is it only me or does everyone  have trouble sleeping,i also sleep with a cpap machine,and still cant sleep,and my doc does not want me to take anything except melatonin ,and stl dont help,the only thing helps is zanax ,and it was only a one time deal any ideas

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  • My team has left my inability to sleep on my shoulders. Really docs? So frustrating. I will stay up for days from these meds which is opposite of my sleep pattern before transplant. I have had to have my wonderful nurse practitioner help me make decisions when none are good ones. Process of elimination of each unfavorable choice. I am now using Ativan mostly, with two or three nights of Indica resin (med Maryjuana). The Indica is annoying at times as I may get much less sleep and be a little foggy amd listless the next day as portioning a dose is difficult. None the less, I get about an hour of rem sleep, about an hour of deep sleep, a few hours of med and light sleep with lots of wake ups. Yes, it is aging me, which makes me sad when I look in the mirror but what to do. I have to exist, right? I keep looking for anything that can overpower the side effects of these meds and have normal sleep. I am a strong woman so I miss all my energy and power. I miss running and getting up early happily looking at a full day. Now, I am tired all the time but top grade vitamins have made a difference in Energy levels as well as outlook. Still miss being like everyone else or should I say, strong 64 year olds. Very interested in anyone have an idea. Natural has not worked whatsoever. Please respond and I will check it out and try it. 🤷🏻‍♀️

  • Hello, everyone

    I had a kidney transplant in 2010. I need your help with insomnia .

    I am battling chronic insomnia, for which I have taken various drug combinations, based on Clonazepam (1 mg) and Mirtazapine (15mg). A third drug has always completed the combination. Olanzapine helped for a while, then it wasn't enough and Imovane (Zopiclone) was added to the three. After a few months, this combination of four drugs wasn't effective anymore (I fell asleep and woke up after 5 or 6 hours of sleep, or I didn't fall asleep until dawn and slept 4 or 5 hours; sometimes i couldn't sleep at all). About a month ago, the doctor replaced the Olanzapine and Imovane with Quetiapine (50 mg). In the first 10 days, I slept about 7-7.5 h a night, but I woke up tired and with tachycardia and heart aches. I told the doctor, but he said these symptoms were not caused by Quetiapine. So I continued to take it along with Mirtazapine (15 mg) and Clonazepam (1 mg), but I started sleeping badly again (too little sleep, tachycardia and heart aches the next day). The doctor told me to increase it to 100 mg, but I'm not feeling well even when I sleep about 7 h a night (worse tachycardia and heart aches). I also noticed I retain fluids, which the doctor says it's not caused by the Quetiapine. 
    I had 2 heart check-ups (ECG and heart ultrasound) and both came out normal. The heart looks fine and functions normally, so I fear the symptoms are caused by the Quetiapine. I asked the doc if he could replace it with something else, but he said it is the best drug for sleep. I went to see another doctor, and she kept the Quetiapine, too, but told me to replace Mirtazapine with Trittico. I tried Trazodone with Clonazepam and Mirtazapine about two years ago and it didn't help me.
    I am desperate and don't know what to do anymore. I tried cognitive behavioral therapy and it didn't help me much. Can you give me any suggestions? Are there better drugs that I could take?
    Thank you so much.


    • I'm so sorry to see this. I feel you. 7 hours sleep, if much rem would be enough but you, like me are not getting much REM. This is the problem and we have to find an answer. Drugs can't be out o lu choice. Be careful getting off these drugs quickly. I hav to ween. It takes about a month to have no symptoms. I pray for us to find answers but I think I will begin to pray for the doctors for answers. 

    • wow this post is over 9 years old. try xanax, have you done a sleep study for apnea. good luck


  • Hi Frank,
    I am 8 months put and I don't think I have had a full nights sleep yet. I was given Xanax and it does help to shut my mind off and fall asleep but I wake up every 2 or 3 hours. At first it was because of the water pills but now it's just because. I had trouble sleeping prior to tx knowing what lie ahead but since tx, it what lies ahead. Does that make sense? I tried everything as well. Yoga breathing helps to calm my body and relax but then the Xanax takes over and I fall asleep. But staying asleep is a problem that I have found no cure for.i think our minds just won't turn off because we don't want to miss anything. We have so much information overload and we are not equipped for this much stress. Coping is the hardest part do tx in my opinion. We physically recover, but emotionally, we are stuck sometimes. I fall asleep better after hubby leaves for work and I have a peaceful home for a few hours...until the phone rings at least. Early mornings are the best time for me to sleep, just when everyone start the day, I go to bed. Like right now I am in bed ready for a boring movie to put me to sleep.
    Will they let you try Xanax?
    Nighty night...
    • You are not alone. Try not to worry about life. I have given up on that and assume, what wil be... will be. But counceling helped everything but sleep. Grrrrr. I do t even believe research is being done about this amd it's hurtful, really. I guess I should research if there is research, or I'm no better. Lol. One day, meds may change or something, anything will change. Until then, understand, this is our life amd we now navigate differently. I have a husband who carries the load so it's easier. I'm sorry for your dilemma...really sorry.

  • My transplant team is really strict on what I'm allowed to take because so much stuff can suppress breathing... But they do approve trazadone in small doses, and that helps me a lot. With all the other meds (steroids, bronchodilators, etc.) and the stress, I wasn't sleeping really at all, which wasn't good either. So in the hospital the last time they gave the trazadone and that really did well for me.
    • I've been having lots of trouble sleeping because of the high dose prednisone they put me on. I'm tapering off it now but still can't sleep. My lung docs told me to talk to my pcp about sleep aids so he can monitor me on them since my lung docs are three hours away. He ended up giving me lunesta. I'm waiting for it in the mail but I'm a lil worried about it suppressing my breathing. Melatonin doesn't work real well for me. Still only getting about 5 hours of sleep a night...
      • I feel your pain... Just finished a taper from a stent in the hospital in July. The docs now want to keep me off the steroids until my surgery... That stuff is the worst! I know some folks in my group at the hospital don't have many side effects, but I always do.
        Like I said trazadone works well for me, and my transplant docs said it was ok for me to use. But it depends on your docs and your program. They manage ALL of my meds and everything now. I live about 2.5 hours... Going to look at apts tomorrow. Have to reallocate ASAP now that I'm listed.
  • After my kidney transplant I had real problems sleeping. I could fall asleep, but around 2 am, like clockwork, I would wake up and be stuck. Now, don't get me wrong. I'm not a pill pusher. I tried all kinds of stuff and did get some help from my accupuncturist (there's a great pressure point between your eyes on the brow - rub it and it helps with sleep), but it wasn't enough. So I ended up on trazadone. I think it was the prograf that was causing my sleep problems. Anyway, after not quite a year, I was in hospital for a while, they didn't order it, and I slept anyway. So I stopped taking it. It did help me sleep and maybe helped me get back into a proper sleep rhythm too. I still occasionally use the acupressure point.

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