I’ve held off on posting this for some time, but feel ready to share what I’ve been through with the hope that it might help someone - So feel free to share. Warning - This is long. Also, I sometimes write “we” or “us” - Which means me and my parents.
I have struggled with sleep issues since I was 6 or 7 years old (1998/1999) and was diagnosed with Obstructive Sleep Apnea (OSA), at 23 years old (2015). We believe I had undiagnosed Sleep Disordered Breathing (an umbrella term) for about 17 years.
[Age 6-10] The issues that first emerged were snoring, persistent cough, enlarged tonsils, very susceptible to colds, generalized anxiety, severe social anxiety, and panic attacks (the vast majority of them occurring at night). We didn’t know that all these symptoms were related. As they say, hindsight is 20/20. When I was 8 years old, I underwent my first surgery and had my tonsils and adenoids removed. Afterwards, my snoring was less noticeable (but still present), my persistent cough was gone, and I seemed a bit healthier - physically.
[Age 11-14] I did not grow out of my anxiety and panic attacks, as we all hoped. I could not attend sleepovers, even with my closest friends. I felt like a failure. I was embarrassed and humiliated, even though my closest friends were kind and understanding (even though none of us really understood what was happening to me). This affected my swimming, especially when we were required to stay in hotel rooms with teammates, but even if I was in a hotel with my parents. I had complete, uncontrollable, full body and mind, meltdowns that lasted 2-5 hours. I tried to hide it from people outside my family, but I was not always successful. I began seeing a counselor at 12 years old to manage my symptoms, and again at 16 years old. I learned a plethora of anxiety-control and self-esteem boosting techniques. I learned what worked and what didn’t work for me. This helped me to finally be able to spend the night away from home, but it was still a challenge. Some nights were better than others. But I knew I had to get a handle on my issues. I wanted to go college and swim and have a normal life.
[Age 15-17] Another symptom emerged, but again, we didn’t connect it with my other symptoms. I had chronic daytime fatigue. We chalked it up to my busy schedule as a student-athlete. I was swimming nearly every day and lifting several times a week. At one point I was also training for military requirements because I was interested in joining the Coast Guard or attending the Coast Guard Academy. I wasn't an AP or Governor's School student, but I still pushed myself to do well in school - I had a lot on my plate as a teenager. However, a ton of other kids did too, so we also chalked it up to being lazy. We thought I was applying my focus and energy on school, swimming, a little social life, and I simply didn’t feel like allocating any additional energy to anything else. My iron and thyroid was constantly tested by my doctor, since that is the usual reason for fatigue. But they were always normal. With no obvious medical answer and no huge concern for my health, the issue was pushed to the side.
I remember this one time while swimming with Coach Bocci - We were all assigned to keep a log of our sleeping, eating, drinking, and energy levels for about a week. One day before practice, he asked us about the logs and asked specific people to share certain parts. He asked my teammate what her energy level was in the morning, right when she got up. She replied like it was the most obvious answer in the world, “Well I just woke up, so I feel awake, I have a lot of energy.” And I remember feeling absolutely floored. People wake up with energy? People wake up feeling good? People wake up ready to go? I had never felt this. My options in the morning were - ok, bad, or horrible. Never good or great. It didn’t matter that I went to bed early, slept 8-9 hours every night (every night that didn't include a panic attack). It didn’t matter that I never drank alcohol, never partied, never stayed out with friends. It should be noted that the girl in this story did all these things, while also being a student-athlete. I was hurt and jealous and confused. But again, I pushed these feelings down. The only answer that made sense, at the time, was that I was just a lazier person.
[Age 18-21] I began taking as-needed medication for my anxiety, then moved up to daily medications to stabilize my mental health. Between the medications and more counseling, my anxiety and panic attacks finally improved.
Meanwhile, my chronic daytime fatigue was forgotten about. I was in college, everyone was tired and everyone took naps during the day. Deep inside I knew that I didn’t have as much of a reason to be tired. I wasn’t staying up late socializing or partying. I wasn’t staying up late studying or working on papers. But I completely ignored this. I also snored horribly, but I had never heard it so I didn’t know how bad it was. When people mentioned it, I just laughed it off. Then I began feeling significant depression at 19 years old. My anxiety, panic attacks, and phobias diminished as my depression grew worse.
