen hours a day. I would focus on the idea that your sleep is your healing time and try to embrace it. Maybe, in order to recover from the depression your brain needs to heal and the sleeping is part of it.

You haven't always had hypersomnia. It has cleared up in the past. That means you have every reason to hope it will clear up again.

Depressed people often have wretched dreams and get no relief from their depression while they are sleeping. The same goes for people in a traumatic situation. They are scared during their waking hours and have nightmares while they sleep. You can try guided dreaming to gently encourage yourself to have healing dreams. This sounds flakey, but it works for me. Before falling asleep I tell myself firmly and kindly that I am going to have good dreams, healing dreams, dreams that will make me feel better. I am suggestible enough that this works for me and the dreams over a period of several nights start to become notably better and this in turn effects my waking mood.

Can you embrace you sleep needs and try to make your sleeping time special? I am thinking you could make your bed really comfortable, good quality sheets, perfect plump pillows, make sure there is nice breeze over your bed, maybe some aromatherapy scents if that kind of thing pleases you. If you regard your sleeping as a luxury that you are allowing yourself so that you can heal, rather than as an imposition that you can't evade, it will be better for your morale.

If you are spending a lot of time in bed, not quite sleeping but too tired to get up you can try to make this time better by having music playing in the background or by providing positive structure to your thoughts. Lately I've been having to stay in bed almost the clock around and I tell myself stories when I am too tired to sit up, so that I drift in and out of sleep for hours on end. I wake up and I think, what was that story again...? and then I just go on with it. Other things you can do is mentally revisit places you loved, from your elementary school to your holiday trips. This is assuming that you can direct your thoughts and they don't force you to go into unhappy channels.

There are a lot of people who have long commutes and work long hours or work a second job for peanuts and they don't have much time either. I would try to find the same kind of strategies that you would if you had to work 14 hour days, making sure to schedule time for recreation and maintenance and the pleasurable things in life. You can keep a kind of reverse to-do list, writing down all the things you accomplish around the hypersomnia, chores completed and time spent productively. That will give you something to look at when the depression tells you that the hypersomnia has crippled you so that you are getting nothing done.

Like someone with a handicap you need to find work arounds. There are certain hours when you will usually be awake. This is what you have to work with. For example instead of making appointments for 10 A.M. you are making your appointments for 3:30 P.M. Instead of planning to spent a hour running in the morning before work you need to reschedule for the evening and maybe even dial it back to a brisk twenty minutes stroll instead of a running session. If you are sleeping twelve hours that means you still have twelve hours to do things with. A lot of things are possible if you scale back your expectations and are patient with yourself. You could easily be sitting in front of the TV or randomly net surfing or doing facebook for five hours every day and leaving yourself with the same amount of time as you have from sleeping twelve hours.
posted by Jane the Brown at 1:21 PM on July 17, 2014

Wow, you sound EXACTLY like me from a few months ago. The only major difference in our symptoms is that I also have crippling chronic upper back pain.

I am doing much better lately, probably due to the following medications/supplements:
Celexa (citalopram): 40mg daily
Wellbutrin (buproprion): 150mg twice a day
Adderall (amphetamine salts): 10mg two or three times a day
Lodine (etodolac): 400mg twice a day (for the chronic pain)
Vitamin D: 1 prescription 50,000 IU pill weekly plus 1 over-the-counter 2,000 IU pill daily
Centrum Chewable multivitamin/multimineral daily

I began taking those medications and supplements in February and started feeling better in March, but then my cat died in April and I backslid into a pretty bad grief slump for a couple of months. I finally started feeling better again last month, and these days I am now awake for ~16 hours/day almost every day.

In addition to the medications and supplements, I've also been making an effort to stay hydrated and to immediately rehydrate upon waking. I put a big glass of water on my nightstand and force myself to drink the whole thing as soon as I wake up, before I even get out of bed. Sometimes I forget to set out my morning water and on those days I seem to be much groggier in the mornings so I think the water must be helping.

