Idiopathic Hypersomnia Treatments

There are many different approaches to treating Idiopathic Hypersomnia (IH). As each person can respond differently it is normal for different treatments to be trialed until a treatment is found that works well for the individual. The possible causes of Hypersomnia are poorly understood so treatment normally focuses on reducing the symptoms for the individual. At the time of writing a reliable cure is unknown and one or more of the below treatments will likely remain part of a Hypersomniacs life indefinitely.

This list of treatments is by no means a complete list. Many of the descriptions have been provided by volunteers who suffer from Hypersomnia and they are anecdotal in nature only. It is fair to say that for every treatment below there are suffers of Hypersomnia who have had little or no results from that treatment (See one IH sufferers opinion on IH Treatments by clicking here). This list is provided with the hope of starting conversations with your doctor about possible treatments that can help you.

When deciding on the best treatment for you please consult with your doctor.
For a list of Doctors that others have found helpful with their Hypersomnia visit our Doctor Directory.

Pile of Pills for Hypersomnia Treatment

 

Known Hypersomnia Treatments

AdderallSee Amphetamine.

Alcohol – It is generally recommended that people suffering from Hypersomnia avoid all alcohol.

Amphetamine — This is one of the more successful stimulants for treating Idiopathic Hypersomnia. It provides long lasting symptomatic relief from sleepiness when given as an extended release tablet, although it may also be taken in instant release form. It allows some sufferers of IH to work and live a normal life. This stimulant is generally considered addictive and is closely regulated in many countries around the world. This medication can decrease appetite and may also speed up metabolism, facilitating weight loss. In the long term tolerance often builds up, requiring stronger and stronger dosages. Due to the cardiovascular risks and uncomfortable side effects sometimes associated with this medication it is not suitable for everyone. There can also be side effects when stopping this medication, including suicidal thoughts and increased appetite so always consult with your doctor when modifying your dosage.

Antidepressants – Antidepressants can be used to supplement other treatments for Idiopathic Hypersomnia. Antidepressants work by effecting some of the same neurotransmitters effected by the normal stimulant treatments. Because of this relationship, there is a high incidence of depression among people with Idiopathic Hypersomnia. Before a diagnosis of Idiopathic Hypersomnia can be made, depression must be ruled out. Typically the depression must be under control with the symptom of sleepiness persisting.

Armodafinil – Armodafinil is a FDA approved drug that is a purer version of the active ingredient in Modafinil. Generally speaking Armodafinil is roughly twice as strong as the same dosage of Modafinil. Dosage must be provided by your doctor although it is normally around 150-250mg upon waking. See Modafinil.

Caffeine – It is generally recommended that people suffering from Hypersomnia avoid all caffeine. Caffeine is often extensively used by sufferers prior to diagnosis when they turn to coffee, energy drinks and caffeine tablets to try and keep the tiredness at bay. While it helps with tiredness in the short term it also often leads to a crash after a couple of hours and as the body builds up a tolerance greater and greater quantities can be needed for the same effect.

Clarithromycin – Clarithromycin is an antibiotic that has recently been found to help some people reduce their excessive daytime sleepiness (EDS). While the side effects can be pretty uncomfortable, specifically tummy upset and a bad taste, the wakefulness is considered by many to be far superior to that of stimulants. It is thought to act on the GABA pathway that Emory University researchers believes to be behind the sleepiness for many patients with Hypersomnia. Read more info and talk to your doctor about trying clarithromycin.

Concerta – Brand name. See Methylphenidate.

Counseling - Many people who are diagnosed with Hypersomnia will need to make significant life changes to effectively manage their health. This can often mean changes in career, family situation and loss of independence. A Counselor is a terrific resource for supporting you through that process and the emotions that can go with it.

DextroamphetamineSee Amphetamine.

Flumazinel – This drug is FDA approved for treating drug overdoses on sleeping pills like Valium. It is also sometimes used for reversing anethetics after surgery when a patient doesn’t awaken very easily. Published research from Emory University (Georgia, USA) and Fresh Start Clinic (WA, Australia) has shown that chronic dosing of Flumazenil can be effective as a treatment for patients with Idiopathic Hypersomnia. More research is needed into the long-term safety of this treatment. At this time this treatment is one of the most difficult to access, although it is becoming easier as more patients have success with it.

Gluten Free Diet – Several people have reported anecdotally that their fatigue is less when they follow a Gluten Free Diet. A Gluten Free Diet excludes wheat (including both kamut and spelt), barley, rye, malts and triticale. This is the same diet followed by sufferers of Celiac Disease and those with a Wheat Allergy.

Levothyroxine – Studied on a small number of patients in Japan this Thyroid medicine was found to reduce sleep time in Hypersomnia patients with normal thyroid results by an average of four hours per day.

Lifestyle Changes – Lifestyle Changes are a common starting place for a sufferer of Hypersomnia. These can include avoiding shift work, changes in diet (like the exclusion of alcohol/caffeine/nicotine) and introducing regular exercise into their routine. For those suffering more extreme Hypersomnia, especially when they are sleeping upwards of 16 hours a day, many of these lifestyle changes are near impossible.

Melatonin – Melatonin is a sleep hormone that helps regulate the sleep/wake (circadian) rhythm. It is sometimes used by people with Idiopathic Hypersomnia who either struggle to sleep at a normal time or for those who struggle to stick to a normal schedule. Anecdotally for some patients it can help maintain more regular hours of wakefulness.

Methylphenidate – This is a stimulant, commonly known as Ritalin (instant release) or Concerta (extended release). Often used by sufferers of Idiopathic Hypersomnia for symptomatic relief from sleepiness. It allows some sufferers of IH to work and live a normal life. This stimulant is generally considered addictive and is closely regulated in many countries around the world. Some people find the short acting version of methylphenidate a good addition to other extended release medication like Modafinil, Armodafinil or Dextroamphetamine.

Modafinil – Modafinil is an analeptic drug commonly prescribed for Hypersomnia as well as narcolepsy, excessive daytime sleepiness (EDS) and shift work sleep disorder. This FDA approved drugs was originally discovered in the 1980’s and has been in common usage for several decades. In 2001 over 1,000,000 prescriptions for Modafinil were written in the United States alone. There are currently no studies into the long-term effects of Modafinil although it is not FDA approved for children and it is known to reduce the effectiveness of female birth control. Modafinil is not classified as a Stimulant, but as a Wakeful Agent – this means it is often without the side effects of other stimulants such as a racing heart. This is one of the most common treatments of Hypersomnia.

Nicotine – Reports vary about whether Smoking makes a difference to Hypersomnia. Most health professionals will generally recommend Smoking and other Nicotine products are avoided in the interest of overall health.

NuvigilBrand name. See Armoafinil.

ProvigilBrand name. See Modafinil.

RitalinBrand name. See Methylphenidate.

Sodium Oxybate – This is treatment approved for the treatment of Narcolepsy. It helps with excessive daytime sleepiness for some people with Hypersomnia by allowing the patient to receive more restful and deep sleep during the night. It is a liquid that must be diluted and is generally taken in two doses, once before going to sleep and a second time 4 hours later. It is a very tightly regulated/controlled medication and generally very expensive. It is available in the United States, UK, some parts of Europe and very recently in Australia.

