I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: BattleScars on May 29, 2013, 11:45:15 PM
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I have a lot of trouble sleeping lately. Some of it is stress but I think a lot of it has to do with kidney disease. I've read that our meletonin is low. Well tonight is worse than usual. I'll be honest, usually I'm up late at night stressed out about my kidney problems or life in general, just feeling sorry for myself. Tonight I'm worried about my cousin. He's in his late 20's and yesterday found out he has Huntington's Disease. For those of you that don't know what it is, it's pretty awful. The prognosis is very bad. There is no cure. He has a young son. I don't know, for once I am feeling grateful for the health I do have. It kind of puts things in perspective for me. What's crazy is he didn't really know about my dialysis situation since he lives on the west coast and I was trying to be there for him and told him about my situation and how I cope. He wrote me back saying he felt really bad for me. That made me cry. For once someone close to me is worse off than me and he feels bad for me? It's tough because I don't know what to say. His step brother took his life a year ago. His dad died of HD. He seems to be in good spirits and trying to take things one day at a time. Being young and being sick sucks. Well being sick period sucks, but as a young man it makes you question your worth in this world because you are supposed to be the strong healthy one. I want to help him through this. I feel really sad for him tonight. The only good I can take from this is that for now my problems are on the back burner. Just wondering if any of you have faced this and how you handled it. Also any sleeping tips? Trying to stay away from more pills if I can but about ready to take some Tylonal PM
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My sleeping is a bit all over the shop, not just because of dialysis but also because of working strange hours. Having things on your mind doesn't help either. I spoke to my doctor, because i do like my sleep. He prescribed Tamazipam, which i wasn't too keen on to begin with. On Monday nights after dialysis, I take one. I bomb right out, too. I sleep for about 12 hours, which I absolutely love. I get up after lunch, and eventually get really for work that night. Having such a big sleep at the start of the week really helps. Of course by the weekend, I'm pretty wrecked. My advice, use sleeping pills for one night a week, have that big sleep and go from there. Good luck.
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Amazing what life keeps throwing at us isnt it BattleScars :( I was thinking of all the learnings we keep getting through this life and trying to put my mind and heart to ease because of them. Even though what we go through one day seems the worse, it may be preparing us for 'even' worse, or letting us enjoy the lesser worse (hehe) even more. I surely dont know, but i wish you and your cousin some goodness commen your way.
and as for sleep, this "tamazipam' is sounding better and better (isnt that what MM takes too? ) We're going in tomorrow about this very issue to the psyke to see if they're willing to perscribe something to help hubby. He's tried others, but looking for something he can rely on and that i dont fuss about :shy; Im a stickler for staying with what your 'suppose' to take on things such as these, and he's on the "i need to take what *i* need to take to get some sleep, not what everyone else does" I worry so much and this is our biggest issue. SLEEP! Im worried if he falls because of too much pill... ohhhhhhhh lordy, i/we just need sleep too.. :'(
hope you find your answers :)
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Oh Battlescars, I'm not one to compare one malady to another, but Huntington's is one of the worst diseases of all time. There is just nothing you can do about it. I am so sorry that your cousin has such a difficult road ahead of him. Does he already have symptoms? Usually one doesn't start experiencing symptoms until they reach their forties. Or did he have genetic testing done because of his dad's HD?
If your sleep pattern is disrupted for whatever reason, life seems so much bleaker. Sleep deprivation is a widely used interrogation technique. I have taken two different meds for sleep, temazepam and something else whose name I can't remember offhand, but it is the generic of something common. When one stops working, I take the other, although temazepam has been working for me for quite a while now.
Personally, I find that if I engage in physical exercise during the day, I sleep so much better at night. I find some way to get outside. I will work in the garden or go for a walk in one of the numerous parks in the area. However, there are times when exercise, fresh air and my pill aren't enough, and those are the times when I allow my mind to go down dark roads. When I force my thoughts onto more pleasant or frivolous things, I fall asleep much faster. But that's a skill that I've had to practice for quite some time.
I can certainly understand not wanting to add yet one more pill to your repertoire, but of all the pills you take, this one would be one of the most important.
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MM, i 'think' i asked you this already, but, might i ask what dose of tamaz you take? I know each will be prescribed differently, but would just like some info as starting point when he goes in tomorrow. AND.... beings you have been taking for a while now, have you had to up that dose or once you got settled with it you were fine. I would so love this issue to be behind us. It's not healthy to be so scrappy at eachother because he cant sleep and guess what,,, i cant sleep when he's all spazen cause he cant sleep, and i still got all the work the next day :( (uh oh,, sounds like i needed a vent..lol)
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Boswife, you know you can ask me anything, anytime. :cuddle;
I took 15mg nightly for some years, but once I was on prednisone, I was told from the beginning that it might cause me to have trouble sleeping. So as soon as I could, I phoned my regular neph (I hardly ever see my regular PCP!) and asked if he could double the dosage to 30. He did, and that was pretty much that. Actually, I could probably go back down to 15mg since my pred is now down to just 5mg (I had started at 30)...I'd never thought of that. Hmmm...since it is a controlled substance, I have to have the prescription renewed every few months instead of just once a year, so I might ask for a new prescription at just 15mg.
I hope you both can get this sorted out soon.
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Oh Battlescars, I'm not one to compare one malady to another, but Huntington's is one of the worst diseases of all time. There is just nothing you can do about it. I am so sorry that your cousin has such a difficult road ahead of him. Does he already have symptoms? Usually one doesn't start experiencing symptoms until they reach their forties. Or did he have genetic testing done because of his dad's HD?
If your sleep pattern is disrupted for whatever reason, life seems so much bleaker. Sleep deprivation is a widely used interrogation technique. I have taken two different meds for sleep, temazepam and something else whose name I can't remember offhand, but it is the generic of something common. When one stops working, I take the other, although temazepam has been working for me for quite a while now.
Personally, I find that if I engage in physical exercise during the day, I sleep so much better at night. I find some way to get outside. I will work in the garden or go for a walk in one of the numerous parks in the area. However, there are times when exercise, fresh air and my pill aren't enough, and those are the times when I allow my mind to go down dark roads. When I force my thoughts onto more pleasant or frivolous things, I fall asleep much faster. But that's a skill that I've had to practice for quite some time.
I can certainly understand not wanting to add yet one more pill to your repertoire, but of all the pills you take, this one would be one of the most important.
I know he put off getting tested for a long time because he just didn't want to know. His sister has it. Not sure if she has the symptoms yet because she's really messed up her life and is in jail facing an armed robbery charge. I still feel sorry for her, but not the choices she's making. But who am I to judge. She found out when she was 18 I think and got into drugs. He says he already is having tremors. I read the early the onset of symptoms usually the worst it is. My wife had a friend in High School die of the juvenile version of HD. I saw my uncle deteriorate. It was pretty bad.
I appreciate all the sleeping advice. I'm gonna start an exercise regime and see if that helps. I plan on starting this Saturday. I could stand to lose a few lbs anyways.
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Do you play any online games? I've found that games where you need to focus and think, like puzzle games, word games, even card games, will wear the brain out so that the little voice inside your head will shut up and let you sleep. *G*
I have Brain Age for my DS, and it has a virus game on it, similar to Dr. Mario from years ago, where you have to line up the colors of the pills with the viruses to clear the screen. In the intro to how to play the game, it actually says that the game was designed to help you relax. It does work, but I've gotten so good at it, that I can play for hours. *L*