Re: Insomnia

[Guest guest]

Hello Bob,

I don't really have advice to give about the meds but I can offer you some good sleep advice. I take a herbal supplement when I can't sleep. I either take Kava Kava or Valerian Root. I have had the most success with 2 pills of Kava Kava an hour before bedtime. And in the morning I don't feel all doped up. Also, some good Camomile (spelling?) Tea doesn't hurt either. I hope this helps.

Sincerely,

"Blessed are we who can laugh at ourselves for we shall never cease to be amused."

[Guest guest]

Bob,

The only drugs we have in common are the norvasc and forusemide and I also only sleep a few hours a night. I thought it was prednisone but who knows? My neph gave me ambien which helps to fall asleep but doesn't keep me asleep. So if you find a solution please pass it on.

Kirk

Insomnia

For the past week I've been having a hard time getting to sleep at night. Where I go to bed at 10:00p.m and lay there till 3:00am before I finally get to sleep. Then I have a hard time getting up to go to work and I'm starting to wear down. The medications I'm on are Norvasc,furosemide,labetalol,zaroxylin,Cozaar,Rocaltrol and Zocor. Could this combination be a cause? What other things can cause it and how do I get through it?Bob

[Guest guest]

I think it's pretty tough to figure out what is causing insomnia, especially when you have a disease like this AND you've had to start a whole bunch of medications -- makes it almost impossible to tell what is causing what. It certainly could be one or more of the meds, or could be other things. From cases like this that I've heard about before, my impression is that most times the solution is, unfortunately, another medication to help with the sleep - if nothing else works. Might be worth trying the things suggested. Not that I have any problems sleeping, but I have tried chamomile tea at different times (careful if you have pollen allergies though).

Pierre

Insomnia

For the past week I've been having a hard time getting to sleep at night. Where I go to bed at 10:00p.m and lay there till 3:00am before I finally get to sleep. Then I have a hard time getting up to go to work and I'm starting to wear down. The medications I'm on are Norvasc,furosemide,labetalol,zaroxylin,Cozaar,Rocaltrol and Zocor. Could this combination be a cause? What other things can cause it and how do I get through it?Bob

[Guest guest]

Hi Bob:

I too have had bouts of insomnia since being diagnosed. I tried the Kava Kava but it didn't do much for me. With everything that is going on, I think it's tough to pin-point a cause. The only thing that helped for me was a sleep relaxation tape designed to help insomniacs. You can often times find these at the community health library of your local hospital (especially if they happen to have a sleep clinic).

Good Luck,

Joe

Insomnia

For the past week I've been having a hard time getting to sleep at night. Where I go to bed at 10:00p.m and lay there till 3:00am before I finally get to sleep. Then I have a hard time getting up to go to work and I'm starting to wear down. The medications I'm on are Norvasc,furosemide,labetalol,zaroxylin,Cozaar,Rocaltrol and Zocor. Could this combination be a cause? What other things can cause it and how do I get through it?Bob

[Guest guest]

Same here, except in reverse. Wife does that to me. Once I'm awakened at

night, that's it. May as well just settle down and watch some movies.

Pierre

Re: Insomnia

> I'm not on dialysis, but I often fall asleep on the couch at about 1900,

> then my husband wakes me up about 2200 to go to bed and I can't sleep once

I

> get there and I can't stay awake on the couch.

>

>

[Guest guest]

Well, you can add insomnia to J's list as well. We

talked about it briefly and I thought it would get

better but it's getting worse. I went to bed last

night late-ish but not crazy-late. About 1/2 hour ago,

(7:00 a.m. our time) I realized I was doing that

light-sleeping thing you do when you're dozing,

waiting for something. I looked beside me, he hadn't

come to bed at all. This time I found him in the

living room reading a novel. Trying to be there for

him when he's awake is resulting in nights when I

don't get to bed before 2:00 am, when I do finaly get

to sleep it isn't a really restful sleep because I'm

partly tuned in to what's happening with him and I'm

getting more and more tired during the day.