Sleep Hygiene – Sleep Hygiene is a series of lifestyle changes that are supposed to help with better quality sleep. They were developed specifically for treating Insomnia and are very successful at helping people who struggle to sleep. Anecdotally these guidelines will make little to no difference for people with Idiopathic Hypersomnia. For a full explanation of sleep hygiene check out this blog post.

Thyroid Medication- Thyroid Medication is highly recommended for those suffering a thryoid issue as many symptoms of thyroid problems can be similar to those of Hypersomnia. Two studies have been done in Japan where Thyroid Medication has helped alleviate symptoms of Idiopathic Hypersomnia in those with a normally functioning thyroid. Further research is needed in this area before Thyroid Medication is regularly prescribed by doctors for those with normally functioning thyroids.

Vyvanese – Brand name for Lisdexamfetamine. See Amphetamines.

Water - When sleeping for beyond 12 hours, especially in warmer climates, dehydration can become a real concern. Keeping fluids up allows the body to function optimally and get rid of toxins and waste. Water consumption is especially important for those on medication to aid with properly expelling the waste from the body. Generally speaking health professionals recommend 33ml of water per kilo of body weight (Or a half ounce per pound of body weight for those working on Imperial measurements). This can create challenges though with increased water consumption meaning more toilet breaks that can interrupt naps! Anecdotally consuming enough water can reduce the effects of Sleep Drunkenness.

Weight Loss – Many sufferers of Hypersomnia will gradually increase in weight over time due to inactivity and a tendency towards high calorie food such as chocolate. The reverse may also be true for those on many of the medications as stimulants will often reduce appetite and increase metabolism which leads to weight loss. Depending on the severity of the Hypersomnia exercise is often not possible so Weight Loss is best approached from the perspective of nutrition. Note – weight gains could also indicate hypothyroidism which can be investigated with your doctor as it shares many similar symptoms to Hypersomnia.

XyremBrand name. See Sodium Oxybate.

 

Further Reading

The below links contain further reading about treatments for Hypersomnia.
Each link opens in a new browser tab/window.

  1. Hypersomnia Doctor Directory on the Living With Hypersomnia Website
  2. Idiopathic hypersomnia: clinical features and response to treatment on PubMed, the US National Library of Medicine

 

Is A Treatment Missing?

Do you have a treatment that you have tried for your Hypersomnia that is missing from this page? Please leave a comment below with what you have tried and your results so it can be included on this page. Similarly, if you notice an inaccuracy of have experienced an adverse reaction to a Treatment above then leave a comment below so that others can benefit from your experience.

This post is also available in: French, Dutch, Spanish, Korean

77 Comments

  • Anon

    07/02/2013

    What about Ritalin ? It’s the only treatment that works for me, so please mention it! :)

    • Idiopathic Hypersomnia Sufferer

      07/02/2013

      Good point! Will add it in right now :)

      • Nicole Berry

        11/11/2013

        PLEASE HELP!!!!
        I have suffered from extreme hypersomnia for over four years. Have had multiple sleep studies durring day and night with and without stimulants. Have tried anti-depressants along with my thyroid medication which is a seperate issue still not resolved. I have been treated with many different combinations and strengths of methylphenedate. I have taken 37 mgs extended release with 30mgs instant release and still fallen asleep driving/talking. I am now taking 54mgs a day extended release only and to be honest i most days take two of these trying to be able to either drive safely or complete normal daily tasks. I am honest with my dr. that i am still not getting relief but at the same time am terrified to increase dosage again due to cost, i have no health ins at this time since am not able to work. Is there a different medication that could help me? Should i try only instant relief instead? I am a mother determined to provided a life my child deserves but am completley out of ideas. thank you for your time and any suggestions

        • Kelly Hartweg

          08/07/2014

          I am taking 20mg extended release and 10mg instant 3 times a day. For me, I don’t feel the extended kick in but it at least keeps me from falling asleep while driving or in class. I still haven’t figured out the timing for the instant ones, but they peak then wear off like I am on a roller coaster. I still have times of the day where I am just so out of it I can’t do anything though, and have to wait for another peak. I am also afraid to increase it though because then sometimes it lasts all night and I get no sleep. Then it’s impossible to get back on schedule. About costs, my doctor looked up different versions of methylphenedate and found one my insurance would pay for. Maybe other versions of methylphenedate might be cheaper, and might even work better for you. I hope you make progress, I know it’s hard to be hopeful when the disease itself is unclear and there is no perfect solution. If you are still actually falling asleep while driving, you definitely need to change your medication. Be sure also to never take a double dose. It actually says that on the label but I just forgot that I had already taken it. Big mistake- I had heart palpations, was slurring my words, and could barely even walk straight. Sorry so long- good luck.

        • LaTonya Davis

          11/11/2014

          You should talk to your doctor about patient assistance programs. Most pharmaceutical companies have them. I didn’t have health insurance for 2 years and was ill and NEEDED medications. I joined patient assistance programs and got them free. you just complete a form and have your doctor sign a form which includes your prescription. You also receive the brand name vs generic. best wishes

    • JDunaway

      18/05/2013

      Ritalin is Methylphenidate

  • Rozy

    04/03/2013

    What about Flumazenil?

    • Idiopathic Hypersomnia Sufferer

      04/03/2013

      More details are needed – watch this space! A few blanks like that will be filled in over the next few weeks. Thanks for the comment Rozy :)

  • Libby Amaya

    05/03/2013

    I have never had the luxury of health insurance or regular visits to the doctor. The few times I have had the chance to talk with a doctor about always being tired, I seemed to just get blown off. Once I was told by a doctor that she wouldn’t talk to me about my tiredness until after I went to see a therapist for depression. But I am a naturally positive and happy person, I definitely wasn’t depressed outside the fact that I was tired all the time. I have been looked down upon over and over by peers for being seemingly lazy and unmotivated. I have gotten into serious arguments with friends about the matter. People are constantly commenting on how sleepy I look and how I look like I just woke up. It doesn’t matter if I sleep 5 hours or 8 or 10 or 12, I will always be sleepy. In any case, I didn’t and still don’t have the money to pay to talk to a doctor. If I did, I wouldn’t trust that I would be taken seriously anyway.

    I have taken adderall at times when it was available to me and it does help me feel awake but it causes me to feel unnaturally manic, and overly emotional and then get severe headaches.

    What I have found that best helps me is movement. If I am moving, I feel awake. Unfortunately in this world you cannot always be moving, especially if your job requires you to sit still for long periods of time or if you are in school.
    I have thrown out all ideas of a career in academia or in an office, and now I am trying to figure out how to take steps toward a career where movement is constant and essential.

    • sandra j schmidt

      11/03/2013

      I tried this too but the older and age the harder it is to perform and keep up.

    • laura babcock

      16/06/2015

      I know how that goes. The movement is good but as you get older it gets harder. You sound young and have a good handle on knowing your body. The reason why the doc wants you to get checked out about depression is because that is one major cause of excessive tiredness as a symptom. I had great insurance and it took years after i had already given up about always being tired to get a diagnosis. Every time I would see a doctor and so on they give you a list of things to do, take vitamins, make sure you aren’t dehydrated, stick to a sleep schedule, get enough exercise, check thyroid function and so on. Hypersomnia is really a diagnosis of elimination and then running a sleep study. Because of the cost involved they what to rule out all the inexpensive things first. If you are truly not depressed one visit to a therapist they will tell you that and also note that to your doctor and now there is a paper trail backing up what you already know. For doctors and insurance is it all about getting things documented by professionals and backing up things up for liability and so on.