[Age 22-25] I graduated college and began working full-time. That’s when we realized there was something seriously wrong with me. I was very depressed and had a few episodes of suicidal ideations. I was EXHAUSTED all the time. I could no longer take naps. People relied on my daily ability to be a fully functioning adult. I no longer had access to a free gym and gained weight. And, what concerned us the most, on weekends I slept 12-15 hours straight, WITH ABSOLUTELY NO RELIEF. I was still tired, even if I did NOTHING but sleep and eat all weekend. We began to really think about all of my problems and all of my symptoms. I finally used an audio recorder to take to my doctor about my snoring. She immediately sent me to a sleep doctor.
I first had an in-home sleep study, which showed pretty much no issue. I knew it was wrong and demanded (also known as self-advocating) a sleep study within the facility.
The results were shocking.
- I stop breathing about 20 times per hour while I sleep.
People are supposed to get about 4 hours per night of deep sleep, where their body repairs itself. I get about 1 hour.
- People are supposed to get about 4 hours of REM sleep, where they dream. I get about 1 hour of that too.
- People are supposed to have a blood oxygen level of 95-100%. Mine drops to about 80% while I sleep.
- I have Obstructive Sleep Apnea.
I felt relieved to have an answer. I wasn’t lazy. I wasn’t a failure. I wasn’t crazy. My mental health issues were validated. My low metabolism and immune system were validated. My chronic daytime fatigue and exhaustion were validated.
We missed the diagnosis because all of my symptoms were never connected. I also didn’t have some of the more “classic” symptoms of OSA. I didn’t feel myself wake up at night (even though I was waking up) and I didn’t have a dry mouth, dry throat, or headaches in the morning. Also, my snoring didn't really sound like I wasn't breathing. It just sounds like (really loud) snoring.
Plus, my previous sleep apnea belief was that it was for middle-aged people. Like when our eyes age and we need reading glasses.
Well, that's a myth. Sleep apnea CAN be caused by being overweight, but it can also be caused by having a “crowded” airway. This means that, somewhere along your airway, something relaxes in your sleep in a way that blocks your airway. I had a sleep endoscopy done and learned that my tongue and soft palate are the perpetrators.
Now it was time for us to look at treatments, but I quickly grew to hate all the options. The classic treatment is a CPAP machine. It never fit my face quite right (I have a small head), it always put lines on my face, my cat didn’t like it (it blows air out) I hated cleaning it, and it was downright uncomfortable. But honestly what I hated above all else, was that the CPAP machine was connected via satelite to my insurance company. They knew exactly when I was using it and when I wasn’t. If I didn’t use it often enough, they wouldn’t pay their portion of it. I still had plenty to pay on my own. Plus my bills from the sleep study and gallbladder-related ED visits and surgery. All of that combined took me about 2 years to pay off. Anyway, I was frustrated to learn that the CPAP machine wasn’t going to work for me.
I turned to a dentist who created retainer-like devices for people with OSA. I was fitted for a retainer that pushes my lower jaw a little bit forward, just enough to keep my airway open at night. I had a love/hate relationship with this device. I loved that it gave me some relief. I felt better when I wore it a few nights in a row. But there were serious drawbacks. There were parts of the device that irritated my inner mouth, and it couldn’t be adjusted to stop doing that. The device forced my mouth open, so I still snored, I just didn’t have the apnea episodes. I had a dry mouth, dry throat, and headaches in the morning. But then the kicker - One random night, I slept wrong while wearing the device and pulled a muscle in my jaw, which was painful and annoying. I was advised to stop wearing the device until the pain subsided. It took about a month for the pain to completely go away, because I couldn’t stop eating and talking (even though I did eat softer, less-chewy food). I was constantly irritating the muscle, so it took a while to heal. When I used the device again, the pain came back right away. I stopped using it again, for a couple weeks, then tried again, and the pain came back. I did this a few times before giving up completely.
I knew there were surgical options to OSA, but I was scared. There were a lot of risks - The surgery could not help at all, wasted money and time, or I could suffer from complications and chronic pain. Finally, in January 2018, I decided to pursue one more OSA treatment: Surgical implant of a device called Inspire Upper Airway Stimulation. The easiest way to understand how it works is through this short Youtube video: https://www.youtube.com/watch?v=qejRaGXVCYE.
