Anything&Everything Let's solve the Idio-Hypersomnia puz

[daysleeper]

Hi there, I've been lurking around for years now without saying much so I'm gonna unload a bunch of info and questions on you all now. I hope you have some time because It's gonna be long and I've got so much to say that I might repeat myself a couple of times. Advanced apologies for that! And I hope many of you will respond to or add to whatever strikes any chord at all.

Okay, in no particular order I'm going to lay out notes on every piece of info I can possibly think of at the moment that could be helpful about my own experiences with Idiopathic Hypersomnia and things I have had success with, learned about or wondered about or thought of pursuing so we can all (further) compare notes. Some stuff might seem random or far reaching, but what if we found out we all had something in common besides the IH that might be a clue as to it's cause? That would be cool. So chime in if anything sounds like you too.

I guess the stimulants that are effective (at least for a while) are not well understood, otherwise science could say, Oh, that (Provigil, Ritalin, Adderall, etc.) does such-and-such to the brain or the body and therefore the origin of the problem must be such-and-such thing that doesn't work until triggered by the stimulant. But apparently the reasons and ways Provigil and the like work are, as of yet, not well understood, even medically. Not sure how they know they're safe if they don't know how they work, but whatever. They do work in many cases, so I guess we don't worry about that.

Just off the top of my head, has anyone tried Strattera? It seems like the same drugs prescribed for ADD and ADHD are the most effective for narcolepsy and Idiopathic Hypersomnia. I've never tried it.

Has anyone gone the neurology route and tried a brain scan? A PET scan, I guess it would be. That seems like it would be logical. I guess the down sides would be cost and is there some radiation involved? Also they may find something but not know what to do about it. But I'd be curious to know the findings. I'd like to have a look at that brain of mine and see where it's lit up and where it's sleeping.

I was interested for a while in a little known drug called Low-Dose Naltrexone (LDN) that worked wonders for a friend of mine for her Multiple Sclerosis (MS). She said it reversed a lot of her symptoms including fatigue. Since it is as innocuous as aspirin (pretty much zero reported side effects), several years ago my doctor approved it for me to try when I asked. It was originally approved in massively larger doses for another purpose, so you have to special order it online to get it compounded into the tiny fraction of a dose needed. I'm not really sure if I gave it the proper trial I should have, but it didn't help me. It was definitely worth a try and probably more of a try than I gave it. It doesn't help everyone with MS symptoms either (but also worth a try for them too if you ask me- so tell your friends or family with MS to ask their primary care doctors (not their neurologist) for it when they aren't taking anything else to give it a try). Ok, I digress.

What about a free sleep approach- A 28 hour sleep schedule based on Circadian Rhythms or else your body's natural sleep/wake cycle? Interesting but looks complicated to me and like it requires massive time flexibility and discipline. Also left to my own (unmedicated) devices, I tend to just sleep or drag around sluggishly anyway. Not sure that would solve anything. There wouldn't be much "wake" in my sleep/wake cycle. I'm open to ideas on it though.

Besides pursuing a cure we also need to establish the best ways to cope/manage with the disorder as it is. What sleep schedules work best for you?

I did very well for a while when I was working on a project of mine with someone remotely in India (I'm in the U.S.) and due to the time difference the best times for me to work were 6am to 10am, then nap (totaling between 1-3 hours or so, but sometimes broken up into a couple of sessions), lighter work, light stretching and relax intermittently throughout the day before starting to work solo again in earnest around 6pm and then collaborate with my Indian colleague again from around 8 pm to 10pm or so. It should be noted that I was in a phase where whatever stimulant I was taking at the time (Ritalin or Provigil- I forget which now- maybe one for a few months and another for the other few) was pretty effective for a time when combined with 10 or 12 hours of sleep per day/night.

I was also deeply engaged in the work (because it was rewarding and something I was professionally qualified to do well) and very focused. I find when I am in that state of focus (a state that feels very elusive most of the time- there is a book on it called "Flow") I can sustain energy for much longer periods than usual (although it is generally followed by a long term debilitating exhaustion after the fact- I guess that's the trade-off). This work I did went on for about 5 or 6 months with few breaks. I was, of course, exhausted a lot and had the big sleep hangover for months after, but I managed. Also I had no social life during this time. It was alternating lots of work with considerable rest and that's it. It wouldn't be sustainable in the long term, but nice to know it was possible in the short term under a deadline (the deadline played an important role as well as my passion about the project) with industry awards at stake. We won the awards and then I slept. A lot.

