Rising Voices: Living with Idiopathic Hypersomnia - Amy Desmarais
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- เผยแพร่เมื่อ 10 ก.ย. 2024
- Amy Desmarais is a long-time supporter of and volunteer for the Hypersomnia Foundation and currently serves as the organization’s Treasurer/Chief Financial Officer. She talks about her experience of living with IH and successfully managing her professional, personal, and family life.
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I can sleep for 3 days and still struggle to get up for work.
I've been suffering for over 41 years and after my 7th sleep study I have been finally diagnosed with IH. Thank you for sharing your story.
Oh my, I can relate to this story so much. I have been experiencing all this for as long as I can remember. I was first diagnosed in 2010-ish and able to get on stimulants which helped me function better. Before that, I felt like a addict but for sleep. I couldn't think of anything else but to sleep and my motivation to do anything was a step closer for me to go to back sleep. I had a difficult time surviving being awake. For the longest time Drs would say I was depressed but I didn't have any symptoms of depression other than sleeping all the time. Since I've been diagnosed life/surviving has been more manageable. Taking stimulants allows me to complete tasks without being so focused on how I can get to sleep faster. However, I feel having IH will not allow me to be a parent. I feel I can barely do what I should and what has gotten me this far is having supportive people close to me. I am lucky to have a partner who understands and helps me manage my IH.
Me too with stimulants. It makes me feel like an addict but when I don’t take my stimulants, I slumber for weeks and forget what week it is. On stimulants, I sleep and feel good on 6 hours and get things like laundry and gas done.
Too bad the government is on a continual spiral of increasingly restricting these meds literally into unavailability..
I never feel like I sleep. I'm so undependable for others even after their major surgery. If people wake me I yell and scream at them. I feel like my body is trapped and I'm in this hell world where I can't wake up or stay awake I stumble around and I just won't talk to people. I don't schedule appointments until after 3 now. I am always always sleepy. I don't drive like that and others get mad at me and tell me how much they do for me and I can't even help them. It hurts. I've been like this since 2001 with worsening symptoms then I broke my back. Game over. I do not have an actual ih dx I have a psychophysiological insomnia dx and ADHD that I finally sought treatment for after 40 years just to help in trying to relieve some symptoms. They tried to get modafanil approved but I need another sleep study with latency test and I can't go two weeks without anything. I barely swueek by now. And that just my own opinion. I just don't know how much more I can take. I have no emotional support I can't work and now have long covid/autonomic dysfunction it's completely rediculous
You still have 'people'?
This is insane. I think Amy is me in a different universe lol. I’m also Amy, also living with IH, also a clarinet player, also would sleep in my jeans to maximize my time in bed, also would sleep with friends all around me taking pictures of me thinking it was funny, I could go on and on and on. The only difference here is I’m a bit younger (24 currently) and not in the same career field, and my IH actually affected my grades during grade school and college. I have a neurological disorder I was born with which my doctors believe to be the cause of my IH. But damn, it’s funny hearing somebody describing myself almost entirely lol
I was a bed wetter till the age of 22. It was fixed with 3 different meds. I assumed my severe difficult waking up (at whatever time) was because of my bed wetting. But the bedwetting stopped, the waking up and sleep issues didn't. I assumed I was a deep sleeper, I was told I was not a morning person, I was told I was someone who 'simply' loved sleep, so I tried to be normal with my abnormal health for decades. Holding a full time job was the toughest thing ever. I totally gave up on having kids, later on having a career. I had other mental and physical health issues, and started dealing with severe chronic pain which affected my sleep, meds made me sleep and took over my life. The diagnosis fibromyalgia I thought explained my sleep issues - 'waking up feeling not refreshed' was a symptom, but it still didn't explain everything. Now at age 45, I have to live with my family, I can't work for a classic job, I have no social life because I'm exhausted all the time, I go to bed around 11-12 and try to wake up at 10:30am every morning but getting up is so so so tough. Pain is one thing, but the feeling of having not slept at all is the worst. I have no diagnosis, because I don't know who to go to. My story is too complex and I doubt any doctor would be willing to tackle my issues.I feel hopeless .... and forever exhausted.
This is the best video Ive seen that educates about IH and actually shows how hard it is to live with
The nailed board between the eyes that one has to lift with your eyelids is a great analogy.
Imagine knowing you have something wrong but not knowing what all your life. Being teased for always being sleepy. Afraid to get married and have little ones…well I did get married at 38 and got pregnant right after and as Amy for the first time since I was a teen I felt awake. My symptoms just came back after my second pregnancy in 2020. I just got diagnosed in 2023 and I felt overwhelmed with relief that I have finally been diagnosed. I related to everything Amy shared but the pregnancy experience is what has me posting. I felt that if pregnancy made me feel awake then there must be hope for a cure.
