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Author Topic: Insomnia Post-Tx, need sleeping pill advice  (Read 23010 times)

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Offline KimInTheForest

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Insomnia Post-Tx, need sleeping pill advice
« on: February 19, 2016, 12:12:40 pm »
Looking for suggestions of what sleeping pill I should be asking for when I see my GP on Monday. What is best for no side effects, no grogginess next day, no addictiveness, etc?

I have been having major insomnia problems beginning with treatment and continuing now 7 months post-tx. I am logging 2-4 hours sleep most nights. This is getting out of hand. I am going to start getting sick. I am way beyond the level that can be helped by chamomile tea or meditation or benedryl or natural supps & sleep aids like melatonin. I am familiar with them all because I have had minor insomnia most of my life (perhaps a consequence of the Hep C). I have gone right off the charts in last week because my elderly mom was taken to hospital Monday (against her will and our will), and is still there as we work out future living arrangements for her.

I have always been totally anti-pill for anything (apart from teenage years when I took the entire pharmacopoeia). So it is an ENORMOUS step for me to book a doctor's appointment to ask for a sleeping pill prescription. It is my hope to just use something for a week or two to re-pattern my body/brain/nervous system, and then do the rest on my own as I always have my whole life.

Thanks for suggestions about which sleeping pill (or anti-anxiety pill maybe?) will cause the least problems.

kim :)

« Last Edit: February 19, 2016, 12:15:28 pm by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline jakas

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #1 on: February 19, 2016, 02:01:41 pm »
What I took on my travel to Asia for 2 or 3 days was NITREST (  marketed under the brand name Ambien within the United States ) was good for me but your doc knows best
M/57 yrs.
Contracted (Unknown) 10-20-30 yrs back ??
Treatment Naive
Geno 1a&1b
VL  17+ million
ALT 200+, AST 170+
Fibroscan F4 ( 26+ kpa ) on 8th Dec. 2105
Started Tx 11th Dec.2015 ( 12 wks. Gilead Harvoni)
7/1/2016 :Viral Load|<25 UND.
23/1/2016: ALT 34 , AST 35, ALP 143
8 week NO labs done
EOT:03.03.2016 ( 84 pills eaten )
ALT 26, ALP 124, BIL .54
V/L <25 UND E.O.T.
4 weeks E.O.T. V/L UND::: SVR 4
SVR 12 and  SVR 24 on 16/8/16
Fibro 24.5kpa 23/05/16
SVR 63 05/17
Fibro 17.03.2020 kpa 6.3

Offline KimInTheForest

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #2 on: February 19, 2016, 02:06:12 pm »
What I took on my travel to Asia for 2 or 3 days was NITREST (  marketed under the brand name Ambien within the United States ) was good for me but your doc knows best

Thanks Jakas! I have heard others mention Ambien with favourable reports.

kim :)
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline lporterrn

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #3 on: February 19, 2016, 03:30:55 pm »
Hi,
Well, I am a bit of an expert on this, mostly because I could have written your post Kim.

Here is what I found - part of the problem with sleep issues is that they get entrenched, so even if the initial problem that caused them is removed, you still have a sleep problem. Fixing the problem involved 3 parts: 1) occasional medication and 2) behavioral therapy and 3) trial/error with a tincture of time.

1) Ambien worked for me. However, Ambien (zolpidem) has to be used cautiously, esp if you are a woman. It is the first drug ever to have a clear warning that women need a lower dose (5 mg). It also has a 2-fold risk of dependence - dependence on the drug itself and dependence on the need to take the drug for sleep. I worked out clear short-term ways to use it to lower my risk of dependence, which leads to part 2. Trazodone is much safer, but I knew ambien worked for me because I took it when travelling. Be aware of ambien's horror stories, none of which have happened to me.

2) Too long to go into, but I had to find the chinks in my sleep habits to help me on the nights I didn't take ambien, and to eventually wean off of it completely. Here is a resource https://sleepfoundation.org/sleep-news/cognitive-behavioral-therapy-insomnia It's much more involved than this. Meditation was critical.