      If you ever have any steady form of insurance or even state assistance, they won’t cover everything meds. wise but if you continue to rule things out the treatment will get better and easier.

  • Erick Singley

    24/05/2013

    Modafinil, a dopamine reuptake inhibitor, barely took the edge off my fatigue alone. Amandadine (Symmetrel) which boosts dopamine release, and blocks reuptake also, alone, had little effect on me. In combination, however, I felt a big improvement. I lived for years on those two.

    In my case diet (gluten, for instance) seems to trigger the worst fatigue (there is an delay of a few hours after eating as well). Although I have yet to really nail down what is an influence from food and what is from other sources.

    I had no relief with prescribed amphetamine. Caffeine is useless since I feel peppy, jittery, *and* crushingly sleepy at the same time. Steroids worked wonders, but my doctor said, “Healthy people feel great on steroids. It would kill your liver to keep you on them the rest of your life, anyway.”

    Keeping up with drinking water and ‘keeping moving’ as mentioned above can helps as a delaying tactic until I stop moving and crash. Thanks for collecting all this information in one place!

    • Viktor Holmgren

      08/09/2013

      Thanks for sharing!

      Iam woundering what happened to the combination of modafinil and symmetrel, why did you stop?

  • rh

    16/07/2013

    Modafinil is not a dopamine reuptake inhibitor; methylphenidate is. Modafinil is thought to work on the histamine system in the brain, but really no one knows.

    My son has had success with 100 mg of modafinil at 6 am, so he can be relatively alert by 9 am (too bad school starts at 7:45 am and I cannot wake him up at 4:45 am to take medicine – it would kill both of us).

    But my problem is that he was taken off of it for the summer, and now his other activities (jobs, very competitive sports) are suffering tremendously. He is underweight and has a low appetite usually, so methylphenidate or amphetamines are off-limits.

    Has anyone heard of a child or teen having medications off in the summer because they “don’t need it”? I feel like the doctor pretty much destroyed several opportunities for him, and we both thought he was “getting by” but others noticed a substantial difference in his personality and ability to stay focused.

    This started suddenly, after years of minor sleep issues, and it has been just over 6 months he has been going through heck. His school doesn’t even want to give him a 504 plan, but said they can “work with him” to get most accommodations without one.

    I have to say that for him, he can still nap while on modafinil, but naps much less and gets up with almost no problems when on it.

    Note that we have a mitochondrial disease variety, which may be responsible for the hypersomnia. I don’t know if any of you folks have been tested for such an illness.

    • Michael Peterson, LPC

      26/08/2013

      My 10yo son takes Methylphenidate for ADHD, and isn’t taken off of it over the summer or weekends. I have heard of doctors that do those things but I dont see the need. People with ADHD cannot be fully themselves or function well unless their prefrontal cortext is turned on as well as possible. I would suggest you find another doctor – one who is willing to keep your son on his ADHD meds throughout the year.

      • Michael Peterson, LPC

        26/08/2013

        In regardds to my last reply, I want to be perfectly clear that being an LPC does not mean that I am licensed to give medical advise. My reply was simply based on my experience. I am not a medical doctor and do not want to imply that I know as much or more about medicine that M.D.s.

      • Simone

        05/12/2013

        Kids with ADHD are often asked to not take Ritalin on the weekends. This can help brake the cycle of building up a tolerance.
        I am taking Ritalin and Provigil for IH and if I take these medications 5 or 6 days in a row they become less effective to a point where when I increase dosage to make up for the tolerance built up they stop to work altogether. Therefor I am taking these drugs only 3-4 x per week so that I can get some relief over none.

    • Daniel

      22/02/2014

      I feel the pain of modafinil taking hours to kick in. These days, I can’t afford it (insurance is great, but there’s still the small matter of the deductible.) It’s great stuff, and it gave me back several years of my life. But it’s not instant, by any means, and I agree that waking him up earlier is in no way the solution for either of you.

      It feels (to me) as if your doctor is treating the modafinil the same way they might treat any of the amphetamine derivatives. That’s an understandable error, but an error nonetheless. “Doesn’t need it” is a relative concept. IIRC, those pills split easily. Maybe a lower dose is in order, to prevent potential tolerance (since we know little about how the drug acts), but off and on modafinil is a terrible idea. Not only for the obvious reasons, but because doing that can often change your body’s reaction to a drug. When I started it (~2006), I had terrible hives and rash, to the point where I had to take it with a benadryl if I wanted to be able to do anything at all, which is rather self-defeating. I stopped it for a week and came back to it, no allergic reaction at all.

      The other risk (and your doctor should know this already!) is that if you take him off it because he “doesn’t need it,” you run the risk of your insurance seeing those words come fall and declining to pay for it because he “doesn’t need it.” They’re famous for focusing in on certain words, to the exclusion of others, in order to avoid paying.

      By the way, I’m new here. More pleased than you know to meet you all.

    • Dregory Heggins

      20/10/2014

      Try taking the medication right before falling asleep. This is what I did while I was still on it. That worked fairly well for me. And I would fall to sleep so deeply it rarely interfered with my sleep. No longer onit because of some of the side effects I was having but this might be a solution for your family.

  • rh

    16/07/2013

    Sorry, a postscript: the modafinil is covered by our insurance, after a special approval, thank goodness! And also, caffeine makes him crash and burn, after maybe 15 – 30 minutes of alertness. Modafinil has not given him any side effects.

  • Gleb

    06/08/2013

    I recently discovered modafinil through a friend and it’s literally like a miracle. I instantly went from sleeping 10-12 hours a day and still feeling tired/sleepy throughout the day, to sleeping 7-10 hours and feeling like a normal person for the first time in over 7 years. If you have IH (or at least the symptoms) I highly suggest you start your search for a cure with Modafinil. It’s not addictive, it’s quite easy to get a prescription from your doc, and it doesn’t seem to have many side effects.

    Having said that though, has anyone here tried stimulants (adderall, ritalin, etc) ? How do you feel? Is it addictive? Side effects? Most importantly, how did you get your GP to prescribe them to you?

    • Kelly Hartweg

      08/07/2014

      I have tried many different stimulant medications in the past year. As far as addiction goes, it’s never been an issue for me. I think it would be for normal people, because it can be like speed but for people with hypersomnia it just makes them have a normal level of alertness. I have had to deal with a lot of side effects though. I taking methylphenedate now and am dealing with weight loss (sounds good but it won’t stop), decrease of appetite (not helping stop the weight loss) and really bad dry mouth (makes eating difficult). These are the most tolerable side effects so far. Every stimulant I have taken causes headaches. One gave me migraines that increased in frequency until i just had one constantly that lasted for 14 days after I stopped the medicine. In general, some you can feel kick in and wear off the instant it happens, while others peak up and down. You can take time-released or instant or both. For me, they all worked great the first week then the side effects started, got worse or unbearable, and I started feeling sleepy again. If you are going to try stimulants, I would make sure you have someone who could give you rides or drive for you in a pinch because I frequently got headaches that made it unsafe for me to drive and then I missed classes. Stimulants are protected substances, even with a prescription I can’t get refills, my doctor has to rewrite it every time. So your doctor might be reluctant to write it, and your insurance reluctant to pay for it. As long as you have been officially diagnosed you should be able to try them, but if you are doing well I would not. For me the side effects were severe and unpredictable, but I gotta keep trying because sleeping for 16h and being so out of it I lose entire days isn’t living.

