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Interstitial Cystitis - A Disease So Horrible You Can't Sleep

by Annikki Hird
(Cincinnati)

I have a disease called interstitial cystitis (IC). This is a bladder condition which is not only painful but causes urinary frequency and urgency which persists both day and night. Nocturia, what they call urination that happens at night when you are trying to sleep, causes insomnia. IC patients will have to get up even 8 times a night or more.


Information on the disease:
http://www.ichelp.org/Page.aspx?pid=327

About its effect on sleep:
http://www.ichelp.org/Page.aspx?pid=417

This disease is simply the most horrible thing you can have happen to you. I'm in too much pain to sleep most of the time. There is NEVER any empathy for the lack of sleep the disease creates. I don't know about other people but I have severe IC and I've experienced enough lack of sleep to have serious involuntary muscle movement, hand tremors, slurred speech and to appear crazy or out of sorts.

I never hallucinated with lack of sleep and am still me with it save for that I feel so bad that it is indescribable. What is far worse I find is the utter lack of empathy and willingness for people to judge me on how I am the day I didn't get sleep--permanently. If you appear abnormal at any time, even if it is from something anyone can go through, which is lack of sleep, you are permanently labeled and nothing changes people's opinions. Period.

I'm homeless now because of this. Every story I hear about sleep debt online seems to entail people losing everything. I have. Worse, I have to sleep with a catheter in that needs to stay sterile and cannot while I'm homeless.

I graduated from college, was on the deans list regularly and have done much more but I am no longer considered human or sentient by most people I know because of how I appear when sleep deprived, and nothing seems to change it.

A Note From Kevin

Dear Annikki,

Thanks so much for your heartfelt message. Your sorrows and your frustrations pour out of your words, and I hope they find eyes who can relate or empathize with them on this site.

This is the first time for me hearing of interstitial cystitis, but I wonder with its devastating effects on sleep, as you point out, if it's well known in the professional sleep circle. I'll try to mention it around my teachers and fellow students next time I'm at school in September and see what comes of it. Do you know if it is a well-known condition within the field of sleep medicine?

For me, a very interesting and very true part of your message struck me when you highlighted the judgments and lack of empathy other people have towards you when you are in states of severe sleep deprivation. Your experience with this is clearly very extreme, but the same idea can be applied to all sorts of instances of sleep deprivation--from the everyday Joe missing out on a couple nights of sleep to the chronic difficulty sleeping you experience.

Whatever the level may be, when we go throughout our day we do so without others being cognizant of how we slept the night before (or the days, months and years leading up to that day). All others can see is what we present to them on the outside--our facade of actions--not the sleep-deprived fog we may feel inside. And as a result, judgments are made attributing actions directly to our personality, even though we may not have made those same actions were we not sleep deprived.

For most of us, we are able to combat this simply by catching up on sleep for a few nights. For you unfortunately it seems it has not been that easy. Annikki, where do you go from here? Do you have a game plan of how you are going to combat IC as you push on into the future? How combat-able is it and what do you need to do so?

Thanks again so much for sharing a bit of your story Annikki. I'd love to hear more of your thoughts here whenever you'd like to share them.

All the best,

Kevin

Comments for Interstitial Cystitis - A Disease So Horrible You Can't Sleep

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Sep 30, 2010
So Sorry...
by: someone who cares

Nikki,
I am so sorry you are going through this. I hope you get the care that you need.

Aug 11, 2011
interstitial cystitis
by: Anonymous

Hi, I too have this terrible disease. But I have now under control thru diet. I stayed away from any food with high sodium like bacon, cold meat, canned food and just spreading salt on the food and also acidic food. I only eat cooked food. No salad and fruits are just the sweet ones like black grapes, papayas, mangoes. I have vitamins that helps with the healing of my bladder. I sleep 2 to 5 hours now without going to the bathroom (compared to 10 min to 1 hour) I still get attacks sometimes when I eat food high in sodium. But i know what to do the following day to get a better sleep.

I have not recovered completely from nocturia. So I continue to take relaxing teas, herbal teas or sleeping pills to help me sleep.

I pray that this will help you. I can email you the site where I learned and understood IC. The cause and the cure. The Doctors can not help you. I've been through so many of them.