3) It took a long time. Eventually, I got back to my lovely, reliable, unmedicated sleep.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Else

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #4 on: February 19, 2016, 03:47:42 pm »
My two cents on the physical aspect.  I think your nervous system has been hammered.  And your endocrine system.  And your immune system.  I think you may be stuck in a loop of hyper arousal and hyper vigilance and need to break the cycle.

I'm guessing that it's not falling asleep, but staying asleep that's the problem?  I'd make sure and make this distinction to your doctor.  Also, obviously the length of time it's been going on. 

Regarding medications, a short-term of anti-anxiety medication to break the cycle?  Alas, benzodiazepines have a bad reputation, although they are safe and very effective if you're under the care of a competent physician.  I say short-term because they will lead to physical dependence if taken long enough.  That's why many doctors steer clear of them.  But they do have their place if properly prescribed and used. 

I have heard trazodone is helpful for some people.  It's an antidepressant that predates all the SSRI's and SSNI's.  Full disclosure here:  my vet recently gave me a prescription of trazodone for my 13 years old corgi for acute situational anxiety.  I've only had to give it to him a few times but it seems to work well for him - he goes from shivering to very zen-like.  So yeah, corgi-meds.   ::)  But maybe worth running by your doc.



F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline NYCHEPCMAN

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #5 on: February 19, 2016, 04:47:13 pm »
When I first stopped drinking, I was prescribed trazodone to help sleep. It got me through the first few days of mild alcohol withdrawal as it helped me sleep without many sx. Pill is pretty big so I cut it into threes - still big and can get caught in your throat if thats a problem for you.

Since I havent had a drinking in 5 months I sleep like a rock even while on Viekira.

Good luck! 

GT 1b
VL 1,237,287
Diagnosed November 2015
alt 66 ast 35
F2 fibrosure
2/3/16 Started 12 weeks Viekira
Week 4: Hep C virus by PCR   <1.18 NOT detected, <15 not detected IU/Ml AST 18, ALT  25

Offline FutureThinker

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #6 on: February 19, 2016, 05:12:12 pm »
Kim, my GP recommended the supplement Somnelin (sp?) for insomnia post-menopause.  I did not use it, but look into it. FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline FutureThinker

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #7 on: February 19, 2016, 05:18:28 pm »
Kim, just checked and it's spelled somnolin.  FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline FutureThinker

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #8 on: February 19, 2016, 05:38:14 pm »
Kim, sorry I'm providing this info in 3 posts (brain fog continues!!) -- my hepatologist also had recommended several Benydryl at night as a safe insomnia reliever.  FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline beto

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  • "no risk it, no biscuit"
Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #9 on: February 19, 2016, 08:31:00 pm »
With Ambien, less is more most of the time...for me anyway.  I used to rail against ambien.  So here is my own experience.  I initially used it when I traveled only, however, it works so well it is very easy to use when you don't really need it (so caution).  I break up the tablets into crums sometimes and found that a 4th or an 8th worked better than a whole one.  Also, if I am awake in the middle of the night, a tiny piece seems to do the trick.  My personal opinion is that 10mg is over kill for males too.  If you are super hyper and having an "way awake" night, it might seem like it is not working...but then you are suddenly asleep.  I think the horror stories need to be taken with a grain of salt because it is a very effective medication.  That said, I have known of folks that had the issues of sleep walking, having ph conversations and not remembering.  I also know of someone close to me that said terrible things to people without recall.   I have not had any of these experiences personally.  The alcohol mixture with ambien could have been part of these.  10 mg does not seem to be the correct dose for a lot of people from my experience.  2 mg will put me to sleep...that is like a homeopathic amount.  Even less has an effect on me.  Perhaps I am crazy.  Ambien and like sleep meds work so differently than sleep medication of the past.  One thing is for sure, it works.  I will say...it is not that hard to discontinue...at least for me.  All of the other non drug remedies and disciplines should be tried first I guess.  Sometime in life we need the heavy artillery  :)
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline KimInTheForest

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #10 on: February 19, 2016, 11:08:38 pm »
Thanks very much to all of you who have replied. Really helpful info.

My insomnia is a combo of not being able to fall asleep (for hours sometimes) when I go to bed, even though I am literally nodding off in my chair right before I crawl into bed... and then whenever I finally do fall asleep, I wake up a couple hours later.