Another thing that probably helps is keeping my laptop next to my bed so that I can start making my internet rounds while I'm still lying down and only half awake. That little jolt of adrenaline from discovering that someone is WRONG on the internet is great for clearing out residual grogginess (thanks, MetaFilter). :)
posted by Jacqueline at 3:03 PM on July 17, 2014

I see that other commenters are mentioning weight loss and/or dietary changes as having helped them. On that note, while I don't know if it contributed to my recovery, I guess I should mention that I also lost ~30 pounds in the 2 months after my cat died (I wasn't consciously dieting, just grieving too much to bother feeding myself). Again, not sure if it's relevant to this condition, but it's another medically notable change preceding my recovery.
posted by Jacqueline at 3:14 PM on July 17, 2014

This covers only part of your issues but might be helpful nonetheless. You gotta start somewhere, right?

Dehydration can lead to increased tiredness and longer sleep. Really make sure to drink enough. This is something I struggle with and I sleep more/have less energy when I drink less.

Another thing is supplements: Omega-3 fatty acids help to fight depression. A multivitamin (with B12 and iron) and extra Vit D really help with energy levels as well.

I also have a delayed sleep window (ideal going to sleep time around 3am) and while it is swimming against the current so to speak, it really is not such a big issue. I have accepted that I am a night owl - I feel most alert and energetic in the evening/at night but am pretty useless for brain work in the morning - and try to arrange my life accordingly. We've been talking about coping and hacks in this thread.
Hope you feel better soon!
posted by travelwithcats at 3:15 PM on July 17, 2014 [1 favorite]

I also think it could very well be the your antidepressant(s). I had an issue last year where I couldn't feel awake until around noon. I feel asleep at my desk at work once and called in sick a few times. I didn't know this at the time, but when it went away it was after a change in dosages as well as the time I was taking my pills. In my case, I was taking one too late in the evening - I don't know how that works, but I wonder if it was affecting my sleep quality. So, it could be the specific med(s), the dosage and/or the time of day you take the pills. It's a tricky thing to figure out, if this is indeed your issue, and only trial and error can fix it.
posted by kitcat at 3:18 PM on July 17, 2014 [1 favorite]

Just thinking, could a sleeping pill (like zopiclone) at least help you get to sleep earlier and therefore, possibly, wake up earlier? It could be worth a try. It could help you keep the (morning) waking hours of the majority populace while you try to fix the long-sleeping issue. Hopefully you have a doctor like mine who says 'sure, you wanna try that? let's give it a shot'.
posted by kitcat at 3:28 PM on July 17, 2014

Can you sleep in front of a window that gets lots of sun in the morning? There is nothing better for waking me up than full-force sun on my face. If my bedroom is a dark cave I wind up sleeping too much. Not saying it's a cure-all, but it might help.
posted by the big lizard at 3:47 PM on July 17, 2014 [1 favorite]

I think it's time to get a second opinion. I have a different sleep disorder that is similarly pernicious and each of the three doctors I've seen since seeking treatment have had their own ideas about the cause and treatment of it. My experience was that each doctor got really stuck in their ideas of what the underlying cause was and would only treat that aspect of it, even when what they were trying wasn't working anymore. At this point it couldn't hurt to get a new perspective on what's going on with your sleep.
posted by fox problems at 6:53 PM on July 17, 2014 [2 favorites]

I too have idiopathic hypersomnia. I take Provigil but I used to take Nuvigil. I don't know how they're different - they're both modafinil - but Nuvigil made me Angry so I switched to Provigil. So maybe try the other thing and see if it helps?

You mentioned that it's expensive and I hear you but I previously filled out a form online that I took to the pharmacist from the manufacturer that saved me money on the prescription. I have health insurance but I think the idea was that if I was being charged more than $30 by the pharmacy to fill the prescription, the manufacturer paid the rest. You can also do mail order and have your doctor write you a prescription for more pills than you need. My doctor wrote me a prescription for 2 pills a day when I usually take just one so I can save some money and build up a reserve supply so it's not a crisis when my prescription runs out.

