Support Groups and Resources

SLEEP APNEA

RESTLESS LEGS SYNDROME – RLS/PLMS

NARCOLEPSY

INSOMNIA

CIRCADIAN RHYTHM DISORDERS

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41 thoughts on “Support Groups and Resources

  1. Diane Reply

    Having severe insomnia after withdrawal from clonazepam. It’s been 6 months since the withdrawal and still insomnia. Any advice?

  2. Stefanie Reply

    Has there been a support group started anywhere for insomnia? If so I’d love to join to get support and give support.

  3. Joshua Blair Reply

    Hello! My name is Joshua Blair and I am a masters engineering at Johns Hopkins working on a project to enhance slow wave sleep. We are currently in the process of talking to people with sleep conditions or caregivers of those with sleep conditions to better understand the needs of the population. Would anyone be interested in an informal 20 minute interview or know where to point our team in the right direction?

    • Michelle Roberts Reply

      Hi, Joshua.

      I stumbled on your entry while deciding whether I need a support group. If it isn’t too late, I’m happy to answer any questions you might have in your interview process for your slow wave sleep project. I have Narcolepsy 1 with severe Cataplexy. I have severe sleep apnea as well. Hope I can be of some help to you as I’m hopeful that researchers such as you may be my only hope for a better future. 🙂
      Michelle

    • Karen Loka Reply

      Hi, Joshua

      I have moderate sleep apnea and I am open to answering any question you have for your study.

      Karen

  4. Lyn Reply

    Can you please help me, i couldn’t sleep for almost 2weeks..all the time I don’t have sleep till now..I went to doctor but the medicine didn’t work for me.

  5. Chris LeVan Reply

    Hey y’all. I relate to all of you. I’m a 31 year old male and have dealt with insomnia on and off again since college. It only gets really bad though when I move into a new place with a lot of new noise. This can prevent me from sleeping for days. It’s just hard for me to accept these noises and I can’t shut my mind off. Usually, I can just leave my situation and with help from a physiatrist and plenty of yoga/mediation, I’m able to move on and sleep consistently again. The situation that I’m in now though is hard because this is the first place that I own and getting up and leaving won’t be so easy. Trying to accept this place, but it’s hard. Wish me luck. And if anybody would like to talk, let me know!

  6. Jeremy Reply

    I’ve had insomnia for over a year and a half. Since the pandemic showed up in the U.S. Sometimes I’ll go through stretches up to 5 days where I actually sleep well and think it’s gone. But it comes right back. I’m feeling hopeless and don’t know what to do. Any help I can get would be greatly appreciated. Can’t go on like this anymore

  7. Tameeia Renae savage Reply

    Well i can’t stay asleep every night and some nights i don’t go to sleep at all can you help me please?

  8. Robert K. Lane, II Reply

    Have had chronic insomnia for over 40 years. My personal best was 17 days without sleep. I’m a building contractor, and I walk a deadly tightrope most every day, using power tools in extreme locations on no sleep. At present I’ve been awake for 8 days. I know that 30% of Americans experience sleep disorders, but I feel that I’m a, “one percenter”. I’ve never met anyone who’s gone 17 days without the aid of crystal meth. Just looking for some people that can relate to me. Most normal people think I’m full of shit, owing to the fact that not sleeping sounds as ludicrous as not eating! I’ve done sleep studies, seen therapists and MD’s, tried every natural supplement, been on several prescriptions, even gave a witch-doctor a shot at fixing me. I was on heroin for several years, and that’s the only time I slept, ( junkies call it, “nodding”), with any regularity. Obviously, I had to take opiates out of my life when I fell in love with my first and only child. I’ve been clean for over 20 years, but there are times when I miss/need the peace and rest I got out of my addiction. I must also admit that there have been times that I’ve considered ending it all, for good, all for the low price of a .357 hollow point. I’ve just recently become a grandfather, and I want to be around to watch this most wonderful child grow up. Anybody out there feel me?

    • Ann Hisken Reply

      Hi Robert. I am just starting to reach out to different insomnia groups and found your post. Yes 17 days is a very long time to go without sleep. And you were on Day 8 when you wrote this? I have been on psychiatric medication for years now and as they lowered the dose my insomnia is insane. Same as you.. not sleeping one wink at night. I’m currently going to a sleep doctor.. but I’m not sure if it’s going to work. Have you found anything to help you? Is your job okay? I don’t work but I seriously feel so much empathy for people who work and have to deal with this..