I was going to try a small amount of good old gravol tonight (dimenhydrinate), just because I have some on hand, and because I know from past experience of using it for motion sickness that it completely knocks me out when I take a whole tab. I was going to take half a tab, which would be 25 mg. Since tomorrow is Saturday, if it leaves me groggy next day, at least I don't have any urgent business it would disrupt.

I may also consider a prescription for Ambien and go with the super tiny amounts people here are recommending. I have a friend who uses Ambien and says the same thing about using tiny amounts of a single pill.

And Else, I totally agree with what you say about the physical aspect involving brain, nervous system, endocrine system, immune system. This is why I am always disinclined to go the pill route on anything. It will likely just mask the underlying imbalance, which will perpetuate the imbalance rather than fix it. And thanks for your DM as well on this. :)
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline KimInTheForest

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #11 on: February 20, 2016, 02:38:20 pm »
UPDATE: I ended up taking 100 mg of dimenhydrinate last night. It worked! I probably got 7 hours of real sleep, broken into 2 parts. And I feel pretty good and clear-headed this morning. It has been months since I have had 7 hours of sleep in a single night.

Dimenhydrinate is branded as Dramamine in US and as Gravol in Canada. It's normally used for nausea and motion-sickness but certainly works as a sleep aid. It comes in 50 mg tablets, and seems to only last 4 hours, which is why I ended up taking 2: the first at 10:45 pm; the second at 4:00 am after being awake in bed for about 30 minutes and it became clear I would not fall back to sleep without it.

I may look into a longer-acting time-release version. And I am definitely going to research to see if there are any problems with ongoing usage. I would like to use it nightly for at least a week to get me through my book launch a week from today in Nanaimo.

Further Update 3 hours later:
A weird, fuzzy brain fog hangover thing has now set in, and I am sure it is a consequence of the dimenhydrinate. So this may not work for me after all as a viable sleep aid...

« Last Edit: February 20, 2016, 03:45:59 pm by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline lporterrn

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #12 on: February 20, 2016, 05:01:19 pm »
That fuzzy-brain should get better, but I am betting that once you break the insomnia habit, you will be sleeping without any assistance.

A general note for those who might not know: be sure to stop using anything with a screen (TV, tablet, computer, phone) for a few hours before bedtime. The blue light interferes with serotonin. There are apps for devices that can filter the blue light.

Kim - I can already see the title of your next book, "Asleep"
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Else

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #13 on: February 20, 2016, 05:05:04 pm »
This is interesting.  Dimenhydrinate is made up of two active ingredients - diphenhydramine (the active ingredient in benedryl) and 8-Chlorotheophylline.  The latter is a stimulant added to counteract the drowsiness of the former.  So I'm surprised benedryl didn't work for you.

As far as the hangover, maybe it would be worth trying just benedryl again.  At least you'd be eliminating one component and if you're fuzzy-headed again the next day, you'd know for sure it was the diphenhydramine.

In any case, hooray for 7 hours of sleep!!!  That's progress.
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline KimInTheForest

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #14 on: February 20, 2016, 05:44:05 pm »
I may try diphenhydramine (Benadryl) again. I tried it during my post-treatment malaise for insomnia, and it had the strange effect of completely blocking my nasal passages - and in a way that felt like tissue swelling, not fluid accumulation. I literally could not breathe through my nose in bed after taking one. But that could have been some weird one-off reaction. I had a lot of weird things going on in my body post-tx. I think I will give it another try.

I did see in the wikipedia entry on diphenhydramine that it is "extensively metabolized by the liver, caution should be exercised when giving the drug to individuals with hepatic impairment." So... not really what us recently cured people want to be doing to our livers...

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Else

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #15 on: February 20, 2016, 06:14:15 pm »
Well damn.   :(  I wish the box mentioned that.  Only listed issues: glaucoma, breathing problems such as emphysema or chronic bronchitis and enlarged prostate.  I think I'm okay on the last one.  ;)

But seriously, about possible liver toxicity.  I lived on benedryl for close to 20 years.  Really bad allergies started out of nowhere in about 1982.  The only things that worked was benedryl or a cortisone-based nose spray.  I figured I was choosing the lesser of two evils.

