Re: Fatigue into Insomnia?

[Guest guest]

,

Tim here again. Find a good Liver doctor and a good general doctor first

before you do anything. You can check out the doctors from your closest

transplant hospital and educate yourself to build a good relationship with

the Liver doctor.

If you can talk to them on their level you will receive a lot more response

and information. A good relationship with the doctors is very important, kind

of interview them like a company that you want to work for. If you do not

like them and find them with no " bedside manner " move on to another. I have

only meant 1 doctor that I really did not like and fired him ASAP. I also

moved my transplant wait list from Ohio State Medical to the Cleveland Clinic

because of non

comminution and having Interns work on me instead of the Sr. doctor that I

thought I had.

Now, I too suffered from lack of sleep for 3 years until I found a friend who

recommended a new drug called " Ambien, " It allows you to sleep 7 to 8 hours a

night and wake up with no drugged feeling. The Cleveland Clinic supports long

term use for this drug. It works well for me and other suffers of both PSC

and PCB.

I am 48 and was diagnosed with PSC when I was 28, it was confirm in 1995 by

an ERCP (no such animal in 1980) and a liver biopsy. I was fine until Oct

1997, time ran out for me to lead a normal active life. I have been on

disability from that time forward and life is as normal as can be expected. I

workout, ski and take care of my 11 year old son. I do suffer from fatigue at

times, but there is nothing you can do about it except rest, eat good food

(little fast food) and workout when you feel like it.

Once you have a confirm PSC condition, then it's time to explain to you

employer your case. Understand there are Federal laws that prohibit you

employer from firing you or anything else. If they do try this, you have

every right to sue them.

Hang in there guy, remember I lived a very normal active life for 19 years.

Best

Tim

[Guest guest]

wrote:

> I'm having a hell-of-a-time sleeping... AND it's been getting

> progressivly worse.

,

What you describe is exactly what I was going through a few months ago.

Extremely tired in the evening (and during the day for that matter)

but then toss and turn most of the night. My pattern was that I'd be

very tired early in the evening, but if I stayed up too late, I'd have a

really have a hard time getting to sleep. I'd finally get to sleep

somewhere around 11:00 or 12:00, and then I'd wake up around 1:00 or

2:00 and toss and turn most of the rest of the night. Usually I'd

finally get back to sleep around 4 or 5:00, and then when the alarm went

off at 6:30, I'd feel like it was about two in the morning!

Anyway, my doctor ended up prescribing lactulose for hepatic

encephalopathy, and amazingly enough that seemed to clear up the sleep

problems almost completely. I asked my doctor about it a few weeks ago,

and he said that disturbed sleep/wake cycle is one of the first symptoms

that often shows up with hepatic encephalopathy.

In any case, if I were you I'd ask my doctor about the possibility of

trying lactulose. Based on my experience, there's a good chance it

might help, and if it doesn't you can just stop taking it!

Hope that helps!

athan

[Guest guest]

wrote:

> I'm having a hell-of-a-time sleeping... AND it's been getting

> progressivly worse.

,

What you describe is exactly what I was going through a few months ago.

Extremely tired in the evening (and during the day for that matter)

but then toss and turn most of the night. My pattern was that I'd be

very tired early in the evening, but if I stayed up too late, I'd have a

really have a hard time getting to sleep. I'd finally get to sleep

somewhere around 11:00 or 12:00, and then I'd wake up around 1:00 or

2:00 and toss and turn most of the rest of the night. Usually I'd

finally get back to sleep around 4 or 5:00, and then when the alarm went

off at 6:30, I'd feel like it was about two in the morning!

Anyway, my doctor ended up prescribing lactulose for hepatic

encephalopathy, and amazingly enough that seemed to clear up the sleep

problems almost completely. I asked my doctor about it a few weeks ago,

and he said that disturbed sleep/wake cycle is one of the first symptoms

that often shows up with hepatic encephalopathy.

In any case, if I were you I'd ask my doctor about the possibility of

trying lactulose. Based on my experience, there's a good chance it

might help, and if it doesn't you can just stop taking it!

