Tofranil working but still not sleeping...

[lauriecircle]

Okay with the Tofrinal, I am not having the horrid side effects I did with the Elavil, THANK GOODNESS! It is helping with the pain and the urgency.... But not with the frequency and not with sleeping. So can you ADD anything to the Tofranil to help with sleep? I am calling Dr. Monday to report in after a week, but I am just curious. Cause my MAIN concern is SLEEP! I have not sleep through the night in over 6 years, in fact I have not had more than 3 hours in a row in over 6 years. I am DEAD TIRED and really, really, really need to sleep!!!!! She is talking interstim if this doesn't work... But I would rather add yet another drug before invasive surgery.... So can one add anything? I know we aren't doctors, but just from experience, what have you done that has worked?

[lisabar36]

Hi, do you take atarax? My IC doc ordered that to help me sleep with the Elavil and the two together worked great. I would of course talk with your doc about it and see if thats an option. I was not sleeping at all in September, I was up all night urinating. I started Elavil and Atarax and they helped me sleep all night. Hope this helps. :)

[leelee88]

That was the onlt down side about switching from Elavil to Tofranal is that the Elavil helped me sleep and the Tofranil kept me awake. The Dr did add Atarax but that still has not helped with my sleep, But hopefully it will with you...

[L. Thomas]

Could it be anxiety?

[hdb1982]

I under went a sleep study and it was determined that I wasn't going into full REM sleep. The reason, who knows? The only thing that helps me really sleep is Ambien, which I cant get untiL I get my ins. next week. They do have a generic now so it is cheaper. While taking Ambien I would still get up as often to go :toilet: but I was never really "awake" when I was getting up and going so I fell right back into deep sleep once I got back to bed. The downside of Ambien with me was if I din't go to bed, for whatever reason, within an hour of taking it I felt drunk, goofy drunk. It kinda freaked me out at first b/c I thought, what if Katie needs to go to the ER or their is an emergency and I can't drive b/c I took this. Then I realized for 1 that my husband is here everynight, 2 all of my family is within a 10 minute drive so if Adam wasn't here I could call one of them for a ride and, 3 thats what ambulances are for. Another con is I would wake up in middle of the night and pig out, and not remember doing it. I would wake up the next day and my kitchen would have food left on the counters and pop cans and candy wrappers would be on my nightstand. IMHO though the good night sleep was so worth it. I cant wait to get back on it. Def. talk to your dr about it. There have been some public deaths associated with Ambien use b/c of it mixing bad with other drugs so make sure your dr is fully aware of all meds you take if you think Ambien could be an option. I even double check with my pharmacist to make sure it doesn't interact with anything else I take. I just make sure it has been atleast 6 hours since my last dose of xanax. I have been told, by my dr and pharmacist, that it is okay to take both but it worries me so I take them seperate. That is just me though. I tried every other sleep med. Rozerm Lunesta you name it I tried it. RX and OTC. I didn't do as well with Ambien CR as I do with regular Ambien 10mg.
I know I probably could have just said Ambien 10mg helped me but I wanted you to know the ups and downs I experience with it. As always, we are each different and respond differently, not only to meds but to everything it seems.
Some people Ambien doesn't help. Just talk to your dr and research it and make the decision you feel will benefit you most.
To sum it up, Ambien doesn't help with urgency or frequency. It helps me because I get into such a deep sleep, not so deep I pee the bed lol, that even after I get up to pee I can go right back to sleep even if I get up 12 times per night, which I don't maybe 3-6 times at most. I feel so much better with 5 hours of Ambien sleep then I do with 10 hours of non Ambien sleep. As long as I sleep for 6 hours after taking the Ambien I am wide awake as soon as I wake up. I don't experience any of the next day drowsiness associated with most sleep aids. I hope this helped, sorry it was so long. My posts seem to be long lately. I guess I missed you all so much, when I was working 10-14 hour days,I just can't quit gabbing. Or maybe I am just:loco:~ Heather

[snowgirl]

I took regular ambien for years then it quits working and you wake up and can't gt bck to sleep. Pain md told me that. I switched to ambien CR. I would alway put it on my bedside stand and take it rigth while I was in bed. Well, since I live alone my family was concerned for my safety as I was. There are some of us on these same board that have had some ambien safety stories.
For my own safety I do not take ambien CR or ambien anyhting. Either way my insurance won't pay for it. anymore even with an MD.There new policy is effective June 2008 and ony 10 pill is a 31 day period. I would email people and not remember doing that. I ordered purchasese off the internet atleat I did not order some big cruise trip like one lady did. I NEVER drove thank the Lord for that one. My therapist had client drive and hit a pole. SO, while ambien is a great drug for some people for me it was a safety issue. Vicky

[muxerr012]

Lauriecircle,

I can so relate to your problem! I have had CFS and chronic insomnia for 4 yrs. I went weeks at a time without sleeping more than an hour at a time. It is the most debilitating illness I have ever had because you simply can not function without sleep! And your sleep cycle will not get the REM sleep you require for your body to be restored if you only get 3 hrs here and there. I am not on any pain meds other than Lyrica which is not a pain med perse, so I'm not sure what you are taking. Here is what is working for me now, so maybe you can ask your doctor if this would work for you considering all other meds you are taking.

