sleep disorders

[mlzippy7]

Hello all
I was wondering if anyone here has ever gone to a sleep doctor?
My primary doctor set me up to see one. It is hopeless...though because I have to urinate every 15 minutes so I wake up because of pain. Anyway the sleep doctor says I should have my bladder removed!! Is he crazy??? He doesn't understand IC that is for sure.

I would like to hear your stories if you have seen a sleep doctor.

Thanks!!

[Babs RN]

I have not seen a sleep doc, although their greatest area of expertise usually involves sleep apnea and such. They are typically either pulmonologists or specialists in critical care medicine. Just my two cents--what have your uro and primary doc said?

Hugs and best wishes,
Barb:)

[JlGirl76]

Have you tried a medication like Ambien CR which could help you sleep through the ngiht. I take that now...but I have insomnia...I think everything I have is linked to each other. Endo/IC...Insomnia......

[mlzippy7]

I have tried Lunesta and Ambien and I still have to get up to urinate every 15 minutes to urinate.

[JlGirl76]

Oh, I am so sorry to hear that...Lunesta and Ambien are pretty powerful so if you are needing to urinate with them....you probably have a severe case of IC. You poor thing.....I would hope if your Uro tried a different approach to your IC treatment, it may help with your sleep patterns. I don't know if a sleep doctor can help that though. I know they are expensive and I think it's so artificial. I think they put monitors on you and watch your heartbeat, blood pressure ...all that stuff. If it's your bladder...not sure how they can help? Worse case, maybe you can find another Uro that can work on a new treatement plan for you. Perhaps, rescue instillations before bedtime. Or maybe rescue's in the office if you can do that too. It may calm your bladder down...and heatpad so that may help.

I wish you all the best,
Jen

[mlzippy7]

Thanks Jen! My primary dr set up the sleep dr. All my doctors I think are giving up since they can't find anything to help me.
I have several issues but yes my IC is severe. No matter what meds I take I still have to get up to urinate. Pain meds, sleep meds....
I always have a heating pad on. I couldn't go without one.
Thanks again!

[tigger_gal]

have you tried hydroxizine? or rescue instills? a combo of hydroxizine and ambien (correct dose's) may help you. I have taken ambien, 5mg (now cuz I have the kids) they also come in 10m mg and cr. there also is remeron, and dozens of others.
I also take 75 mg of hydroxizine.
do you think your bladder needs taken out? what about your uro?
That is your final step, and it has to be the last. please read the bladder boards fo things that these other gals have tried.

[muxerr012]

MLZIPPY,

I am so sorry to hear of your trouble sleeping and with your IC and everything else! If you will see below my signature I have many of the same issues you are facing.

I too experience NO relief from either Ambrien CR or Lunesta-NONE!! I will give you my 2 cents in the hope that maybe it will help! I have had chronic insomnia for 4 yrs+. I can't lay in bed to sleep for more than 4 hrs. I do not however have to pee every 15 minutes and I simply can't imagine that for you-I'm so sorry. BUT maybe this will help....

I have tried so many meds and so many "ways" to get sleep. Here is what I currently do and it is SO helping me!!

*I sleep on the couch for 1-2 hours around 7 or 8 pm (easy to do since I am so worn out each day from fatigue)!

*I wake and take one Lorazepam (generic for Ativan). Out of all the darn sleeping meds this one helps the most! It's for anxiety but it helps me sleep.

*I take one Xanax about 30 minutes later and go to bed. There I sleep up to 4 hours if I'm lucky. So that way I get 5-6 hrs of sleep a night.

I know it sounds crazy but it is working for me like nothing else has for the past 4 yrs. I recently had a blood test done for a "fatigue panel". The URO mailed a letter to me saying all my blood tests were normal except for this one. He said we would discuss it at my next appt which is Thursday. If I get any answers out of this I will let you know. I hope you feel better and manage to get some sleep even if it is not all at once. It sure makes me feel better the next day!

PS...I see you can't take Elmiron so that means there isn't much that is healing your bladder/urgency. Have you tried any of the natural products to heal your bladder? Many IC'ers swear by the Aloe products, CystoProtek, etc. Are there other things you have tried to cut down on the urgency? Just a thought....My URO told me that if I could not tolerate the Elmiron, he had a "cocktail" of other drugs he could mix for me that would not be as helpful but would help indeed. I start my new Elmiron today, please wish me luck...I'm a little scared of it....