Pregnancy definitely improved my IH symptoms but almost immediately upon delivery, the symptoms were back and worse. I worked full time up until delivering both of my kids (so it's not like my pregnancy meant less work/more rest) ❤❤❤ IH is a bummer and I also see it as my super power, I can fall asleep whenever wherever (which has its drawbacks of course)❤❤❤
Awesome presentation! I am starting my journey today as a sleep technologist. This has been eye opening for me and I will be more aware of the possibilities in sleep medicine. Thank you!
My pregnancy has changed my brain too...I can relate to.what.u were saying
I have had IH since my brain tumor diagnosis in 2002. It cause my divorce as he did not care nor try to understand what I was experiencing. I still struggle.
Later on life my family told me many times coming by I be asleep when I had more of sleep when I got older. Not say about my eyes when people take or family take a picture i have always close my eyes. This a very help so true. I see lil people know about it and just judge well I have tooken test and gotten diagnosed by my own family.
I have dealt with this for years and no one listens 😢
wow this is so relatable. in my 20s dealing with this and everyday is a challenge.
What is your sleep schedule, how late are you go to bed? And how late are you wake up?
I believe there is a cure for this problem.
I am currently two years without effective medication for my IH/ narcolepsy type two. I have been unsuccessful in finding a qualified sleep specialist, I have wasted time with four board certified sleep specialists. I have now given up on life
Me too. Why pulmonary doctors? Apnea is only a tiny piece of I H.
68 yrs old I barely have 1/2 day per week awake. this is no life.
@@meman6964 I am also 68 years old I completely agree pulmonologist is not qualified for IH/narcolepsy 2 treatment ..OSA sleep apnea sure any RRT is qualified for treating that. I am a registered respiratory therapist, retired, after all we were responsible for complete ventilator management.
I suggest you see Dr Rye at Emory in Atlanta
Keto and carnivore diet put alot my symptoms in remission
Lucky!
Not even all the wasy through this video and have to comment before I lose the courage. I have struggled my whole life but worsened in college-current...each year or each big event my body may go through...it gets worse (tonsils out as a child and injury in high school, childhood trauma, active in sports as a kid-college and worked numerous jobs in college at once to survive, trauma in adulthood as well). I remember being VERY sleepy as a young child-high school. I thought it was normal but noticed no one else was like this around me. I fell during cheerleading and had an injury in my neck/shoulder area. Fast forward into adulthood-injury still hurt and went through testing and all...I think bac then they really brushed it off...but I was in immense pain and learned to live with it for all of those years.
Later in my LE career, I was injured during an altercation resulting in surgery for C5-C6 disc. Later sustained two lower back injuries non-work related because I never knew when to quit and loved yard work, mowing all of it, I did it all!! That injury was excruciating! The pain was so intense, my legs would wobble and shake uncontrollably, I couldn't sleep, couldn't sit, would trip, barely ate, had to depend on medication to get me through, and tried to continue to coach and be there for my kids but I could no longer tolerate then pain (I settled for injections -#2 being the winner-and setting major limits over the years with trial and error of what I could no longer do to upset the nerves because I did not want that again and never wanted to go through another spine surgery). Spinal trauma and other traumas are linked to IH.
I am 41 years old and been through the day and night studies, the endless trials and fails of all medications and fighting insurance for approvals. Medicine even medicine for IH that didn't seem to help me or saying. "I will not take due to having young kiddos with working dad and needing to be coherent enough to wake up if needed. I found myself giving up, crying, feeling like a mini-version of myself and (picturing myself in this micro figure trapped inside my body standing there, as if it were real) screaming inside this shell of who I am, who I was when it wasnt this bad....screaming to....I cannot do this, LET ME OUT!!!!!
Now, I stay on Adderall 20mg 3X a day, because that is the only thing I can take that "helps" and it sucks. I do have ADHD but the fatigue on top is a recipe for disaster. I am on citalopram 10 mg and Xanax at night to STOP the endless flashes of visions, randomness, or abruptly odd loud noises (sometimes like a loud crowd chattering or a loud abrupt whooshing in my head that would startle or wake me (sounds crazy but if you know, you know) just as I felt I could fall asleep, or constantly lying awake, worrying and tossing and turning. I now, sleep like a baby and all that noise stops right after the first loud and last "noise"...then I know I am about to sleep..but I AM NEVER RESTED!!