It's been only 4 days since we got the news of his IgA

recurrence but he's definitely sliding down some kind

of slope toward despair. I have a feeling he's going

to give up on things before he starts to climb out of

it. I'm sorry to say, volunteer work is out of the

question. His mother had him doing some volunteer work

when he was a child and as an adult he is always there

for family and friends, (sometimes too much so) but he

is one of those people who just don't engage with

humanity on the abstract level. He wants his schedule

to be free for work and even when he accompanied me to

a volunteer session for the international film

festival his interest passed quickly and he decided

not to bother with it.

I need my sleep as well. If our entire economic future

is going to rest on my shoulders then I need sleep

more now than ever. I know this is harder for him than

it is for me but he seems to be giving up. Every day

is focused on his physical comfort and not much else.

I wanted to give him time to be upset, to grieve over

all of this but I thought that at the same time we'd

try to maintain the healthy habits that have become

part of our lives. He's thrown everything aside.

Yesterday, for the first time in months, he used salt

on his food. He's sleeping all day, every day and gets

quite indignant if I wake him up (even for meds). When

I asked him to come to bed this morning he did but

when I suggested we talk about this he became quite

sarcastic, nasty and bitter -- saying things like, " oh

yeah, this was worth coming to bed for. I'm so glad I

didn't stay up any later... " As if reminding him to

come to bed was something I was doing entirely for me.

I know what was saying about ownership of the

disease is probably true to an extent but I have to

know about this stuff because I have to live with it.

Aside from any love or loyalty I might have to J., I

live with this too. IgA has changed my diet, my social

life, my career path and my relationship and I can't

just walk away. Is it too much to ask that I get his

cooperation in coping with this thing? At the moment I

feel like I'm trying to keep my end up and instead of

anyone else around me doing the same most of them are

just wringing their hands and expecting the worst and

J. personally is making the decision to live in a

combination of denial and self-pity.

For J. IgA is a huge thing. The way he see's it, it's

ruined his life before and now it looks like it might

have the chance to ruin it again. It took competitive

sports away from him when he was a kid, stunted his

growth, altered his appearance and (with dialysis)

made him feel like a boy in the desert surrounded by

people living on an oasis, constantly thirsty.

I'm damned if I'm going to let it have our life

together as well as everything else but he seems to be

inclined towards giving up and giving in.

How long should I let things go before I stop trying

to be patient and start trying to get him to wake up

to life again? I admit, three days, my original

time-frame, seems kind of short, but time is precious.

We waited so long for a diagnosis, I want to get on

with living our lives.

I'm grumpy because I'm angry with God and I haven't

had a decent night's sleep in the last two weeks,

(when his kidney started to swell and we were still

waiting on biopsy results).

It's hard to be the family of an IgA patient because

you suffer with all the emotional stuff but there's

never a moment when it's ok to screw up or really lose

it, after all -- this isn't " my disease " it's his.

People think I can just walk away from it but that's

not true. There's guilt and sorrow, shock, fear, anger

determination and gratitude that he's here at all, all

mixed together with this overwhelming sense of

responsibility. The fact is, I have to do the right

thing because I'm closest and strongest. My faith has

to be unshakeable, even though he would deny it I know

he relies on that.

But I get tired too and right now I'd like to be the

girl in the couple again (in the sexist, stereotypical

sense of the word) and just let this weight slide off

my shoulders.

It isn't going to happen. Any rewards that come from

my actions in this will go to his physical well being

and chances are they won't be enough to make any

difference at all. I find it satisfying to know we've

managed to figure out ways to beat the transmission of

viruses most of the time partly because it's an area

where I can actually see some tangible results. I'm

not complaining (ok, maybe I am complaining but I

don't expect a solution) I'm just realizing that

emotionally, IgA doesn't give days off. And at the

moment, it's wearing me out. He's asleep now but I'm

awake and exhausted and only beginning the day. I'll

go and pick up his prescriptions, fight with him about

getting up to take them on time, worry over every

little twinge, serve him his meals and try to get my

own work done. Once he's up he'll wonder why I'm not

more playful, more lively. He'll complain about how

crabby I'm getting. I'll try to be better, we'll watch

a movie and I'll fall asleep on the couch and the

whole thing will begin all over again.

My efforts ae like water on a stone and after a shock

like this they aren't even that. All the good habits

we've built up, all the movements we've made toward a

happy life together seem to have been reversed by this

diagnosis. Nothing I do or say makes any difference at

all. I don't want to turn into his live-in nurse. How

do you ever work this stuff out?