Jean.
My email is jenestrada7@yahoo.com/

Nov 25, 2011
Effective Treatment for IC and OB NEW
by: Hip

An Effective Treatment for Overactive Bladder (OB) and Interstitial Cystitis (IC)

Some years ago I made a fortuitous discovery that the herb [B]Ruta graveolens (common rue)[/B] significantly improved my OB. In fact, even when I stopped taking Ruta graveolens, the improvement this herb made in my OB symptoms still remained for months.

This herb is something you may want to try. I would be very interested to hear if you got similar good results from taking Ruta graveolens. Note that Ruta graveolens should not be used during pregnancy due to the risk of miscarriage.



[B]Reason[/B]:

I think the reason why this herb [URL="http://en.wikipedia.org/wiki/Common_Rue"][B]Ruta graveolens (common rue)[/B][/URL] works so well for interstitial cystitis / overactive bladder: I think it's because this herb contains a substance called [B]5-methoxypsoralen[/B] that alters potassium channel fucntion in cells (ref: [URL="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2662044/?tool=pmcentrez"][B]here[/B][/URL]), and potassium channels are implicated in interstitial cystitis (ref: [URL="http://www.ncbi.nlm.nih.gov/pubmed/15469394"][B]here[/B][/URL]).

Nov 25, 2011
Effective Treatment for IC and OB NEW
by: Hip

An Effective Treatment for Overactive Bladder (OB) and Interstitial Cystitis (IC)

Some years ago I made a fortuitous discovery that the herb [B]Ruta graveolens (common rue)[/B] significantly improved my OB. In fact, even when I stopped taking Ruta graveolens, the improvement this herb made in my OB symptoms still remained for months.

This herb is something you may want to try. I would be very interested to hear if you got similar good results from taking Ruta graveolens. Note that Ruta graveolens should not be used during pregnancy due to the risk of miscarriage.



[B]Reason[/B]:

I think the reason why this herb [URL="http://en.wikipedia.org/wiki/Common_Rue"][B]Ruta graveolens (common rue)[/B][/URL] works so well for interstitial cystitis / overactive bladder: I think it's because this herb contains a substance called [B]5-methoxypsoralen[/B] that alters potassium channel fucntion in cells (ref: [URL="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2662044/?tool=pmcentrez"][B]here[/B][/URL]), and potassium channels are implicated in interstitial cystitis (ref: [URL="http://www.ncbi.nlm.nih.gov/pubmed/15469394"][B]here[/B][/URL]).

Dec 25, 2011
i understand NEW
by: teresa

my heart goes out to you. I was bedridden for 8 years with IC. It ruined my life. I got it in 1992 before the internet. It took 2 years and 9 docs to diagnose it and then they just shrugged their shoulders. I got relief finally from elavil. I started at 50 mg and weaned myself down to 10. it does have side effects but these are nothing compared to IC. I hope you can find something to ease your pain; it is a nightmare.

May 08, 2012
i understand too NEW
by: Anonymous

I have suffered 27 years from interstitial cystitis and after all these years people still don't understand the daily challenges I face.
#1 the failure of the medical community to think that we should be able to function with this degree of pain and the unwillingness to offer strong pain meds for this debilitating condition.
I have seen strong pain meds prescribed for illnesses that don't even come close to this excruciatingly painful disease. I feel some doctors think us women are just hysterical babies.
When i was 28, my bladder was so bad it was severely ulcerated and bleeding and was not given nothing for pain. How inhuman is that !! I finally found a female doctor who treats me as a whole as i also have fibromyalgia and DJD, DDD.
Don't give up. Pray to the Lord, he got me thru the worst of times with my I.C.
I will pray for you !!!!

Oct 12, 2012
cant sleep NEW
by: Anonymous

I started symptoms last october 2011 and have had on and off days, one day on two days off. Lately the bad days are getting longer and the good days are seldom here. This is now one year later. I am sure I have IC even though I have not been officially diagnosed with it.
I try to stay upbeat, but it is hard and sometimes I can feel my depressions taking over.
I refuse to give in to this. I can cope pretty good with the pressure during the day, but at night it is worse and now keeps me from sleeping, hence I am sitting up and writing this.
I read through all these posts and feel sorry for all of you and myself having to go through this.
I have to get up at 230 and now it is 10, So not much sleep for me today.