Then in 2002, they just stopped as abruptly as they'd started.  About one month into Harvoni (2015) they came back (and hey, if that's the trade-off for clearing the virus, I'm FINE with that).  Personally I think there's some connection.  I hate to use  technical jargon... but I think my immune system is weirded out. LOL

But the labs in my sig line, certainly at the 8wk point and onwards, reflect me on benedryl more often than not.  3 or 4 times a week.  Not ideal, that's for sure. 
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline drummerman

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #16 on: February 20, 2016, 06:18:07 pm »
Sorry to hear of your sleep issues Kim.  I went thru the same thing, around 10 weeks post tx.

I tried Ambien and hated it... just made me feel too weird and it was a weird type of sleep.  Only used it 2 or 3 nights and just had to stop.  Weird , trippy stuff.  I did try the small amounts and it was better but still weird.

That being said , everyone is different and it might do the trick for you.  Be careful,  I had a friend that woke up one night and he was cooking an egg on the stove!! Weird.

Fortunately after about a week my insomnia just went away!  Although I still wake up every nite at 3:30, but I blame that on daylight savings time.... i hate it!

Good luck and hopefully it will just go away as it did with me.

dm

« Last Edit: February 20, 2016, 06:20:12 pm by drummerman »
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline lporterrn

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    • LucindaPorterRN
Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #17 on: February 20, 2016, 11:09:21 pm »
This drug is given to people with extensive liver damage - naturally, always ask your doc, but in the spectrum, this one is better than most on the liver
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Lynn K

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #18 on: February 20, 2016, 11:09:59 pm »
The issue related to hepatic impairment is for people who have decompensated cirrhosis and HE  (hepatic encephalopathy) a serious complication of liver failure as any sleep aid can increase the incidence and severity of episodes with HE.

If you don't have decompensated cirrhosis (child "B" or "C") and experiencing HE sleep aids should not be an issue. If you have concerns about sleeping meds and advanced cirrhosis ask your hepatologist.

Best to all
Lynn
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Bree

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #19 on: February 21, 2016, 04:11:50 pm »
I too, have more insomnia issues than usual - comes and gos... Kim, like you I can be asleep in my chair after my "sleeptime extra tea" and then get up go to bed and lay there.. for hours...  I don't even go to bed now before midnight.  I also am taking magnesium before bed which helps.

I take a half or less of ambien occasionally and not more than 2 days in a row.  Occasionally, a half a tranquilizer.  I was meditating and listening to sleep meditations on youtube during treatment.  Guess I'll get back to that quiet the mind stuff.... Good luck with your solutions!
Dx 1997 Geno 1a
2002-2003 PEG Intron/riba (48 wks) respond/relapsed
Pre-Harvoni - Viral Load: 13.5 M - Log 7.1
Fibrosure Score F1-2  Pre-Treatment:  AST 73 / ALT 88

7/6/15 Started Harvoni (12 weeks)
10/5/15 HCV NOT DETECTED (One week post EOT)
11/9/15 NOT DETECTED!!! (6 wk post)
12/21/15 NOT DETECTED (12 wk post) 
3/14/16  NOT DETECTED (24 week post)AST 26 ALT 18
SVR ACHIEVED!!! 
CURED YES!!!

Offline dragonslayer

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #20 on: February 22, 2016, 05:14:13 pm »
Sounds like there's a lot of insomnia in this forum, as there is outside this forum as well. I too have had a serious case of insomnia for a long time. Ive tried pretty much everything over the years, and what I've found works best for me is alternating 3 products so as not to become dependent on any one of them.   I have not found cross tolerance to be an issue with these products.  The 3 products are Ambien of which I take either 5mg to go to sleep, or 2.5mg if waking in the middle of the night; Diphenhydramine which I only take a half dose or 25mg because, while finding it extremely effective, it also often makes the following day a groggy haze (which I usually find preferable to sleeping only 2 or 3 hrs but still not great); and lastly I recently discovered that the over the counter seratonin precursor   known as 5-HTP can be effective and creating drowsiness.... Occasionally Ill stack 2 of these, but I do my best to take a minimalist approach.  I once was prescribed Valium which I would take for sleep every night, but got nastily hooked and had to wean myself off slowly years ago, but I never want to go through that again, so Im very careful and respectful of what I ingest.   

