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Author Topic: Sleep issues on Harvoni  (Read 21635 times)

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Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Sleep issues on Harvoni
« on: August 09, 2015, 10:55:34 pm »
How are You guys dealing with insomnia/lack of sleep? twenty five days into twelve week rx of Harvoni. Three or four hours a night max, except for two or three nites. Before Harvoni  five or six hours a nite.
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline KimInTheForest

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  • Believe in yourself
Re: Sleep issues on Harvoni
« Reply #1 on: August 09, 2015, 10:58:29 pm »
When are you taking your Harvoni? Mornings or evenings? If evenings, try shifting your time to mornings.

good luck!
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 slats1056

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  • Posts: 765
  • SVR to all and to all a good life!
Re: Sleep issues on Harvoni
« Reply #2 on: August 09, 2015, 11:19:24 pm »
Have been taking it in the morning. Sleepy in the evening at bedtime, 10:30-11:30 PM, wake up like clock work 1:30-2:30 AM. Only had two or three nights where I have slept until four or five . Go in for four week labs 8-10-15, will try the Doc. If not, next check up for results of labs on 8-16-15.
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline sickpuppy

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  • Posts: 51
Re: Sleep issues on Harvoni
« Reply #3 on: August 10, 2015, 05:04:13 am »
This seems to have been happening to me too lately.

However, I don't particularly blame Harvoni. It's not like this hasn't happened before. I do have periods of times where I wake up at 1 or 2 am for no particular reason. I usually just have some yoghurt or some water or tea and a biscuit, possibly have a smoke outside if it's a warmish night, then go right back to  bed.

I am a bit more tired the 2nd day because of that 15-20 minutes break in my sleep, but if that's the price to pay for getting rid of Hep C... oh well, then it's no price at all.
GT1a - TX-naive

Baseline:

16.2 kPa
ALT: 61 iu/L
ALP: 74 iu/L
Albumin: 38g/L
Bilirubin: 27 umol/L
Platelets: 80
VL: 792,000
History of 4 violent varices bleeding episodes and splenomegaly present.

21/07/15 - TX start - Harvoni + Ribavirin 12 weeks.
Week 2 - UND
Week 4 - UND
Week 8 - UND
13/10/15 Week 12 - UND
19/11/15 - SVR4
8/1/16 - SVR12 !!!!!

Offline gnatcatcher

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Re: Sleep issues on Harvoni
« Reply #4 on: August 10, 2015, 06:20:12 am »
Harvoni has a similar effect on me: My prior norm was 6.5 - 7 hours per 24, but on Harvoni it's been 5 - 5.5. I fall asleep at my usual time. When I wake after my "new normal" number of hours, I'm raring to go. Because I have more energy than before I started on Harvoni, I don't worry about the shorter sleep cycle. Also, occasionally there's a night when my body claims more hours of sleep. My dream life seems fine, so I must be getting enough REM sleep.

How is your energy level compared to what it used to be? How about dreams? Are you still having as many as (or more than) before Harvoni? Please let us know what the Dr. says.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline slats1056

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  • Posts: 765
  • SVR to all and to all a good life!
Re: Sleep issues on Harvoni
« Reply #5 on: August 10, 2015, 08:59:18 am »
Judging by the replies I need to redo my signature.  Sickpuppy, Man You had to mention a smoke. It's My last bad habit. trying to quit. Got it down to a pack a week after smoking 2-3 packs a day years ago. Don't know where You are at but down here in Texas right now it is 85-90 degrees still in the middle of the night!!!! Can't seem to handle the heat since harvoni either.
  Gnatcatcher, energy level comes in spurts through out the day. I now understand the difference between tired, fatigued, & exhausted. First coupled of days energy was off the charts. Then the crash.
 Not blaming Harvoni just curious about other folks way of dealing with it. This is a cake walk compared to what I have experienced over the last 40 years of Hep Crap!!!!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline gnatcatcher

