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  1. #1
    ICN Member Romans8:28's Avatar
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    Falling asleep on the toilet


    I remember as as kid hearing how my grandma feel asleep on the toilet and fell off and broke her nose, and thinking that was soo funny! Now I wonder if she might have also had IC...,

    This has happened to me a lot more lately and 3 time I fell of and busted my face pretty bad.. funny but it is not funny and no fun to explain when
    you have a bruise on your face either! We ahave joked about adding a seat belt to the toilet..., sad.. and honestly if Dr. Moldwin did not talk about this on his DVD, being common amoung IC patients I would really feel stupid!


    . Really with the vaginal suppositories etc. I do sleep better but if I do go over 4 hours the pain level become severe, then I find it harder to go. I have PFD, have seen a PT and even have to take Flowmax to be able to even urinate without self cathing! If I am under stress, my bladder is too full etc. I have trouble going.

    I have been busy, so waking up 3-4x a night to go to the bathroom is exhausting but then to sit and wait to even go, is impossible, I either fall of and get hurt or sit there for way too long which makes the PFD worse.

    ANY ONE else have this issue and suggestions??

    So far we have thought of
    Adding a seat belt.
    My husband suggested a radio collar like for dogs where he could make sure I was away, lol... he sometimes calls to make sure I am awake but often sleep through everything.

    Added a padded floor,
    Putting on a 4 wheeler helmets
    and setting an timer for say 10 min. then get up and try again
    after I walk around.

    All I know is I need help before I get hurt really bad! MY kids find it very funny..which I understand but the flare from falling is no fun either!

    Thanks for all those unafraid to admit this has happened to them too and give me any advise here!

    Shelly
    Shelly Matthewson
    Private Researcher
    IC Support Group Leader
    Director of MOARK Interstitial Cystitis
    www.moarkic.com

    Also diagnosed with Meduallary Sponge Kidney Disease, with many kidney stones and chronic infection, Pelvic Congestion Syndrome, and
    PFD

    "And we know that all things work together for good to them that love God, to them who are the called according to His purpose." Romans 8:28

    In His hands even IC (MSK, PCS etc.) can be a blessing and an opportunity to serve Him by help others. It is my heart to help others and to network patients and medical practitioners in Missouri and Arkansas!!

  2. #2
    Support Leader kadi's Avatar
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    Hi Shelly,
    I've not fallen asleep on the toilet, but have fallen asleep on the bathroom floor because there wasn't much point in going back to bed since I'd be back in the bathroom 20 minutes later.

    I did try to sleep almost upside down because my first urologist (a real jerk) told me he saw something pressing down on the top of my bladder & (in a badly sleep deprived state) I thought that if I piled up pillows under my feet & hips to invert myself, I might reduce the pressure. All that happened was I fell off the bed & felt very silly.

    I do puzzles while sitting on the toilet because it takes my mind off trying to void, relaxes me so it comes easier. Unfortunately, I now identify Sudoku with peeing...

    What has helped me most with nighttime frequency...
    Instillations before bedtime
    Nighttime meds: Elavil, Darvocet (painkiller), Flexeril (muscle relaxant)
    Beaumont Hospital CD's for IC patients for when I get back to bed to fall asleep again faster.

    I hope you find something that helps. The sleep deprivation is one of the worst parts of IC...
    Kadi

    -------------------------------------------------------------
    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    ------------------------------------------------------


    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
    Source - Pinterest
    "


    Current treatments:
    -IC diet
    -Elavil 60mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills every morning and night
    -Pyridium if needed,
    -Pain medicine at bedtime daily, as needed during the day several times per week
    -Antibiotic to prevent UTI infections from 2x daily catheter use
    -Colace & Senna to treat chronic constipation from meds
    -Dye Free Benadryl 50 mg at bedtime
    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
    -Managing stress= VERY important!
    -Fur therapy: Hugging the cat!