How about you? Do you find your energy is considerably better when you're really engaged, excited or interested in something? Do you experience an energy crash afterwards? How long does the crash last? Hours? Days? Weeks? Months?

Another time I actually managed to train for and run a half marathon when I was having good success with stimulants. It was challenging but doable and I enjoyed it so much I actually signed up a couple of years later to do it again but was too exhausted and had to back out even though I'd paid for it. I just didn't have the energy to do the training necessary due to my immunity to medications. I do find though that I am pretty athletic (partially inherited I think) if I can get myself awake enough to motivate. Sometimes I can, sometimes not. Not sure I'll be able to do it on that level again. I hope so.

The good thing is, exercise doesn't seem to make matters worse. I'm tired after exercise, but I don't think it's proportionately that much more than my usual ratio of exhaustion considering the exertion. I do think it's much harder to initiate exercise with IH even when medicated.

When I ski, I'm actually amazed at my endurance while I'm in motion with the wind in my face, but once I stop and take a break (whether I eat or not) I have an overwhelming urge to nap. Since I'm usually on the top of the mountain in a lodge when this hits, I have to prop myself up and force myself to get back out there to get down the hill and sometimes I actually get a second wind and keep going. Doing anything but crashing out for at least an hour and maybe 3 when I get home from skiing is out of the question though. Others meet in the hot tub or go downtown or for drinks or something. Not me. No way. Dead tired and lucky if I can wake myself up enough to get dinner.

Sometimes I can take a solid half hour or one hour nap and motivate enough to take a shower and manage to wake up enough to get out for dinner with friends/family but more often TV, reading, talking on the phone, resting or sleeping are the only things I can manage after a half or full day skiing, hiking, running errands and the like. I feel great in that situation in a sense though. It's a kind of an earned "good tired" that I can appreciate and I know exercise is good for me when I can drag myself to get up and moving (easier said than done for me- believe me- I can only do it when stimulant stars are aligned along with the maximum mental discipline I can muster. Commitment to join friends/family to start the exercise or do whatever increases the odds I'll do it exponentially. It does get slightly easier to motivate though, even on my own, once I'm in a bit of a habit of it too- a walk a day or workout video or something). Sort of a cumulative effect. I find I do better when my time is scheduled- it provides incentive and positive pressure to get out and do stuff and makes me plan my sleep accordingly (eg: if I'm meeting someone for dinner I make sure to schedule a nap first so I can manage).

I'd like to hear about others here and exercise. Do you feel it's impossible? Or, like me, can you sometimes have sustained endurance and then crash, but not too much harder than usual? What about when you have scheduled plans? Does that make it any easier?

Does anyone think IH relates to diet or blood sugar? Maybe a category like sugar, gluten, dairy, corn or soy or something? I tend to think not since I've tried every type of eating and nothing seemed to positively influence my energy level (although junk food, sugar and simple carbs do definitely negatively influence it). I do have an intolerance to soy products of all types (makes me bloat up like a balloon) but I've never linked it to the IH. Actually, I fast about once a year and I seem to have more energy when I'm not eating. Maybe digestion takes a lot of energy or something? I don't know but it seems contrary to how it should be. Even fasting though, I'm still sleepy- just less so than usual.

Positive or negative effects of alcohol, pot, or caffeine? I smoked pot for a while years ago and found that it actually woke me up (I couldn't sleep within 2 hours of smoking pot yet caffeine I could consume like crazy and then take a nap), but ultimately the effects of increased foggy-headedness (which I already struggle with due to the IH) outweighed the benefits of the awakeness. Awake is good, spacey not so much. I did try taking it medicinally in very small doses just to wake up for a while. It kind of worked, but not well enough or I'd still be doing it. Also I don't care for the illegality of it- too worrisome.

Have any of you noticed that you have reverse effects from others like my caffeine and pot experiences? Does alcohol worsen things? I don't drink much and don't find alcohol matters a great deal but it probably does add to the exhaustion, especially if overdone.

I sometimes wonder about additives and preservatives in food too, but I eat very clean and pretty much totally avoid processed foods. Also I wonder about pesticides. I buy organic when possible, but don't do it super strictly. Do you think about that stuff? Do you think pesticides could be any of our problem? Is anyone vegetarian or vegan? Do you think that helps?