I take one Vistaril antihistimine at night (makes you pretty drowsy), one Lorazepam and one Xanax. This is the ONLY thing that allows me to get 5 hrs of straight sleep a night. I've been lucky and actually had 6 hrs a night every now and then, so this plan is working for me.

I limit ALL forms of excitement beginning no later than 8pm. No phone calls, no physical activities; just quiet time reading, sewing or watching TV. Keep the lights low, as this tells the brain to get ready for sleep. This life style has changed everything and limits my social life. But you have to sacrifice if you want to sleep. Once you get a sleep rhythm back, you may be able to get away with going out later every now and then. This is what works for me and I hope it's something your doctor can really help you with! Have you had a fatigue panel blood test done? I did recently and the results showed active Epstein-Barr virus/CFS. I don't know yet what if anything can be done to treat this because I have some other health concerns to take care of right now. But you can be sure I WILL ask my doctor what can be done. I'll share anything promising when/if I find out.

[lauriecircle]

L. Thomas, No it's my bladder!
Truly I only wake to pee, I lay there WISHING I didn't have to pee or I just get up and get it over with... I will talk to Dr. about adding on another med.
But yes, I have a 4 year old and DH does sports late night while I am sleeping, so I don't want to be so out that I wouldn't wake for an emergency and be fully functioning, so Ambien is out...

[muxerr012]

It is my bladder that wakes me also. You need to calm the bladder at night. Vistaril helps with this (for me). I CAN and do wake at the drop of a pin with the meds I am taking. Ambien and Lunesta are both out of the question for me also. Doesn't work for me anyway. I've tried them both.

[lisabar36]

Hi, I only would wake to urinate also, and then would have a hard time falling back to sleep, when I took the meds I didn't get sleepy, but once I fell asleep at night I did not wake up to urinate anymore. I could finally sleep all night without waking to pee all the time. Also I am very sensitive to meds, Atarax never made me feel loopy in the morning, but I started a low dose and worked up to 25 mg.

[Bea]

I am on imipramine too... I don't sleep at all, but I know it isn't from that.. I haven't had a good nights sleep in years. I am always tired, and feel like crap 24 7... I don't want to do sleeping pills, and I am not sure what I can do to help it.. I feel your pain hon... I am curious about the atarax though

[muxerr012]

Bea,

Isn't it amazing how SO many of us IC'ers can NOT sleep. I am convinced that there is more going on than just having to use the bathroom!!! So many of us have other autoimmune disorders like fibromyalgia, IBS, gastro problems, insomnia, CFS, the list is endless!! I firmly believe the medical community is getting very close to finding out that all these disorders are actually ONE disease. This is causing so many health problems and one of the biggest issues is lack of sleep! How can we work, care for our children, do chores and all the other things we have going on in our day to day lives if we can not get a good nights rest?!!!!

I have not slept more that 5-6 hours in over 4 yrs!!! BUT what helps me now is Vistaril (just like Atarax) 50 mgs once at night, Ativan for anxiety once at night and one Xanax at night. It may sound crazy but I swear this is the only thing that helps me sleep at night. Just wanted you to know some of the options out there. I send prayers for ALL of us that we are FINALLY able to sleep!!!! Uh, I mean for like MORE than 2-4 hours a night!!! :pray:

[Berkshire Road]

Laurie, OF COURSE you have to talk to your dr., but atarax/vistaril is an anti-histamine, a pretty benign drug, and it seems like a lot of people are taking it in combination with a lot of other meds. So, have hope. My doctor says it is supposed to help you sleep and also cut down on the need to pee at night, so you wake less often. I do sleep much better now, and I was like you, I was practically insane from not sleeping.

Good luck, keep us posted!

[muxerr012]

Lauriecircle, and Bea,

I also wanted to share this info with you. I called my URO's office yesterday to make an appt for Monday because I'm sure I have a UTI infection from a recent surgery I had. The URO Staff told me that March and August are the worst and the busiet months for IC patients because they are the worst months for allergies. This is just one more fact that tells me how important allergies play a role in our IC and our symptoms of frequency and urgency.

If you are not already taking some type of antihistimine, I would ask your IC doctor about what he or she thinks about it, and if it would benefit you. I hope you are sleeping better!! Best wishes,