Nov 15, 2012
ic is ruining my life NEW
by: Anonymous

Hi I was recently diagnosed with ic 2 months ago, it took 2 yrs & 4 doctors to finally tell me I had ic before that they were just giving me meds for a uti I'm only 20 yrs old. I'm so depressed about this because NOBODY understands cuz the pain is in the inside where other people can't see, I wake up 3 or 4 times at night to pee I gotta be up for work by 6am so thats very very frustating!!! I also get bladder installations maybe u should look into that although it only helped me with my pain & instead of peeing 30 times a day I pee 15 times a day. I don't remember how it is to be normal anymore I hate itthis disease is so horribble & drs are not eduated enough about it!

Nov 15, 2012
ic is ruining my life NEW
by: Anonymous

Hi I was recently diagnosed with ic 2 months ago, it took 2 yrs & 4 doctors to finally tell me I had ic before that they were just giving me meds for a uti I'm only 20 yrs old. I'm so depressed about this because NOBODY understands cuz the pain is in the inside where other people can't see, I wake up 3 or 4 times at night to pee I gotta be up for work by 6am so thats very very frustating!!! I also get bladder installations maybe u should look into that although it only helped me with my pain & instead of peeing 30 times a day I pee 15 times a day. I don't remember how it is to be normal anymore I hate itthis disease is so horribble & drs are not eduated enough about it!

Jun 21, 2013
Omg NEW
by: Anonymous

I am so sorry t p.o. hear this. I suffer too but mine last up to 5 days with like 2 hours asleep if that. I wanted to ask if you have ever tried any meds??? If so what kind??? Or are you against meds???

Sep 19, 2013
My experience NEW
by: Anonymous

I've had IC since 2006 -40. I've never talked about it. Sleep is one area that has been really impacted. As I've become older, it has been difficult to be effective in my job. I have finally disclosed it and have taken a little time off.
The point I wanted to make is how I agree that others don't understand. I have additional health concerns but you just would not know it if you looked at me. I came up with a way to help people really think about it and hopefully get it.
I explain that it's like I have a a baby that never grows up. This baby gets up 6 to 8 times a night. Sometimes the baby is in a great deal of pain and difficult to sooth. My baby may never grow up and my husband can't help me even though he wants to. It's really wearing me down. I can deal more with it during the day. It's nights....

Sep 19, 2013
My experience NEW
by: Anonymous

I've had IC since 2006 -40. I've never talked about it. Sleep is one area that has been really impacted. As I've become older, it has been difficult to be effective in my job. I have finally disclosed it and have taken a little time off.
The point I wanted to make is how I agree that others don't understand. I have additional health concerns but you just would not know it if you looked at me. I came up with a way to help people really think about it and hopefully get it.
I explain that it's like I have a a baby that never grows up. This baby gets up 6 to 8 times a night. Sometimes the baby is in a great deal of pain and difficult to sooth. My baby may never grow up and my husband can't help me even though he wants to. It's really wearing me down. I can deal more with it during the day. It's nights....

Sep 19, 2013
My experience NEW
by: Anonymous

I've had IC since 2006 -40. I've never talked about it. Sleep is one area that has been really impacted. As I've become older, it has been difficult to be effective in my job. I have finally disclosed it and have taken a little time off.
The point I wanted to make is how I agree that others don't understand. I have additional health concerns but you just would not know it if you looked at me. I came up with a way to help people really think about it and hopefully get it.
I explain that it's like I have a a baby that never grows up. This baby gets up 6 to 8 times a night. Sometimes the baby is in a great deal of pain and difficult to sooth. My baby may never grow up and my husband can't help me even though he wants to. It's really wearing me down. I can deal more with it during the day. It's nights....