Hope that helps!

athan

[Guest guest]

wrote:

> I'm having a hell-of-a-time sleeping... AND it's been getting

> progressivly worse.

,

What you describe is exactly what I was going through a few months ago.

Extremely tired in the evening (and during the day for that matter)

but then toss and turn most of the night. My pattern was that I'd be

very tired early in the evening, but if I stayed up too late, I'd have a

really have a hard time getting to sleep. I'd finally get to sleep

somewhere around 11:00 or 12:00, and then I'd wake up around 1:00 or

2:00 and toss and turn most of the rest of the night. Usually I'd

finally get back to sleep around 4 or 5:00, and then when the alarm went

off at 6:30, I'd feel like it was about two in the morning!

Anyway, my doctor ended up prescribing lactulose for hepatic

encephalopathy, and amazingly enough that seemed to clear up the sleep

problems almost completely. I asked my doctor about it a few weeks ago,

and he said that disturbed sleep/wake cycle is one of the first symptoms

that often shows up with hepatic encephalopathy.

In any case, if I were you I'd ask my doctor about the possibility of

trying lactulose. Based on my experience, there's a good chance it

might help, and if it doesn't you can just stop taking it!

Hope that helps!

athan

[Guest guest]

,

So you want a number - how about 1? Seriously, I don't know

where you stand in terms of fibrosis and cirrhosis, which

determine stage of liver damage, but you very likely a one or

two since you were diagnosed recently via blood tests, not

because of symptoms.

Now you are having symptoms. Sleep disorders are among the

earliest signs of encephalopathy. You can take drugs to help you

sleep, but as you said you don't want to be addicted to sleeping

aids. I was prescribed Ambien, which I used on occasion. 5mg

seemed enough for me, the full 10mg tablet affected the next

day.

You are right about the years of not so perfect health that you

have ahead of you. Rather than fixate on that, concentrate on

what you can do, which is plenty. You are bright, motivated and

I bet a hell of a guy to be with. (Aside from that snarly side

There is too much life left to spend it all looking down a

pity hole.

The liver is an amazing organ - capable of regenerating and

working about 10 times as hard as it should. So just having a

small portion working can carry you along for a long time. It is

just our misfortune that sometimes the damage of PSC overtakes

the natural regeneration and the point of total failure comes.

In these fortunate times, that is not a death sentence - liver

transplants make it possible for thousands each year to return

to a healthier life.

Tim ltx 4/4/98

__________________________________________________

[Guest guest]

,

So you want a number - how about 1? Seriously, I don't know

where you stand in terms of fibrosis and cirrhosis, which

determine stage of liver damage, but you very likely a one or

two since you were diagnosed recently via blood tests, not

because of symptoms.

Now you are having symptoms. Sleep disorders are among the

earliest signs of encephalopathy. You can take drugs to help you

sleep, but as you said you don't want to be addicted to sleeping

aids. I was prescribed Ambien, which I used on occasion. 5mg

seemed enough for me, the full 10mg tablet affected the next

day.

You are right about the years of not so perfect health that you

have ahead of you. Rather than fixate on that, concentrate on

what you can do, which is plenty. You are bright, motivated and

I bet a hell of a guy to be with. (Aside from that snarly side

There is too much life left to spend it all looking down a

pity hole.

The liver is an amazing organ - capable of regenerating and

working about 10 times as hard as it should. So just having a

small portion working can carry you along for a long time. It is

just our misfortune that sometimes the damage of PSC overtakes

the natural regeneration and the point of total failure comes.

In these fortunate times, that is not a death sentence - liver

transplants make it possible for thousands each year to return

to a healthier life.

Tim ltx 4/4/98

__________________________________________________

[Guest guest]

,

So you want a number - how about 1? Seriously, I don't know

where you stand in terms of fibrosis and cirrhosis, which

determine stage of liver damage, but you very likely a one or

two since you were diagnosed recently via blood tests, not

because of symptoms.