I was reluctant to pursue this for a long time out of fear, ego, money, etc. But I came to terms with what I’ve been through and how connected all of my issues are to this one problem, OSA. And it’s not my fault that I have OSA. I simply didn’t win the genetic lottery. I was terrified of being “medically fat-shamed” and told to lose weight before they would look at surgery. I knew my OSA had no connection to my weight, even though there is a connection for some people. My OSA was caused by having a smaller airway and there was nothing I could do to change that except finding a medical treatment.
Due to multiple required tests and insurance issues, I had to wait until August 2018 to have my surgery, and that was an insurance miracle! But it was HORRIBLE timing because I had to do it 1 week after starting my first semester of graduate school classes. But I made it through with a lot of help from my family.
I had to wait another month to make sure my body didn’t reject the implant and to wait for everything to heal. In September 2018 I had my Inspire device activated. I am now in the process of slowly increasing the intensity of the nerve stimulation. I am not at full treatment yet, but I am feeling some relief. Out of curiosity, I recorded myself sleeping again and my snoring was significantly softer.
[Present day; Age 26- ] Recently, I pulled an all-nighter for a paper I had procrastinated on. In the morning, I left the library and went to class. I was tired throughout the day and had moments of nausea, but other than that, I felt ok. That’s when I realized it. This is how I felt EVERY SINGLE DAY without any OSA treatment. I have been going through my life feeling like a normal person who has not slept in 24 hours.
My journey with Obstructive Sleep Apnea will never be over, but I’m ok with that. The device in my chest needs to have the battery replaced every 10 years, so I’ll be back on the operating table another, God willing, 5 or so times. I’m also not receiving full treatment yet, but we are hopeful that all of my symptoms will be resolved or significantly lessened by 2019. Long-term, untreated OSA causes a myriad of heart and vascular issues, diabetes, weight-gain issues, and early-onset memory impairments. I am very grateful for my parents limitless love, support, and persistence for me to live my best life.
I have struggled with sleep issues since I was 6 or 7 years old (1998/1999) and was diagnosed with Obstructive Sleep Apnea (OSA), at 23 years old (2015). We believe I had undiagnosed Sleep Disordered Breathing (an umbrella term) for about 17 years.
[Age 6-10] The issues that first emerged were snoring, persistent cough, enlarged tonsils, very susceptible to colds, generalized anxiety, severe social anxiety, and panic attacks (the vast majority of them occurring at night). We didn’t know that all these symptoms were related. As they say, hindsight is 20/20. When I was 8 years old, I underwent my first surgery and had my tonsils and adenoids removed. Afterwards, my snoring was less noticeable (but still present), my persistent cough was gone, and I seemed a bit healthier - physically.
[Age 11-14] I did not grow out of my anxiety and panic attacks, as we all hoped. I could not attend sleepovers, even with my closest friends. I felt like a failure. I was embarrassed and humiliated, even though my closest friends were kind and understanding (even though none of us really understood what was happening to me). This affected my swimming, especially when we were required to stay in hotel rooms with teammates, but even if I was in a hotel with my parents. I had complete, uncontrollable, full body and mind, meltdowns that lasted 2-5 hours. I tried to hide it from people outside my family, but I was not always successful. I began seeing a counselor at 12 years old to manage my symptoms, and again at 16 years old. I learned a plethora of anxiety-control and self-esteem boosting techniques. I learned what worked and what didn’t work for me. This helped me to finally be able to spend the night away from home, but it was still a challenge. Some nights were better than others. But I knew I had to get a handle on my issues. I wanted to go college and swim and have a normal life.
[Age 15-17] Another symptom emerged, but again, we didn’t connect it with my other symptoms. I had chronic daytime fatigue. We chalked it up to my busy schedule as a student-athlete. I was swimming nearly every day and lifting several times a week. At one point I was also training for military requirements because I was interested in joining the Coast Guard or attending the Coast Guard Academy. I wasn't an AP or Governor's School student, but I still pushed myself to do well in school - I had a lot on my plate as a teenager. However, a ton of other kids did too, so we also chalked it up to being lazy. We thought I was applying my focus and energy on school, swimming, a little social life, and I simply didn’t feel like allocating any additional energy to anything else. My iron and thyroid was constantly tested by my doctor, since that is the usual reason for fatigue. But they were always normal. With no obvious medical answer and no huge concern for my health, the issue was pushed to the side.
