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Post triple tx/cirrhotic insomnia
The accumulation of sleepless nights is becoming more and more "twilight-zony". Presuming this to be secondary to my cirrhosis I am taking Lactulose but it is not helping (I have been taking it for about a week and a half) thus far. Banadryl partially helped for 1 night but even doubling the dose the next did not. I am undetectable for now (about 1 month post tx.) and had less problems sleeping on than off treatment. Some of the insomnia is both caused by and causing anxiety and a "catch-22", i.e., I'm unemployed and need to seek a job but how can I work if I'm up all night so why bother looking?"......Any thoughts other than benzo's and hypnotics (I have no insurance at the moment and my observation is these drugs can sometimes add to the complexity rather than address the problem). Also does anyone know if their is a timeline associated with Lactulose effectiveness in drawing ammonia and helping with day:night reversal. My best. d a.k.a. "The vampire"
This insomnia is beginning to really dig into my sanity. The Lactulose (30 ml 3 times a day) along with a dose of xifaxin daily is certainly not mitigating it. I'm going to try some melatonin this evening - My research tells me it is not cirrhosis (liver) friendly but after weeks of this and the "twilight-zone-depressing-anxiety provoking inverted universe" it creates who cares: What kind of life is this??
Like Hector mentioned, my doc told me to regulate how much lactulose I take by bowel movements. He said I should have 3 soft stool movements daily.
It takes a while to figure out what's the right amount of your body.
Good luck~
It takes a while to figure out what's the right amount of your body.
Good luck~
I would really stay away from the Benzos, I am noticing alot of people
getting hooked on those lately.
I also suffer from insomnia, and even very weak marajuana will help put
me to sleep, just a few puffs. But I dont do it nightly...I wait about 4 or 5 days
until I am feeling very Twilight-Zoneish, and then smoke some in the evening, and I am out like a rock, by 10 pm.
Of course, than I'm up again (worrying) by 6 am, but at least I have
slept, and feel less apt to have a nervous breakdown.
getting hooked on those lately.
I also suffer from insomnia, and even very weak marajuana will help put
me to sleep, just a few puffs. But I dont do it nightly...I wait about 4 or 5 days
until I am feeling very Twilight-Zoneish, and then smoke some in the evening, and I am out like a rock, by 10 pm.
Of course, than I'm up again (worrying) by 6 am, but at least I have
slept, and feel less apt to have a nervous breakdown.
dennis...i had to take advill gel pm for 3 months post tx to sleep...good luck...billy
The reason I conflated cirrhosis, insomnia, and H.E. (which my hepatologist has never been convinced I suffer from) is I was under the impression that day night reversal was one of the quintessential characters of HE secondary to cirrhosis. And Hector: I am taking 30 ml twice a day and will increase it to tid since I have not been having 3 substantial BM's since I began it (although my abdomen always reminds me I'm on it)... rather I have been having about 2 per day. I am taking just 1 550 mg Xifaxan tablet a day (1/2 the usual dosage) since I just had a single bottle of 60 left from when I had insurance and I'm trying to make them last until I land a job....Because I can still present myself with an above average verbal intelligence my self-diagnosed "HE" is not obvious to the public (unless you test my memory or ask me to count backwards or ask me what the point I intended to make was!)....Anyway back to insomnia: Hector does the Lactulose/Xifaxan help with your insomnia per se or just your cognitive functioning?
I know lactulose helps with HE but will it also affect the sleep problem ?
I'm also curious about what you consider an HE episode. I was fuzzy headed but only delirious that one time. Does that mean I only had one episode ?
I'm also curious about what you consider an HE episode. I was fuzzy headed but only delirious that one time. Does that mean I only had one episode ?
Hi Dennis.
I will also assume your sleep issues are related to cirrhosis.
