I’m not going to get into my current state of health as of yet because I am on my iPhone, and I also have yet to get any sleep.
My question to you all is does anyone take any sort of sleep aid, prescription or herbal? I am so tired due to inability to sleep - I even got a $1200 top of the line Sealy latex and gel mattress set because I thought that my old bed was a major part of this insomnia. I have been afraid to just try anything because I know that most all drugs are processed in the liver, and more damage to that I don’t need!
Any advice or personal insight would be much appreciated!!
<3 ~ Pandora
Hello there I to have the same issues when it comes to trying to fall asleep. My best advice is to ask your doctor about a sleep aid he can prescribe for you that is not so difficult to pass threw the liver. Or you can try melatonin!, your brain produces it naturally so try it. I’m not a doctor though so ask your doctor first please. God Bless you and good luck.
Noticed your blog…i have sleep apnea and have a cpac…but my hips hurt so bad at nights it keeps me from getting a good nights sleep…any suggestions on a good mattress? How do u like yr new mattress pandora?
Hola Pandora. My fiancé has dinner before 7PM, tea every night, watches some TV before falling asleep around 11PM, having his feet elevated with a few phone books under our mattress. We were told to allow his food time to digest than relax the body.
Tea can be found at www.cardamomandcurry.com The blend is ‘Malabar Coast’. It is a good blend for the liver (turmeric, saffron, cayenne and such).
I tried about 3 different sleep meds but after about 3 days they would stop working. Then I went back to my biofeedback therapist and he made a CD for me and everything. That would help - sometimes. Now, I really just stick to a certain schedule at night, try to do calming things in the evening and go to bed at about the same time every night. And I started taking the Lunesta and it seems to be helping, at least. But my need for sleep has really flipped and now I need at least a couple hours of good sleep early in the afternoon - usu. 1-3 pm or thereabouts. Then if I can wait till 10 pm to take the Lunesta I can sleep until 5 am, but sometimes only 3 or 4 am. Whenever it is, I just get up, do a lot of writing, and after I have some breakfast, go back to bed for about an hour. Yeah. Really cuts into a "normal" schedule. But I do what I have to do. I'm always tired. No matter what. Except in the morning.
Oh, once I got some Hyland's Leg Cramps PM to take at night, the leg and foot and hand cramps don't wake me up. Lotta fun. Not!
Leg, foot and hand cramps? What causes the cramping?
He has been getting cramps in surges here and there. We brought it up to his doc, which said his salt may have been low, his salt is OK though.
I was prescribed generic Ambien (Zolpidem) with good success. I take a half tablet 15 min. before I go to bed. Works like a charm! I also take a hydroxyzine for the itching, which I think helps both the insomnia and itching. Sweet Dreams!
I have a lot of trouble sleeping, as well. For me, it is the itching and just general restlessness. I have started taking 2 hydroxyzine about 1.5 to 2 hours before bed. My gastro and my liver specialist both say it's ok. It is like a stronger benadryl. It is fairly drying to the sinuses, so I run a vaporizer too. I still get up several times at night, but am sleeping more than I have in a while. I work full time, but am on second shift, so I can "sleep in" somewhat. I know you feel like you are the only one not sleeping in the whole world (I know I feel that way sometimes), but there are many of us dealing with the same thing. Good luck and just keep trying to find what works for you.
The muscle cramping is caused by very low potassium. The usual advice for a normal person (without liver disease) is to eat a banana a day and that will provide more potassium. Most liver patients - at least for PSC - are prescribed medical level potassium chloride and this will help a lot. However, mine has gotten worse over the years and my doctor doesn't want to prescribe more potassium. She told me at my last visit about Hyland's Leg Cramps PM (the tablets) and says her other PSC patients swear by it. It has a tiny amount of quinine in it and is actually a homeopathic medicine. You can get it at Walgreens and also health food stores. It's been such a relief! I can't believe your husband's doctor wouldn't know about the potassium connection. Is he a hepatologist?
Hi - if you truly have restless leg syndrome there are 2 different drugs for that. I take 0.5 mg of Mirapex (but generic). Works wonderfully well for myself. Legs, body, arms don't twitch and hurt at night. They just feel heavy like after a good day's work.
If you have restless legs there are drugs (OTC and script) that will increase symptoms - anti depressants, anti- histamines (Benadryl drives me nuts not sleepy and Reglan - gut motility drug).