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Re: Sleep issues on Harvoni
« Reply #6 on: August 10, 2015, 11:43:52 am »
Tommy, when your energy crashes, does it do any good to lie down for a bit, even if you can't sleep? (That has helped me.) Anyway, you'll be seeing your doctor soon -- hope you get some useful answers.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline slats1056

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  • Posts: 765
  • SVR to all and to all a good life!
Re: Sleep issues on Harvoni
« Reply #7 on: August 10, 2015, 12:30:04 pm »
Not able to week days , full time work . In the evening take a short 15-20 minute nap around 4:30 or 5:00 when I get home. Helps till dinner time around 9 ish.
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline Hopeful123

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  • Posts: 14
Re: Sleep issues on Harvoni
« Reply #8 on: August 10, 2015, 09:16:04 pm »
I used to have breaks in sleep mid night like 2am every night when I first started taking it but my quality of sleep was the best I've had since I can remember. I think I just required less sleep. That was like the first month expecially first few weeks. Now it's just boring regular sleep for me.

Offline sabre

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  • Posts: 77
Re: Sleep issues on Harvoni
« Reply #9 on: August 11, 2015, 10:23:43 am »
I took Harvoni at 11 AM everyday and slept better during treatment than I've slept in 25 years. I'd fall asleep as soon as I laid my head onto the pillow and would get a solid 7 hours.

Since I've been off, I'm back to 5-6 hours and typically it's broken sleep beyond 5.
Infected 1980 / Diagnosed 2008
GT 1 / Treatment naive / VL 190,000
Biopsy 2008: stage 0 grade 1
Fibroscan 2015: F2 mild fibrosis
Chronic kidney disease (due to HCV) / Proteinuria

12 weeks Harvoni began on 03/28/2015
End of treatment: 06/19/2015
Labs on 06/17/2015: Undetected
Labs on 09/21/2015: Undetected (SVR12)

Offline slats1056

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  • SVR to all and to all a good life!
Re: Sleep issues on Harvoni
« Reply #10 on: August 11, 2015, 11:58:02 am »
Man I would kill for a solid five hours of sleep right now. Found the My bad habit of smoking is increasing. Have to work on that. It's My last bad habit besides being in a bitchy mood most of the time!!!!!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline longtrip

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  • Posts: 6
Re: Sleep issues on Harvoni
« Reply #11 on: August 13, 2015, 01:49:42 pm »
Been four months past 12 week treatment. Still UND which means it's gone but I also can't sleep more then two hours at a time. Never had that problem before but if that's the price I paid to get rid of the Hep-C then I'll take not sleeping any day. I haven't had this much energy for the last ten years.

Offline KimInTheForest

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Re: Sleep issues on Harvoni
« Reply #12 on: August 13, 2015, 01:57:57 pm »
Been four months past 12 week treatment. Still UND which means it's gone but I also can't sleep more then two hours at a time. Never had that problem before but if that's the price I paid to get rid of the Hep-C then I'll take not sleeping any day. I haven't had this much energy for the last ten years.

Congrats longtrip! What are you doing for the insomnia problem? I am just 17 days post-tx (Harvoni+Riba) but am having major insomnia problems far beyond what I had during tx or prior to tx. Am thinking of taking benadryl at night.

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 longtrip

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Re: Sleep issues on Harvoni
« Reply #13 on: August 13, 2015, 02:11:15 pm »
Watching a lot of TV. Sorry to hear you also are having issues. I don't want to take anything since it feels great to be healthy again after 10 plus years of hell. I seem to be able to deal with my lack of sleep and at times it feels as if the more active I am during the day the more energy I get and by night it just doesn't get better. Strange deal and only since about my second week on Harvoni did it start happening but even after all this time it's hasn't changed.

Offline davidsconfused

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  • Posts: 53
Re: Sleep issues on Harvoni
« Reply #14 on: August 13, 2015, 02:17:01 pm »
I took Harvoni at 11 AM everyday and slept better during treatment than I've slept in 25 years. I'd fall asleep as soon as I laid my head onto the pillow and would get a solid 7 hours.