In a number of post people mention various drugs to make people sleep. Your sleep issues are not caused by the usual things that cause sleep problems for normal healthy people. The problem stems from HE because the body clock in our brains is being poisoned by toxins from the gut that are not be filtered out of the blood stream by your liver as it normally does. That is why it is called "hepatic encephalopathy". A liver caused disorder or disease of the brain. So you must deal with the cause of your sleep issue in order to resolve it.
You should have your hepatologist explain this to you. Also I don't know if you know this but the more episodes of HE you have the more prone you are to it getting worse with time. I used to have minimal HE 3 years ago. Now it is really becoming worse and worse so my sleep cycles are totally screwed up and my memory about certain things is just gone.
1. Are you following a diet for the prevention of hepatic encephalopathy?
No red meat. Red meat creates lots of toxins in your gut. Chicken and well cooked seafood is fine. Vegetable protein is also fine.
2. You must take the proper dosage of lactulose for it to work. The usual oral dose is 15 to 45 mL/day. You need to take enough so that you have 3-4 bowel movements per day. This takes time to do. Even the type of food you are eating will effect how many bowel movements you will have. In time you will get the hand of it. At first you might have a lot of diarrhea. You want to have "loose" stools but not diarrhea because dehydration makes HE worse.
A week and a half of treatment should help. When patients have a bad episode of HE and they go into a coma they will give patients Lactulose enemas. So it does work.
3. I am not sure what health insurance you have but you should in addition to Lactulose be taking Xifaxan. Lactulose and Xifaxan are the current standard treatment for HE. XIfaxan is an antibiotic so it works differently than Lactulose. But it is highly effective. The only downside is cost. About $1,500 per month without insurance. I get mine for a $40 co-payment. And there is a coupon on their website so it will pay up to $100 per co-payment cost. I highly recommend it. It has been proven to prevent HE episodes.
A few more important points about HE and treatment:
*********************************************************************
Benzo's and barbiturates are contraindicated in cirrhotics. Long-acting benzodiazepines should be avoided when treating sleep disorders in cirrhosis because they may trigger or aggravate hepatic encephalopathy.
Also
Electrolyte disturbances (changes in potassium sodium balance) may precipitate hepatic encephalopathy. Especially if you are taking diuretics to prevent ascites can cause this. As well as vomiting.
*Again you should consult with your hepatologist BEFORE you make any changes to your diet or medications. Changing anything can have a major effect on a person with cirrhosis.
********************************************************************
The following will bring on an HE episode or make one worse:
Dehydration (loss of water from the body)
Medications that affect the nervous system, such as tranquilizers or sleep medications
GI bleeding
Infection
Constipation
Diuretic therapy
Hypovolemia
Renal failure
So watch for constipation. It can bring on an episode if you don't go for a day and a half or more take Lactulose until you do.
HE FAQS
* Hepatic encephalopathy (HE) is a brain disorder caused by liver damage
* HE can be an acute (short-term) or chronic (long-term) condition and can be mild, moderate, or severe
* HE occurs when the liver cannot remove toxic chemicals in the blood and these chemicals enter the brain
* Symptoms of HE may progress slowly, or may occur suddenly
* Common symptoms of HE include confusion, forgetfulness, personality or mood changes, poor concentration and judgment, stale or sweet odored breath, change in sleep patterns, and worsening of handwriting or small hand movements
* People with HE can enter a coma or have brain damage
* HE can be a medical emergency and hospitalization is usually required
* Treatments aim to manage the disease and keep people out of the hospital
* The best way to reduce the risk of HE is to prevent, treat, or manage liver disease
Symptoms may include:
Mild confusion
Forgetfulness
Personality or mood changes
Poor concentration
Poor judgment
Stale or sweet odored breath
Change in sleep patterns
Worsening of handwriting or small hand movements
Severe symptoms may include:
Unusual movements or shaking of hands or arms (also known as “flapping”)
Extreme anxiety
Seizures
Severe confusion
Sleepiness or fatigue
Severe personality changes
Jumbled and slurred speech
Slow movement
Cheers!