I remember this one time while swimming with Coach Bocci - We were all assigned to keep a log of our sleeping, eating, drinking, and energy levels for about a week. One day before practice, he asked us about the logs and asked specific people to share certain parts. He asked my teammate what her energy level was in the morning, right when she got up. She replied like it was the most obvious answer in the world, “Well I just woke up, so I feel awake, I have a lot of energy.” And I remember feeling absolutely floored. People wake up with energy? People wake up feeling good? People wake up ready to go? I had never felt this. My options in the morning were - ok, bad, or horrible. Never good or great. It didn’t matter that I went to bed early, slept 8-9 hours every night (every night that didn't include a panic attack). It didn’t matter that I never drank alcohol, never partied, never stayed out with friends. It should be noted that the girl in this story did all these things, while also being a student-athlete. I was hurt and jealous and confused. But again, I pushed these feelings down. The only answer that made sense, at the time, was that I was just a lazier person.
[Age 18-21] I began taking as-needed medication for my anxiety, then moved up to daily medications to stabilize my mental health. Between the medications and more counseling, my anxiety and panic attacks finally improved.
Meanwhile, my chronic daytime fatigue was forgotten about. I was in college, everyone was tired and everyone took naps during the day. Deep inside I knew that I didn’t have as much of a reason to be tired. I wasn’t staying up late socializing or partying. I wasn’t staying up late studying or working on papers. But I completely ignored this. I also snored horribly, but I had never heard it so I didn’t know how bad it was. When people mentioned it, I just laughed it off. Then I began feeling significant depression at 19 years old. My anxiety, panic attacks, and phobias diminished as my depression grew worse.
[Age 22-25] I graduated college and began working full-time. That’s when we realized there was something seriously wrong with me. I was very depressed and had a few episodes of suicidal ideations. I was EXHAUSTED all the time. I could no longer take naps. People relied on my daily ability to be a fully functioning adult. I no longer had access to a free gym and gained weight. And, what concerned us the most, on weekends I slept 12-15 hours straight, WITH ABSOLUTELY NO RELIEF. I was still tired, even if I did NOTHING but sleep and eat all weekend. We began to really think about all of my problems and all of my symptoms. I finally used an audio recorder to take to my doctor about my snoring. She immediately sent me to a sleep doctor.
I first had an in-home sleep study, which showed pretty much no issue. I knew it was wrong and demanded (also known as self-advocating) a sleep study within the facility.
The results were shocking.
- I stop breathing about 20 times per hour while I sleep.
People are supposed to get about 4 hours per night of deep sleep, where their body repairs itself. I get about 1 hour.
- People are supposed to get about 4 hours of REM sleep, where they dream. I get about 1 hour of that too.
- People are supposed to have a blood oxygen level of 95-100%. Mine drops to about 80% while I sleep.
- I have Obstructive Sleep Apnea.
I felt relieved to have an answer. I wasn’t lazy. I wasn’t a failure. I wasn’t crazy. My mental health issues were validated. My low metabolism and immune system were validated. My chronic daytime fatigue and exhaustion were validated.
We missed the diagnosis because all of my symptoms were never connected. I also didn’t have some of the more “classic” symptoms of OSA. I didn’t feel myself wake up at night (even though I was waking up) and I didn’t have a dry mouth, dry throat, or headaches in the morning. Also, my snoring didn't really sound like I wasn't breathing. It just sounds like (really loud) snoring.
Plus, my previous sleep apnea belief was that it was for middle-aged people. Like when our eyes age and we need reading glasses.
Well, that's a myth. Sleep apnea CAN be caused by being overweight, but it can also be caused by having a “crowded” airway. This means that, somewhere along your airway, something relaxes in your sleep in a way that blocks your airway. I had a sleep endoscopy done and learned that my tongue and soft palate are the perpetrators.