    • Karen K

      31/08/2014

      I am on Modafinil 200 mg x 2 doses and it has not changed anything. I love seeing someone that has had success with medications. I am waiting for my success story.

      • Tania

        13/05/2015

        I have to take 600 mg Modafinil and a conventional stimulant. If you can tolerate it, check into upping your dose. My specialist said the dosage is still safe. No reported deaths from Modafinil even at dosages 5 times higher than that have been reported so worst case senerio you have some uncomfortable symptoms for a few hours.

    • Rachel L

      02/04/2015

      I’m glad to hear that you’ve had success with the Modafinil, unfortunately for me, I literally could not tell any difference while I was taking it. I even tried taking 2 doses in the AM for a couple of days, but would continue to sleep into the afternoon without an alarm (and waking up groggy). I have a friend with narcolepsy (not IH, like me) who found Modafinil slightly helpful for a few weeks, but found out that it quickly became ineffective. She has since switched to Adderall and has been successfully controlling her EDS for years. I am currently on the highest dose of Adderall my insurance will pay for (30 mg XR, 20 mg IR, and 10 mg IR), which worked well at one point in time. I set an alarm 1-2 hours before I need to get up and take my Adderall, which hopefully stimulates me to the point in which I won’t turn off 4 alarms in my sleep with no recollection. When I first started Adderall, I didn’t notice much difference with 10 mg IR 3x/day. I began to have some success once I was up to 50-60 mg/day (mixed XR and IR), and I can even remember a time when I would gradually wake up as the Adderall kicked in and didn’t need any of my next 4 alarms (those were the days!)
      Skip ahead 1 year, and now I feel as I am back to zero despite the 60 mg I take each day. I can easily sleep through both my XR and IR, and frequently have to take caffeine pill(s) along with the Adderall if I need to be awake for work. I no longer experience the good effects (alertness) or the not-so-good effects (decreased appetite, dry mouth, jitteriness) of Adderall at this point. If I take enough stimulants to actually stay awake, my body may be moving, but my brain still feels as if it is in a sleepy fog (try explaining that to your boss/coworkers). I have cried many times at the realization that this will be a lifelong struggle. I am currently in dire financial straits because I cannot keep up with a regular full-time job, and my $1,100/month in student loans are not going to disappear. I feel like I constantly let down family/friends, because I frequently choose napping over spending quality time with the people I love. My sleep doc is now switching me to Dexedrine, but seeing as how it is still another amphetamine-based drug, I do not have high expectations. I would love to have MDs at Emory test my CSF and/or to try flumazenil, but they are not currently looking for clinical trial participants, and even if they were I wouldn’t be able to afford the trip down there.
      I frequently say that I wish I had never had a sleep study; I had learned to [mostly] function the way I was, assuming that everyone else felt the same way and still made it through the day. Now I’ve had a taste of what it feels like not to be sleepy all the time; and that experience makes my current lethargy all the more frustrating. Every time I take an Adderall and then end up sleeping through it I feel defeated. Quitting my job that I got my Masters for – I felt defeated. Showing up late to every appointment or social gathering because I move at half the speed of everyone else – I feel defeated. Knowing that I may never be able to handle a full-time job or raise a family – heartbreaking.

      • McKenna McCue

        01/05/2015

        Rachel you literally wrote my story… well I have only tried Modafinil so far and it worked for about a week then completely stop and I started falling asleep standing and working… I am going to try dexmethylphenidate (SP), next so we will see. I struggled with this since I was a little girl and in high school It got so bad that I dropped out of school 3 times because I couldn’t function. My mom did not want to believe anything was wrong with me so she wouldn’t take me to get help. I now have a wonderful career that I do not want to lose, so I am finally getting treatment. I have a 4 yr old son and I can’t even function or play with him if we are not active and running around… I hate it and my son doesn’t understand why mommy can’t keep her eyes open.. I hope that scientist and doctors will realize how important it is and try harder to find a better treatment or cure. I am terrified I will lose my career and then lose my son…

      • laura babcock

        16/06/2015

        I am confused about the waking up to take the medicine and then going back to sleep. That in all I have heard, read and experienced is counter intuitive. First and foremost is disrupts your sleep cycle and in nothing else chops it up more which is limiting the effectiveness of sleeping. Second I can still fall asleep taking any of the medications I have been on. None of it for me has even made me more “awake” or energetic and anything like that. It only takes me mind off the constant inner monologue of thinking about sleep, trying to find a nap, and nodding off at traffic lights. My doctors have almost all recommended taking a B complex vitamin in the and melatonin at night to assist with the sleep wake cycle. Also making sure to stay on the strict sleep wake patter and even creating both sleep and waking rituals so that these ques assist in telling your body on a subconscious level when it is time to be awake and go to sleep.

        I don’t know that anything that I have said has help but maybe rethink or consult a doctor in other things outside of just prescribed medication you can do and best practices for using prescriptions. Being given the best tools in the world won’t help if you don’t know how to use them.

        • Allyson Edwards

          18/06/2015

          I have been on Adderall for almost 16 years since going through all the other medications that have been available. If I didn’t wake up at least one hour before I was supposed to be awake and take my first pill, there was no way I would wake up to actually get up.

          I eventually turned to taking the pill BEFORE going to bed and actually slept better and was able to wake up.

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  • Gillian Whipp

    13/08/2013

    I tried Modafinil, but still had low energy, grogginess and fatigue..it stopped me falling asleep, but gave me nasty headaches.

    The best for me is Dexedrine, though am still trying different doses, too much and I can’t sleep at night, too little and still tired in afternoons. It helps me to feel almost normal, which is amazing after so long in a sleepy fog!

  • Stephanie Bluff

    13/08/2013

    I have been on Modafinil for 10 years now and it used to work fine. I was percribed it after a stay in a sleep clinic. In the past 10 years my life has become more demanding as i have 2 young children and i am now constantly exhausted.
    The problem i find with this illness is that the local GP’s know nothing about it and are therefore unable to help with any problems.
    I was signed off work whilst i was pregnant as I was unable to take the medication and therefore unable to stay awake. I dont seem to be able to kick that now that i have returned to the medication and re-started work.

    I have recently been told by one doctor that more than 100mg of modafinil per day has no more effect than taking just the 100mg dose, however, i then went to see a different doctor and they increased my dose and therefore contradicted the previous GP.

    I am trying to get a further review at the sleep clinic to see if I am able to try other medication.

    What works best for you?

    Like i said i have 2 young boys aged 3 and 1 and have an office job working 4 full days a week. My partner is very rarely home as he is a chef and works long hours and therefore all household responsibilites also fall to me.

    Have you found any medication that works for you if you have a similar lifestyle to me?

    All help would be appreciated as lately i just feel that tired i just want to sit and cry.

    Thanks

    • Idiopathic Hypersomnia Sufferer

      13/08/2013

      Hi Stephanie,

      Welcome to the Living With Hypersomnia site!