Sorry to be such a pill.

_______________________________________________________

[Guest guest]

My God, . I think that J will realize (or he already does,

but is so mired in his depression that he is is not thinking

properly) how very lucky he is. Your letters hit home with me

because my son, 17, has IgA and I worry about his future. Will he be

able to live a normal life? Will he be able to constantly live on a

roller coaster of ups and downs, and rebound and go on time after

time? I pray he will. As for yourself, dear, it seems you have

given all you can give. There may come a point where you will have

to think of yourself first and act accordingly. Pam

>

> Well, you can add insomnia to J's list as well. We

> talked about it briefly and I thought it would get

> better but it's getting worse. I went to bed last

> night late-ish but not crazy-late. About 1/2 hour ago,

> (7:00 a.m. our time) I realized I was doing that

> light-sleeping thing you do when you're dozing,

> waiting for something. I looked beside me, he hadn't

> come to bed at all. This time I found him in the

> living room reading a novel. Trying to be there for

> him when he's awake is resulting in nights when I

> don't get to bed before 2:00 am, when I do finaly get

> to sleep it isn't a really restful sleep because I'm

> partly tuned in to what's happening with him and I'm

> getting more and more tired during the day.

>

> It's been only 4 days since we got the news of his IgA

> recurrence but he's definitely sliding down some kind

> of slope toward despair. I have a feeling he's going

> to give up on things before he starts to climb out of

> it. I'm sorry to say, volunteer work is out of the

> question. His mother had him doing some volunteer work

> when he was a child and as an he is always there

> for family and friends, (sometimes too much so) but he

> is one of those people who just don't engage with

> humanity on the abstract level. He wants his schedule

> to be free for work and even when he accompanied me to

> a volunteer session for the international film

> festival his interest passed quickly and he decided

> not to bother with it.

>

> I need my sleep as well. If our entire economic future

> is going to rest on my shoulders then I need sleep

> more now than ever. I know this is harder for him than

> it is for me but he seems to be giving up. Every day

> is focused on his physical comfort and not much else.

> I wanted to give him time to be upset, to grieve over

> all of this but I thought that at the same time we'd

> try to maintain the healthy habits that have become

> part of our lives. He's thrown everything aside.

> Yesterday, for the first time in months, he used salt

> on his food. He's sleeping all day, every day and gets

> quite indignant if I wake him up (even for meds). When

> I asked him to come to bed this morning he did but

> when I suggested we talk about this he became quite

> sarcastic, and bitter -- saying things like, " oh

> yeah, this was worth coming to bed for. I'm so glad I

> didn't stay up any later... " As if reminding him to

> come to bed was something I was doing entirely for me.

>

> I know what was saying about ownership of the

> disease is probably true to an extent but I have to

> know about this stuff because I have to live with it.

> Aside from any love or loyalty I might have to J., I

> live with this too. IgA has changed my diet, my social

> life, my career path and my relationship and I can't

> just walk away. Is it too much to ask that I get his

> cooperation in coping with this thing? At the moment I

> feel like I'm trying to keep my end up and instead of

> anyone else around me doing the same most of them are

> just wringing their hands and expecting the worst and

> J. personally is making the decision to live in a

> combination of denial and self-pity.

> For J. IgA is a huge thing. The way he see's it, it's

> ruined his life before and now it looks like it might

> have the chance to ruin it again. It took competitive

> sports away from him when he was a kid, stunted his

> growth, altered his appearance and (with dialysis)

> made him feel like a boy in the desert surrounded by

> people living on an oasis, constantly thirsty.

> I'm damned if I'm going to let it have our life

> together as well as everything else but he seems to be

> inclined towards giving up and giving in.

>

> How long should I let things go before I stop trying

> to be patient and start trying to get him to wake up

> to life again? I admit, three days, my original

> time-frame, seems kind of short, but time is precious.

> We waited so long for a diagnosis, I want to get on

> with living our lives.

>

> I'm grumpy because I'm angry with God and I haven't

> had a decent night's sleep in the last two weeks,

> (when his kidney started to swell and we were still

> waiting on biopsy results).

