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Found 3 results

  1. I'll get to the coinciding physical symptoms eventually. I have always had trouble sleeping through most of the night like the majority of people do with ease and very naturally sleep through the majority of the day when most people are awake. I honestly have always preferred not to see the morning (I find it utterly depressing) except I am obligated to get places like doctor's appointments, stores, and restaurants before they close for the day and I would like the be awake and ready to leave my home by the early afternoon on a consistent basis. Since I was 12 years old, my addiction to being nocturnal and having an abnormal or irregular circadian rhythm has gotten progressively worse. So much to the point where I will fall asleep as the sun is rising and wake up when it's setting or it will be dark again by the time I wake up! I am being deprived of too many things, missing doctor's appointments, or not being able to get my car to the auto mechanic before he / she closes for an oil change. I eventually want to get a part-time job (currently living on SSI) and i imagine that my job would take place in the late afternoon or the evening shift but how could I even hold down a job that was a full-blown a graveyard shift under these circumstances!? My insomnia which can be attributed to the fact that I was formerly diagnosed with bipolar 1 with psychotic features and am now diagnosed with schizoaffective disorder, ocd, and add (possibly adhd). Sometimes if I stay awake later than I really want to (preferably between 1 and 3am to be able to wake up by the early afternoon) then I will just remain awake into the next day in order to guarantee that I will make the appointment or obligation and get to it in a state of sheer exhaustion barely able to follow the doctor or specialist as they're explaining things to me. Sometimes I have gone two or even three nights in a row without getting any shuteye because the appearance of it being nighttime awakens me. The only time that my insomnia (but not the sleep apnea or chronic migraines) was under better control was when I was on court ordered injections which were anti-psychotics and along with outright despising the process of getting those injections, I had a plethora of other side effects like akathisia (inability to sit still), lethargy, fatigue, sedation, and severe weight gain at the same time. I've been on Latuda 20mg for a couple of years now with little to no side effects and I plan to stay on it and never be subjected to having to take anti-psychotic injections ever again after my experiences with them when I had to involuntarily take them by court order. Now I also have some other issues going on in addition to the insomnia and nocturnal sleep cycle. I have ehlers-danlos syndrome type 3. I was diagnosed with severe obstructive sleep apnea after a sleep study ordered by my pulmonologist in the beginning of 2018 shortly after I got off of the anti-psychotic injections and I was 308 pounds (my heaviest ever weight, my height is 5'8). As of December 2019, my weight is 281 and I've been at a weight set-point since the end of 2018 where my weight is no longer fluctuating anymore (cannot easily lose or gain weight). I hated the mask / cpap machine or was cpap intolerant and sent it back to the surgical supply company within a couple of weeks. My ENT is not recommending the oral surgery or UPPP procedure because of how severe the sleep apnea is and I don't want a tracheotomy. He said that I'm too obese to use Inspire. I can't find an oral surgeon who does maxillomandibular advancement surgery. The obstructive sleep apnea and tmj syndrome which I've suffered from for over a decade combined are giving me chronic migraines and still sometimes when I take my prescription strength pain relievers from my rheumatologist. I wake up feeling like I was hit by an 18-wheeler stumbling to the bathroom sink with my eyelids glued together (look up the medical term blepharitis, I get that in my sleep too). Sometimes the migraines are so bad that I will force myself to eat and drink a small amount and take something like Excedrin PM or other types of nighttime pain relievers and fall back asleep and wake up again slightly less messed up because I had more rest even later in the day. Another major problem is that even if I somehow get a better nights sleep one night, the next night I will be so energized once it gets dark that I will do another all-nighter until the sun is coming up and the cycle or revolving door starts all over again. I used to be prescribed sedatives like Trazadone and Clonazepam but my new psychiatrist (been seeing her for a little over a year) insisted that I come off of them until the sleep apnea was successfully treated because me taking them before going to sleep with that medical condition was too dangerous. I recently found a dental sleep specialist hours away from where I live which designs oral appliances specifically for treating sleep apnea and tmj syndrome and I've been trying to set up an evaluation but they are forcing me to do another sleep study at home because the last one I did at the sleep lab was in March 2018. I recently went to my local CVS and picked up generic Benadryl or diphenhydramine 50mg and I found something recently at 7-Eleven called doxylamine succinate which is labeled as a strong sleep aid. I am sleeping with a wedge pillow and I eventually want to invest in a bed with an adjustable mattress to keep myself on an incline. If anyone else has any input that you think could be helpful on how I could fend off the insomnia and be less nocturnal on a consistent basis, it would be appreciated.