  3. #3
    ICN Member
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    I am a male, and I have fallen asleep on the toilet before. That was while I used to have sleep deprivation due to IC. Of course, I can usually stay asleep now.(which I feel about half asleep right now) I was in the bathroom because of number2.(and maybe IC as well) Yep! I just never left the seat. Ok. I actually sit down to urinate sometimes.(if I am really tired like now and if I am not gonna get any out soon enough) (which I do end up peeing) Yep! IC really does suck.(because I used to stay standing if urinating only)(and usually try to) Oh! I don't know about other dudes with IC. Oh, well! I better get offline now. I did admit it as well.

  4. #4
    ICN Member Romans8:28's Avatar
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    Just FYI in case your not aware of it there are some new resources for men with IC. The ICA has a new brochure out just for men. I know one of the past IC Optimists was also written for men and the ICN announced that they now have a facebook just for men with IC! I can not find the link right now and I am tired and heading to bed.. but check the home page with news flashes on it.

    Today I had two slightly black eyes from the fall but with lack of sleep from IC etc. I often have dark circles so few noticed, lol!

    Thanks for taking time to post!

    Shelly
    Shelly Matthewson
    Private Researcher
    IC Support Group Leader
    Director of MOARK Interstitial Cystitis
    www.moarkic.com

    Also diagnosed with Meduallary Sponge Kidney Disease, with many kidney stones and chronic infection, Pelvic Congestion Syndrome, and
    PFD

    "And we know that all things work together for good to them that love God, to them who are the called according to His purpose." Romans 8:28

    In His hands even IC (MSK, PCS etc.) can be a blessing and an opportunity to serve Him by help others. It is my heart to help others and to network patients and medical practitioners in Missouri and Arkansas!!

  5. #5
    ICN Member
    Join Date
    Sep 2008
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    I have made my presence known on the facebook page by now. I am hoping we can get more than the 40 members that we currently have. (which actually includes some females such as Jill) Of course, I guess that she actually started it. Ok, then. I could feel a little better right now. I was told respiratory infection, or cold, last week and feel better one day and messed up the next. Of course, I am sick and tired of being sick and tired by now. Yep! I know we did stray from the original topic, but it will be ok. Thanks

  6. #6
    ICN Member
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    Quote Originally Posted by Romans8:28 View Post

    I remember as as kid hearing how my grandma feel asleep on the toilet and fell off and broke her nose, and thinking that was soo funny! Now I wonder if she might have also had IC...,

    This has happened to me a lot more lately and 3 time I fell of and busted my face pretty bad.. funny but it is not funny and no fun to explain when
    you have a bruise on your face either! We ahave joked about adding a seat belt to the toilet..., sad.. and honestly if Dr. Moldwin did not talk about this on his DVD, being common amoung IC patients I would really feel stupid!


    . Really with the vaginal suppositories etc. I do sleep better but if I do go over 4 hours the pain level become severe, then I find it harder to go. I have PFD, have seen a PT and even have to take Flowmax to be able to even urinate without self cathing! If I am under stress, my bladder is too full etc. I have trouble going.

    I have been busy, so waking up 3-4x a night to go to the bathroom is exhausting but then to sit and wait to even go, is impossible, I either fall of and get hurt or sit there for way too long which makes the PFD worse.

    ANY ONE else have this issue and suggestions??

    So far we have thought of
    Adding a seat belt.
    My husband suggested a radio collar like for dogs where he could make sure I was away, lol... he sometimes calls to make sure I am awake but often sleep through everything.

    Added a padded floor,
    Putting on a 4 wheeler helmets
    and setting an timer for say 10 min. then get up and try again
    after I walk around.

    All I know is I need help before I get hurt really bad! MY kids find it very funny..which I understand but the flare from falling is no fun either!

    Thanks for all those unafraid to admit this has happened to them too and give me any advise here!

    Shelly
    I have fallen asleep many times on the toilet. I also keep a magazine in the bathroom area to keep my mind off the agony of urinating and to help me relax.

  7. #7
    ICN Member nanawaggs's Avatar
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    Southern California
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    1,069
    Oh, you are not alone! I have to go at least 6 times at night and feel like a zombie at times. Yes, I have actually fallen asleep (several times) waiting to go but the jerk from falling asleep woke me up as I caught myself. I've also had my legs fall asleep and found it so difficult to walk back to bed on numb feet/legs, thinking I was going to collapse.