Since I've been off, I'm back to 5-6 hours and typically it's broken sleep beyond 5.

This was my experience. Taking a Harvoni was like taking a really good sleeping pill. I sleep much better on Harvoni than I did before and since I finished.

Offline sabre

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Re: Sleep issues on Harvoni
« Reply #15 on: August 13, 2015, 03:57:04 pm »
I feel fortunate that I don't have insomnia, but I do want to obtain a better night's sleep.

For now, I'm killing all electronics in the bedroom and going to bed later rather than earlier. I'm trying to train my body the time I want to wake up, and then I'll eventually work backward with the time I go to bed. My goal is to get 6.5 to 7 hours of uninterrupted sleep, naturally.

Good luck, everyone...It's a process.
Infected 1980 / Diagnosed 2008
GT 1 / Treatment naive / VL 190,000
Biopsy 2008: stage 0 grade 1
Fibroscan 2015: F2 mild fibrosis
Chronic kidney disease (due to HCV) / Proteinuria

12 weeks Harvoni began on 03/28/2015
End of treatment: 06/19/2015
Labs on 06/17/2015: Undetected
Labs on 09/21/2015: Undetected (SVR12)

Offline KimInTheForest

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  • Believe in yourself
Re: Sleep issues on Harvoni
« Reply #16 on: August 13, 2015, 06:15:10 pm »
For now, I'm killing all electronics in the bedroom and going to bed later rather than earlier. I'm trying to train my body the time I want to wake up, and then I'll eventually work backward with the time I go to bed. My goal is to get 6.5 to 7 hours of uninterrupted sleep, naturally.

Good luck, everyone...It's a process.

Excellent advice Sabre. I have removed all electronics from bedroom long ago (especially clock radio beside bed - one of the worst culprits for electromagnetic radiation). And I have deliberately lived without wireless devices in or on my home or my property my entire life. But for sure, for anyone here who has a houseful of wireless devices, keep them out of your bedroom (and kids' bedrooms) - especially if you are having sleep problems. You definitely don't want  chargers and base stations beside your bed. The stuff can't be on the other side of the wall either. Drywall is not a barrier. And if anyone has a wireless utility meter ("smart" meter) on their home, at very least don't let it be on outside wall of your bedroom where your head is. Change bedrooms if necessary.

donning my tinfoil hat now ;) haha! (but the risk is real)

kim
« Last Edit: August 13, 2015, 06:50:30 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 april

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  • Posts: 23
Re: Sleep issues on Harvoni
« Reply #17 on: August 14, 2015, 06:33:24 am »
Man I would kill for a solid five hours of sleep right now. Found the My bad habit of smoking is increasing. Have to work on that. It's My last bad habit besides being in a bitchy mood most of the time!!!!!
I am not too sure how to use this forum, so forgive me if I am not using it the right way. Slats- when you wake up at 2 or 3, dont smoke, stay in bed and try to put yourself back to sleep. If you get up to smoke, your body sets its clock to you getting up to smoke. Dont turn on the TV just lay there. You will eventually reset your body clock and sleep through until the morning. Also try melatonin, a natural sleep aide. Best of luck to you. Your moods have to be due to your lack of sleep. I dont know you, but I know if I dont sleep...look out!
Hep C
Geno type 1a
VL  1,800,000
f2
1999 Interferone/riba- non responder
2002 peg/riba- non responder
2006 peg/riba/study drug NM283-relapsed
July 1, 2015 started harvoni (12 weeks)
5th week labs undetected
EOT 9/23/15
90 days after treatment SVR
180 days after treatment SVR
considered cured