Hector
I will also assume your sleep issues are related to cirrhosis.
In a number of post people mention various drugs to make people sleep. Your sleep issues are not caused by the usual things that cause sleep problems for normal healthy people. The problem stems from HE because the body clock in our brains is being poisoned by toxins from the gut that are not be filtered out of the blood stream by your liver as it normally does. That is why it is called "hepatic encephalopathy". A liver caused disorder or disease of the brain. So you must deal with the cause of your sleep issue in order to resolve it.
You should have your hepatologist explain this to you. Also I don't know if you know this but the more episodes of HE you have the more prone you are to it getting worse with time. I used to have minimal HE 3 years ago. Now it is really becoming worse and worse so my sleep cycles are totally screwed up and my memory about certain things is just gone.
1. Are you following a diet for the prevention of hepatic encephalopathy?
No red meat. Red meat creates lots of toxins in your gut. Chicken and well cooked seafood is fine. Vegetable protein is also fine.
2. You must take the proper dosage of lactulose for it to work. The usual oral dose is 15 to 45 mL/day. You need to take enough so that you have 3-4 bowel movements per day. This takes time to do. Even the type of food you are eating will effect how many bowel movements you will have. In time you will get the hand of it. At first you might have a lot of diarrhea. You want to have "loose" stools but not diarrhea because dehydration makes HE worse.
A week and a half of treatment should help. When patients have a bad episode of HE and they go into a coma they will give patients Lactulose enemas. So it does work.
3. I am not sure what health insurance you have but you should in addition to Lactulose be taking Xifaxan. Lactulose and Xifaxan are the current standard treatment for HE. XIfaxan is an antibiotic so it works differently than Lactulose. But it is highly effective. The only downside is cost. About $1,500 per month without insurance. I get mine for a $40 co-payment. And there is a coupon on their website so it will pay up to $100 per co-payment cost. I highly recommend it. It has been proven to prevent HE episodes.
A few more important points about HE and treatment:
*********************************************************************
Benzo's and barbiturates are contraindicated in cirrhotics. Long-acting benzodiazepines should be avoided when treating sleep disorders in cirrhosis because they may trigger or aggravate hepatic encephalopathy.
Also
Electrolyte disturbances (changes in potassium sodium balance) may precipitate hepatic encephalopathy. Especially if you are taking diuretics to prevent ascites can cause this. As well as vomiting.
*Again you should consult with your hepatologist BEFORE you make any changes to your diet or medications. Changing anything can have a major effect on a person with cirrhosis.
********************************************************************
The following will bring on an HE episode or make one worse:
Dehydration (loss of water from the body)
Medications that affect the nervous system, such as tranquilizers or sleep medications
GI bleeding
Infection
Constipation
Diuretic therapy
Hypovolemia
Renal failure
So watch for constipation. It can bring on an episode if you don't go for a day and a half or more take Lactulose until you do.
HE FAQS
* Hepatic encephalopathy (HE) is a brain disorder caused by liver damage
* HE can be an acute (short-term) or chronic (long-term) condition and can be mild, moderate, or severe
* HE occurs when the liver cannot remove toxic chemicals in the blood and these chemicals enter the brain
* Symptoms of HE may progress slowly, or may occur suddenly
* Common symptoms of HE include confusion, forgetfulness, personality or mood changes, poor concentration and judgment, stale or sweet odored breath, change in sleep patterns, and worsening of handwriting or small hand movements
* People with HE can enter a coma or have brain damage
* HE can be a medical emergency and hospitalization is usually required
* Treatments aim to manage the disease and keep people out of the hospital
* The best way to reduce the risk of HE is to prevent, treat, or manage liver disease
Symptoms may include:
Mild confusion
Forgetfulness
Personality or mood changes
Poor concentration
Poor judgment
Stale or sweet odored breath
Change in sleep patterns
Worsening of handwriting or small hand movements
Severe symptoms may include:
Unusual movements or shaking of hands or arms (also known as “flapping”)
Extreme anxiety
Seizures
Severe confusion
Sleepiness or fatigue
Severe personality changes
Jumbled and slurred speech
Slow movement
Cheers!