I also did an experiment where I fasted for 10 days or so and then introduced food categories back one at a time, pricked my finger with one of those diabetes gadgets at various intervals to measure and record my blood glucose level and found in the end that it all appeared normal. Like so many things, that should be good news, but sometimes I wish something would show up as abnormal so I'd have some better idea what direction to pursue with cracking the code of this problem, which, as you might have figured out I REALLY want to do.

I really want us ALL to not have to deal with this. I know mine is bad to me and I also know some of you are suffering much more than me. Mine has been much worse before. I remember Thanksgiving at a friend's family's house when I was in college and I was so embarrassed because I had to go in the other room to sleep and I couldn't seem to wake up. Her family was asking if I was okay because I crashed out for hours.

Maybe yours is like mine was then and you're shaking your head about graduating from college, or running races or working intensely. I get upset that those were the exceptions rather than the rule, but I have to be grateful that stimulants have helped me enough to have those experiences. Actually, I don't think I took stimulants in college yet (I'd tried and had a bad experience in high school), so that's why it took me 7 years to graduate (and that was without working my way through- luckily my family paid for my education or I'm not sure I ever would have finished or at least it would have taken me several more years).

The more we can explore every possible explanation and similarity between our symptoms the better. I hope some well qualified medical researchers or someone with a relevant background and a keen interest will find this Idiopathic Hypersomnia board, read through our posts and it will make something click for them and they will pursue a new approach to solve it. Wouldn't that be cool to be the one to figure it out for all of us? Unless of course we don't all have the same reasons behind our IH. Which is possible. But maybe one breakthrough will lead to another and the whole cause will be advanced for us as well as those with Narcolepsy which seems so closely related and extremely disruptive and frustrating too. It would so vastly change all of our lives to get some kind of answer or better treatment.

These are weird questions, but what age were your parents when you were born? Do you have older parents than average? Were you breast fed? Did you have any issues as a child like dizziness, fainting spells, or cataplexy? It didn't seem like a big deal, but I do remember times when my legs used to go weak all of a sudden and it felt like I needed to sit down or I would collapse. I guess that's what cataplexy is? I haven't had that happen in years but I do remember it occasionally from my youth. Does anyone have that and also did you ever have dizzy spells? I was reading that "Orthostatic hypotension" is a common symptom of IH. I used to have "dizzy spells" when I was a kid and remember one extremely peculiar but anomalous incident (and I don't think I dreamed it!) of passing out standing up (I awoke with my head in the bathroom sink). I don't remember if I ever actually fainted (aside from that one weird time, if you call that fainting), but I do recall often over the years feeling light headed, and got in the habit of putting my head down when I felt faint and then raising it again very slowly to get the "blood rush back in my head". I still have to do that sometimes. Do you?

Has your IH improved or changed over time? Mine seems to be better than when I was a teenager and in my 20s, but it's hard to say how much of that is because I've had some success with medication since then. My Dad claims his isn't as bad as when he was younger either. He's pretty easily tired now, but he's in his 80s and has some other health issues. Overall he's in pretty good shape though so I'm encouraged by his longevity.

Speaking of longevity, it's occurred to me that perhaps in the long run us hypersomniacs will live longer because of our extreme sleep surplus. Perhaps that is one way we can cash it in (please- let's think of more!). When you add it up we'll have undoubtedly slept years more than average people, maybe we get those years in longevity!

I'm always looking for a bright side since it can be such a bummer to think about, but I do think there could be something to the longevity thing. There are those (like Ray Kurzweil) who believe that with good nutrition, exercise, sleep and the exponential advances in biotechnology that many of us living right now could have the chance to live to 120. Maybe we were designed to live longer than most and our bodies are resting up for that! That may sound like a radical way of looking at it, but we have to be creative and open-minded about understanding this or we won't arrive at any answers, right?

Do you think your IH is hereditary? I definitely believe mine is. Like I said- my Dad definitely has it and my cousin might too. I'm curious about this because I haven't heard much about other people with IH mention family members who have it too.