Now it was time for us to look at treatments, but I quickly grew to hate all the options. The classic treatment is a CPAP machine. It never fit my face quite right (I have a small head), it always put lines on my face, my cat didn’t like it (it blows air out) I hated cleaning it, and it was downright uncomfortable. But honestly what I hated above all else, was that the CPAP machine was connected via satelite to my insurance company. They knew exactly when I was using it and when I wasn’t. If I didn’t use it often enough, they wouldn’t pay their portion of it. I still had plenty to pay on my own. Plus my bills from the sleep study and gallbladder-related ED visits and surgery. All of that combined took me about 2 years to pay off. Anyway, I was frustrated to learn that the CPAP machine wasn’t going to work for me.
I turned to a dentist who created retainer-like devices for people with OSA. I was fitted for a retainer that pushes my lower jaw a little bit forward, just enough to keep my airway open at night. I had a love/hate relationship with this device. I loved that it gave me some relief. I felt better when I wore it a few nights in a row. But there were serious drawbacks. There were parts of the device that irritated my inner mouth, and it couldn’t be adjusted to stop doing that. The device forced my mouth open, so I still snored, I just didn’t have the apnea episodes. I had a dry mouth, dry throat, and headaches in the morning. But then the kicker - One random night, I slept wrong while wearing the device and pulled a muscle in my jaw, which was painful and annoying. I was advised to stop wearing the device until the pain subsided. It took about a month for the pain to completely go away, because I couldn’t stop eating and talking (even though I did eat softer, less-chewy food). I was constantly irritating the muscle, so it took a while to heal. When I used the device again, the pain came back right away. I stopped using it again, for a couple weeks, then tried again, and the pain came back. I did this a few times before giving up completely.
I knew there were surgical options to OSA, but I was scared. There were a lot of risks - The surgery could not help at all, wasted money and time, or I could suffer from complications and chronic pain. Finally, in January 2018, I decided to pursue one more OSA treatment: Surgical implant of a device called Inspire Upper Airway Stimulation. The easiest way to understand how it works is through this short Youtube video: https://www.youtube.com/watch?v=qejRaGXVCYE.
I was reluctant to pursue this for a long time out of fear, ego, money, etc. But I came to terms with what I’ve been through and how connected all of my issues are to this one problem, OSA. And it’s not my fault that I have OSA. I simply didn’t win the genetic lottery. I was terrified of being “medically fat-shamed” and told to lose weight before they would look at surgery. I knew my OSA had no connection to my weight, even though there is a connection for some people. My OSA was caused by having a smaller airway and there was nothing I could do to change that except finding a medical treatment.
Due to multiple required tests and insurance issues, I had to wait until August 2018 to have my surgery, and that was an insurance miracle! But it was HORRIBLE timing because I had to do it 1 week after starting my first semester of graduate school classes. But I made it through with a lot of help from my family.
I had to wait another month to make sure my body didn’t reject the implant and to wait for everything to heal. In September 2018 I had my Inspire device activated. I am now in the process of slowly increasing the intensity of the nerve stimulation. I am not at full treatment yet, but I am feeling some relief. Out of curiosity, I recorded myself sleeping again and my snoring was significantly softer.
[Present day; Age 26- ] Recently, I pulled an all-nighter for a paper I had procrastinated on. In the morning, I left the library and went to class. I was tired throughout the day and had moments of nausea, but other than that, I felt ok. That’s when I realized it. This is how I felt EVERY SINGLE DAY without any OSA treatment. I have been going through my life feeling like a normal person who has not slept in 24 hours.
My journey with Obstructive Sleep Apnea will never be over, but I’m ok with that. The device in my chest needs to have the battery replaced every 10 years, so I’ll be back on the operating table another, God willing, 5 or so times. I’m also not receiving full treatment yet, but we are hopeful that all of my symptoms will be resolved or significantly lessened by 2019. Long-term, untreated OSA causes a myriad of heart and vascular issues, diabetes, weight-gain issues, and early-onset memory impairments. I am very grateful for my parents limitless love, support, and persistence for me to live my best life.
I have just found a facebook wall that is super active and everyone is so nice. Its a narcolepsy support group. You should join!!
http://www.facebook.com/home.php?sk=group_2212151373&ap=1
http://www.facebook.com/home.php?sk=group_2212151373&ap=1
Three years ago, I was diagnosed with narcolepsy. I've tried five or six different combinations of medication and I'm currently on 150mg Tofranil PM at night and 5mg Ritalin twice a day. The Tofranil has been working fine, but I feel like I might be building up a tolerance to it, since it doesn't seem to be as effective in the last few months. Has this happened with anyone else? I still feel very sleepy when I wake up and now it seems to be taking a little longer for me to fall asleep than when I first started on it.