Dec 20, 2013
only others with IC will understand NEW
by: Anonymous

I have IC too going on 8 years. I still hold a decent job. I take different pills to control IC. Hydroxyzine or Zertec help me with pain an sleep. I find Hydroxyzine more effective. I take 10 and sometimes 20. I feel a bit better the next day but not my normal self still. Coffee and tomatoe sause are triggers for me. I try to avoid them but coffee is hard to let go. I also take warm bath before badtime but not all the time. I do have days here and there when nothing works and I dont sleep. I go for walks too. I use a Aderral to help me keep focus during my work. It is very depressin at times. Im hanging in here. Only God knows whats next.

Mar 16, 2014
Sleep deprivation from I.C. NEW
by: Joanne Hudson

I have had Interstitial Cystitis since I was 28. I am 63 now and it has steadily gotten worse as I got older. I pee 12 to 14 times a night and lay in pain unable to sleep. The only thing that buys me a little time between peeing is oxycodone. I keep a portable toilet right next to my bed to make it easier. I often use AlkaSeltzer Gold to alkalinize my urine at night. I'm on a super restricted diet for I.C. I've also discovered that many probiotics contain 'beneficial' yeast organisms that cause severe pain and I then must do anti-fungal medicines to remove them again. I also have Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Both illnesses began at the same time and are related somehow. Stress and sleep deprivation have made my life like a bad dream that I cannot awaken from. I'm stupefied during the day and can do no more than feed myself and maintain my home. No social life. It is terribly isolating and depressing. There is a deep sense of loss. I feel for you all.

Apr 18, 2014
No hope NEW
by: Ruth

Sadly I have had IC problems since I was 13 and now im 33. I didn't know it was IC until I was 28 and that was thanks to watching a special on tv and I had to go to the doctor and tell them. Then I lost my insurance and had to go years with no help. When I got insurance again in 2013 I was shocked because the urologist I went to see denied IC but wouldnt test me. I changed urologist and the second one tested me and of course I had it. I'm just sick of how many doctors in the past never caught it. I was told I was not feeling pain and to not drink that much water. I don't drink that much water and that angered me. It has gotten way worse over the years. I am only 33 and pee every thirty minutes in the day and wake up every hour at nite to urinate. I am getting weekly bladder wash and had bladder distension last week and still no improvement and on elmiron and an antihistmine. More research needs to be done and patients treated for the severe pain. You know the pain is bad when you have no clue you have bladder infections and don't flinch when you get a cathere put in. I need to fight and get pain medication because I'm so tired from fighting all the time. I need a break from my bladder so bad.

Jun 15, 2014
homeless NEW
by: Anonymous

i am on dissability and have this dissability you could live with me

Jun 15, 2014
homeless NEW
by: Anonymous

i am on dissability and have this dissability you could live with me zig2b10@hotmail.com

Sep 07, 2014
Fellow cincinnatian NEW
by: Holly

Hi Annikki, I am so terribly sorry for what you are going through. I too am living in cincinnati and have IC. Have you been to the urology group? Doctor Pliskin is VERY educated about this disease. He travels the country and gives lectures on it. For me the bladder distentions help along with an antihistamine at night. I take promethazine. It at least makes me sleepy enough I can sleep through the horrible pain. Hang in there.

Nov 13, 2014
xxxx NEW
by: Rachel

Dear Annikki,
I changed my phone number to listed earlier this year. I have not yet verified that it is in fact
listed by calling 411. cbyp has not updated their
information.

Nov 14, 2014
so sorry to hear there's more of us NEW
by: Lisa

I recently had a bladder taping surgery. I did very well after the surgery. But o error a week ago, I was getting painful symptoms. If I do any physical activity, I wind up with excruciating vaginal, eurethra or abdominal searing pain. Weight gain of 5/7 lbs over the last few days. And 2 to 3 nights of sleepless for no reason at all.
Does the woman named jean still have the info for a IC diet? It sounds like that might be a good start for me besides pain killer and no activities. Thx# Lisa - flumpyhippo@gmail.com

Jun 06, 2015
ic NEW
by: Bree

Sweetie, im so sorry. I have it too.no one understands. At this point I am contemplating suicide because I cant take it anymore. Im losing my house, my mind, my life. There is no joy anymore. Ibe fought this for 20 years now and im beyond exhausted. Mine went away for years, now its back and worse than ever. Doctors dont understand the severity of the pain. Im sick of explaining. Im sick of fighting. I just cant do it anymore. I wish I could cure us all of this heinous disease.I cant hold on anymore.You are not alone. Im praying for us both. Wish I could give you a hug. I feel your pain, I truly do..