I'm 41 now and was just reading my diary from when I was 17 where I wrote multiple time how exhausted I was - how tired I was of being tired and how there had to be something wrong and it just didn't make sense since I was sleeping enough. I was falling asleep in class all the time and struggled with doing my homework since I just wanted to nap. That's around the time when I was tested in a sleep lab (24 hours with electrodes, etc) and finally got the diagnosis for IH after a lifetime of wondering. I still wonder. There is definitely something still very wrong (though for years I just blamed myself), and I just want to find out what it is so I can fulfill more of my life's dreams and more consistently.

Sometimes friends/family doctors gently suggest that I accept that maybe it's "just the way I am". I'd like to accept it, but you all know as well as I do it is hard to accept when it's so enduring and unexplainable and impacts so many areas of your life. And now I've had glimpses of the other side with those times when I was able to exceed even my own expectations about what I could accomplish because the medications were working at times of great focus and motivation for me. In other words- I had the focus and motivation at that time, and when the enough energy to make it happen kicked in I was prepared to use it accordingly and did. I want more of that.

Subconsciously I think IH may be why I don't feel strongly inclined to date much, get married or have kids. Realistically it seems it all takes more time and energy supply than I have available. I guess I won't know if those situations/decisions have been sort of by default with the exhaustion, or if they were because I'm just super independent and happy alone (which I am) and haven't met the right person. If I had normal energy levels I would probably think more about whether I wanted a boyfriend>husband>kids and maybe pursue it, since there isn't a world of time to decide unless I adopt, but as it is I feel it's just a maybe. I kind of want that but I kind of don't. I try to push myself to date and sometimes quite enjoy it for a while once I connect with someone, but find myself relieved and content to be alone after a relationship that doesn't pan out (even if it was a pretty decent relationship).

I've also always worked for myself so I could manage my energy. I've had contract jobs that lasted up to 6 months, but more often than not I'd choose shorter term (2 weeks to 3 month) contracts on purpose so I wouldn't burn out. Then I would hibernate in between projects to rest up for the next one.

It's also a challenge to find a significant other who understands the delicate balance between expending energy and sleeping. I feel like if I plan it well to hibernate for a while (preferably off stimulants) I can sometimes follow it with a fair stretch with energy and motivation (with the aid of a stimulant med). But I need the initial hibernation part and sometimes that means I have to sleep and lay low and be alone instead of being active or social. I also, when not alone, need to surround myself with only low-drama people whenever possible. High drama wears me out badly. People who are stressed, needy, greedy, angry, hurt, upset, defensive, aggressive etc.. really knock me out. Especially if they're people I care about and I'm trying to help and do/say the right thing but they can't or won't be helped or consoled. So there seems to be an emotional component that translates into a physical reaction of my body shutting down. Really exciting stuff knocks me out too. I have high energy- even euphoria during the excitement (party, concert, festival, conference, travel, outing) but then generally a steep and long crash afterwards.

It's discouraging the lack of answers online for IH and that most of us seem to be in a similar situation where some medication may work great for a while (giving us glimpses of what it's like to have the fog lifted and wake up refreshed like we're supposed to after 8 hours of deep sleep) but ultimately stop working and we're reminded that without that stimulant, we are dysfunctionally groggy and find it a burden to keep up with the ever increasing complexities of life. Administrative stuff, for example- kills me. Taxes, important paperwork, etc.. I know anyone would say that but for me (and probably you) it's especially tedious and overwhelming.

On another topic: Have any of you researched dietary approaches?

What about vitamin or mineral or amino acid deficiencies? What about taking L-Carnetine or L-Tyrosine? Have you had any of this tested? B12 seems important- a relative of mine who is a doctor gave me a B12 shot in the arm once to see if it would help. Then I took a nap. My D level was very low so I take supplements along with calcium. It seems Omega 3 is important too. Anything else on this front? What about natural supplements? Gingko for concentration? I guess healthy fats for the brain are key to the cognitive side of things. Avocado, almonds, ground flax, low-mercury fish, etc… Speaking of mercury- could it be mercury? Hmmm. I wonder who you would talk to to get all those kind of nutrient panels. A nutritionist? Any suggestions?

My doctor has mentioned a combination supplement called GABA Calm. She said it promotes a calm kind of alertness. That would be nice. Maybe I'll try it. Let me know if you try it and if it helps you: http://www.sourcenaturals.com/products/GP1122/

Has anyone tried one of those DNA tests where you send in a saliva or hair sample and find out likely genetic tendencies? I think that could be interesting and maybe enlightening if the right person analyzed the results.