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: Sleep issues on Harvoni
« Reply #18 on: August 14, 2015, 01:53:23 pm »
 April How's it going. I know what Your are saying about the internal clock. Upsets Your natural sleep patterns. I have the smoking back down to 3-5 day. Usually in the evening when I have energy crashes. Nap 15-20 minutes when I get home after work around 4:30-5:00. Never smoke or watch TV after 10:30 or so after the weather. If it gets real bad I will get up & try to read ( if I can concentrate) for an hour or so until sleepy again. Yeah the moods, about that!!!! Like a bull in a china shop if You know what I mean..... what I don't tear up I crap on. Use to smoke 2-3 packs a day a couple of years ago. I am finding that this last pack or so a weeks is hard to let go like a kid with a pacifier.....only more toxic.
 LAST TWO DAYS IN A ROW I have gotten in 5-6 hours sleep. Man I could get used to this!!!!!!Headaches minimal, some lower back discomfort. Minimal enough that I can ignore them. Suspecting the extra h2o & Gatorade added to My fluid intake has helped. Have not been using anything but a couple of advil or one aleve on the killer headaches.
 I can't tell You guys how much better I feel the last two days. Here is hoping sides are diminishing going into week 5 of 12. Could somebody please speed up the clock to Monday afternoon? I am dying to get my 4 week labs back!!!!!! I really want to know what Mr. HARV and Mrs.ONI are doing inside me. LMFOA!!!!
 April , looks like You are using the forum just fine to Me. But then again, I might be using it wrong.  Hope everybody is in a good mood, get Your face in the wind and Your toes in the mud. Acting Young can help You feel better between the crashes!!!!!!!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: Sleep issues on Harvoni
« Reply #19 on: August 15, 2015, 09:42:42 am »
  Man did anyone get the plate # of the truck than ran over Me at 4:30 this morning??? Got in 4 1/2 hours of solid sleep. Massive headache & neck ache. Body doesn't feel to good either. Lots of h2o,ate, the only thing different was no gatorade. Trying to stay away from Advil & Aleve unless absolutely needed. Fingers having trouble hitting the right keys while punching. Lots of spell check errors. As long as the sleep keeps up I can hang though.
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline slats1056

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  • Posts: 765
  • SVR to all and to all a good life!
Re: Sleep issues on Harvoni
« Reply #20 on: August 15, 2015, 03:22:15 pm »
 Much, much better now. Took my pill after I got up & pounded about a quart & a half of water then a glass of OJ. Took until about ten o'clock for symptoms to lift. neck still hurts though. Made breakfast for lunch for My wife & I. I think maybe a battle between good & evil going on is what started the sides. Felt pretty good while cooking & had some coffee. Pounded another Qt. of h2o just in case. Man sometimes this stuff comes out of nowhere.
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline Dudleyandme

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  • Posts: 7
Re: Sleep issues on Harvoni
« Reply #21 on: August 16, 2015, 11:41:45 am »
Hi everyone, I'm new here. Today is day eight on Harvoni, and I've only slept 2 of those  nights so far. I just lie awake all night trying to relax and sleep, but in the end I don't even get 5 minutes, very frustrated a bit depressing. I don't want to get up in the middle of the night because I don't want to wake my husband who sleeps very light. I have to take gravol at night because my nausea is very bad, as is the stomach acid. Been taking gravol at bedtime for over 30 years. The two nights I slept well was because I took an Ativan, which I don't want to take very often because I'm scared of addiction.

Offline slats1056

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  • Posts: 765
  • SVR to all and to all a good life!
Re: Sleep issues on Harvoni
« Reply #22 on: August 16, 2015, 12:11:24 pm »
 Hi Dudleyandme , Glad You found the forum. Welcome to the main event!!!! I can relate to the sleep issues Big time. As I am a ex- alcoholic & drug addict I now how You feel.!!!! Personally I am not taking anything but My little Harvoni weapon unless I need it. Just started week five. Only had a couple of aleve , advils, & one zantac for My cranking bad head ache & acid issues. Use the forums to Your advantage to ask questions and seek info. for Your issues. Sounds strange but My wife of thirty six years & I no longer sleep together due to My sleep problems keeping her awake at night. Hopefully You have an understanding spouse! Hard times ahead , but stay the course!! The prize of SVR is within reach My friend!! The frustration is normal , but watch that depression!!!! BTW, Harvoni alone?? How long is Your treatment?
 Riding that crazy train to SVR, if it derails I will walk if I have to!! Take care of Yourself because no one else can do it for You! Lots of us little hepper piggies are rooting for You & each other.BTW, the forums are also good for venting and passing the times when they are rough.
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline KimInTheForest