Insomnia just plain sucks.  It definitely tends to diminish quality of life, and I suspect that as we get older, it becomes even a bigger issue.  For me, its really my only impediment to being as totally active as I want to be.. As it is Im pretty active getting to the gym and lifting weights on a rigorous program, but my moods are certainly effected.   I downloaded an Android app to my tablet which I put in bed next to me at night to record my sleep patterns... Its not 100% accurate, but it does a nice job of telling me when Im in deep sleep and for how long.. I Definitely feel better the larger that number is.. Ive found that generally, 4.5 hrs that register as 'deep sleep' is a prerequisite to feeling 'normal' and functional the next day... Ive been doing better with that lately.

Killer for me is if I only sleep a few hours two nights in a row.. That for me creates an 'overtired' situation making it virtually impossible to fall asleep the following night... For that I bring out the big gun which Ive found to work best for me which is the diphenhydramine.  This product has a tendency to build tolerance very quickly, especially in the half dose, 25mg amount I use; quicker than the Ambien... But in these specific situations, its generally the most reliable for a full night sleep.

Insomnia seems to be the bane  of modern existence for a lot of people. Lucinda, I will check out the link you posted after submitting this, but I really think, given the size of the problem, modern medicine needs to come up with a lot more answers for what is surely a serious and wide spread problem.
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline KimInTheForest

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #21 on: February 22, 2016, 08:08:31 pm »
Thanks for the useful suggestions and info, Paul. I like your idea of rotating 3 different sleep aids. I think I will try that. Makes a lot of sense. And I am really interesting in checking out 5-HTP. Was not aware of that before.

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Bree

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #22 on: February 22, 2016, 08:40:44 pm »
Yes, I take 5htp also.
Dx 1997 Geno 1a
2002-2003 PEG Intron/riba (48 wks) respond/relapsed
Pre-Harvoni - Viral Load: 13.5 M - Log 7.1
Fibrosure Score F1-2  Pre-Treatment:  AST 73 / ALT 88

7/6/15 Started Harvoni (12 weeks)
10/5/15 HCV NOT DETECTED (One week post EOT)
11/9/15 NOT DETECTED!!! (6 wk post)
12/21/15 NOT DETECTED (12 wk post) 
3/14/16  NOT DETECTED (24 week post)AST 26 ALT 18
SVR ACHIEVED!!! 
CURED YES!!!

Offline beto

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #23 on: February 22, 2016, 08:42:15 pm »
yes 5htp and Theonine...can both be effective
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline Bree

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #24 on: February 22, 2016, 08:49:22 pm »
yes 5htp and Theonine...can both be effective

Yep, I take theonine too.   I alternate it all the sleep aids intuitively as well.  There'a s product call Theonine Serene I get on Amazon.

For me, I'm not exercising much because of foot injury and I'm noticing that effects sleep as well....
Dx 1997 Geno 1a
2002-2003 PEG Intron/riba (48 wks) respond/relapsed
Pre-Harvoni - Viral Load: 13.5 M - Log 7.1
Fibrosure Score F1-2  Pre-Treatment:  AST 73 / ALT 88

7/6/15 Started Harvoni (12 weeks)
10/5/15 HCV NOT DETECTED (One week post EOT)
11/9/15 NOT DETECTED!!! (6 wk post)
12/21/15 NOT DETECTED (12 wk post) 
3/14/16  NOT DETECTED (24 week post)AST 26 ALT 18
SVR ACHIEVED!!! 
CURED YES!!!

Offline Mugwump

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #25 on: February 25, 2016, 06:13:44 pm »
Listen to Leonard Cohan, beats all the meds available. Just be careful and not listen to the words to the words, to the words, to the words. His poetry can lead to repetitive depression syndrome!
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline KimInTheForest

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #26 on: February 25, 2016, 07:14:37 pm »
Listen to Leonard Cohan, beats all the meds available. Just be careful and not listen to the words to the words, to the words, to the words. His poetry can lead to repetitive depression syndrome!

Haha! So true about Cohen's words being depressive. (Although I do love his songs!)