I take the Ritalin in the morning when I remember, and I'm disappointed to report that I forget more days than I remember. I've tried putting the bottle next to my toothbrush and by my purse and by my shoes, but I just can't seem to remember. Any ideas of how I can be more on top of things?
I work in retail and I reeeeeeally don't like my job. It's a job, though, and it took me three months to find one, so I'm sticking with it, even though I dread waking up every morning to go. I'm the manager of the Children's Department in a department store and I have these uncontrollable urges to lock myself in the fitting rooms and take a nap. I still haven't actually done it yet, but the temptation is there every day. Because I don't like my job, I'm not a very chipper salesperson. All of these things combined with the fact that I'm all kinds of exhausted makes me so anxious to go to work that today I called off because I felt sick. I did have a little bit of an upset stomach, but it was mostly because I slept horribly and the idea of standing for eight hours and repeating the same six questions all day and trying to sell people things they don't want made going to work the very last thing in the world I'd want to do. I know this was very irresponsible and I know I need to be more on top of taking Ritalin during the day, but I still know I would've made the same decision under different circumstances. Has anyone felt like this before? I feel alone quite often since nobody seems to understand what it's like to be *thisclose* to falling asleep all day, every day. I'm usually much more responsible, but like I said, the lack of sleep and anxiety about knowing that I'll be an even worse worker kept me from doing the smart thing.
Any insight you can give me is greatly appreciated.
I take the Ritalin in the morning when I remember, and I'm disappointed to report that I forget more days than I remember. I've tried putting the bottle next to my toothbrush and by my purse and by my shoes, but I just can't seem to remember. Any ideas of how I can be more on top of things?
I work in retail and I reeeeeeally don't like my job. It's a job, though, and it took me three months to find one, so I'm sticking with it, even though I dread waking up every morning to go. I'm the manager of the Children's Department in a department store and I have these uncontrollable urges to lock myself in the fitting rooms and take a nap. I still haven't actually done it yet, but the temptation is there every day. Because I don't like my job, I'm not a very chipper salesperson. All of these things combined with the fact that I'm all kinds of exhausted makes me so anxious to go to work that today I called off because I felt sick. I did have a little bit of an upset stomach, but it was mostly because I slept horribly and the idea of standing for eight hours and repeating the same six questions all day and trying to sell people things they don't want made going to work the very last thing in the world I'd want to do. I know this was very irresponsible and I know I need to be more on top of taking Ritalin during the day, but I still know I would've made the same decision under different circumstances. Has anyone felt like this before? I feel alone quite often since nobody seems to understand what it's like to be *thisclose* to falling asleep all day, every day. I'm usually much more responsible, but like I said, the lack of sleep and anxiety about knowing that I'll be an even worse worker kept me from doing the smart thing.
Any insight you can give me is greatly appreciated.
Hello! I'm Bridget from Ohio.
After a recent sleep and nap study, I've been told that I probably have idiopathic hypersomnia. I was prescribed provigil and I wanted to hear any and all experiences that you guys have had with the medicine. Thanks for your time, guys.
After a recent sleep and nap study, I've been told that I probably have idiopathic hypersomnia. I was prescribed provigil and I wanted to hear any and all experiences that you guys have had with the medicine. Thanks for your time, guys.
OTHER MODS: Given the results of the survey I posted, should we create a community to discuss issues like this - and (perhaps) getting all of the posts tagged and how to consolidate them into memories of FAQs? I'm not even the maintainer and I've undertaken this massive task alone - which has come to a standstill now that I've been dealing with personal issues for about a year now.
MEMBERS: Thank you for the valuable input in the comments and in the poll. While I'd have liked to see more of our 1,000+ ish members vote, I will assume that they don't care either way. Also, please try to tag your posts based on existing tags. Thanks!
EVERYONE: How do you explain to others that an episode of sleep drunkenness/sleep inertia is not your fault? How do you make them understand (2 and 1/2 years post-diagnosis) that it isn't a matter of willpower?
MEMBERS: Thank you for the valuable input in the comments and in the poll. While I'd have liked to see more of our 1,000+ ish members vote, I will assume that they don't care either way. Also, please try to tag your posts based on existing tags. Thanks!