Jul 10, 2015
IC and the never ending frustration NEW
by: regina schanning

I feel so bad that you have had such horrible experiences in finding doctors and helpful resources to assist you in finding appropriate, effective ways to manage the debilitating pain that IC brings to all of us who suffer with this medical condition. I am 44 years old and was finally diagnosed with IC two years ago after 4 years of suffering without any assistance, empathy, understanding, or attempt to help me manage my pain from medical professionals. I still cannot get a referral from my GP to a Urologist and am only being treated for the pain with a Tricyclic Anti-Depressant called Imiprimine. I am also taking Oxybutinin or Ditropan for the urgency and so far the two meds are working. I have had to up the dose of the Imiprimine a few times as well as the Oxybutinin...but so far so good. However, I still have IC flares that the meds don't really touch and times when I am so frustrated by my discomfort that I honestly considered checking into a mental health facility voluntarily due to literally going out of my mind due to the constant pain. I am so angry and shocked at the medical community for being so lame in understanding and treating IC. I can't help but think some of it is just sexism...for decades medical issues that predominately affect women are not on the top of the list for testing and aggressively trying to find ways to help IC sufferrers. I hope you have found some medical assistance and housing....you do not deserve to suffer like this.

Oct 15, 2015
Very very tired NEW
by: keeler

Hi I have terrible ic. I also have a eroding mesh in the bladder. Right now I am on the bed with a ice pack between my legs. Where I come from we have a very critical shortage of family doctors. When I went to see a doctor, she told me to just stick my finger up my vaginal to help the urgency and pain. I am not kidding...finally I went to emergency and they made an appointment with my urologist. I take zopoclone,and trazadone for sleep. I will be starting a study next week with liris. The problem is 5hat if it works I will not see the med for 10 years. My heart goes out to all ic sufferers

Oct 15, 2015
Very very tired NEW
by: keeler

Hi I have terrible ic. I also have a eroding mesh in the bladder. Right now I am on the bed with a ice pack between my legs. Where I come from we have a very critical shortage of family doctors. When I went to see a doctor, she told me to just stick my finger up my vaginal to help the urgency and pain. I am not kidding...finally I went to emergency and they made an appointment with my urologist. I take zopoclone,and trazadone for sleep. I will be starting a study next week with liris. The problem is 5hat if it works I will not see the med for 10 years. My heart goes out to all ic sufferers

Oct 22, 2015
Extreme pain & shame IC!!!! NEW
by: Gina

I also have suffered with IC severe IC for about 12 years now. I have had at least 10 surgery's am seeing my 4th Dr. I lost my job, husband "asshole" friends family.
People say they understand, but they really don't have a clue what it does not only physically but Mentally. I could be homeless at any moment and my family never offers to help.
I suffered with severe depression and anxiety before I go IC, so I think the people around me just figure it's really my depression, they don't believe the pain I'm in.
Most days I wake up and wish I didn't.
Will I ever have a boyfriend someone hug me and love me again. Who wants someone that is sick. I don't want to be alone the rest of my life.
And of course my depression is worse than it used to be, who wouldn't be depressed living with this every day.
I understand everything that you talked about please contact me, ANYOBE that wants to talk. About anything we don't have to just talk about IC. Need a friend, lost and alone.

Hugs, Gina


Feb 14, 2016
still tough NEW
by: julie

I went through that period of time, where i got up 12 to 14 times a night to pee... and then i was so tired i could no longer drive to work, then i lost my job. Although it's only about 5 times a night now it is still a struggle, and i agree that most people without IC just don't understand. They think "what's the big deal, you have to pee more?". Some don't even understand that either. I got potty policed at work a couple months ago. I went to the bathroom ten minutes after break... The pain hit all of a sudden and i needed to go. my manager pulled me aside for a short condescending talk about bathroom breaks and I told him about my condition but he displayed very little empathy. I actually pissed blood at work once because i didn't know i had a UTI till it was really far along, i was just so used to the pain. Hang in there people! I've considered suicide before too, the number of times I've looked over bridges i can't even count. I actually started smoking cigarettes in a deal with myself to try drugs before outright killing myself... not a healthy habit in any way (actually not good for the bladder either but every other diet violation feels worse). I guess i am done ranting now... it's good to get it out though

Mar 07, 2016
IC IS THE LAYER BELOW THE 7TH LAYER OF HELL NEW
by: Anonymous

I googled some info on IC and came across these comments.