    What I decided to do: as soon as I go, even a little, I have decided to go back to bed. Then when the pain wakes me again, I go again. I'm finding that I don't allow myself to stay there long enough to sleep and my legs never fall asleep either. It was the lesser of two evils....getting hurt or hurting because I needed to go again. I have the magazines but usually I'm so tired that I drop the magazine as I nod off and have caught myself before I actually fell.

    Isn't it just so exhausting? Just a week ago I had to do a voiding diary....I was so frustrated and tired by the 2nd day, during the night, that I scribbled on the paper that "I want a good night's sleep, have cut way down on my fluid intake and miss my water and juices so much. I just want to be normal again." I felt like a rebellious child.

    I sure wish I had an answer for you....love the ideas your family came up with though!!!!!

    Do be very careful, you might be laying there unconscious someday and it would take a while for someone to find you.

    Saying a prayer for you
    Ginger

  8. #8
    ICN Member Romans8:28's Avatar
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    Yep,I have done the leg falling asleep thing and feeling like you would callapse when you first try to walk too. It is scary, If I hold a book i often drop it and at least that wakes me up. My husband will sometimes call out if I am too long. The biggest problem is that my bladder is often hard to relax so won't go right away,, I am already tired so fall asleep. I have hit hard enough I have to admit is scares me now. The last time both eyes were slightly black the next day but since i always have dark circles few noticed.....

    The worst this is when you fall asleep and can't remember if you went or not. The Joys of IC!
    Shelly Matthewson
    Private Researcher
    IC Support Group Leader
    Director of MOARK Interstitial Cystitis
    www.moarkic.com

    Also diagnosed with Meduallary Sponge Kidney Disease, with many kidney stones and chronic infection, Pelvic Congestion Syndrome, and
    PFD

    "And we know that all things work together for good to them that love God, to them who are the called according to His purpose." Romans 8:28

    In His hands even IC (MSK, PCS etc.) can be a blessing and an opportunity to serve Him by help others. It is my heart to help others and to network patients and medical practitioners in Missouri and Arkansas!!

  9. #9
    ICN Member
    Join Date
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    Corte Madera, Ca
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    58

    Falling asleep on the toilet

    Hi

    This has happened quite often to my daughter, so we got the stand alone toilet chair that the hospital sent home with my mother, and put this over the bowl of my daughters toilet bowl. This chair comes with sidebars which helps keep you from falling into the bathtub and sleeping there for the next few hours passed out, but you can still fall forward though, so maybe a seat belt would be something to add.

    Best of luck.
    cb

  10. #10
    ICN Member Romans8:28's Avatar
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    I have two things very helpful, though the nightly sleep interruptions continue to
    be frustrating. I bought a small timer at the dollar store and set it for 5 min. that way
    if I do fall asleep it will wake me quickly. I also found that keeping a book etc in my hand helps since this will drop before I might fall.

    The other night I went to the bathroom, then took my med. I take during the night. For some reason I sat down for a minute on the couch with my PLASTIC thankfully cup of water. I must have fallen asleep again and woke when the water dumped on me....
    funny but not! I try to rest a few hours in the afternoons but I long to not have to wake up at night!!

    Thanks for all the great tips... hope it might help some others too. I like the handicapp toilet rails too!

    Shelly
    Shelly Matthewson
    Private Researcher
    IC Support Group Leader
    Director of MOARK Interstitial Cystitis
    www.moarkic.com

    Also diagnosed with Meduallary Sponge Kidney Disease, with many kidney stones and chronic infection, Pelvic Congestion Syndrome, and
    PFD

    "And we know that all things work together for good to them that love God, to them who are the called according to His purpose." Romans 8:28

    In His hands even IC (MSK, PCS etc.) can be a blessing and an opportunity to serve Him by help others. It is my heart to help others and to network patients and medical practitioners in Missouri and Arkansas!!

  11. #11
    ICN Member kuntrygurl78's Avatar
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    East Central IL (near Champaign and Bloomington)
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    I have fallen asleep on the toilet. I havent fallen yet..

    I would say the getting up 2-4 times a night to go is my biggest IC complaint. Detrol has helped. I was more than 4 times every night before it.