Now you are having symptoms. Sleep disorders are among the

earliest signs of encephalopathy. You can take drugs to help you

sleep, but as you said you don't want to be addicted to sleeping

aids. I was prescribed Ambien, which I used on occasion. 5mg

seemed enough for me, the full 10mg tablet affected the next

day.

You are right about the years of not so perfect health that you

have ahead of you. Rather than fixate on that, concentrate on

what you can do, which is plenty. You are bright, motivated and

I bet a hell of a guy to be with. (Aside from that snarly side

There is too much life left to spend it all looking down a

pity hole.

The liver is an amazing organ - capable of regenerating and

working about 10 times as hard as it should. So just having a

small portion working can carry you along for a long time. It is

just our misfortune that sometimes the damage of PSC overtakes

the natural regeneration and the point of total failure comes.

In these fortunate times, that is not a death sentence - liver

transplants make it possible for thousands each year to return

to a healthier life.

Tim ltx 4/4/98

__________________________________________________

[Guest guest]

> ,

> So you want a number - how about 1? Seriously, I don't know

> where you stand in terms of fibrosis and cirrhosis, which

> determine stage of liver damage, but you very likely a one or

> two since you were diagnosed recently via blood tests, not

> because of symptoms.

I now I'm like at a 1 or 2 or .5 I just want the test to prove it.

> Now you are having symptoms. Sleep disorders are among the

> earliest signs of encephalopathy. You can take drugs to help you

> sleep, but as you said you don't want to be addicted to sleeping

> aids. I was prescribed Ambien, which I used on occasion. 5mg

> seemed enough for me, the full 10mg tablet affected the next

> day.

Did you take it only when needed?

> You are right about the years of not so perfect health that you

> have ahead of you. Rather than fixate on that, concentrate on

> what you can do, which is plenty. You are bright, motivated and

> I bet a hell of a guy to be with. (Aside from that snarly side

> There is too much life left to spend it all looking down a

> pity hole.

I don't think I'm looking down the pity hole.. I'm just NOT skipping

with glee...

> The liver is an amazing organ - capable of regenerating and

> working about 10 times as hard as it should. So just having a

> small portion working can carry you along for a long time. It is

> just our misfortune that sometimes the damage of PSC overtakes

> the natural regeneration and the point of total failure comes.

> In these fortunate times, that is not a death sentence - liver

> transplants make it possible for thousands each year to return

> to a healthier life.

>

> Tim ltx 4/4/98

I agree... and understand this.. BUT what about the 20-25% who don't

get livers because there's not enough to go around? I know it's not

something to DWELL on but it is a fact eh?

[Guest guest]

> ,

>

> I can completely understand what you are going

> through. I was diagnosed with PSC this past summer,

> and had just told my boyfriend of 4 months that I have

> UC, and then got hit with the PSC diagnosis. I still

> have the husband/children/house/pets ahead of me and

> there are times when I question if I should allow

> myself to be a potential burden on people I love.

That's what my rational is... I 'think' I could be happy without a

wife and kids [although I've always wanted them... kids more than a

wife.. but gotta have both I suppose <grin>]

All I know is that if I choose NOT to then I CAN'T hurt or be a

burden to anyone... If I throw caution to the wind then there's this

big IF and I don't know if it's fair to a wife and kids... I sure as

hell wouldn't want to be on the recieving end...

> You mentioned getting a new MD and I think that is a

> very good idea. Finding someone who is your ally and

> advocate goes a long way to giving you peace of mind.

I'm going to... for SURE.

[Guest guest]

,

I don't blame you for how you are feeling, all of us PSCers and spouses have

probably felt that way and yes, you do have more to be upset about having it

at your age and there are way too many children and young adults putting up

with this in this group. I guess as you experience more symptoms you'll get

angry and then you'll get on with it cause that's the way it is. All we can

do is hope and pray for a cure or something to help us go on. You must be

comfortable with your doctor and treatment to survive this, I agree with

that and he are a few suggestions that may or may not help.