What kind of doctor do you think is the most promising? An open-minded, research oriented GP? Neurologist? Endocrinologist? Psychiatrist? Sleep specialist? I'd like to find someone who specializes in taking an idiopathic diagnosis like this and trying every possible Western and Eastern, mind and body approach until they find the cause, so we can deal with the cause instead of taking stimulants which only treat the symptoms and not for long or terribly effectively much of the time. Not to mention all the potential side-effects and addictive qualities (luckily I've never felt compelled to take more than prescribed- partially because I know when I've taken too much as prescribed, it only made me anxious but I was still exhausted).

Have you considered the idea that this is not a sleep disorder but an wakefulness disorder? Our sleep measures as perfectly sound in a sleep study. We don't need better sleep, we need better wakefulness, right? If our sleep is seemingly restful, why do we always feel jetlagged/hungover/sleep deprived?

Alternative treatments? What have you tried? Chinese herbs, Ayruveda, acupuncture? Homeopathy? Naturopathy? Meditation? Yoga? Massage? Chiropractics? Reiki? Tai Chi? Other? What do you wish there was more information about?

What helps you more than anything else thus far? What do you think are the most promising avenues?

Do you wonder about chemicals in products (plastics, processed foods, cosmetics, household cleaners, etc), environmental pollutants, mold?

Does depression or other mental illness run in your family? Do you think there could be any relationship between IH and clinical depression? Maybe it's some sort of Atypical depression? To me when I feel depressed I usually feel it's a direct result of my frustrations around my IH, not the reverse, but since there is such high incidence of clinical depression on both sides of my family it seems possible. Have any of you had any success with a psychiatrist? I heard mention of a "sleep psychiatrist". Is that really a thing? What about just counseling? Has anyone gone just to learn to manage their life better with IH? I've considered it but have yet to do it.

Would you classify yourself as having ADD or ADHD? The "H" part seems laughable given our problem, but maybe the hyperactivity is going on internally in our mind and wears us out- like knocking ourselves out with too many thoughts to disseminate without napping. Sometimes I feel a bit clearer on a problem after I wake up even if I'm still generally fatigued. The research actually does suggest that people solve a problem better after "sleeping on it". Maybe we're just exceedingly active problem solvers!

Could ethnic heritage play a role? I noticed someone had Irish in their nickname. Are there many of us who are Irish, or of primarily Irish descent? (I'm the latter). If there are a lot of us Irish types- what area of Ireland? Mine is southern Ireland- Cork County.

It's reaching a bit, but what about birth order? I'm an only child. Any others?

Does anyone else in your family have a similar problem? I may have mentioned this, but my Dad and first cousin on my Dad's side have unexplained exhaustion too. I will say my cousin has a lot of other medical problems though so it may have more to do with that. Not sure. She does recommend Vyvance for what she calls her ADHD (but also fatigue). Not sure if I asked this but has anyone tried Vyvance? Any luck? I noticed on the boards someone also mentioned the Daytrana patch that you put on daily that I think they took along with Concerta (which I believe is the same basic thing as Ritalin). Anybody have more info about that? From what I saw it looked like it was primarily marketed to ADD kids for some reason. What about adults?

I've been excessively sleepy my whole life (except with meds when it is sometimes greatly lessened). Is this something you feel happened at a certain age or are you like me and believe you were born with this problem?

I struggled all through school. My parents held me back a year because they noticed I was spacey, sleepy, staring out the window, daydreaming, not paying attention even in kindergarden. My teachers would ask if I'd had enough sleep and I had. Teachers throughout my school days would deem me as artistic and likable but "easily distracted".

As a baby I slept so much my parents would wake me up just to play with me (awesome parents- I'm lucky). I always (according to them) woke up smiling but sleepy even after lots of sleep.

I was a very mellow baby. Were you guys mellow too? Are you creative types? Are you chronically messy? Did you want to clean your room and do your homework but often fell short of your goals because you were so tired and there didn't seem enough time or energy in your day to keep up? Are you still the same way about cleaning your room as an adult but you'd love to be organized? Do you have trouble scheduling your time? Do you forget to call or email people back? miss appointments, run late and lose stuff a lot? Do you like to be alone so you can be on your own schedule and sleep excessively without judgement? Did you fall asleep in class? Was it worse in high school than any other time? Is it worse when you're stressed out and have a big emotional load? If you went to college did you schedule your classes in a way that favored sleeping in and napping? Did college take you several extra years to finish because you couldn't handle the work load and the multi-tasking? Would it be impossible for you to attend college, even part time in addition to working? Is it hard to shift gears from one task to the next? Do your days sometimes just pass you by and you can't believe the time?