EVERYONE: How do you explain to others that an episode of sleep drunkenness/sleep inertia is not your fault? How do you make them understand (2 and 1/2 years post-diagnosis) that it isn't a matter of willpower?
Hey everyone!
This might be a long shot, but I thought I'd ask. I think I'm having some issues with my medication interacting. I posted here when I first joined. It turns out I have hypersomnia, and for it, my Sleep Doctor has me taking Ritalin. I don't think I take that much . . . 15mg twice a day. So, this has been added to my Epilepsy. I was on Carbatrol before I was put on the Ritalin, and I was fine from March til July. In July, I started to feel over-medicated (dizzy, lightheaded, poor balance, horrible double vision) when I took both my Ritalin and Carbatrol. Both my Neurologist and Sleep Doctor thought it was my Carbatrol. We decided to do some crazy switching with my meds. I'm on a lower dose of my Carbatrol, but I'm also on Zonisimide as well. At first, things seemed fine. A month or so ago, when I went up to 400mg a day of the Zonisimide, I started to feel over-medicated again. I called my Neuro, we lowered my Carbatrol again, and I have yet to feel any better. I only feel badly when I take my Ritalin when I take the dosage near the time I take my Zonisimide. (Actually, I took the Zonisimide 5 hours ago, and I took my Ritalin an hour ago, and I feel like crap.)
Is anyone else on both Zonisimide and Ritalin? If you are, have you had issues with feeling 'over-medicated' on them? I'm going in to see my Neuro next week, but I'm curious if maybe it's something other than a feeling of being over-medicated. I apologize if this sounds confusing in any way. Thanks for any help! :D
This might be a long shot, but I thought I'd ask. I think I'm having some issues with my medication interacting. I posted here when I first joined. It turns out I have hypersomnia, and for it, my Sleep Doctor has me taking Ritalin. I don't think I take that much . . . 15mg twice a day. So, this has been added to my Epilepsy. I was on Carbatrol before I was put on the Ritalin, and I was fine from March til July. In July, I started to feel over-medicated (dizzy, lightheaded, poor balance, horrible double vision) when I took both my Ritalin and Carbatrol. Both my Neurologist and Sleep Doctor thought it was my Carbatrol. We decided to do some crazy switching with my meds. I'm on a lower dose of my Carbatrol, but I'm also on Zonisimide as well. At first, things seemed fine. A month or so ago, when I went up to 400mg a day of the Zonisimide, I started to feel over-medicated again. I called my Neuro, we lowered my Carbatrol again, and I have yet to feel any better. I only feel badly when I take my Ritalin when I take the dosage near the time I take my Zonisimide. (Actually, I took the Zonisimide 5 hours ago, and I took my Ritalin an hour ago, and I feel like crap.)
Is anyone else on both Zonisimide and Ritalin? If you are, have you had issues with feeling 'over-medicated' on them? I'm going in to see my Neuro next week, but I'm curious if maybe it's something other than a feeling of being over-medicated. I apologize if this sounds confusing in any way. Thanks for any help! :D
Silly question I know, but whn you are narcoleptic things can be more complicated than just yes or no...
I have had N since I was 12. I am now 30. And I have experienced EDS on the daily, C on the daily, now more like weekly and SP about a dozen times. But the hallucinating I have never experienced. I think I may be as of recently. Just wondering if it was more like vivid dreams or hallucinating...
Example: I always take a nap about 1 or 2 pm. I fell asleep while talking to my husband. I was kinda listening to him fighting the EDS and then I remember being in a store looking at stuff and telling him about it, like wives do in a normal situation at a gift shop. It took awhile for me to realize it wasn't real, maybe 10 minutes, but eventually I did. After I woke up I remembered what happened. He said I told him very clearly the things I remembered saying to him.
I have had N since I was 12. I am now 30. And I have experienced EDS on the daily, C on the daily, now more like weekly and SP about a dozen times. But the hallucinating I have never experienced. I think I may be as of recently. Just wondering if it was more like vivid dreams or hallucinating...
Example: I always take a nap about 1 or 2 pm. I fell asleep while talking to my husband. I was kinda listening to him fighting the EDS and then I remember being in a store looking at stuff and telling him about it, like wives do in a normal situation at a gift shop. It took awhile for me to realize it wasn't real, maybe 10 minutes, but eventually I did. After I woke up I remembered what happened. He said I told him very clearly the things I remembered saying to him.