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Re: Sleep issues on Harvoni
« Reply #23 on: August 16, 2015, 02:26:34 pm »
Hi Dudleyand me, and welcome to the forums and to the journey! When are you taking your Harvoni? Mornings or evenings? If evenings, try switching to a morning time to see if that helps with insomnia problem. I did not sleep during my first week of Harvoni+Riba. In my case it got better (but not perfect) by taking my 2nd dose of ribavirin in afternoon, not night. But I felt that the Harvoni was playing a role in my insomnia as well. And others here have reported the same.

Some people take Benadryl to help them sleep during treatment. Will help with itching and cough as well if you develop either of those side effects. I tried one the other night for my post-tx insomnia. It did help me sleep, but I was groggy and even more dysfunctional the following day (despite what I posted earlier when I did not realize how much the Benadryl had wiped me out). So I am not likely to take it again for sleep except in emergency.

Maybe make up a second bed for yourself during treatment? Might be easier on both of you. No fun lying awake in bed all night.

It's a journey. Just stay focused on the fact that you will, in all likelihood, come out of this cured, and that will help you push past the problems.

good luck,
kim :)
« Last Edit: August 16, 2015, 04:16:47 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 Dudleyandme

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Re: Sleep issues on Harvoni
« Reply #24 on: August 16, 2015, 03:24:08 pm »
Thank you Kim. I take Harvoni at 10 am. I'll try Benadryl, it might just help!

Offline Bree

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  • Posts: 576
  • "Today is a good day for a great day!"
Re: Sleep issues on Harvoni
« Reply #25 on: August 16, 2015, 03:41:41 pm »
I go to youtube on my iphone and find a sleep meditation and turn my phone upside down where the blue screen is not disturbing and let the gentle music and guided meditation run.  It usually puts me to sleep even if I wake up later.  I'm amazed how well this works. This has been a great help! 

I try not to take medications but occasionally I do just because I have to make sure to get solid sleep.
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 slats1056

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  • SVR to all and to all a good life!
Re: Sleep issues on Harvoni
« Reply #26 on: August 22, 2015, 05:11:30 pm »
Greetings & Salutations all You Hep C Warriors & SVR Seekers.
  Two days into week six and the sleep issues as well as most sides seem to have abated. With the exception of the headaches & some joint pain. The alarm clock has actually woke Me up twice last week which is unusual even under My regular abnormal conditions. Concentration remains a problem , unlike the usual brain fog.
 Keep the faith and keep on keeping on everybody!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: Sleep issues on Harvoni
« Reply #27 on: August 30, 2015, 11:28:04 pm »
 HELLO ALL OUT THERE IN HEP LAND!! Hope everyone is feeling well & thinking positive , I know I am. When I can think straight!! LOL . Sleep issues have greatly diminished since week four. Just hit the halfway mark on My twelve week journey to achieving SVR ! Still get some bad headaches once or twice a week , but manageable. Can't believe that in the forty seven days trip I have only had three or four Aleve , half a dozen Advil , and two Zantac when absolutely needed. I sure miss some of My supplements , but I ain't giving the virus any help and giving the meds. every possible chance in this war. Going into week five My sides started changing. Low grade fever, liver quivers ,blurry vision/trouble focusing. Still get some major joint pain and lower back pain.
 Second set of labs due in about ten days. Cautiously optimistic , but very hopeful. All this B.S. going on in this old body and brain will not be in vain!!!! Been so long since having a normal feeling life that I refer to it as My usual abnormal feeling. Hopefully the next trip to the lab and Doc will be better this time around as I felt extremely crappy last time I went. Felt so bad that I didn't ask the questions I had planned even though I had the list right in My hand the whole time!!! Talk about scatterbrained fog!