    • Lee Reply

      I can totally relate to that. I’ve had insomnia for 43 years, of which the last 17 I have been an HVAC contractor. Same as you I’m using power tools with little sleep and fixing and replacing furnaces and ACs. Luckily I haven’t screwed up anything that I’ve replaced or fixed that I know of. I have never gone 17 days without sleep. At most, I’ve gone four days. But, since last year I haven’t been able to get more than 4 hours a night. I’m in bed at 10:30 and usually fall to sleep around 11. I usually wake up at 3 or 3:30 and can’t get back to sleep. Sometimes, and rarely, I wake up at around 2 and can’t get back to sleep. I’ve tried Zolpidem (generic Ambien) and, when I start taking it again after being off it for awhile, it works for a few nights, but then it quits working. I once tried Tarazadone, but I had an hallucination and immediately quit taking it (I thought I was awake and saw my wife at the kitchen table going through the mail. When I asked her the next morning why she was going through the mail so early in the morning she said she had been in bed all night. Yikes!!). Keep in mind though that sleep medicines aren’t intended for long-term use. They are only to help you get through a rough patch. Like you I have seen sleep specialists and even tried a Cognitive Behavioral Therapist and I have to admit she was the most helpful so far. Always looking to try something new (therapy or doctor that is). Like you I have a granddaughter that I would like to see grow up. She is 3. Hang in there, don’t give up. One thing that I think helps is to get out of bed when I can’t fall asleep, go downstairs, sit on the couch and read. I try to pick semi-boring books so I’ll be interested enough in the subject matter, but not so interested that I fight to stay awake and read. This sometimes works but it’s not sure fire. You just need something that will take your mind off your work and your sleep disorder for just enough time to allow you to fall asleep. This also helps to keep you from associating your bed with not sleeping. Sometimes I close my eyes and think of someone talking to me and sometimes that works. Again,not a sure thing.

      Maybe something that will do the trick is re-reading this reply. I am confident that it is sufficiently boring to put you to sleep. Just kidding.

    • Melissa Reply

      I feel your pain. It started when I came off a medication. First I would go 2 days of no sleep then on the third day I would sleep 3-4 hours. It progressively got worse after being in and out of two psych hospitals and seeing multiple doctors with no avail. The next 4 months i had absolutely no sleep but during that time I also had complex medical issues. Finally I got some relief after my primary care doctor put me on clonazapam and mirtazapine. I saw this as a miracle but was only temporary. We adjusted the meds and I am still getting some sleep most nights but feel like a zombie all day. The meds are slowly wearing off and I am frightened of the day in the near future when they wear off. I simply can’t and won’t go through that kind of horror again. I have no sleep drive so the gold standard CBT-I won’t work. Have you found any solutions? I am doing research but it is simply hard to find people out there that have such a severe case. Any advice would be appreciated. Thanks.

    • Melissa Reply

      Have you found any solutions? I tried previously replying to your post and I think it got lost.

    • Alesia Reply

      I am looking for a device for snoring the cap is not for me a few reasons I ordered on line the strips for snoring tat goes on your lips it was a scammer I had to turn them in didn’t get the order I need to get help with this matter please I have sleep disorder I know I keep my mouth open the strap gs around head didn’t work for me can you please send me something that will help me please

  9. Jennifer Austin Reply

    Chronic insomnia can go 6/7 days with no sleep, hallucinate, have meds but only take twice a week, as I feel it’s not a real sleep, but my body needs to rest

  10. Daniele Reply

    I’m a young man of 29 years old, I don’t sleep ever for many years. I lost my job and my fiancées, and now I think that I need a support group. Can you help me please?