> It's hard to be the family of an IgA patient because

> you suffer with all the emotional stuff but there's

> never a moment when it's ok to screw up or really lose

> it, after all -- this isn't " my disease " it's his.

> People think I can just walk away from it but that's

> not true. There's guilt and sorrow, shock, fear, anger

> determination and gratitude that he's here at all, all

> mixed together with this overwhelming sense of

> responsibility. The fact is, I have to do the right

> thing because I'm closest and strongest. My faith has

> to be unshakeable, even though he would deny it I know

> he relies on that.

> But I get tired too and right now I'd like to be the

> in the couple again (in the ist, stereotypical

> sense of the word) and just let this weight slide off

> my shoulders.

> It isn't going to happen. Any rewards that come from

> my actions in this will go to his physical well being

> and chances are they won't be enough to make any

> difference at all. I find it satisfying to know we've

> managed to figure out ways to beat the transmission of

> viruses most of the time partly because it's an area

> where I can actually see some tangible results. I'm

> not complaining (ok, maybe I am complaining but I

> don't expect a solution) I'm just realizing that

> emotionally, IgA doesn't give days off. And at the

> moment, it's wearing me out. He's asleep now but I'm

> awake and exhausted and only beginning the day. I'll

> go and pick up his prescriptions, fight with him about

> getting up to take them on time, worry over every

> little twinge, serve him his meals and try to get my

> own work done. Once he's up he'll wonder why I'm not

> more playful, more lively. He'll complain about how

> crabby I'm getting. I'll try to be better, we'll watch

> a movie and I'll fall asleep on the couch and the

> whole thing will begin all over again.

> My efforts ae like water on a stone and after a shock

> like this they aren't even that. All the good habits

> we've built up, all the movements we've made toward a

> happy life together seem to have been reversed by this

> diagnosis. Nothing I do or say makes any difference at

> all. I don't want to turn into his live-in nurse. How

> do you ever work this stuff out?

> Sorry to be such a pill.

>

> _______________________________________________________

>

[Guest guest]

,

You're in a really tough situation. I would imagine that losing a transplanted kidney would be even more difficult than losing the originals. My wife resents me sometimes for having this disease. She tells me she could have had a much better life without me. She feels more pressure because she may have to be the sole source of financial income some day. I don't think I take my kidney failure and dialysis nearly as badly as J is. But it is still difficult on the loved ones. Most of the time, she does fine but occasionally she'll flare up. I try to handle things in a mature, positive manner so she doesn't think she has four children to take care of instead of three (actually, we both take care of them). I cook dinner, wash clothes, take care of business, in addition to working and spending 12 hours a week on a machine. I try not to feel sorry for myself, though sometimes it is inevitable. I'm sorry I don't have any good advice for you. You're not being a pill. I think that using this web-group is really helping you to keep yourself together and that's great.