  2. I don't want to step on any toes, or say that you should do this or that, but I went from 14 years of chronic migraines (15+/month) to now only one a month. This is my story. I got my first one in kindergarten. It was unbearable. I laid in a dark room in tears, begging for relief. This never stopped. I got one every other day for 14 years. I missed so much school I had to place special request forms to repeal my absences other wise I'd be kicked out. I slept for my entire elementary and junior high years. When I was awake and out of pain I'd only do school work. I managed to keep an A average, something I know many aren't lucky enough to have. I didn't have friends. It was sleep and school. I went to doctor after doctor after doctor, no one had an answer. My brain scans all came back clean. I was hypersensitive to drugs and with every one I was prescribed I endured every symptom alongside. I tried alternative medicine, I tried voodoo (kinda joking, but honestly some of the crap I did may as well be), I tried every pinterest suggestion, I tried every kind of therapy, aroma, oils, cleanses, I tried everything. I held out on going to the ER. My parents aren't well off and each trip was a kick in our bank accounts special parts. In 2015 I had a three month period from hell. Every day I was in pain. Every. Day. I lived in a dark room, black paper taped to the windows and extra thick black curtains cover those. I had my own mini freezer filled with ice packs and empty bottles of excedrin and ibuprofen (three excedrin and four ibuprofen were my friends) scattered everywhere. I dropped most of my college classes except for the online ones and those who didn't take attendance. (I was 21 at this point). After three weeks straight of a migraine, no break, I couldn't take it. I had been in my room drifting in and out of sleep and agonizing hours of being awake for three weeks. I didn't go to school, I didn't leave my room except to use the bathroom and take hot baths in the middle of the night. It was hell. I finally had a mental break down and stumbled into my parents room balling. I laid in their bed as my mom held me, rubbing my temples and whispering to my dad. They finally made the call and rushed me to the ER. It was a clean bill, of course, but the doctor hooked me up to an IV and I got my very first migraine cocktail. After three weeks I finally felt nothing. The next morning the migraines returned and continued three days in a row for the next two months. I had a new doctor who was very attentive and sweet, she gave me a list of options to try to combat it. My body rejected it all. Finally my mom called her doctor. She had been getting hormone pellets to make up the lack of estrogen in her body from her hysterectomy. An appointment was made and my road to relief was paved. Before my appointment my doctor had my hormones tested. I was perfect. In every aspect I was completely healthy. She sat down with me and reviewed my history, what I had tried, what never worked. She then proposed an experiment for me to try. She'd give me 6mg dose of estrogen, a pellet that she'd slit into a cut on my hip, and my body would feed off of it for the next three months. Every three months I'd be required to get another dose. She said that by doing so, I'd get constant level of estrogen, my hormones would no longer fluctuate and my body would no longer be triggered from the ups and downs. Three months of straight pain, a day or two of relief in between, I signed right up. She cut a slit into my side, slipped it in, covered it with a bandaid and sent me on my way. Immediately I went from a migraine every day, to once a week. From there it only got better. By the three month period I was down to once a month. Unfortunately that wasn't permanent for me. Within the next six months stress from school and family issues (ER visits aren't cheap, and we didn't have the money to get me another pellet), I was back to every other day. It got to be too much for me so I left. I moved across the country into a new, stress free environment and I'm fine now. It's been 18 months. I get one migraine every month, right before my period. The hormone pellet helped me as I was stuck in a stressful situation. I've been mostly migraine free for 18 months because I'm in a happier place, I don't have pressure of family and I'm in an entirely new environment. I'm a big believer that air pressure and stress has a lot to do with why I was in pain for so long. Anyway that's my tale. From 14 years of hell to one a month triggered by hormones, I'll take that anyday. Hang in there, I know it hurts. Believe me, I know it hurts. This isn't forever.
  3. I've had migraines since I was about 6 years old. When I was 12 I was prescribed sumatriptan and I feel like it's been a miracle drug for me. However, more recently I've had migraines more frequently (once or twice a week), and sometimes the sumatriptan isn't helping as much as it used too. I went to the ER once a few months ago because I had a migraine so bad I felt like I was actually going to die. I'm prescribed the highest possible dose (100mg). I'm thinking of opting for some sort of treatment that would reduce the frequency of my migraines. I know of some of them I wanted to know if anyone has personally tried preventive treatments, and how they worked and how effective they are.
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