    I am always tired! I would love to wake up feeling rested for once
    Meds: Percocet PRN; Pyridium PRN. First symptoms Dec 2005. Diagnosed in March 2006.

    I am the proud mom of a two year old boy! I was lucky enough to be in remission my entire pregnancy. If you have any questions regarding my pregancy, delivery, breastfeeding, or pumping, feel free to contact me!

    Im on Facebook! Just tell me you are from the ICN. Look me up under Kim Wayne.

    I love working as a CNA in a nursing home. Started school in August part time. Going for my LPN!!!!

  12. #12
    Support Leader Sarojini's Avatar
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    I have fallen asleep on the toilet and fallen off before, too. Several times. Cracked my head pretty good once as well. While I don't really have this problem too often any longer, I do remember it well. What I ended up doing was something my urologist (Dr. Robert Evans) suggests to his patients that mention the problem to him. We got a hamper and put a pillow on top of it, and if I got up to go to the can in the night, I'd pull it over in front of myself and lean on it. This served two purposes - one, it was more comfortable for me to use it for support when getting into that leaning-forward, almost "jockey" type position I'd have to be in just to urinate at the time (this was pre-InterStim for me), and two, it supported me and kept me from falling forward off the toilet if I fell asleep. Of course, if I didn't fall asleep, I'd just finish urinating and then push the hamper back into its usual position as I left the bathroom.
    ****
    Jen

    *Diagnosed with severe IC in 2004
    *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
    *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
    *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

    **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

  13. #13
    ICN Member Cassaundra's Avatar
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    Shelly have you tried a tryclic antidepressant?

    I used to have a lot of nocturia before the amitryptiline. Normally I would stub my toe or trip on my way to the bathroom. I think I've fallen out of bed once... LOL, but owie.

    I read it once before here on the ICN, but sometimes (like after a surgery) if I have trouble going to the bathroom, I will straddle the toilet BACKWARDS. It does help a lot. I have a place to rest my head/arms (although it can be cold) and my body will eventually relax for me to go to the bathroom.
    -Cassie

    21 year old female. Diagnosed as of November 2008 with onset of symptoms.

    I am currently diagnosed with IC, PFD, endometriosis, asthma, and vulvodynia/contact dermititis, IBS, and fibromyalgia.

    Medications:

    IC:
    -Amitryptyline 10 mg

    Fibromyalgia:
    -Neurontin (in place of lyrica because I can't afford it- lol) 300 mg x3 a day
    Flexeril. 10 mg. As needed.
    -
    Endometriosis:
    -Microgestrin.
    First laparoscopy showed moderate to severe endo

  14. #14
    ICN Member Cortana-mana's Avatar
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    I often jump in the shower to pee at night if I am having trouble being able to relax enough. It helps me relax my muscles and avoid straining my muscles. I have PFD too and really had to learn to quit trying to force myself to pee. It also makes it easier for me to fall back asleep as I often have pain after urination as well.

  15. #15
    ICN Member
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    I have not fallen asleep on the toilet, but a few times my sleep deprivation caused vertigo which is a sensation of being totally off balance and dizzy. I had to slide my body back to my bed because I could not stand or even balance on my hands and knees. I used to push the urine out I would be so frustrated, but that made my PFD so much worse. Never, ever push. It's the worst thing you can do. My symptoms are the worst at night. What has helped is taking warm baths (you can use Aveeno powder in the bath to help with dry skin, but nothing else.) I used to take two 15 min baths per day, but now I have Vulvodynia and the warm water burns. When I was able to use that therapy which was part of my treatment from Dr. Moldwin it was extremely helpful for my PFD. I use ambien every night. I can't sleep without it. Also, I have a foam pad that I purchased several years ago from this site I believe that I roll up and put it in between my legs and hold up against my vaginal area. Sort of like you would put an ace bandage on a sprained muscle. If your pelvic floor muscles are weak the support of the pad helps. I, like some of the others also feel it's best to go back to bed, try to relax and come back rather than sitting there because I think that just causes more stress and tightening of the muscles. The way this disease affects your sleep is one of the worst things to cope with. It's always a struggle, but some of these things have helped. Used to be I was lucky if I got 2 hours per night. Hope you're able to find some suggestions helpful.

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