Marty

Re: Insomnia

Well, you can add insomnia to J's list as well. Wetalked about it briefly and I thought it would getbetter but it's getting worse. I went to bed lastnight late-ish but not crazy-late. About 1/2 hour ago,(7:00 a.m. our time) I realized I was doing thatlight-sleeping thing you do when you're dozing,waiting for something. I looked beside me, he hadn'tcome to bed at all. This time I found him in theliving room reading a novel. Trying to be there forhim when he's awake is resulting in nights when Idon't get to bed before 2:00 am, when I do finaly getto sleep it isn't a really restful sleep because I'mpartly tuned in to what's happening with him and I'mgetting more and more tired during the day. It's been only 4 days since we got the news of his IgArecurrence but he's definitely sliding down some kindof slope toward despair. I have a feeling he's goingto give up on things before he starts to climb out ofit. I'm sorry to say, volunteer work is out of thequestion. His mother had him doing some volunteer workwhen he was a child and as an adult he is always therefor family and friends, (sometimes too much so) but heis one of those people who just don't engage withhumanity on the abstract level. He wants his scheduleto be free for work and even when he accompanied me toa volunteer session for the international filmfestival his interest passed quickly and he decidednot to bother with it.I need my sleep as well. If our entire economic futureis going to rest on my shoulders then I need sleepmore now than ever. I know this is harder for him thanit is for me but he seems to be giving up. Every dayis focused on his physical comfort and not much else.I wanted to give him time to be upset, to grieve overall of this but I thought that at the same time we'dtry to maintain the healthy habits that have becomepart of our lives. He's thrown everything aside.Yesterday, for the first time in months, he used salton his food. He's sleeping all day, every day and getsquite indignant if I wake him up (even for meds). WhenI asked him to come to bed this morning he did butwhen I suggested we talk about this he became quitesarcastic, nasty and bitter -- saying things like, "ohyeah, this was worth coming to bed for. I'm so glad Ididn't stay up any later..." As if reminding him tocome to bed was something I was doing entirely for me.I know what was saying about ownership of thedisease is probably true to an extent but I have toknow about this stuff because I have to live with it.Aside from any love or loyalty I might have to J., Ilive with this too. IgA has changed my diet, my sociallife, my career path and my relationship and I can'tjust walk away. Is it too much to ask that I get hiscooperation in coping with this thing? At the moment Ifeel like I'm trying to keep my end up and instead ofanyone else around me doing the same most of them arejust wringing their hands and expecting the worst andJ. personally is making the decision to live in acombination of denial and self-pity. For J. IgA is a huge thing. The way he see's it, it'sruined his life before and now it looks like it mighthave the chance to ruin it again. It took competitivesports away from him when he was a kid, stunted hisgrowth, altered his appearance and (with dialysis)made him feel like a boy in the desert surrounded bypeople living on an oasis, constantly thirsty.I'm damned if I'm going to let it have our lifetogether as well as everything else but he seems to beinclined towards giving up and giving in.How long should I let things go before I stop tryingto be patient and start trying to get him to wake upto life again? I admit, three days, my originaltime-frame, seems kind of short, but time is precious.We waited so long for a diagnosis, I want to get onwith living our lives. I'm grumpy because I'm angry with God and I haven'thad a decent night's sleep in the last two weeks,(when his kidney started to swell and we were stillwaiting on biopsy results). It's hard to be the family of an IgA patient becauseyou suffer with all the emotional stuff but there'snever a moment when it's ok to screw up or really loseit, after all -- this isn't "my disease" it's his.People think I can just walk away from it but that'snot true. There's guilt and sorrow, shock, fear, angerdetermination and gratitude that he's here at all, allmixed together with this overwhelming sense ofresponsibility. The fact is, I have to do the rightthing because I'm closest and strongest. My faith hasto be unshakeable, even though he would deny it I knowhe relies on that. But I get tired too and right now I'd like to be thegirl in the couple again (in the sexist, stereotypicalsense of the word) and just let this weight slide offmy shoulders. It isn't going to happen. Any rewards that come frommy actions in this will go to his physical well beingand chances are they won't be enough to make anydifference at all. I find it satisfying to know we'vemanaged to figure out ways to beat the transmission ofviruses most of the time partly because it's an areawhere I can actually see some tangible results. I'mnot complaining (ok, maybe I am complaining but Idon't expect a solution) I'm just realizing thatemotionally, IgA doesn't give days off. And at themoment, it's wearing me out. He's asleep now but I'mawake and exhausted and only beginning the day. I'llgo and pick up his prescriptions, fight with him aboutgetting up to take them on time, worry over everylittle twinge, serve him his meals and try to get myown work done. Once he's up he'll wonder why I'm notmore playful, more lively. He'll complain about howcrabby I'm getting. I'll try to be better, we'll watcha movie and I'll fall asleep on the couch and thewhole thing will begin all over again. My efforts ae like water on a stone and after a shocklike this they aren't even that. All the good habitswe've built up, all the movements we've made toward ahappy life together seem to have been reversed by thisdiagnosis. Nothing I do or say makes any difference atall. I don't want to turn into his live-in nurse. Howdo you ever work this stuff out?Sorry to be such a pill. _______________________________________________________

[Guest guest]

Hi , it sounds a bit like your relationship is a bit too intense at

the moment and you both need to back off a bit! First and most importantly

look after yourself FIRST. If something was to happen to you J would be

without you, and how would that make you feel? (and besides that who would

take care of you) Try going for a swim or a game of squash or some other

kind of activity on the way home, something that is just for you alone. As

well as being time it will halp you to make the break between one

life and the other. And you never know, you might make him jealous and he

might make the extra effort.

_________________________________________________________________

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