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Living with Idiopathic Hypersomnia. How to live with Idiopathic Hypersomnia?

Can you be happy living with Idiopathic Hypersomnia? What do you have to do to be happy with Idiopathic Hypersomnia? Living with Idiopathic Hypersomnia can be difficult, but you have to fight to try to be happy. Have a look at things that other people have done to be happy with Idiopathic Hypersomnia

Living with Idiopathic Hypersomnia

Living with Idiopathic Hypersomnia


Idiopathic Hypersomnia is a chronic neurological disorder characterized by excessive daytime sleepiness and difficulty waking up. Living with this condition can be challenging, but with proper management and support, individuals can lead fulfilling lives. Here are some strategies to help navigate life with Idiopathic Hypersomnia:



1. Seek Medical Guidance


It is crucial to consult a healthcare professional who specializes in sleep disorders. They can accurately diagnose your condition and develop a personalized treatment plan. Medications such as stimulants or wake-promoting agents may be prescribed to help manage excessive sleepiness.



2. Establish a Consistent Sleep Routine


Creating a regular sleep schedule is essential for managing Idiopathic Hypersomnia. Aim to go to bed and wake up at the same time every day, including weekends. This consistency helps regulate your body's internal clock and promotes better sleep quality.



3. Create a Sleep-Friendly Environment


Make your bedroom a sanctuary for sleep. Ensure it is dark, quiet, and at a comfortable temperature. Consider using blackout curtains, earplugs, or white noise machines to minimize disturbances that could disrupt your sleep.



4. Practice Good Sleep Hygiene


Adopting healthy sleep habits can improve your overall sleep quality. Avoid caffeine and stimulating activities close to bedtime. Establish a relaxing bedtime routine, such as reading a book or taking a warm bath, to signal your body that it's time to wind down.



5. Take Strategic Naps


While excessive daytime sleepiness is a hallmark of Idiopathic Hypersomnia, strategic napping can help manage fatigue. Keep naps short (around 20-30 minutes) and schedule them earlier in the day to avoid interfering with nighttime sleep.



6. Prioritize Physical Activity


Engaging in regular exercise can boost your energy levels and improve sleep quality. Aim for at least 30 minutes of moderate-intensity exercise most days of the week. However, avoid exercising too close to bedtime, as it may interfere with falling asleep.



7. Build a Support Network


Living with Idiopathic Hypersomnia can be emotionally challenging. Surround yourself with understanding and supportive friends, family, or support groups. Sharing your experiences and concerns with others who can relate can provide comfort and valuable insights.



8. Manage Stress


Stress can exacerbate symptoms of Idiopathic Hypersomnia. Explore stress management techniques such as meditation, deep breathing exercises, or engaging in hobbies that bring you joy. Prioritizing self-care and finding healthy outlets for stress can improve your overall well-being.



9. Educate Yourself and Others


Learn as much as you can about Idiopathic Hypersomnia to better understand your condition. This knowledge will empower you to make informed decisions about your treatment and advocate for your needs. Educating your loved ones about the disorder can also foster empathy and support.



Living with Idiopathic Hypersomnia requires patience, self-care, and a proactive approach to managing symptoms. By implementing these strategies and working closely with healthcare professionals, you can improve your quality of life and find ways to thrive despite the challenges.


Diseasemaps
7 answers
Yes with the right treatment doctors and support plan

Posted Jun 6, 2017 by Candice 2150
Yes, it is okay to live with IH. You may quite possibly experience depression after your diagnosis, because your previous life has ended. It is best to have a good support system (family or friends) to help you through the hard points.

Posted Jun 7, 2017 by Sarah 2050
I try to make time for a two-hour nap every day. This allows me to function ok most of the time. I am a teacher, I have friends and family I do things with, and I'm happy.

Posted Oct 1, 2017 by Sarah 400
This is a strange question, to me. As with anyone, we choose to be happy or not. No person, disease, or other issues can make you feel anything. I try to stay positive, but sometimes hard, when you know that your symptoms are getting worse.

Posted Oct 4, 2017 by Rita 200
I was diagnosed with IH five years ago at age 66. The IH is getting much worse and my doctors have had to consult with the Mayo Clinic on how best to help me. I am very grateful for their care and concern. I look at my cup as half full and not half empty. Had the IH manifested at birth since it was within me then, perhaps my parents would not have known how to care for me. Perhaps the doctors would not have known what was wrong. Would there have been drugs available? Would I have been able to attend school? Would someone have wanted to marry me? Would I have had a successful career? I led a wonderful life before my IH manifested all of a sudden. I have been researching why it manifested so late in life and now have some good ideas of what happened. I am extremely interested in researching. Yes, it is still difficult for me to believe I have a rare genetic disease. But, I have to live with it.

In retirement I am very active. I am an author, an artist, and I love to travel. I will not allow the IH to get in the way of my life. I observe strict sleep hygiene. I take only "power naps" that are no longer than 20 minutes in length. I have learned if you sleep longer than that you wind up getting too much sleep and it will make you more fatigued the next day. I take perhaps three power naps during each day and evening. I have had to experiment when I take my Nuvigil and Ritilin to make it work best for me. I wear a tracker that monitors my deep sleep v. light sleep. That is helpful.

Sure, there are some things I just can no longer do. I have reduced my volunteer activities, but that is okay. I do what I most enjoy and it is be with my family, write books, paint, and travel. Life is good.....even with IH.

Posted Jul 20, 2018 by Jeannine 100
Forget about the clock. Let time go . Let judgment go . Ignore public opinion and except who you are . Sleep when it's best for you. But a decent mattress. Quilt and magnet bed protection. Black out curtains. Pain gone pen . Get on modafinil. Melatonin. Serotonin. Study lIke mad about your condition. Knowledge is your friend. Join the Facebook group. Remember to be proud of yourself for surviving. Audible is my sleep budy and voice in my head distraction. Except you have anxiety. Try live the best you can. Smoke what you want wink wink.

Posted Oct 16, 2018 by Kathy 1600

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IH is hard  to explain to anyone and nobody believes you anyways. I was always tired and they ran every single test I could think of and finally one day a doctor suggested I get a sleep study done.  The sleep study showed nothing so they set me up ...
Idiopathic Hypersomnia stories
I ha e been dealing with IH for 10 years before being diagnosed. Started when I was 19 and having a hard time staying away while driving and only got worse as time went on. Many many test and many army doctor not listening or just putting it up to an...
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J'ai etait diagnostiquer HI il y a 1 ans. 
Idiopathic Hypersomnia stories
Idiopathic Hypersomnia stories

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https://sleepandbleep.weebly.com/   Visit my new website and help me build a supportive community. My goal is to provide a one-stop-shop for those with IH to seek advice from others going through similar circumstances, promote self-advocac...

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