      The general info on Modafinil is up to 400mg is okay. But beyond 400mg is unlikely to have any therapeutic benefit with much greater risk of side effects as you go higher. I’ve heard of people with IH being prescribed as much as 800mg Modafinil, though most people start on a 100mg or 200mg dose.

      As you can see above there are lots of different options. Have you tried Armodafinil as an alternative to Modafinil? Or discussed combining another stimulant like Ritalin with the Modafinil? It might pay to find a good psychiatrist who can help with your treatment plan as they often understand the drugs much better and can more confidently prescribe them for you.

      Lloyd

    • Tania

      13/05/2015

      I have to take 600 mg of Modafinil and a conventional stimulant 1.5 hrs before getting out if bed. Modafinil is safe to take up to the point where you have sideeffects you can’t tolerate.

  • farmrich.com

    31/08/2013

    Awesome. I agree.

  • Jennie Fox

    04/10/2013

    Hello! ‘m 28 and just diagnosed with IH. Has anyone here tried Xyrem? My sleep specialist is wanting me to take it. It seems like it’s meant exclusively for those with narcolepsy with cataplexy. I don’t have narcolepsy, but am borderline for it. I can’t take any stimulants to help with the daytime sleepiness because I have a heart condition and it would counteract my arrhythmia meds. I’m very hesitant to try Xyrem because of all the side effects I’ve read about. Anyone have any insight or advice? Perhaps any natural ways to deal with it? Thanks!!

  • elis

    22/10/2013

    can body/face massage help?

  • Paul Martozie

    15/11/2013

    I was diagnosed with IH 2 years ago. I have been on Concerta 27 mg ER and 36 mg ER, Modafinil 100 mg and 200 mg, Stratterra 60 mg, Adderrall 10 mg ER; 20 mg ER; 30 mg ER, Methylphenidate 10 mg ER; 20 mg ER. The Stratterra works somewhat to get me up in the morning for work. The stimulants work, but only for a couple hours, and my body gets used to them too quick so that I am always having to up the mg. I have tried diets, and taking out the caffeine; to no success. I work at a factory so I am always exercising, also trying to play with my 3 little girls, who are always very active! I am still struggling with being tired and all the effects of IH. I’m afraid to talk to my Dr., or try to find another one; I have been to three of them; 2 of them were “specialists” about this disease, and they thought I was lying to them. Any suggestions?

  • Fanny S

    23/11/2013

    My son was finally diagnosed with hypersomnia with too much GABA last year when he was 16 after 6 years of suffering. My husband is a child psychiatrist and he had tried him on all the stimulants, provigil, nuvigil to no avail. The Emory sleep clinic diagnosed him. They recommended claritromycin. He does not tolerate it well so he is taking instead minocin, another antibiotic. He has been on it for one year now and has had few sleepy days since then. He is back in high school after a year off due to the sleep and he is doing great.

  • DeAnne Tomboli

    25/11/2013

    I was diagnosed hypersomnia in May 2012. I have not been able to work since my doctor says I should not work. I want to work but I have trouble staying awake and trouble waking up. My doctor put me on Nuvigil and it did not work so he increased it and made little improvement but there was a slight improvement. However I have not taken it since March 2013 because I do not have insurance. When I was a child I had an allergy to wheat but never really paid a great deal of attention. In April of this year my sugar began to elevate and with a family of diabetics I decided to eliminate carbs and sugar and it has drastically improved my hypersomnia I am still having sleep issues but not as bad. I actually get out some socially and I can do some yard work and some some household chores. I use to sleep 18 to 20 hours a day I now only sleep 10 to 14 hours a day. It could be because of my wheat allergy and the elimination of it. My goal is to go back to work, I have worked since I was 12 years old and I am 48 now all I want is ti be able to stay awake to work.

  • Catherine Regueira-Freeman

    12/12/2013

    Hi, I was diagnosed with IH over a year ago at the age of 34. I’d been suffering for years but until I had a car accident when I fell asleep at the wheel I wasn’t taken seriously.
    Following polysomnograph testing and MSLT’s I finally got my diagnosis.
    I was taking Dexamfetamine Sulphate daily up until I fell pregnant.
    It worked wanders for me. I was able to stay awake at work and complete normal daily tasks, although I could feel it wearing off quite quickly. I also found that I could still sleep immediately after taking the drug, but with effort I could maintain a ‘normal day’.
    I am wandering how. Am going to cope with a baby!!
    Good luck everyone!

  • Anna Vance

    19/01/2014

    I have idiopathic hypersomnia and for sleep drunkenness (especially inability to wake up in the morning) I’ve paradoxically found some help by taking a short-acting benzodiazepine like Sonata at bedtime, on the theory that there is a GABA dysregulation and by increasing GABA at night (I also paradoxically have nighttime insomnia), decreasing GABA when the drug runs out a few hours later will help me wake up (this is only my theory, so take it with a grain of salt). Doesn’t altogether solve the problem, but I do feel better when I do wake up.
    I’ve taken minocycline with no effect, and am wondering if clarithromycin would be any different — anyone with experience on this drug, or with any thoughts on my GABA theory, please comment!
    Thanks!
    Anna

  • Kasha Oelke

    28/03/2014

    I know Levothyroxyzine (Synthroid) was the treatment tested as the thyroid treatment. On average it shaved off 4 hours of sleep per day and turned me from a long sleeper to a short sleeper- which actually mirrored the study results. It is not perfect because I still can’t function enough to work but you can’t deny that’s a huge improvement. There are several different kinds of thyroid medications; T3’s, T4’s, etc… Have you seen any studies on Armour & IH?

    The other medication I use is Rozerem. I use it in place of Melatonin because it’s more regulated than Melatonin. For me it helps more with my Circadian problems to keep me sleeping more frequently at night than all day. But I did notice that my sleep drunkenness and brain fog has improved greatly in the morning. My son has figured out to pry my eyes open & shine a flashlight in them- repeatedly- and eventually I wake up because the medication makes me hypersensitive to light. It’s not perfect, but it’s progress. :) I’d love to know if anyone else has the same results with these meds.

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  • Nora C

    09/05/2014

    I’m so thankful I came across this site! I’ve never heard of IH but I know
    I’ve had it most of my life. I’m 48 now but remember always arguing with my parents to wake up. Now I’m married and hiding naps from my husband brava use i felt like a lazy loser. Thankfully I was able to raise two great kids but stopped working because of anxiety and depression. I hardly leave the house because my husband quit asking to do things cause I was always tired. Now maybe if I can convince my GP to put me on something to allow me to maybe start living again.
    Good luck to all!

  • Sean

    10/06/2014

    Alertec — it’s a brand name of Modafinil in Canada (at least)

  • peter morror

    22/06/2014

    I am a normal weight and have had EDS symptoms for all the better part of 3o years. The sleep lab gave me a CPAP machine which did nothing for me ( I eat well, am about normal weight, and very active). Anti depressants were prescribed and did nothing as well. My sleep hygiene is perfect yet I only average about 2 hours deep sleep per night. IS THERE ANYTHING that helps promote deep sleep? I want to take something for my EDS other than a boat load of coffee any suggestions on that as well?

  • Lindsey Dickerson

    21/08/2014

    My doctor put me on Vyvanese for IH, is this a common treatment? If so could you add this to the list?

    • Idiopathic Hypersomnia Sufferer

      23/08/2014

      Thanks, I’ll add it to the list :)

  • Shawn Mc

    25/08/2014

    I was just diagnosed with this and I have been telling Dr.,s for years how tired I am and I always got a answer Asthma, Vit D deficiency Ect… but not until I could not drive did they send me to the sleep clinic.
    I have samples for Nuvigil and it helps some but not enough. My insurance might not cover this drug because the FDA has not approved it for Idiopathic Hypersomnia. I am turning 60 in a few weeks and I work full time. I have to be able to drive. What works good with Nuvigil?

    • Shawn Mc

      31/08/2014

      I was not able to get the Nuvigil so I am having to take Dextroamphetamine.

  • Alison Jeacock

    01/09/2014

    Although my son has yet to be positively identified with IH, he does share many of the characteristics of the disorder. We are testing out a treatment plan that is having some success, using melatonin, tryptophan and modafinil. We have done all of the testing available except a spinal tap.

    My only concern is that the specialists are overlooking a significant tendency towards weight loss in my son. At his lowest weight, he lost 7.5% of his weight in 10 months. (He is only 14). I am curious if anyone else has experienced significant weight loss or an erratic pattern of weight loss and gain prior to taking medication. I am aware that some of the meds prescribed for sleep disorders can cause appetite changes and possible weight loss, so I am only interested if anyone experienced weight loss prior to treatment.

    • Rene

      04/01/2015

      Weight loss can be related to an adrenal insufficiency, either primary or secondary. If you have not been to an endocrinologist you should see one. I keep finding correlation between the HPA axis in endocrinology and sleep disorders.

  • Dani

    12/09/2014

    I was on Modafinil for years and still couldn’t regulate my sleep. I had to quit the drug beacause it felt like I was going crazy. Also Modafinil worsened my cognition and made it impossible to think.

    • jana suver

      03/10/2014

      Hi, Dani,

      I´ve been taking Modafinil almost for 2 years. And I also have the feeling that my cognition got worse (especially the memory – I forget so many things and information!!!), even though Modafinil is supposed to improve it …. Did your cognition get better when you stopped with modafinil?

  • Joel

    29/09/2014

    After 34 years of madness, IH might very well be the main reason behind my surreal existence (trying to get this diagnosed now). I’m curious to other people’s experiences though:

    Apart from extreme sleep drunkenness, I’ve suffered from orthostatic hypotension all my life. Anyone else had this?

    As a child, I had (and still have) migraines, cluster headaches and what could be called sensory processing disorder. Any bells ring?

    I also had very strange reactions to SSRIs, whenever my doc would try them. The world tuned yellowish, and the last time it through me into hypomania. Is “soft bipolar” anyhow associated with IH?

    • Rene Bachman

      22/10/2014

      I’ve dealt with IH for years. I was lucky enough to be tested for growth hormone deficiency and cortisol deficiency by an endocrinologist during and insulin tolerance test. It was discovered that my brain (HPA axis) doesn not produce enough ACTH. The ACTH tells the adrenal glands to produce cortisol. This lack of cortisol caused me to have othostatic hypotension. The diagnosis is secondary adrenal insufficiency. Since being on cortisol (will be the rest of my life) and having a thyroid diagnosis the sleepiness has improved and I can at least work part time. What you want to request is an 8:00 am blood cortisol screening. I willalso share that being on the cortisol helped me handle stress more successfully, I stopped feeling like my body wanted to explode during times of stress where I knew I should not feel stressed.

  • vivienne sinclair

    25/10/2014

    Hi, I have had extreme daytime sleepiness for several years now, initially I was diagnosed with sleep apnoea and spent thousands on CPAP gear. I stopped using it over a year ago and last week had another sleep study – no sleep apnoea, now saying I have Idiopathic Hypersomnolence. I have been using Modavigil for some time now(100mg once or twice per day) but find it does not work well enough. I am still falling asleep (always) while driving, doing anything on the internet etc. The sleep specialist is prescribing Dextroamphetamine, but after reading all the side effects apart from the ones he told me, I really do not want to even go there. I know for a fact (even with a letter from him) noone will want to employ someone taking SPEED. Any suggestions?

    • Idiopathic Hypersomnia Sufferer

      28/10/2014

      Hi Vivienne, Many people with IH find they need 200mg+ of Modavigil to get good results. Some people find 200mg okay, others need 400mg, and some outliers need as high a dose as 900mg~! Worth discussing with your doctor and seeing if a dosage change would be possible.

      Dexamphetamine used medicinally is VERY different to street speed used for a high. Remember, we aren’t doing “drugs”. We are taking “medication”!

    • Chantale Bailey

      28/11/2014

      I have tried several meds to help me sleep but they did not work. So they tried meds to keep me awake. He tries to give me ones with less side effects and Vyvanese is the one that works for me. I am not 100% with it. I still forget things,can not quite concentrate at times but it lets me be able to drive my kids to there events. That was my main concern is staying awake while driving. Hoping for the best in your search.

    • Jen p

      03/02/2015

      Vivienne. I’m not sure where you live, but here in the states I have never had a problem passing a drug screening for a job with a prescription, even Ritalin or adderal (amphetamine class stimulants for IH). As long as you have a prescription and you aren’t hiring on for a driving position, it shouldn’t be an issue. They just validate the prescription is legit and you are good to go.

    • laura cb

      16/06/2015

      I can’t say anything about your choice to take the drug or not. I have used it and to varying degrees it has worked for me. Everyone is different.

      What I did want to comment on is that what medications you are on should be of no concern to your employer. Because of privacy laws you do not have to disclose to them what you are taking or what medical conditions your are being treated for. Depending on the situation I have been up front in certain work situations only for the reason that I am on a maintenance medication and if something should happen EMS might need to know.

      This medical issue should in no way impact if an employer is going to hire you and if it does that is discrimination. The only thing to consider as others have said it the level of activeness in your potential job and the less active the more likely your symptoms will be more present.

  • Britney Twilley

    20/12/2014

    HELP!!! PLEASE!!! I have been on Adderall instant release 30mg 3x a day for months and it was working. Before that I tried Adderall XR all the way up to 30mg, Concerta, Ritalin, everything that has less strength than Adderall. My Nurse Practitioner had to convince my GP to go from twice a day to three times a day on the 30mg Adderall. I was always tired, no energy and worse than all that, I was falling asleep at work and driving.

    Well, now it is coming back. I am tired again, no energy. I work nights and toward the end of my shift about 3-4am I am fighting to stay awake and then on my drive home when I get off at 5, I am nodding off. I have an hour drive home. I am back to nodding off and hitting the bumps on the side of the road that pop me awake, sometimes hitting them on the opposite side of the road and thankfully there hasn’t been any oncoming traffic. Thankfully there are the bumps on the side of the road otherwise I would be going off embankments in some places.

    Sadly, all of this has been caused from a car wreck. I had a horrific car accident in 08 – severe head trauma, wasn’t supposed to live, broken femur, rod in the leg, had to relearn how to walk, now I have dystonia (a movement disorder that effects every aspect of my life) and the dystonia brings on other disorders over time. That has brought on the hypersomnia, vertigo migraines… but now that it seems the Adderall is not working….what is my next option?

    My Family Doctor doesn’t seem to be too keen on the idea of going any further with the Adderall. He says that 90mg is the max. However I have talked to and read of others who take more or take that plus extended release or that with other types. So I am guessing I am going to have to go back to my Sleep Specialist. But does anyone have any suggestions as to where to go from here? I am lost and scared….I am having these vertigo migraines that are effecting things and trying to control them, my dystonia is getting worse and the botox can only help to a certain point and only in one area and I am effected all over, and now I am back to having these problems with the sleep….please any suggestions would be greatly appreciated. I apologize for the length.

    • Rene

      04/01/2015

      I hope you have seen an endocrinologist to keep an eye on hormone deficiencies that are linked to brain injuries. I happened to be reading the research about this for someone else this month who had a TBI. If you need to look up studies to support a referral for an endocrinologist look up HPA and traumatic brain injuries study. HPA is for Hypothalmic Pituitary Adrenal Axis.

  • Heather Jean

    10/03/2015

    I have just been diagnosed with IH but have suffered for years. I am about to get married and my fiance really wants kids. Is this advisable with this condition?

  • Sheryl Bee

    18/03/2015

    When I had a sleep study done at age 52, they asked me to return (once I had the new apnea machine), as they wanted to test me for something else. So I did, slept all night there, and then they had me try to fall asleep again at 9AM, 11AM and 1PM. Each time it took about 2 minutes for me to fall asleep. The diagnosis: severe idiopathic hypersomnia. Taking Provigil (200 mg/twice a day) was like a miracle to me. When Nuvigil came out, they had me try it, but it didn’t work at all. If I am driving a car for longer than 30 min., I take one pill of 10 mg. of Adderall. This will last about an hour & a half. I repeat it, if I still have a long way to go. I have had this all my adult life. At age 19, when I got my 1st car, I went on a trip, but couldn’t stay awake. I stopped at a rest stop in Northern Michigan at about 2AM to take a nap. Later, I woke up and I was back out on the expressway, driving the car! This was rather horrifying to me. My career as a social worker and later, as a special education teacher has been very successful. My life has been a series of naps, especially if I’m driving. When driving, I never fall asleep where it’s quiet and dark, as I’m afraid of driving while sleeping. When my children were little, I’d stop when I thought I was falling asleep and leave the car running. When the digital clock showed a certain number (usually 5 minutes later), then my daughter would wake me, if I didn’t wake first and we’d continue on our way. For awhile I was a homebound teacher, driving 200 miles a week and I constantly prayed that I wouldn’t fall asleep at the wheel. Once I was tape-recording my little girls singing and I started to fall asleep and you can hear it on the recording. I’m repeating over and over, “just let me sleep for just 15 minutes” and then it’s just the sound of them playing near me on the floor and you can tell I’m out cold! Fifteen minutes later, I wake up and tell the children how wonderful they are, “the best children in the whole world” and give them each a treat. My girls thought it was just normal behavior to have a mother who took constant naps! They are grown now with very successful careers and thank God, neither have IH.

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  • Tracy

    28/03/2015

    I have been taking Provigil (Modafinil) for 14 years, 400mg per day. It is a miracle drug for me and also a nightmare. The miracle is that I can stay awake past the previews before a movie starts, I don’t dose off at traffic lights, I can read a book without losing my place (fall asleep on the first page) and I can function daily without sleeping an extra 2-5 hours during the day. The nightmare is dealing with an insurance company (recently, Priority Health) that thinks I need to prove over again that I need this medication instead of other treatment. Priority Health the insurance company I now have to go through because my wife changed employers and I am self-employed will not approve this medication. I also had to change my primary physician who is inexperienced along with a nurse that does not seem to want to go the extra mile to help. The specialist that first prescribed this for me does not keep medical records past 10 years and the new electronic system only records brief notes. The last month has been almost unbearable; going off this drug cold turkey is like the strings of a puppet being cut. * I finally did get someone at Priority Health to listen and not just talk over me reciting their rules. This person is now actively though with resistance from my new doctors nurse, is helping me. She also got it approved so I could get 1 month of this drug. :) ** Because I am a new member I am allowed this transition period. ** IT WOULD HAVE BEEN NICE IF THEY HAD DONE THIS A MONTH AGO. I took my full dose this morning for the first time in over a month. Also, I have to pay $100 per month now when I had been paying $60 for (3) months. Generic? The cost use to be $500 before it went Generic, it is now $700. $240 extra every 3 months puts a real hole in our budget since my wife now makes 1/3 of what she was making. At least I will be awake to do my work.

    Any ways, this medication has worked great for me for 14 years and my family will all tell you this too.

    Good luck to all of you who suffer from EDS.

  • Leonie Beaulieu

    29/03/2015

    So glad I found this site. I have had Idiopathic Hypersomnia for 5 years. It took 2 years to get a diagnosis having lost 3 jobs and my drivers licence. I remember being so relieved that it had a name, that it was real, but in reality my nightmare was only just beginning. I was prescribed Modafinil which keeps me awake, but I’m still constantly exhausted. I can’t concentrate, all I want to do all day is sleep but I don’t actually fall asleep any more beyond the reasonably normal 10 hours or so at night. The problem with this is I now pass the MSLT that I failed 3 years ago, and because I don’t fall asleep every 2 hours, my doctor says the drug is working and refuses to try anything else for my exhaustion. I can no longer work, had to move out of the city due to not being able to pay rent, my husband is working as hard as he can but we are barely getting by. I feel like I am no longer living but just existing. The new doctors in my new town are dismissive of me. “Try to going to bed and getting up at the same time every day”, “Try having a warm bath before bed”. They re-fill my prescription but won’t consider anything new. If I ask about medicines I’ve researched they treat me like a hypochondriac looking up disorders online even though I’ve been diagnosed, or even worse, like a drug addict angling to get prescription methamphetamine’s. I’m at the end of my rope. My husband deserves a better life. I don’t know what to do.

    • MTor

      27/05/2015

      Que bom encontrar este blog! Por muitos anos tomei doses cada vez mais altas de cafeína, até que não funcionava mais para me manter acordada. Após diversos exames, meu médico me indicou o Concerta 36mg, mas o efeito acabava após o almoço. Hoje tomo 2 comprimidos de Concerta 18mg (um de manhã e um a tarde), 2 doses de Stavigile 100mg (de manhã e 1 a tarde) e 50mg de cloridrado de Sertralina. Tem funcionado melhor que outros tratamentos, apesar de ainda não ser o ideal.

  • Amanda Hans

    31/03/2015

    I was diagnosed with Idiopathic Hypersomnia in 2009, I was quickly placed on a combo of medicines Nuvigil and Adderall. I took these as prescribed until 2014 when I started to experience shortness of breath, chest pains, a feeling of heaviness in the chest, and pains in my left arm. I avoided being seen for these for 6 months. I finally went into a ER where I was tested, checked and told I had pulmonary hypertension. I was sent to a pulmonary specialist, she ran test upon the results sent me straight to a heart specialistwho ran more test and told me in short I have cardiovascular disease caused by adderall. I still have Idiopathic Hypersomnia but can not be treated for it because any medicine used to treat it makes my condition worse. I am not telling people this to scare anyone but please treat these medicines with the respect they deserve because as quickly as they can provide relief for this disease it can open a new can of worms and the next person may not be lucky enough to catch it in time.

  • CCIH

    15/04/2015

    I was diagnosed with obstructive sleep apnea (OSA) in 2007. Despite success in treating my OSA with a CPAP, I continued to suffer from excessive daytime somnolence; Provigil and Nuvigil did not help. After five years of struggling with excessive daytime somnolence aka brain fog or sleep drunkenness, I learned of the work at Emory University.

    After one visit I was diagnosed with IH and reacted well to clarithromycin. Also tried flumazenil with mixed results; the transdermal seemed to work better than the lozenge but now neither dose form appears to work. Have any of you with IH experienced a similar waning of efficacy with flumazenil? Can any of you with IH comment on how you feel your IH may or may not be progressing over time?

  • Alisa Ashouri

    25/04/2015

    I just stumbeled across this page looking for something else. This is an answer to prayer. I have been treated for everything else! Depression, anxiety, insomnia, lupus, anemia, thyroid. And yet, I still sleep 12 to 16 hours a day. I have been fired from dozens of jobs because I can not get up in the morning or fall asleep in meetings or seminars. I have tried to explaini to people that I don’t know how I can possibly be tired after so much sleep but I am. And yes, I do gain weight. In the last 7 years my weight has increased by more than 150 pounds. I have no life. It is just me and my bed. I have tried vitamins, supplements, everything. My muscles are literally atrophying from so much time in bed. I saw some improvement when I was on Ambien but then became afraid I was addicted to it so I stopped taking it. If I hve an infection and they put me on steroids I have improved energy. I am at the end of my rope. I have thought about suicide many times. And tried it twice. This is no kind of life. Is this what used to be called chronic fatigue. I have applied for disability but had to list bipolar disorder as that is the only thing I have been diagnosed with on the disability list. I dont know where to turn.

  • Crystal Lyon

    04/05/2015

    Is there a safe treatment of IH during pregnancy? I usually take modifinil, but it’s not safe to take at this time. I’m struggling at home and work and need a safe alternative. Something other than exercise and eating right- I do all that and it’s not successful keeping me awake and focused.

  • Tania

    13/05/2015

    I have several alarms go off on my cell phone(placed in airplane mode at night) set for a few minutes apart 1.5 hours before I have to get out of bed. I could t out my pills the night before and have a glass of water on my nightstand. I take 600 mg of Mofafinil, 75 mg of Vyvanse and 1 IRC caffeine pill 1.5 hrs before getting out of bed. The Vyvanse replaced dexodrine about a year ago but I do t find it as effective. Now that I’ve had a break from Dexedrine I might go back to to it, starting at 15mg extended release instead of the Vyvanse. When I found out I was pregnant I immediately went off all medications (and on disability) without any withdraw. I had horrible withdraw from all the crap I was on when I was mist ignored with dysthymia and major depression. Life for me changed when Ritilin was added to my cocktail to ohm envy tbe drugs that weren’t working. I weaned off of the antipsychotics, anticonvulsants and antidepressants and stayed on the Ritlin while I waited to see a sleep specialist. Modafinil was not common in Canada then but after researching trearments I was determined to try it.

    Unfortunately I was taking my meds for the first 7 weeks of pregnancy. I’m not sure if that, and not knowing to keep wireless devices away from my tummy contributed to my son being diagnosed with Autism Spectrum Disorder by the age of 3.

    Now that i think I have peri-menopause my sleepiness is much more profound so I’m back researching the latest treatments.

  • Tired Nurse

    12/06/2015

    Is there any hope for this disease? Seems like having this disease right now is life sentence of fatigue because they don’t understand it well on a mainstream level. I go to the Fairhill Neurologic Center through the Cleveland Clinic in Ohio, world renowned hospital or not, I can’t say I’m impressed with the care I’m getting. I have to see a fellow every time I go, she mostly argues, blames everything on something different every appointment which will often contradict what she said at the last appointment. I have sleep apnea as well, religously use my cpap machine but it was no silver bullet for the fatigue. One of the actual sleep medicine doctors at Fairhill says I likely have multiple causes contributing to my fatigue, the fellow likes to blame it on me and things in my life I really can’t change. Can’t tell my 2 year old I can’t care for her because the fellow says I sleep wrong. I’ve only worked night shift a few months, worked day shift for years and was a real wreck, just can’t handle working the busiest most drama filled shift while being so tired I feel like I can fall over any second, for less money too.

    Per the CPAP machine I average 7.5 hours of sleep with the CPAP machine alone, I rip it off for probably another 6-8 hours per week, have to nap at work every night for a half hour minimal or the fog is so severe I am afraid I’m going to miss something and cause harm to someone (I work in medical). If I didn’t have excessive bills and debt that force me to work overtime weekly, children, a spouse and a house to care for I’d probably never get out of bed. When able I can sleep 12 hours straight and wake up tired and ready to nap in a couple hours.

    Medicine wise, I took nuvigil for 2 weeks, it was amazing, felt like I had my life back, then it promptly stopped working and started causing an awful restless pain in my shoulders and neck. The fellow looked at me like I was nuts even-though it’s a pretty common report from patients all over the net. If they don’t fully understand how the medicine works how can they pretend to be surprised when it stops working? Today I was prescribed provigil 200mg daily, not sure how this is going to help but hey I’ll try anything at this point.

    I use a therapy light at work, the bright light seems to make me more tired but who knows if that’s even possible. I never had the MSLT because I had apnea, I asked for the MSLT today and the fellow said it’ll give me a “false negative narcolepsy diagnosis,” false because I’m currently working night shift, not sure how that makes sense. I’ve been using adderall off the record for the last couple years, it’s the only thing that gives me enough oomph to get through the shift, be a good parent and spouse, keep the house somewhat clean and the laundry somewhat folded. I’m barely getting by. Afraid to mention the off the record use to the doctors, don’t want to be seen as a seeker. I just want to feel normal which seems to be too much to ask for. The attending that came in after the fellow said if provil doesn’t work they’ll order the MSLT. I fell asleep in 3 min during my initial sleep study with EEG, which felt like a long time so I bet my average is around 2-3 min. Yet another attending I seen at the end of three appointments now documented she suspects idiopathic hyperomnia, residual fatigue despite good CPAP compliance, fatigue secondary to depression, and shift work disorder. Yet it seems like I have to fight for any type of Rx that might make my life not a sleepy foggy delirium.

    Any advice on doctors to see somewhat close to Cleveland Ohio? Advice on how to find a doctor who is remotely sympathetic to this disease? Any advice period? I can’t imagine dealing with this the rest of my life, I don’t have the energy to fight, losing hope fast.

  • Stinne Thuesen

    13/06/2015

    I’m 31 years old and on Modafinil and it changed my life! I had som counseling too to help me come up with helpful strategies for dealing with the tiredness. Since then I have been able to keep a job – and have a social life too!! I rarely take naps now (I feel like I’ve been sleeping too much of my life away, so if I’m able to avoid it I will). I don’t work fulltime but when I’m at work I don’t fall asleep. There’s been sideeffects like racing heart (shortly), dry mouth, aggression and loss of appetite. When I’m extremely fatiqued like aften a long flight, I’ll be dizzy for days. Still it’s worth it – I have my life back.

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