Hector
Denis, I forgot to add that sometimes I take calcium,magnesium,potassium, zinc and vitaminD to help the calcium absorb to help me sleep.
Hey there! I understand the frustration of sleep wake reversal. Mine started back before tx. While it seems to be getting better I tried Melatonin but had to take 6 mg in order for it to work. Atarax worked when I was on tx however the one that is the most consistent for me is a small dose of xanax. It helps 90% of the time
My husband who has insomnia uses ZzzQuil a sleep aid and he said it works for him. It is dipenhydramine, not really sure why but the liquid works better for him than benedryl pills
Hope you can get yourself turned around. Are you still drinking lots of water? I am tired of water however I know it will help me so I walk around with a glass of water all the time :)
Good luck
My husband who has insomnia uses ZzzQuil a sleep aid and he said it works for him. It is dipenhydramine, not really sure why but the liquid works better for him than benedryl pills
Hope you can get yourself turned around. Are you still drinking lots of water? I am tired of water however I know it will help me so I walk around with a glass of water all the time :)
Good luck
Cirrhosis, especially when decompensated will indeed disrupt sleep patterns.
Lactulose is for the hepatic encephalopathy. It's doesn't do anything for your sleep problems.
It's important to take it to keep ammonia levels down as well as avoiding red meat and iron. Stick to a very low sodium diet as well. The only time I went to the ER while cirrhotic was when I stopped taking lactulose and went looney tunes.
My advice is get used to it for now. Take naps in the day time. I never found a way to resolve the sleep problem while cirrhotic.
Hopefully Hector will chime in later with his usual good advice. As you may notice, his cirrhosis also causes him to be a night owl a lot of the time too.
Lactulose is for the hepatic encephalopathy. It's doesn't do anything for your sleep problems.
It's important to take it to keep ammonia levels down as well as avoiding red meat and iron. Stick to a very low sodium diet as well. The only time I went to the ER while cirrhotic was when I stopped taking lactulose and went looney tunes.
My advice is get used to it for now. Take naps in the day time. I never found a way to resolve the sleep problem while cirrhotic.
Hopefully Hector will chime in later with his usual good advice. As you may notice, his cirrhosis also causes him to be a night owl a lot of the time too.
Good points, and a real LOL re "doing some research" being the best sleep aid!
I don't think every cirrhotic or person post tx suffers from insomnia. I am sure there are other variables like coeric stated, about magnesium. It makes sense when you think of how we don't get full access to all the nutrients we need to stay in balance.
It might actually help put me to sleep tonight if I start doing some research on it too!! lol
It might actually help put me to sleep tonight if I start doing some research on it too!! lol
I didn't even know there was a correlation between insomnia and cirrhosis! I'm almost done with tx and still find out new stuff all the time.
I'll go 36 hours unable to sleep, exhausted, but by no means "sleepy"! I have tried every Rx (ambien, klonopin, etc.) and OTC (benedryl, etc.) thing for anxiety and sleep and if it happened to work it was only for a few days then nothing. I even resorted to NyQuil with 30mg dextromethorphan. (I don't know what my docs would have said about that, but desperate times sometimes promote desperate measures.) But it was once or twice and then it didn't work.
I thought it was the strong "powers" of the poison we take (inf, riba, etc.) and the regular meds just could not supersede them. I'm very interested to know more about this and will start researching, but if anyone has any good links for cirrhosis and insomnia I would appreciate seeing them. Supposedly I'm not cirrhotic per a Fibrosure, but I've had my suspicions about that.