I just want to gauge what we might have in common with this problem and learn from each other's research, hunches and experience. Hopefully the more info we put out there, the more someone who might be on the verge of some answers will have to go on. And I like to think there are some researchers or doctors or nurses or alternative medicine experts out there who are very interested in finding more answers for all of us suffering from this largely unknown problem of Idiopathic Hypersomnia (or Primary Hypersomnia).

What's your hunch? Let's really collect hunches and share information on our pursuits of various hunches. I'm open to ideas and feel it could be anything I'm mentioning here in this long missive or some thing(s) I've never thought of or maybe even heard of.

Does anyone out there with the IH diagnosis feel they've found a cure? If it's a medication have you been on it more than a year and it still works well? I was certain I'd found the answer when I discovered Provigil, only to discover that it would only work for a while before it stopped and I had to try something else- same deal- and then something else and then start over.

My current pet hypothesis is that it's either:

1. An adrenal/thyroid endocrine system related thing or

2. A neurological thing having to do with the neurotransmitter that regulates wakefulness: Orexin (also called Hypocretin) since they found a deficiency in people with Narcolepsy and Idiopathic Hypersomnia. (I only just found out about Orexin in the last few days reading some of the research posted by TyroneBrumwell here on the message boards. I will link to that thread towards the end of this post.)

So…

1. Adrenal, Thyroid- I'm currently pursuing this direction with my doctor and will be seeing an endocrinologist in about a week. The endo was recommended to me by a friend who had thyroid issues and suffered exhaustion for years and says this doctor resolved her symptoms and minimized her need to take medication. Not sure how, but it sounds worth a shot to talk with her.

So with my primary care physician who has been trying to help me:

Treatment with Levothyroxine for SUB-CLINICAL hypothyroidism (this means your your thyroid doesn't necessarily measure as particularly low- more on the low side of normal- in tests but proper doses of thyroid medication could help anyway). Be careful, exact and specific with this though- and make sure you have a doctor you can trust- you don't really want to mess too much with your thyroid. I have found when I'm over-medicated (once when I was a teenager and once when the pharmacy screwed up and gave me a much too high dose) on thyroid hormones it has gnarly side effects- for me it included severe headaches, back pain (from tension), anxiety and depression. You have to work with a good doctor, start low and really measure how you feel and get labs regularly and check in every few months to monitor how it's going if you want to try this route. It's not easy but I've read enough to make me believe it's worthwhile. Like this article here:

Successful treatment with levothyroxine for idiopathic hypersomnia patients with subclinical hypothyroidism:

http://www.ghpjournal.com/article/S0163-8343(08)00130-8/abstract

I'm trying a combination of thyroid medication now with my primary care doctor. We have experimented with different levels. She tells me it's more of an art than a science. There have been moments when it seemed to help but the jury is still out. One thing I noticed is that I am able to lose weight now in a manner commensurate with my efforts. There was a time- that time I had a lot of energy and was training for the half marathon (it should be noted- that's all I was doing.. I didn't have school or a job at the time or there would have been no way to pull it off. I'm amazed I pulled it off anyway.) when I could not for the life of me lose weight. I wasn't majorly overweight but was lugging around an extra 20-30 pounds and was eating like a saint and working out like a fiend. I believe it was my slightly low thyroid because now when my diet is healthy and low-calorie and I get moderate exercise I lose weight like I should. This might be a clue for you that you have sub-clinical thyroid issues if you, despite your sincerely best efforts (not from lying to yourself about your actual calories in/calories out ratio) cannot seem to shed much weight. Just a thought. It took me a long while to make any connection there because all the thyroid tests were deemed "normal".


Anyway, just FYI my current medication (female, 41, 135 pounds, 5'5.5") is:
....................................................

MORNING (on empty stomach):

1 (0.05 MG = 50 MCG) of Levothyroxine (generic for Synthroid) and 1 (5 MCG) Liothyronine

I try to delay my coffee until well after I take this since I've read that the acid in coffee can negate the effectiveness of thyroid meds. Also I try to limit caffeine in general. I do like a cup in the morning (and occasionally a cup of black tea in the afternoon).