  11. Kenneth Middleton Reply

    I had hodgkins disease at 19 ..9 months of chemotherapy.. have had severe insomnia ever since..im 51 now .. when i sleep its 1 to 1-1/2 hours and thats all i get i go 2 or 3 times a week with no sleep. Ive tried every recommendation for sleeping except quitting smoking, my nerves are too bad too quit at moment. I dont drink any caffeine for 2 months on this try,have quit before with no results. This is a 24/7/365 problem, not a occasional deal, been this way for over 30 yrs. Doctors keep saying its depression, but they have tried over 15 different antidepressants with no changes. They have tried ambien, could take 2 and not fall asleep. I recently got diagnosed with stage 3 kidney failure caused by me not properly caring for my diabetes, i stay so tired,depressed,and disgusted over not getting the help i need i just didnt care. I have mental issues and i am on disability after a long struggle to get approved. I have no friends due to mental issues, if i did i would see if any knew where i could get pills to help me off the street. Its the only option i have since doctors will not help. Is there anyone on here that has had my sleep problem also? Any information on how to get the help i need would be appreciated. Ive done everything but get on my knees and beg doctors. Its like they simply dont care how hard this is on me. I recently had my first grandchild born and i dont see myself living to see her 5th birthday, the struggle has gotten harder and harder the older i get. I dont see how my heart has held out this long

    • Melissa Reply

      I feel your pain. It started when I came off a medication. First I would go 2 days of no sleep then on the third day I would sleep 3-4 hours. It progressively got worse after being in and out of two psych hospitals and seeing multiple doctors with no avail. The next 4 months i had absolutely no sleep but during that time I also had complex medical issues. Finally I got some relief after my primary care doctor put me on clonazapam and mirtazapine. I saw this as a miracle but was only temporary. We adjusted the meds and I am still getting some sleep most nights but feel like a zombie all day. The meds are slowly wearing off and I am frightened of the day in the near future when they wear off. I simply can’t and won’t go through that kind of horror again. I have no sleep drive so the gold standard CBT-I won’t work. Have you found any solutions? I am doing research but it is simply hard to find people out there that have such a severe case. I have had high glucose ever since this started and I know it is linked to not sleeping and the high stress it puts on the body. Any advice would be appreciated. Thanks.

  12. Angel Vazquez jr. Reply

    Going thru insomnia,for years,it’s a nightmare, nothing works,2 to3 days with no sleep,need a support group.

  13. angie Reply

    Are there any support groups for the partner of people who suffer with REM behavioral sleep disorders?

  14. Nancy Perlman Reply

    I’ve suffered with insomnia all my life. Seems my life is backwards sometimes and no “ normal “ people get it. I just wanna talk to someone like me

    • Melissa Reply

      I get it! Have you found any solutions? Seems like all the websites say the same old things. I just ordered 100 dollars worth of books just for the hope that I might get some sort of different advise.

  15. Pam Reply

    Maybe we can start a chat room or somekind of insomnia support meeting place where we can meet when we cant sleep.
    I have struggled on an off for a few years it comes and goes. Lately its getting worse. Im afraid of going to sleep because i will be up all night.
    Im not on any sleep meds yet but am thinking i might need some.

  16. Tori Reply

    If anyone has insomia and would like to talk, let me know. I have not been able to sleep much in the past two weeks and it’s getting to me. I just need someone to talk to.
    Is anyone a part of an insomnia support group?

  17. aimee Reply

    I am 16 and have had insomia for the past 2 and a half years. I have the same nightmere every night and I never sleep more than an hour at a time. I often go days without sleep, and im on two different times of medication. I also wake up bleeding or bruised from things I have done to myself while I was asleep. If anyone has something similar I would love to talk to you, it would be nice to know im not the only one. 🙂

  18. Dav Reply

    All of the time. I don’t always sleep but even when I do I feel tired all the time. Right now it’s 4 a.m. and I wish there was someone to talk to.

  19. Ilene Heyman Reply

    I have had an issue with daytime drowsiness, not narcolepsy or sleep apnea. I had the sleep study and it just came out ad nonspecific hypersomnia. I fight it and pursue everything but my eyes always tired . I never feel refreshed even after 8 hours of sleep. Past 5 seem to be ready for bed but just got over severe depression so I stay very active . I get very drowsy when exercising. Anyone else have these issues?
    I would love to meet with people and discuss.

    • Frances Reply

      I also suffer from daily fatigue and trying to get a diagnosis. I just slept 20 hours straight. I take a narcolepsy medicine every morning but that doesn’t help enough. I just made an appointment with a John Hopkins neurologist for June 7th. The daily fatigue is making it difficult for me to function and work. I also have psoriatic arthritis that can cause fatigue but usually not extreme fatigue like I have.

  20. Sandy Bridge Reply

    Are there any groups for idiopathic hypersomnia or does that just go along with narcolepsy group?

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