Another option might be a plain ol' stimulant like Ritalin or Adderall. Maybe if you just made that a thing where you take 1/2 a stimulant at 8 am every day to get you out of bed? Speaking of getting out of bed, this might be amateurish but have you tried drinking a big glass of water before bed? Then you have to get up to pee and then you're up, if you can stay up at that point. Ritalin and Adderall might not mesh with anxiety but if you just need a push to get up in the morning, that could work. You could supplement with 1/2 a Modafinil later in the day if necessary.

I also have major depression. Are you in treatment for depression? I take bupropion which has a stimulant effect on me. I've taken it for years and love it. Honestly, I had a similar experience where I felt depressed because on top of my depression, I was exhausted all the time and thought, if this is just how life is now, this sucks. But I switched from Nuvigil to Provigil and I actually had a moment where I thought, the drugs are working! It was great. I hope you have that experience some time too.

Finally, do you exercise? I know that when you're tired, that often sounds impossible but it helps me with depression and sleep because I sleep better after exercise, then need less Provigil.
posted by kat518 at 8:41 PM on July 17, 2014 [1 favorite]

Are you me? Because I struggle with this, and can relate with personal experience-based advice.

When I am not interested or enthusiastic about my life, and have no other way to escape or quickly make it amenable, I sleep quite a lot. I've heard of some people who quite disliked their lives during high school, but couldn't comfortably escape their entire adolescent experience...and they slept quite copiously. Their sleeping resumed to normal during college, after they...ah...escaped.

Personally, I find that when I don't feel very fulfilled, and am not moving directedly towards self-fulfillment, I sleep a lot.

For me, when I feel like I'm being passive instead of active, and letting my life drift away, I sleep quite a lot. And that in turn doesn't help me feel very substantively productive, either.

I consider myself in fair shape, try to exercise and eat fruits and vegetables, keep my mind somewhat intellectually stimulated, and practice loving kindness.

The missing link for me in holistic health is the active living part.

tl;dr Take on activities and life experiences that make you joyful. Don't skimp on "maintenance" (exercise, good eating, etc.). Remember to work on maintenance for your soul!
posted by tenlives at 10:21 PM on July 17, 2014

I've had similar issues. Sleeping too much makes me depressed. What about an activating antidepressant, like Protriptyline or bupropion?

Maybe also direct sunlight when you wake up. Or a light box.
posted by persona au gratin at 1:25 AM on July 18, 2014

Response by poster: Oh, wow, I never expected such a huge response to this. Thank you, thank you, thank you everyone, from the bottom of my heart. It means a ton to me that I'm not alone and that there ARE other things I can try. Seriously, who's cutting onions in here. Stop that.

I'll be looking into a lot of these fantastic suggestions, and have made an appointment with my psychiatrist in order to address the medication-related ones (bupropion in particular seems promising, as I've taken it in the past and it worked well for me, though I didn't have sleep issues when I was taking it).

A few answers to questions:
- I'm currently on Valdoxan, 25mg at night. Bupropion is not approved here in Australia for treating depression - it's only approved for quitting smoking, so I'd have to buy it off-label and expensively, though it is an option. I was previously also on Lexapro (escitalopram) 20mg/day, but I found it made the sleep issues worse, gave me terrible mental fog, and had little benefit, so I came off of it in January.

- The hypothyroid thing - it's the first guess every physician I've ever seen has made, since my mother has hypothyroidism, but I've had workups done several times, and my levels are consistently very normal (not even low-normal), alas. Are there other endocrine issues that might be in play, such that I should see a specialist again anyway?

- I do take a multivitamin and 3000IU of vitamin D daily, as well as an iron supplement since I had low-ish normal ferritin last time. These seem to help a little, but the issues continue.