So, this goes on even after tx?!? Oh boy, I have to look into this. When do we get to go to work and make a living?!? :)
I'll go 36 hours unable to sleep, exhausted, but by no means "sleepy"! I have tried every Rx (ambien, klonopin, etc.) and OTC (benedryl, etc.) thing for anxiety and sleep and if it happened to work it was only for a few days then nothing. I even resorted to NyQuil with 30mg dextromethorphan. (I don't know what my docs would have said about that, but desperate times sometimes promote desperate measures.) But it was once or twice and then it didn't work.
I thought it was the strong "powers" of the poison we take (inf, riba, etc.) and the regular meds just could not supersede them. I'm very interested to know more about this and will start researching, but if anyone has any good links for cirrhosis and insomnia I would appreciate seeing them. Supposedly I'm not cirrhotic per a Fibrosure, but I've had my suspicions about that.
So, this goes on even after tx?!? Oh boy, I have to look into this. When do we get to go to work and make a living?!? :)
a few years ago, i started getting nocturnal muscle cramps in the feet, legs and abdomen. i also had the restless legs. i started taking magnesium supplements to try and reduce the muscle cramps. it may be just a coincidence but after taking the minerals including magnesium for a few months my restless legs calmed down. there may be many etiologies that cause restless legs.
Magnesium therapy for periodic leg movements-related insomnia and restless legs syndrome: an open pilot study.
Abstract
Periodic limb movements during sleep (PLMS), with or without symptoms of a restless legs syndrome (RLS), may cause sleep disturbances. The pharmacologic treatments of choice are dopaminergic drugs. Their use, however, may be limited due to tolerance development or rebound phenomena. Anecdotal observations have shown that oral magnesium therapy may ameliorate symptoms in patients with moderate RLS. We report on an open clinical and polysomnographic study in 10 patients (mean age 57 +/- 9 years; 6 men, 4 women) suffering from insomnia related to PLMS (n = 4) or mild-to-moderate RLS (n = 6). Magnesium was administered orally at a dose of 12.4 mmol in the evening over a period of 4-6 weeks. Following magnesium treatment, PLMS associated with arousals (PLMS-A) decreased significantly (17 +/- 7 vs 7 +/- 7 events per hour of total sleep time, p < 0.05). PLMS without arousal were also moderately reduced (PLMS per hour of total sleep time 33 +/- 16 vs 21 +/- 23, p = 0.07). Sleep efficiency improved from 75 +/- 12% to 85 +/- 8% (p < 0.01). In the group of patients estimating their sleep and/or symptoms of RLS as improved after therapy (n = 7), the effects of magnesium on PLMS and PLMS-A were even more pronounced. Our study indicates that magnesium treatment may be a useful alternative therapy in patients with mild or moderate RLS-or PLMS-related insomnia. Further investigations regarding the role of magnesium in the pathophysiology of RLS and placebo-controlled studies need to be performed.
from http://www.ncbi.nlm.nih.gov/pubmed/9703590
Magnesium therapy for periodic leg movements-related insomnia and restless legs syndrome: an open pilot study.
Abstract
Periodic limb movements during sleep (PLMS), with or without symptoms of a restless legs syndrome (RLS), may cause sleep disturbances. The pharmacologic treatments of choice are dopaminergic drugs. Their use, however, may be limited due to tolerance development or rebound phenomena. Anecdotal observations have shown that oral magnesium therapy may ameliorate symptoms in patients with moderate RLS. We report on an open clinical and polysomnographic study in 10 patients (mean age 57 +/- 9 years; 6 men, 4 women) suffering from insomnia related to PLMS (n = 4) or mild-to-moderate RLS (n = 6). Magnesium was administered orally at a dose of 12.4 mmol in the evening over a period of 4-6 weeks. Following magnesium treatment, PLMS associated with arousals (PLMS-A) decreased significantly (17 +/- 7 vs 7 +/- 7 events per hour of total sleep time, p < 0.05). PLMS without arousal were also moderately reduced (PLMS per hour of total sleep time 33 +/- 16 vs 21 +/- 23, p = 0.07). Sleep efficiency improved from 75 +/- 12% to 85 +/- 8% (p < 0.01). In the group of patients estimating their sleep and/or symptoms of RLS as improved after therapy (n = 7), the effects of magnesium on PLMS and PLMS-A were even more pronounced. Our study indicates that magnesium treatment may be a useful alternative therapy in patients with mild or moderate RLS-or PLMS-related insomnia. Further investigations regarding the role of magnesium in the pathophysiology of RLS and placebo-controlled studies need to be performed.