  Later everyone, praying for SVR and best wishes to all.  Keep Your Spirits Up and Remember~~~No Peeing in the Pol!!!! Happy dance everyone.
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline gnatcatcher

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  • Posts: 1,372
Re: Sleep issues on Harvoni
« Reply #28 on: August 31, 2015, 02:57:34 am »
Tommy, congrats on reaching the halfway point and staying the course, no matter the side effects. Just in case the brain fog descends at your next doctor's visit, you can be prepared ahead-of-time by having a printout ready to hand to your doc: "Sorry, doc -- brain fog, but here are my questions." Better yet, have a friend or family member along to ask the questions and take notes on the answers. That has worked well for me, and others appreciate my doing it for them. Has anyone asked you, "Let me know if there's anything I can do to help"? There's your note-taker -- give that person the joy of being able to give to you -- a win-win situation.
   Sending good vibes your way. -Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline slats1056

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  • Posts: 765
  • SVR to all and to all a good life!
Re: Sleep issues on Harvoni
« Reply #29 on: August 31, 2015, 09:14:43 am »
 Gnatty , MUCHISIMAS GRACIAS MI AMIGA!!! Shades of the Beach Boys , I can feel the good vibrations already. I'm right behind You & several others by about a week so, Right back at You. It's really funny because over the years I have become such a list maker to remember things that I LMFAO'd when I realized I didn't ask a single question from off of My sheet! NOTE TO SELF--- MAKE A LIST OF THE LISTS AND CHECK THEM TWICE.  If some of those little brain frogs would hold still for just a minute I might be able to think straight. NOTE TO SELF---MAKE A LIST OF THE LISTS AND CHECK THEM TWICE. LMFAO!  Man it is really nice to know that the light at the end of the tunnel won't running Me over! Hopes & dreams are building blocks for thoughts & actions people.
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline Dudleyandme

  • Member
  • Posts: 7
Re: Sleep issues on Harvoni
« Reply #30 on: September 02, 2015, 07:16:55 pm »
Congratulations on hitting the halfway mark Tommy. I'm almost half way on my eight week treatment. Still having extreme nausea, hoping that lets up soon, as I'm  living on gravol now and so the brain fog is worse. I see my specialist for the first time since I started treatment tomorrow, and not really expecting much except my refill.
I have gotten blurry vision from time to time and was told that it's your body starting to shut down from tiredness. You may need to rest more. I still suffer from insomnia too unless I take an Ativan to sleep I don't sleep at all. Tried benedryl but had a bad reaction to it. Good luck! And thank you for staying positive, it helps me to read it.
Laurie