Phil takes melatonin for sleep and takes naps when he needs to. He is also

taking 1800 mg a day of Actigall which has kept him infection free and out

of the hospital since March. He has the luxury of being on disability so

that he can program his day around how he feels. He gets up later, takes a

nap, if necessary and we don't stay out late. We square dance but have had

to cut back on that. I personally take benedryl for sleep, it does make me

a little tired in the morning but at least I sleep through the night (I

don't have PSC but have similar problems sleeping if I don't take the

benedryl. Unfortunately I think everyone suffers the fatigue and there's

not much you can do about it other than come to terms with it and work

around it as best as you can. Also many have the sleep problems. Having

sleep problems myself I understand the frustration of it.

I don't know your religious beliefs, but I do know having a relationship

with God does help. It may not make you better but it helps to give you a

peace and courage to go on. I'm not trying to preach to you, just tell you

what helps us. And yes I know, we have children older than you but Phil and

I just married 3 1/2 years ago and feel like we haven't lived our lives yet.

I don't think anyone just sits back and says " Oh well, I've had a good long

life it doesn't matter " BUT having it at your young age IS THE PITS - I

agree. Wish we could help more, hope that sounding off has helped you get

some of the frustration out - that's what we're here for.

Peg, wife of Phil (57), UC 30 years, dx PSC 12/98, listed-status

3-UCLA-2/2000, living Los Angeles suburbs, CA

[Guest guest]

> I don't know your religious beliefs, but I do know having a

relationship with God does help. It may not make you better but it

helps to give you a peace and courage to go on. I'm not trying to

preach to you, just tell you what helps us.

Thanks for the words. It did help to get it out. And yes.. I do

have pretty strong religious beliefs... I know where I came from, I

know why I'm here... I know where I'm going. Thanks though.

[Guest guest]

> I don't know your religious beliefs, but I do know having a

relationship with God does help. It may not make you better but it

helps to give you a peace and courage to go on. I'm not trying to

preach to you, just tell you what helps us.

Thanks for the words. It did help to get it out. And yes.. I do

have pretty strong religious beliefs... I know where I came from, I

know why I'm here... I know where I'm going. Thanks though.

[Guest guest]

> I don't know your religious beliefs, but I do know having a

relationship with God does help. It may not make you better but it

helps to give you a peace and courage to go on. I'm not trying to

preach to you, just tell you what helps us.

Thanks for the words. It did help to get it out. And yes.. I do

have pretty strong religious beliefs... I know where I came from, I

know why I'm here... I know where I'm going. Thanks though.

[Guest guest]

>The more tired I am during the day the LESS well I sleep at night...

there is an excellent article about fatigue and liver disease at

http://www.liverdisease.com/Fatigue.html

it offers several non-drug strategies you might want to try..

(and that article needs to be linked to from both .com and

pscf.org---along

with about a thousand other articles---WHERE are the people to find and provide

the

addresses???)

DenverD: husband of Mette (44), UC '73, dx PSC 6/2000, alive in Denmark

Latest on Mette is at http://www.terslose.com/mette/MetteNew.html

[Guest guest]

On Fri, 5 Jan 2001 14:14:54 -0800 (PST), Colleen Garvey wrote:

>Life is sweet and I'm not

>about to let a scary diagnosis steal my joy.

RIGHT ON Sister!!

DenverD

" If we are really dying, let us hear the rattle in our throats and feel cold

in the extremities; if we are alive, let us go about our business. "

So said Ralph Waldo Emerson in _Walden_.

[Guest guest]

On Fri, 5 Jan 2001 14:14:54 -0800 (PST), Colleen Garvey wrote:

>Life is sweet and I'm not

>about to let a scary diagnosis steal my joy.

RIGHT ON Sister!!

DenverD

" If we are really dying, let us hear the rattle in our throats and feel cold

in the extremities; if we are alive, let us go about our business. "

So said Ralph Waldo Emerson in _Walden_.