from http://www.ncbi.nlm.nih.gov/pubmed/9703590
Medical Cannabis helps me but it may not be legal where you live.
I don't really like depending on it to sleep and am hoping that without the ribavirin, insomnia won't be a problem, but I suspect it is related to cirrhosis more than the riba because I had more serious insomnia pretreatment.
I will try melatonin.
I too, welcome further input on this issue.
I don't really like depending on it to sleep and am hoping that without the ribavirin, insomnia won't be a problem, but I suspect it is related to cirrhosis more than the riba because I had more serious insomnia pretreatment.
I will try melatonin.
I too, welcome further input on this issue.
My hepatologist has given me the okay to take melatonin even though I'm both cirrhotic and on tx. I researched melatonin before taking it and found that it works best, with fewer side effects, in a pretty small dose, preferay 1 - 1.25mg. I bought mine at Trader Joes's which only sells 5 mg tablets, so I have to use a pill cutter on them twice to get the dose down. At 1/4 tablet I don't have any grogginess the next day.
You didnt really specify how you are kept awake. Is it the classic thing of being too mentally fired up and having your mind churning away, or is it more physical? Unfortunately, my own sleep problems have been evolving so that just getting sleepy from the melatonin is no longer enough. Now I've developed what I think is restless leg syndrome, so even though I'm very sleepy I am kept awake by my own body fidgeting, twitching and kicking around. I'm tired all the time but the only time I can pretty reliably sleep is between 5-9 am. I just sent off a note to my hepatologist, but would welcome any other input.
You didnt really specify how you are kept awake. Is it the classic thing of being too mentally fired up and having your mind churning away, or is it more physical? Unfortunately, my own sleep problems have been evolving so that just getting sleepy from the melatonin is no longer enough. Now I've developed what I think is restless leg syndrome, so even though I'm very sleepy I am kept awake by my own body fidgeting, twitching and kicking around. I'm tired all the time but the only time I can pretty reliably sleep is between 5-9 am. I just sent off a note to my hepatologist, but would welcome any other input.
i totally agree that the supplements that i take may not be kosher for a cirrhosis diagnosis. my primary doc suggested 5htp a few years ago. i take a 200mg timed release version made by Natrol. i think it is helping me with my moods too. perhaps one of the more knowledgeable members will comment on 5htp.
Indeed (I say with crossed fingers): I lost the nocturnal cramps during and post treatment too. I may try some Melatonin again too: 2 concerns: I remember reading that it is not good to take with cirrhosis relative to liver health, and it left me groggy the next day when I previously tried it, 5htp: hmm?
glad to hear you are still UND. I've never been a great sleeper and with this treatment it seems like my sleep switch is gone. in the past when i would get into bed, i would know within a few minutes whether or not i was going to fall asleep. if i was going to fall asleep i could feel the thinking mind slip away. Now the sleep switch is gone. for the last few months i have been taking melatonin, 5htp, atarax, minerals including magnesium, and tylenol pm, before going to bed. i am also experiencing myalgia at night. if midnight rolls around and i am still not asleep i take 2.5mg zolpidem. i find that i am using the zolpidem more frequently as time goes on and am concerned that i will get addicted to the zolpidem. one good thing that has come out of this treatment is i no longer have the muscle cramps that would wake me up.
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