I was diagnosed with IC almost 14 years ago around the age of 32. It has always been there but became better to where I could live and hold a job for a few years.

I was on disability for it for one year early in my diagnosis. Then my military husband cheated/left me because I couldn't have sex very often. I went back into the workforce the past 10 years and it's been AWFUL.

I have barely bumped along having to use intermittent FMLA like CRAZY because despite living on bland potatoes, I flare up ALL. THE. TIME. Randomly and for no reason. 22 years in my industry and I had a big promotion. After 2 years I had to step down because the stress was killing my bladder. (i.e. constant kidney infections/ER visits)

2 of my best friends of 20 years finally gave up. They got sick of taking me for surgeries, to the Dr's and my having to cancel plans all the time. My family (which was abusive to begin with), made fun of me and wrote me long emails daring me to "end it all." Then my dad died unexpected on my birthday 3 months ago. All the family that was there were the abusive ones and I couldn't travel anyway due to my IC. So, I missed my dad's memorial and have never even seen his burial site.

Even my twin sister decided I just haven't found the right anti-depressant. She's also very religious and thinks I'm not "cures" because I'm not devout enough in my faith.

If this weren't enough, I had to file bankruptcy 3 years ago because the medical bills from all the surgeries, trial treatments and barbaric instillations THAT DID NOT WORK finally did me in. Oh, and before anyone suggests therapy...therapy bills were included in that.

I had faced colossal and I mean COLOSSAL loss at the hands of this disease. This despite keeping a "chin up" positive attitude, believing there has to be a reason I am still here. There has to be a reason for my life. But I'm barely able to work, unable to have sex anymore, or EAT for that matter. I'm underweight because everything flares me up including water!!

I've lost my ability to sit or stand for long periods of time due to extreme vaginal spasms and IC pain. As I type my belly is swollen like I'm pregnant and the pain throbs into my feet.

My Dr is totally supportive and I really need to go back on disability. I don't even have much debt...but still, could never live on $1000.00 per month.

To top it all off I can't even just go homeless and live with no meds...because my thyroid was removed, if I don't take the thyroid meds my Dr said I will die within 2-4 weeks. A slow painful one at that. (not that I'm not already in pain...)

I use intermittent FMLA through work. I haven't worked a full 40 hour week in 1.5 years and am just waiting for them to fire me. My flares often have me bed ridden for 3 days straight. And when I get them, I run a fever, my lymph nodes swell, I get EXHAUSTED where I can barely function, the frequency is INSANE and the pain is...as I have put it to my doctor..."Like living in a torture chamber on a torture rack only I'm not going to die and nobody is going to ever let me out."

OK-Rant over! It feels good to get it out. Right now I see my Dr tomorrow and he wants me on medical leave. But I can't afford to pay my mortgage and bills on the reduced pay. And, I have cut EVERYTHING including...I have NO cable t.v. or ANY extras...and all because this effing disease has taken over my life like THE THING THAT WOULDN'T DIE!!!! ;>

I'm appalled at the lack of pain control for this disease. I feel like we are sacrificial lambs in our times. Maybe the medical community will "get it" in another dimension but for now, in this one, I for one AM SUFFERING.

Not only is my heart broken that my life is RUINED by this disease but I miss the friends/family/life I used to have. I used to be smart, funny, pretty and a go-getter. I felt like a winner. I used to work full time and was a volunteer for pet rescue. Now I can barely get my dog outside to potty and feed her before falling back to bed from exhaustion from trying to work sitting on this BLADDER FROM HELL!!

Now, I'm reduced to a sick, lonely, blubbering, crying WRECK.