[Guest guest]

(and that article needs to be linked to from both .com and

pscf.org---along with about a thousand other articles---WHERE are the

people to find and provide the addresses???)

I just updated .com with that link. Thanks.

[Guest guest]

(and that article needs to be linked to from both .com and

pscf.org---along with about a thousand other articles---WHERE are the

people to find and provide the addresses???)

I just updated .com with that link. Thanks.

[Guest guest]

(and that article needs to be linked to from both .com and

pscf.org---along with about a thousand other articles---WHERE are the

people to find and provide the addresses???)

I just updated .com with that link. Thanks.

[Guest guest]

> therefore, your boss LOVEs what you do and how you do it..

> tell him about PSC, get him to read the article on Fatigue..

>

> then, tell him you want a raise AND an hour off after lunch AND a

quiet nap room just for

> you..

Well... I'm not ready to become a pity party at work... although many

people already know [due to the days off work I had to take to go to

the hospitol to get gardens hoses crammed down/up/in every orifice in

my body] and someone in my department will know soon enough... I

think I'll wait till I really feel my performace and/or health is

affecting my performance and/or health before I make some demands..

[Guest guest]

> therefore, your boss LOVEs what you do and how you do it..

> tell him about PSC, get him to read the article on Fatigue..

>

> then, tell him you want a raise AND an hour off after lunch AND a

quiet nap room just for

> you..

Well... I'm not ready to become a pity party at work... although many

people already know [due to the days off work I had to take to go to

the hospitol to get gardens hoses crammed down/up/in every orifice in

my body] and someone in my department will know soon enough... I

think I'll wait till I really feel my performace and/or health is

affecting my performance and/or health before I make some demands..

[Guest guest]

,

I tend to agree with you about the pity party. But, making others aware of you situation can have beneficial results. I don't enjoy most of the people I work with - keep to myself & do a great job managing the people who work for me. I kept my husbands condition secret for about 8-9 months and was surprised once the word was out how nice people became.

You'll do what you feel is right till time to explain, but don't read it as pity - they're probably more understanding and compassionate than you credit them.

That's what I found. I don't fill them in on every move (didn't give all details before) and it helped me deal with taking time off for my husband.

You may find allies in the work place if it's for no other reason than they become grateful for their healthiness.

Janet

[Guest guest]

,

I tend to agree with you about the pity party. But, making others aware of you situation can have beneficial results. I don't enjoy most of the people I work with - keep to myself & do a great job managing the people who work for me. I kept my husbands condition secret for about 8-9 months and was surprised once the word was out how nice people became.

You'll do what you feel is right till time to explain, but don't read it as pity - they're probably more understanding and compassionate than you credit them.

That's what I found. I don't fill them in on every move (didn't give all details before) and it helped me deal with taking time off for my husband.

You may find allies in the work place if it's for no other reason than they become grateful for their healthiness.

Janet

[Guest guest]

>I'm not ready to become a pity party at work

hmmmm..

not what I had in mind at all (but, I admit I AM guilty of being a

" wide-eyed-dreamer " at times..

I imagined (with my " minds eye " ) the folks gathering around the coffee

pot and saying: " Damn, that is doing all that good work AND he

has that liver thing--what was it called?...I can't believe how that guy

works...he has really earned my respect and admiration!--when he

gets around to needing a hand I be happy to lend one.. "

NOT: " ..poor , I guess we need to all pretend he is doing a good

job and pulling his weight around here... "

DenverDreamer(?)

[Guest guest]

>I'm not ready to become a pity party at work

hmmmm..

not what I had in mind at all (but, I admit I AM guilty of being a

" wide-eyed-dreamer " at times..

I imagined (with my " minds eye " ) the folks gathering around the coffee

pot and saying: " Damn, that is doing all that good work AND he

has that liver thing--what was it called?...I can't believe how that guy

works...he has really earned my respect and admiration!--when he

gets around to needing a hand I be happy to lend one.. "

NOT: " ..poor , I guess we need to all pretend he is doing a good

job and pulling his weight around here... "

DenverDreamer(?)