I have been taking Gravol (dimenhydrinate) for last 6 nights, and it has really helped. I managed to get 5-6 hours sleep each night, whereas before I had fallen down to just 2-4 hours a night. And that was really a trainwreck waiting to happen. Right now my goal is just to get myself through my Saturday book launch in a reasonably well rested fashion.

I was going to ask my doctor for a script to Ambien when I see her tomorrow. But I have read that Ambien was carcinogenic in rats, and that humans on Ambien show higher incidences of certain cancers. :(

I was feeling pretty good about the dimenhydrinate, but then I read that it can cause ototoxicity (irreversible damage to inner ear). :(

I tried Bendryl for one night out of the last 6, and it does not work as well for me as Gravol/dimenhydrinate.

Am going to investigate some of the other things suggested here. I very much like the idea of having multiple sleep aids on hand and rotating them. And of course my real goal is to go back to using NOTHING nightly, and only rarely pulling out a sleep aid if I am getting up super early or have a big day ahead.

Perhaps I should be asking for Xanax, which is both anti-anxiety and sedative, since I think it is really anxiety and stress/tension that is causing my extreme insomnia (what with difficulties and sadness of trying to get our elderly mom a subsidized bed in a residential care facility).

I never thought I'd come to this - a person on sleeping pills. But now I discover that everyone I know is on them too... Crazy world we're living in. I am plotting my return to a saner, simpler life.

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline lporterrn

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #27 on: February 27, 2016, 04:22:32 pm »
My doctor prefers Xanax and trazodone to ambien. I tried both, and in the end, the very occasional low-dose use of ambien works for me when I travel and I wake up alert and happy.

The problem with reading about side effects is that they describe a small part of the population, and in some cases, a person might have had a single incident. Personally, if I was going to be on a drug regularly, it influences my decision-making process much more than taking a drug just once in while. For me, the cancer thing doesn't scare me, but if I needed ambien all the time, than I would look for another solution.

And as I said before, ambien helped me reset my sleeping pattern after treatment. I took it on and off for about a month. My body got used to sleeping, rather than being awake, and  and then I was done. 
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline KimInTheForest

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #28 on: February 27, 2016, 09:02:00 pm »
As it turned out, my doctor wrote me a prescription for Zopiclone, which I believe is a forerunner to Ambien, and does not seem to have the issues Ambien does with strange behaviors while asleep (walking, driving, talking on phone, frying egg...). Of course, I am sure that particular Ambien side effect just affects a tiny percentage of people.

I took half a Zopiclone last night. It worked about the same as the gravol (dimenhydrinate) - didn't knock me out, but I did fall asleep for a few hours. My Dr. thought it was not a good idea to take gravol regularly.

Book launch is now behind me. It went well, and there were LOTS of audience questions, which really pleased me. People want to know about Hepatitis C. In fact, they seemed starved for information.

kim
« Last Edit: February 28, 2016, 12:53:30 pm by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline lporterrn

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #29 on: February 27, 2016, 09:59:39 pm »
Who makes up these names? Good thing it wasn't called Dopiclone
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline KimInTheForest

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #30 on: February 27, 2016, 10:01:57 pm »
Who makes up these names? Good thing it wasn't called Dopiclone

Hahaha! I know, really! It tastes awful (and in a long-lasting way), but at least it sort of works. ;)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Else

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #31 on: February 27, 2016, 10:03:56 pm »
As it turned out, my doctor wrote me a prescription for Zopiclone

Sounds like something that should be having a drink at the bar in Star Wars.
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline lporterrn

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #32 on: February 28, 2016, 11:20:50 am »
 ;D
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Mugwump

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Re: Insomnia Post-Tx, need sleeping pill advice
« Reply #33 on: February 28, 2016, 11:29:47 am »
Sounds like something that should be having a drink at the bar in Star Wars.
Thanks, that finally explains Jar Jar! I reacted to a sleeping med a doc prescribed me back about the time Jar Jar was around and wound up in about the same boat with my speech patterns so you might be onto something here! I had syntax dyslexia on steroids for about a week. NOT FUN
« Last Edit: February 28, 2016, 11:31:33 am by Mugwump »
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

 


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