THANKS MEDICAL COMMUNITY FOR THE PAIN CONTROL!! I'M ABOUT TO BE HOMELESS AND LOSE MY HOME SOON!!
LIVES ARE BEING RUINED!!! SOMEONE NEEDS TO HELP US!!

Mar 07, 2016
Cont... NEW
by: Anonymous

Sorry for the typos above. I meant to say my twin sister is very religious and thinks I have not been "cured" because I'm not devout enough.

I should have added that my dad was the only person who loved me unconditionally and was supportive. Sadly, he had Parkinson's Disease and had his own major challenges toward the end.

I'm left trying to shove a square peg into a very tiny round hole. I understand why some with this disease never want to wake up.

I pray almost every day this pain will end, someway, somehow...I don't care how, I just want it to stop.

I want my life back. :((((((

Mar 07, 2016
Cont... NEW
by: Anonymous

Sorry for the typos above. I meant to say my twin sister is very religious and thinks I have not been "cured" because I'm not devout enough.

I should have added that my dad was the only person who loved me unconditionally and was supportive. Sadly, he had Parkinson's Disease and had his own major challenges toward the end.

I'm left trying to shove a square peg into a very tiny round hole. I understand why some with this disease never want to wake up.

I pray almost every day this pain will end, someway, somehow...I don't care how, I just want it to stop.

I want my life back. :((((((

Mar 26, 2016
I have severe IC NEW
by: Andrea

I am in the bathroom every 5 minutes at night and it's horrible. I cry every time I go to the bathroom. I can't get anything for my pain or to help me sleep and I can relate to the way people treat you when you haven't had any sleep. My marriage is well not good and I am depressed all the time. I don't enjoy anything anymore. I am a Operation Iraqi Freedom disabled combat war veteran with numerous other health problems that intensify the IC. Everyone gets put on the same meds elmiron, oxybutynine, and the one that turns everything yellow or orange even your contact lenses. I am so sorry to hear about how the disease has treated u.

Sep 21, 2016
Cutting out fluoride allowed me to live with IC! NEW
by: Anonymous

I found that cutting out fluoride allowed me to live almost normally from IC. It took over my life for years but no fluoride plus sticking to the IC diet was huge for me - no more pain - hope it helps someone else too. I was able to get off all meds. I still get up to go to the bathroom alot at night- less than before but I o am working on finding a solution for that.

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In fact, we challenge you to do so! What do you say, are you up for the challenge?


A Note On Visitor-Submitted Questions:

Publishing sleep stories and questions from our visitors is meant to create a forum for open and proactive dialogue about an extremely important portion of our lives (one that occupies 1/3 of it and affects the other 2/3) that isn't talked about enough. It is not meant to substitute a trip to the doctor or the advice of a specialist. It's good to talk; it is not good to avoid consulting someone who's profession it is to help you with this kind of stuff.

If you are in any way concerned about your sleep health, don't wait for an answer on here, and don't necessarily rely on them. See a sleep specialist in your area as soon as possible.

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The Stanford Sleep Book

Stanford Sleep Book Picture

Dr. Dement's pioneering textbook has been the core text for Sleep and Dreams since 1980, but it has just recently been made available to the wider public for the first time.

In it you'll find a more detailed account of the most important things you need to know about sleep, alertness, dreams, and sleep disorders. Studies, statistics, plus plenty of Dr. Dement's classic anecdotes painting the history of sleep medicine.

Preface | Intro | Contents | Get A Copy

More Sleep Resources

The Zeo

A revolution in personal sleep tracking, the Zeo is a wireless headband that transmits your brainwaves in realtime to a dock (pictured here) or your smartphone. The result? You can wake up and see exactly what stages of sleep you were in during the night! Unprecedented personalized sleep knowledge.

Sleep Paralysis: A Dreamer's Guide

Sleep Paralysis Treatment Book

Ever woken up paralyzed? A surprising number of us have, believe it or not. But few know the actual causes of this phenomenon, and fewer still how to exert control over it. Dream researcher and sleep paralysis expert Ryan Hurd shares breakthrough insights into how to do just that.

Important Disclaimer

Please Note:

The information found on this page and throughout this site is intended for general information purposes only. While it may prove useful and empowering, it is NOT intended as a substitute for the expertise and judgments of healthcare practitioners.

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