Hey! Can anyone recommend a travel/portable CPAP machine that they like?
Or, ones to stay away from?
Thanks!
Or, ones to stay away from?
Thanks!
I am seeing my neuro in about a month.
Anyway, I haven't noticed much difference on this dose of Ritalin and was wondering if any other people with narcolepsy took it and if you do how much per day do you take?
The neurologist said that I would be able to up the dose some more if there was still not much difference.. she said up to 15mg twice a day, but an extra 5mg doesn't seem like it will make much difference?
And also, what are any of you on for cataplexy?
Thanks.
I've just had the weirdest and scariest sleep paralysis. I've been going to bed at 22:30 and getting up at 4am everyday this week so I'm pretty burned out and went to bed early because I could barely keep my eyes open.
I got my SP episode, but I can move certain parts of my body. I can move my jaw, and if I try hard I can blink. Sometimes I can move my hands/feet a bit. Buy moving them, it usually helps me break out of it. If I try hard to no avail, I make myself fall back asleep.
This episode was having none of it. I tried to move and I couldn't break out of it. Fell back asleep and woke up still in SP. Still couldn't break out of it, and I started to panic by this point. But...a dream sort of intervened in the SP (almost like a hallucination, because I could still see my film going on and I haven't seen it before so it's not like my brain has subconciously played it to me in a dream)
I dreamt/hallucinated that my dad came into my room and I was happy because I thought that'd break me out of it. But it didn't and I really panicked. I managed to get my arm moving and lazily swung it over me, causing my body to swing with it and I fell straight off the bed and hit my head really hard on the floor (wooden).
Again, I thought that'd wake me but it didn't. I was just lay there with a really sore head, unable to move to comfort myself. After another minute or so of trying to move, I broke out of it with one of those movie style sit-up-bolt-upright-and-gasp (as I usually do when I've been trying particularly hard to break out) but I was in bed, not on the floor.
What's weird is, I know it was a dream/hallucination, but my head REALLY hurts in the place I hit it...and there's nothing I could have hit it on in my sleep....
I'm still absolutely knackered aswell but I'm too scared to go back to sleep. I hate this...
I got my SP episode, but I can move certain parts of my body. I can move my jaw, and if I try hard I can blink. Sometimes I can move my hands/feet a bit. Buy moving them, it usually helps me break out of it. If I try hard to no avail, I make myself fall back asleep.
This episode was having none of it. I tried to move and I couldn't break out of it. Fell back asleep and woke up still in SP. Still couldn't break out of it, and I started to panic by this point. But...a dream sort of intervened in the SP (almost like a hallucination, because I could still see my film going on and I haven't seen it before so it's not like my brain has subconciously played it to me in a dream)
I dreamt/hallucinated that my dad came into my room and I was happy because I thought that'd break me out of it. But it didn't and I really panicked. I managed to get my arm moving and lazily swung it over me, causing my body to swing with it and I fell straight off the bed and hit my head really hard on the floor (wooden).
Again, I thought that'd wake me but it didn't. I was just lay there with a really sore head, unable to move to comfort myself. After another minute or so of trying to move, I broke out of it with one of those movie style sit-up-bolt-upright-and-gasp (as I usually do when I've been trying particularly hard to break out) but I was in bed, not on the floor.
What's weird is, I know it was a dream/hallucination, but my head REALLY hurts in the place I hit it...and there's nothing I could have hit it on in my sleep....
I'm still absolutely knackered aswell but I'm too scared to go back to sleep. I hate this...
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sleep_disorders- Sleeping Disorders
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03_michelle_92 : Obstructive Sleep Apnea [+0] - gaming_momma : FB group [+0]
- wirelamp : (no subject) [+5]
- noisywallflower : (no subject) [+7]
iatrogenicmyth : for all. [+4] - jeala_triumph : Medication Question [+1]
- gaming_momma : Am I hallucinating? [+4]
- helianthas : Travel CPAP Machine Recommendations? [+3]
- kimmii_x : Ritalin + narcolepsy? [+12]
- mind_detonator : Hallucinationy dream thing? [+7]
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So now I'm…