(1 hour later I take 10 MG of Adderall (stimulant) and sometimes another 5 (half pill) or 10 (whole pill) later morning. Don't like to take them too much past noon as they keep me up at night, and not in an energetic, productive way- more like a zombie.)

AFTERNOON- around 1:00 or 1:30 (on empty stomach if possible):
2 more (5 MCG) Liothyronine

....................................................

Adderall works well for me for a while- weeks or months usually, but eventually loses it's effectiveness completely (I take it in the morning then fall back asleep) so I try to take the minimum effective dose and then build up to the maximum recommended by my doctor (currently 20 MG) until it ceases to be helpful. Then, if at all possible, I take a holiday off all stimulants (when I don't have much to accomplish and can afford to sleep or be sleepy for a week or a long weekend or something) and switch to either Ritalin LA (20 MG) or Provigil (100 while it works, then 150 while that works then 200 until it's no longer effective) So I do a cycling through these 3 stimulants (have thought of requesting Vyvance as another to throw in the cycle. Sorry if I'm repeating anything but has anyone tried it?

Cycling through medications is not ideal by any stretch- I hate relying on drugs for awakeness, but I have to say, stimulants have been a bigger help than anything for me so far. They have allowed me to accomplish things professionally and athletically that wouldn't have been otherwise possible because I simply wouldn't have had the energy to devote to the endeavors. The drugs didn't make me do those cool things, they allowed me to do them. They didn't give me the motivation, they simply allowed me the energy to do what I had pent up. I do wish they remained effective, but at least I can cycle through them. There are moments when nothing at all seems to work and then I really do just have to take a forced hiatus from all of them and try not to be too hard on myself for sleeping, feeling lazy and getting very little done all the time during that span.

………………………..

My primary care doctor is really cool to try all of these avenues with me and I'll continue to see her, but I've made an appointment with an Endocrinologist in the hopes she can shed more light on the situation and fine tune it. I'm particularly interested in the adrenals, and how that might play into it.

Back to my other pet theory- that it has something to do with...

2. Orexin (also called Hypocretin) deficiency or malfunction since they found a deficiency in people with Narcolepsy and Idiopathic Hypersomnia. Also related: Histimines.

Medical research articles (not in layman's terms but maybe a launch pad for discussion if you show it to your doctor or extract key words):

Is Low Histamine a Fundamental Cause of Sleepiness in Narcolepsy and Idiopathic Hypersomnia?

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2635574/

CSF Histamine Contents in Narcolepsy, Idiopathic Hypersomnia and Obstructive Sleep Apnea Syndrome:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2635582/

I got most, if not all of my links from TyroneBrumwell's fantastic compilation (keep up the great work!) here on talkaboutsleep.com (Thanks also to Talk About Sleep for this resource. It is much needed. There isn't much else out there for this disorder as far as I know. My only suggestion would be it would be nice to somehow organize the most recently frequented topics first if possible).

Here is the thread that TyroneBrumwell has been working on in the unlikely event you haven't see it yet. Let's all add to it as we find info:

http://www.talkaboutsleep.com/message-boards/viewtopic.php?t=27133

I also liked the thread where he suggested everyone list their medications along with some info about themselves and if the medication is working. That was really valuable. I actually printed it up and brought it to my doctor for reference.

If you've read this far and you are a doctor or researcher in the general realm of Idiopathic Hypersomnia or even Narcalepsy or ADD or ADHD since they all have common features, please do chime in with your thoughts. We know you don't know all the answers- that's why it's "idiopathic" but anyone knowledgeable about these topics or with ideas, outlandish or practical is someone I feel confident we'd all love to hear from.

Maybe such organization is pie in the sky with our collective EDS but it would be great someday to have an online or live (and live streaming) panel discussion or individual interviews with Q&A with leaders in the field, like Dr. Dement from Stanford, other notable physicians or researchers from other institutions like Mayo, authors of the studies, med school students, etc.. My friend attended a lecture by Dr. Dement and said he was great. If we could get some interest on the part of the experts I might be (if my energy level is reasonable) willing to figure out how to orchestrate some online forum.

In the meantime, please, everyone- let's continue to share as much insight and info with one another as possible. Life is too short to sleep through it! There has got to be something that will improve the situation and minimize this sense of lost potential caused by unexplained EDS. It's a total drag to be dragging around half asleep and always needing a nap. I don't want to deal with this for the next 50 years and I know you don't either.