Offline slats1056

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  • Posts: 765
  • SVR to all and to all a good life!
Re: Sleep issues on Harvoni
« Reply #31 on: September 02, 2015, 10:47:54 pm »
 Laurie, Same to You , glad to hear from You. Here lately I have been able to get in 4-6 wonderful hours of sleep , that is until I have to get rid of some of the damn water I consume to keep the headaches in check!LOL! Even had a few dreams but I'll be damned if I remember what they were. You might try some light soups or broth of Your liking with a couple of crackers to keep the nourishment up. Just watch the salt unless You make it Yourself. That seemed to sooth My stomach a little. Just heat up a little at a time & keep the rest in the fridge to use as You need it. Also, gingerale or ginger water might help out. Due to past bad life choices I choose not to medicate for My own health & well being. Glad You can get some relief though. You need to get up & find a reason to get high on life & laugh. Be silly,Do thing the kids, grandkids, & other children due just because!!! It can give You a new perspective on life. If You want to see something funny, visualize this, Me ( 6'3' 255 lbs. big old redneck ex biker )out with the kids teaching them to skip & play hopscotch!!!!!! Talk about a work out. Who needs jogging & the gym, kids are the best work out I have ever found. Much more amusing to the kids than Me I assume. A minute or two here and there will not only give You a little exercise , but give You a few much need laughs to distress, It's amazing how laughter is infectious as well as beneficial. By the way , they all seem to love My dragon tattoos.
 KEEP YOUR CHIN UP AND TO HELL WITH ANYBODY THAT SAYS YOUR NOT A CHILD ANYMORE!!!!!!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: Sleep issues on Harvoni
« Reply #32 on: September 02, 2015, 10:51:30 pm »
 Damn spell check got Me again!!!LOL! that last part was supposed to be DE-STRESS.
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: Sleep issues on Harvoni
« Reply #33 on: September 08, 2015, 02:59:19 pm »
 Hello to everyone on the crazy train! Been out of pocket for a couple for days with some fatigue/exhaustion. Got some rest over the Holiday weekend. Good news is I have been able to sleep the last week or so. Boy I forgot how good it felt to sleep more than 3-4 hours a nite! The Majority of Mt sides have diminished to the point to which I can ignore them. Still have some joint pain ( knuckles ,wrist, hips , and lower back ) , the occasional head aches, & the fatigue. I can handle them compared to  the nightmare of the first 5-6 weeks.  Eight weeks down and four to go!!! Start My third bottle of Harpoonis tomorrow.
 Got a call from insurance & nurse informing Me that My request for a quantitative viral load on the eight week labs Thursday AIN'T HAPPENING! Due to high cost of treatment , EOT and SVR only according to them! Oh well , everything has been going My way  so far for once that I'm not going to let it bother Me. Don't sweat the small stuff right? I am so thankful that all the sides have eased up that I am beside Myself! I can now lay down , fall asleep by 11- 11:30 and the alarm clock wakes Me at 5:30 AM. That is the most I have slept in ten to fifteen years. Used to be five hours was the absolute max!!!
 Been feeling real good but tired lately so I haven't been on the forums much, therefore I have a lot of catching up to do.

  Okay here is a parting shot!

  IT AIN'T WHAT THEY CALL YOU , IT'S WHAT YOU ANSWER TO!!! W.C.FIELDS.
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Sleep issues on Harvoni
« Reply #34 on: September 08, 2015, 05:17:34 pm »
Tommy, good to hear from you and know that you're giving Rip Van Winkle some competition in the sleep department. I'd begun to wonder if you'd taken a vow of silence, LOL. Great quote!
   An eight-week VL is irrelevant. The only important VL tests are a pre-treatment value (used as a baseline), the VL after four weeks of treatment (to see if there's been at least a 2 log drop), and the VL 12 weeks after the end of treatment (to see if you are cured). Many hepatologists (such as the one I go to) do not order more frequent VL tests --not only are they expensive, they may scare patients unnecessarily if the results oscillate.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: Sleep issues on Harvoni
« Reply #35 on: September 08, 2015, 10:28:00 pm »
 Hey Gnatty, Nice to here from You ,too. Not to sure about old Rip , more like Sleeping Beauty with a different type of pea!!!! LOL. More like silence of the hams!!!
  Hello Clarice, how about a pork chop with some fava beans, Sorry, no Chianti though!!!!! I will be abstaining for obvious reasons. HA HA HA.
  Yea,  the nix on 8 week test just bums me out a little since the wonderful folks down in lab town can't seem to cough up My 4 week viral load. Don't seem to have any record of it they say. They damn sure billed for it , so I'm bucking for a refund. It was a little kick in the pants I was looking for. But what the hell, I can get that here with a lot more info., good folks to chat with, and a laugh or two to boot. Can't beat that with a stick! Hey, I wish they would try & scare me, good luck with that.
  It sure takes a while to get caught up with things when You are out of touch for a couple of days. Hope everyone is doing well & healthy!

 MAY THE SUN ALWAYS SHINE ON YOU, THE WIND BLOW IN YOUR FACE, AND ABOVE ALL ---- HAPPY HEP C FREE TO EVERYBODY.
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: Sleep issues on Harvoni
« Reply #36 on: September 09, 2015, 11:23:16 am »
  I was IMFORMED by My youngest grand daughter , who is by the way apparently an expert on the Disney Princesses, that in fact it was NOT Sleeping Beauty but rather Princess & the Pea that I was referring to!!! LOL , out of the mouths of babes!!!!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

 


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