- A paleo-style diet was suggested to me by a friend, but I have yet to take action on it - I am lucky enough to not struggle with my weight, and in fact I sometimes lose too much, as it's easier for me to simply not eat than to expend the energy to prepare healthy food when I'm tired like this (I know, that makes it worse - I'm trying to be good and eat food). Converting to a no/low-grain diet is really intimidating and I don't know if I could possibly muster the energy to start, let alone maintain it. :X I will look into it, though, to see if there are programs that could help me ease my way in (Paleo for dummies? Cliff notes?). I had a period when I was too exhausted to cook/eat, and I dropped down to 115 pounds/52kg (I'm 5'10!), which was scary, and something I'd rather not repeat. Currently 145 pounds/66kg.

- I do exercise and have something I'm excited and passionate about in my life - I'm lucky enough to own a horse, and am re-training her from the racetrack, so I clean her stable (1/2hr) and ride (average 45min) every day, rain or shine. The horse is most of the reason I get up at all, really, because I've got that to look forward to and because she needs to be looked after. I perhaps could be doing more exercise, though.

Regarding Provigil and its being off-patent or with manufacturer's rebates/discounts: I do not think it is off-patent here in Australia (where it is sold as "Modavigil"), to the best of my knowledge. I've asked around recently, and been told that ~$115 for 28x100mg pills is my only option from the chemists here (they don't even sell 200mg pills, and I need 200-400mg a day to get a benefit, which puts me at $8.50-$17.00 a day!). If anybody knows more about this, and/or whether it's legal to import, I'm happy to listen! I can't do anything shady, though.

Sorry that was really long again. I seriously appreciate all the thought and effort you've all put into these responses, and will be considering all of the suggestions. You guys are wonderful. Those who are struggling with similar issues, I wish you all the best, and hope that life gets better for you. It's a rotten thing to deal with, made worse by the fact that it's invisible and people seem to love nothing better than to make fun of it ("You really love your bed, don't you?" "I wish -I- could sleep for 12 hours," and so on...). Thank you again.
posted by po at 1:49 AM on July 18, 2014 [3 favorites]

bupropion in particular seems promising, as I've taken it in the past and it worked well for me, though I didn't have sleep issues when I was taking it

This is what we in the trade refer to as A Clue :)

Bupropion is not approved here in Australia for treating depression - it's only approved for quitting smoking, so I'd have to buy it off-label and expensively

You gotta help me, Doc. I've tried everything else but I need to get back on the only thing that's ever worked for kicking these fucking ciggies (hack, cough)... hell, they're almost as expensive as non-PBS bupropion!

Converting to a no/low-grain diet is really intimidating and I don't know if I could possibly muster the energy to start, let alone maintain it.

If you're eating so much of any given food family that the thought of going without it is genuinely distressing, it seems to me you might have too many dietary eggs in that particular basket. So rather than thinking about giving things up, could you perhaps work on deliberately eating a wider variety of things?

My life has definitely got better since I got over my puritanical objections to buying bags of pre-washed ready-to-eat four-leaf mix at Coles for three bucks a pop.

* One bag Coles four-leaf mix
* One generous tongsful Hoyts sun-dried tomatoes (don't bother shaking off much of the oil)
* One 185g can Coles Smart-Buy tuna in oil
* One generous handful green beans, steamed or microwaved to bright green
* One Pink Lady apple cored, sliced and wedged but not peeled
* Goodly glop of Mae Ploy sweet chili sauce
* Bit of a dribble of soy sauce

So quick, so easy, so scrumptious.

Mix things up by using crumbed chicken tenderloins instead of the tuna: I fry mine in a bit of the oil the sun dried tomatoes come packed in, which is infused with yummy herbs, throw a bit of chopped pak choi in the pan with them after turning them over, then smash them in bits with the spatula before chucking them in the salad.