I thought about trying to organize this info better but am finding the prospect daunting. One thing- it might be useful to have a uniform survey of questions so we could determine those things we have in common and what works and doesn't work for the majority of us. Also as we pursue various avenues to figure it out we can report on progress. I guess that's essentially what has been going on here, I just encourage it on a more volumous level. Me, for example, I've posted probably 2 or 3 times in the past 10 years. I owe it to the community to share my experiences and ideas more in-depth (to read if you want! This may only be interesting to others with the same diagnosis and within that population maybe not even too many, but maybe someone gets something out of it, ya know? I guess if you're still reading you must be interested, so that's good) I posed a LOT of questions here. I'm doubtful anyone will answer them all, but I hope you'll answer whatever strikes you as interesting or relevant or useful. I hope someone finds this thought provoking in some way and has something to say in response because otherwise I just wasted the better part of today writing all of this!

Wishing You: Sweet Dreams, Awake Days, & Extreme and Healthy Longevity,
"daysleeper" (name changed to protect the excessively sleepy)


P.S.- Has anyone tried to figure out the size of the IH community on here? I'm curious. Also curious how many people have it in the U.S. and the world, although I suspect a lot of people have it but it's underdiagnosed since the 24 hour diagnostic test is kind of a big expensive deal.







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[mclinda]

I'm sorry... I couldn't read it all. I really tried, but I just can't focus that long. I am kinda skimming right now and looking for questions to answer, so hopefully that will help.

I already posted somewhere else about vyvanse and I know you asked about that... I like it.

I know you were asking what people found helpful, and for me, stimulants are by far the most helpful thing I have found. Everything else I have tried gives, at best, a small improvement.

[daysleeper]

[harmony18]

Hi Day sleeper

a lot of thoughts there !

I have sleep apnea and IH so not sure if I am a usual IH person that then we seem to be all sorts of us !
My IH runs the the family, dad, nan and think for quite a while I thought it was normal to sleep loads
Provigil was fantastic for me at first but i think you get used to it?
I can with lots of stimulants provigil and caffeine tabs and the odd red bull almost last a whole day without sleeping but then I will crash big time !
my norm is to sleep ten hours at least at night but without an alarm i could easily sleep 14 - 16 hours and again in the afternoon - when I sleep in the day I get really groggy afterwards - kind of sleep drunk and this is the worst symptom for me apart from feeling I am sleeping my life away !
I try exercising but it always make me more tired ! but its one normal thing i can do ! as long as its in the morning
the three sleep tests i have had show that I have large amounts of stage 3 and 4 sleep and a long time to go into REM between 3 - 6 hours and only ever had 2 sleep cycles on each of the tests ? so of this fits in with the research that Tyrone highlighted on the case study of 77 patients with IH but I don't know how you are supposed to get your sleep to change
I never feel refreshed how ever long i sleep and think this is an under highlighted condition as it totally ruins peoples lives - i have very little quality of life but no one really understands what its like unless they have this themselves !
Harmony

[Tim Tam]

Hello daysleeper

That is an impressive post! It must have been a big effort for you to write, thank you for sharing so much.

I’m sorry you didn’t get so many replies, I hope it doesn’t put you off. I wonder is it because people just don’t have the energy. I read through it before and there were quite a few bits I wanted to reply about, but by the time I got to the end just didn’t have the energy. Also I’ve been reading these boards for a while and it does seem that there’s times when there’s not many people reading / posting, maybe it’s at holiday times of the year or something.

I really admire your enthusiasm and determination, and I think I used to feel that way myself, but now I’ve sort of given up. I can understand exactly where you’re coming from though. I’ve always wondered is there some clue that I/doctors have missed. Like you say if enough people compared notes on every little thing no matter how insignificant it seemed, maybe something might come to light. But I'm afraid I’ve just lost that motivation. For me the IH diagnosis was sort of the end of the road. I still amn’t convinced that it really fits (for example I don’t have the really long sleep time, and the sleepiness isn’t overwhelming I’ve always been able to control it). But it does seem like that’s as far as I’m going to get. One side of me actually tells myself to stop trying to find patterns and things that make it better or worse, partly because I’ve been doing that for years and still haven't found anything, and partly because doing that in itself is draining!

To reply on some of your points: