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

53 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.

  • 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.

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    07/08/2013

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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

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    31/08/2013

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  • 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.

  • 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.

  • 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.

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