I wake, I stumble around, not remembering what I am looking for, feel so tired (like a kid woken from a deep sleep and shaky or after swimming all day)forever like I am drunk with exhaustion, making circles in house and the worse brain fog, and barely holding on; desperately fighting to walk, to wake, to get to my meds or a form of wakefulness to process, to function, to feel alive. Often, I close my eyes a lot to gather energy and hoping my body can restore a minute of rest....and (falling asleep typing this) desperately fighting to get to my meds or a form of wakefulness to process, to function. I feel like my eyes have weights on them, out of breath, and I feel VERY WEAK as if my muscles are gone (use to be in gym 4 days a week and very active). I tell people this is like another form of pain...I feel 10X worse than pregnancy fatigue (it got worse after baby number three and a sinus surgery that led to two emergency surgeries for hemorrhaging on verge of blood transfusion...I was not clotting properly. I bruise easily, I bruise badly, and I heal slowly. I too was diagnosed with Raynaud's (sometimes severe; I look like a corpse sometimes!) and arthritis. After the hemorrhaging I read on Von Willebrands and learned it is often forgotton, missed, or tested at the wrong times. I will have to retest for Von Willebrand's again... as a nosebleed will lead to extreme heavy bleeding for hours and sometimes fills my sinuses where I can't get it to stop and its like a faucet (and yes I do bleed out of my eyes if bad), its scary.
Back to meds-Sometimes meds work about 45 minutes after taking and MANY times, they don't at all and I can sleep all the way through them. I have to time everything I do around my medications and pray I can make it through all of these GROUNDHOG DAYS, I feel trapped!!! I hate this but keep going for my kids!!!! I try to have my kids with me as they know I am struggling as well as my husband, I fight hard to give them normalcy. Car rides, I am out like a light or so fatigued. Stress, anger. and crying make me want to sleep, working with computers and content make me want to sleep, chronic pain makes me want to sleep, ADHD and feeling like I cannot get my sh* together makes me want to shut down and sleep and then everything piles up. I am struggling today and even typing this...I didn't want to as I knew it would be a lot to get through...but I want to so someone else can read this...and maybe it will help. My body feels heavy, I feel like my chest, heart, and internally things feel "thick" with fatigue as if something is slowly pulling me down, I get an odd sensation and know a sleep attack of some sort is coming and I feel weak and too tired to even make it..naps make it all worse. I am on my second round of botox injections for migraines as well.
After years and talking to my doc, we agreed for sleep test. It was overnight and all day, I had the SAME EXACT results. I self-advocated and worked hard for extra testing for my heart, lungs, and all wondering what we are missing (every heart test from blood draw, CT, sono, monitors for two weeks, were normal; thank goodness). I did surface level blood draws, they were fine. I decided to go to a place close, called the Well Balanced life in Morton Illinois. Ten vials were collected. It is a deep panel, and you can add on food sensitivities (I will do that later) my insurance covered it. My doctor there wanted to get to the bottom of this. Two weeks later for IMPRESSIVE and THOROUGH charting my tests were semi-normal with some vitamin deficiencies and such. However, she was concerned as my PITUITARY LEVELS WERE TOO HIGH.
I research as part of my job, and this sucked me in. I needed and still need answers. I have also pieced things together with these incidents and if they had an impact on me, then came into play the pituitary gland. I read all about various secretions and what they were responsible for, and they all seemed to have a connection with IH. My neurologist finished my second round of botox injections for my migraines. We went over my CT scan of my slightly enlarged pituitary gland. We will watch it and rescan every year but could sooner based on some of my symptoms (since I have more than a few). I will be seeing his colleague who is an endocrinologist. I am very happy for this, as I feel this could (fingers crossed) help or give me more answers to feel better and give my body more of what it needs.
Anyone going through this, please talk to your doctor. This is usually out of their wheelhouse, so they will refer you to a specialist. Do your own research (present it them!), join support groups (Facebook, etc.) and listen to others out, read medical evals/articles as there could be missing pieces of the puzzle, something you may need. Not all of the meds they prescribe are going to help or be right fit for you. IH is tricky and it sucks in so many ways. Other factors make it worse. I encourage you all to get to a place that does deep panel work, get a CT scan of your brain and get your pituitary gland checked!! I have been asked to do a spinal tap. They do scare me; I had a leak with my first kiddo. The next two kids, I was fine.... but if it will help in this journey...I'm all in. It feels like your trapped...I get it...but try not to give up...something has to be out there. I try to think of others going through worse even thought this is hell...try to self-advocate and research for yourself and others. Keep researching, keep pushing, keep your loved ones in the loop, and good luck!
Side note: I typed this on a whim and know it may be all over the place as I tried to jam as much as I could! So, please do not judge lol, I was in a rush!
Can I ask you what you eat?
Why did u make lumbar puncture??
can someone write out the name of the cream for me?
I’m not hyper sensitive. I’m making extreme jerky motions , the I hallucinate
How can I get the cream that was prescribed to you?
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