Have you ever been diagnosed with idiopathic hypersomnia?
Have you been diagnosed with idiopathic hypersomnia (IH)?
Idiopathic hypersomnia (IH) is a chronic sleep disorder that causes excessive daytime sleepiness. You can find more information about this condition on this page: https://narcolepsy.sleep-disorders.net/idiopathic-hypersomnia
If you have IH, how have you managed your excessive daytime sleepiness? Have you found any medication or alternative treatments that have worked for you?
2018.
I would write more but I'm suddenly needing to fo back to bed.
argh.
gonna miss another appointment.I was diagnosed with IH in 2015. For me, it was definitely a life changing diagnosis that will challenge me daily for the rest of my life. At first, I was able to find a good sleep clinic that took good care of me. They managed my care & medication for about 3 years. They were able to find a stimulant medication that I was prescribed twice a day & really helped me to stay awake & alert during the day so I could still work full-time & take care of my then 5 year old daughter. I still had days that the medication didn't control my EDS every now & then but, my life was still somewhat normal then. Since then, I have been diagnosed with bipolar disorder & was on medication for that issue as well. I moved to another state, & since then moved back, & I have had a hard time finding a Dr that feels comfortable treating both diagnoses & mixing my BP meds & IH meds because of possible side effects or contraindications. I have never really had any prior side effects before when taking either meds. But I have been struggling since 2018 because of this. I do not work anymore because of not having meds, & plan on applying for disability soon. Not being able to work has probably been the hardest thing to cope with. My daughter & I have moved back home to my mother's house & no longer have our own home. I am very grateful for my mom & thankful that she has been helping us & letting us live with her. It's just hard to lose work, my home, driving, & miss out on my child growing up since being diagnosed so it's been a rough road to say the least. I am just hoping that these new medications they are FDA approving are good & one of them might possibly help me get my IH back under some control. Thank you for listening to my story. ❤❤❤❤
Thanks so much for sharing your story about your journey to a diagnosis and treatment of Idiopathic Hypersomnia! I am so sorry to hear that you have been unable to work or drive due to your symptoms. This can be so scary and frustrating. I hope that with medication developments you will be able to find a treatment that works for you. Even reducing symptoms is worth trying medications, in my opinion (I live with type 1 narcolepsy). It took months, even years, to find the right medication regimen for me, personally. And this is often the case for people suffering from sleep disorders like IH and narcolepsy. Has there been any update on your condition and treatment? If you'd like to read an article on current IH treatment options you can find it here: https://narcolepsy.sleep-disorders.net/idiopathic-hypersomnia-treatment Hope this helps! Many treatment options for IH overlap with treatments for narcolepsy. So we might have tried similar medications. I think that's really interesting! Warmest regards, Tatiana (narcolepsy.sleep-disorders.net Team Member)
I was diagnosed with IH in 2018. I am currently on a treatment plan and my really sleepy days are better by 1/3! Between the medication and some life style changes I have a few days a week that I am mostly coherent and aware and I'm grateful for each and every one of those days.
I'm so grateful for the information and the community I've gathered from this site.
Hey, glad to hear that you have managed for find a treatment plan that is working for you! What life style changes have you made that have helped you? So happy to hear that you're finding the information and the community beneficial. We're so happy that you are here! Best wishes, Bella (Team Member)
Though I've been diagnosed with type 1 narcolepsy, my son has been diagnosed with IH. He will take naps after school when possible, exercises regularly and has a very extensive routine and takes baclofen to ensure he sleeps at night.