Add a bit of carrot and/or cucumber and/or raw zucchini cut into thin slices using that side of the grater you never bothered with before. Try a bit of yoghurt instead of the sweet chili sauce. Hurl in a bag of Coles coleslaw mix. Or an almost-hard-boiled egg or two. Handful of salted roasted cashew nuts, or almonds (throw those in the pan as well if you're frying some other ingredient). Add wedges of fresh tomato. Fresh ground black pepper. Or bacon. And bacon.

Warm salads (i.e. anything at all served on a bed of leafy greens) are The Business.
posted by flabdablet at 2:39 AM on July 18, 2014 [1 favorite]

It's a rotten thing to deal with, made worse by the fact that it's invisible and people seem to love nothing better than to make fun of it ("You really love your bed, don't you?" "I wish -I- could sleep for 12 hours," and so on...).

Yes, this is totally shitty. I hate it.
posted by flabdablet at 2:42 AM on July 18, 2014 [4 favorites]

made worse by the fact that it's invisible and people seem to love nothing better than to make fun of it

yea, totally screw those people. I have delayed sleep phase (why yes, it is 6:30am and I'm reading a bit of askme before going to bed) and I have no time for goofs who imply that I sleep in because I'm lazy, or am a vampire, or whatever stupid thing they think is funny at the time.

It took me a long time to figure out that I sleep really well between 6am and 2pm. Before that I hardly slept at all, and was miserable. When you are able to find a sleep schedule that works for you, don't feel bad if you plan your life around it. I have made a career out of rocking the night shift - I get into the office just before everyone else leaves, and then get more than twice the amount of work done as everyone else, because its quiet, and there are no interruptions. It's my secret superpower.

I actually have come to love being in a different time zone from other people - it's peaceful, solitary, like I am living in my own special city that only intersects with the rest of the world occasionally.
posted by 5_13_23_42_69_666 at 3:50 AM on July 18, 2014 [2 favorites]

For Modafinil, I've had great results buying the generic from a particular online pharmacy based in Oceania; 10x200mg is ~10USD. However, they only ship to the UK. I don't know of one that ships to Australia, but there are definitely reliable outfits like this out there.
posted by Drexen at 7:48 AM on July 18, 2014

One other thing re diet - watch out for sugar. My blood sugar reading is normally fine, but even a tiny bit of refined sugar (eg greatly diluted lemonade) will make it skyrocket and totally knock me out for extended periods of time.
posted by mmiddle at 8:30 AM on July 18, 2014

I'm with 5_13_23_42_69_666. Sleeping for too many hours is something that I can always fix when I'm either hypomanic or my depression pills/treatment are working. When I sleep has become non-negotiable. I don't give a crap if "normal" people get up at 6am and have lovely days. I go to sleep between 4-6 am, period, and I sleep for 7-8 hours provided everything else is going ok. I worked evening/night shifts/for myself in order to accommodate my sleep schedule and I make all my appointments for mid to late afternoon.

The vampire commentary from my family is something I either ignore or shut down with a quick description of delayed sleep phase syndrome. Nope, not a vampire, just a person whose circadian rhythm sends hormonal signals at an inconvenient time of day. Keep your lamps and your melatonins and your CPAPs and your sleep hygienes far away from me, because I'll always return to sleeping during the day at even the slightest provocation.
posted by xyzzy at 11:01 AM on July 18, 2014

Even if your thyroid tests out normally, you still may benefit from thyroid meds (e.g. T3 is used in some cases of treatment-resistant depression).
posted by persona au gratin at 6:19 PM on July 18, 2014

My friend went through this. Slept 14-16 hours a day to even be halfway functional, extreme fatigue, depression, anxiety. No digestive issues. Yet the culprit was gluten.
posted by Neekee at 8:45 AM on July 19, 2014

I didn't have the time right now to read your whole post, but wanted to comment now before I forget about it. I do not have IH, but I do have narcolepsy/cataplexy. I am struggling a lot lately too, but please PM me if you would like to talk, I know of some great support groups online that you may find helpful too
posted by soitgoes at 5:19 AM on July 21, 2014

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