Also would like to clear a misconception/myth read in some responses.
Everything! that we eat or drink passes through the liver. There 3 essential phases of breaking down substance. Each phases has each own enzymes and other chemicals that break down what is passed to it from phase before. One instance - example- is peanut butter. The second phase of break down creates a highly toxic substance to our body. The chemicals we have in the liver break that down and passes it to the third phase which is not toxic. Many food substances we consider to be safe can be like that. Sometimes what it is processing produces formaldehyde.
Now if for some reason that phase is not working it could cause problems.
A very good example of this is "poison mushrooms". The liver starts processing them. But phase 2 runs out of the chemicals needed to break down the poison. It overwhelms the system and you will die because of the remaining poison. As you may have heard requires an immediate transplant.
Also you have to be very careful with "natural remedies" especially as your liver gets worse and post transplant. At U of Colo they discourage all use of natural substitues even things like milk thistle. There is not enuf known about how immunosuppressant react with them.
The one natural discipline that I thought was extremely helpful in helping me get through the waiting for a liver was traditional acupuncture. Interestingly enuf the peak liver activity is at 3 a.m. An imbalance in liver chi can also cause insomnia. Read the following taken from this site.....http://www.tcmpage.com/hpinsomnia.html
Waking up at a specific time every night: For example, some people regularly wake up at three o�clock in the morning. In Chinese medicine theory, the body�s energy (Chi) circulates through the twelve principal meridians over a 24-hour period. Each meridian relates to an internal organ. If a person wakes or has some unusual symptoms at the same time every day, it is probable that there is an imbalance in the organ system that is "highlighted" at that time of day. Energy peaks in the Liver meridian at 3:00 a.m., which is why people often wake up then. Liver problems can result from unexpressed anger, stress triggering Liver Chi stagnation, and Liver Fire.
As I got closer to the transplant my 'night' changed from 3 a.m. to 3 p.m. This happened naturally. Of course I wasn't working during this time.
Happy Holidays everyone! Love and cheers! Deb
Hi - my biofeedback therapist is educated in Chinese medicine and we discussed at length the "liver hour" which you described. I know if I wake up just before or right at 3 am, I'm done sleeping. Nothing I can do at that point can make me sleep. The biofeedback can help me relax and it's a form of meditation, so I'll do some of those steps if I wake up that early. No matter what I end up doing - staying in bed and reading or just getting up - at least I feel a little better from the relaxation. I've been taking the Lunesta for the past 10 days or so when things got so bad and so frustrating that I was ready to do anything to be able to sleep. But as you said, it still has to pass through the liver. The leg cramp stuff I take is homeopathic so the doses are so minute as to be almost nil - but it does work. I don't have restless leg. Anyway, once this past summer I took 2 0.5 Ativan at around 1 am, and I learned about hyper-metabolism. I was sick and loopy for 24 hours, eventually vomiting. I got stuck in one of the processing phases. I figured it out myself from my own research.
Sleep is a hot topic for people with PSC. As you said, Deb, your 3 am became 3 pm. I'm just about there now. I feel a little frantic if I know I have to do something or go somewhere in the middle of the afternoon and can't sleep a couple of hours.
When I had PSC, my hepatologist told me that melatonin and seratonin, the hormones that make your brain get sleepy and then wake you up are controlled by the liver. It is common with PSC patients to have sleep problems. I took OTC 10mg Melatonin about 60 minutes before going to bed. It is natural, non-active and it worked. Ot other times I would drink a warm cup of milk with a dash of vanilla and a little sugar. That made me sleepy. When things were at there worst, I was prescribed Zolipidem 10mg. Be ready for bed, because you will fall asleep in 5 minutes. It can also cause you to sleepwalk and eat out of the fridge. No kidding! Worst part is you won't remember it at tall. Talk it over with your doctor first. I'm transplanted now and do not have PSC any longer, but I sure have been through what you are experiencing.
Thank you, Stephen for the check in!
Sleep is STILL an issue. Learning to handle the issue has changed. We stopped with having tea later in the night and moved it to afternoon/early evening. Less visits to the restroom. No computer a few hours before bed. Eating dinner 4 hours (minimum) before bed. Light dinners help. Small things make larger impacts for us. We were prescribed a sleeping pill but chose not to use it, yet. I will tell about new symptoms and/or discussion points on a new post; as to keep topics easily separated for all.