Hi all! First time post and I’m looking for some insight. Going through my own odyssey at the moment. I’m from the US. History of alcohol use (average 18-25 units a week plus some binges for about 14 years, and 3-4 years of that combined with antibiotic prescription (3 antibiotics) for 4 years for “chronic” Lyme disease. 6 weeks abstinent, and will never go back. EVER!
1 year ago, had RUQ pain. Labs showed mildly elevated bilirubin (.2 above normal), but all LFTs normal. Ultrasound was normal. Took 6 weeks off drinking. Pain was gone. Resumed lifestyle. Yearly checkup showed mildly elevated ALT. 2 points above normal. GP said we’ll keep an eye on it .
RUQ Pain is back as of Feb 16. pain is also in the center just below sternum and on the left under ribs . Also has felt full in there. I won’t list all my symptoms now, but LFT were ALL normal on Feb 28. Had a CT scan done early March that described all organs but when it came to upper abdomen just said “unremarkable.” Asked GP if we should follow up with radiologist, and they said we could instead do more imaging. Albumin is at a strong place and GGT is normal.Platelets normal. Have been feeling worse and worse so am now referred to a GI. I hope to get to the bottom of all this.
So for my question:
My anxiety is through the roof, I’m having incidents of spaciness/lack of attention lately in the mornings or at other times during the day. Today it was accompanied by intense hunger, and some hand shaking. It has made me scared to drive a car. Food seems to have helped the shaking but still feel spacey and out of it. Can’t focus at work. Having trouble sleeping some nights. Sometimes it’s accompanied with a brief period of a “hot flash”
Has your untreated HE had brief spells that come and go during the day, or is it long lasting? Have you ever felt like you’ve had a “hot flash” during HE?
Thanks for sharing your experiences!
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scutmike4
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Hi there.im no doctor but I would of thought that if any thing was seriously wrong with your liver your platelet level would indicate something.but you say that it’s normal.on saying that your hunger pangs and need to eat reminded me about my own condition which was stage four liver disease prior to transplant in which I had to eat every couple of hours. as my liver wasn’t storing energy from the food I ate which resulted in muscle loss as far as the brain fog it was quite mild but still enough to forget what I’m talking about mid sentence also I’d drive to someone’s house and on leaving forget were i was and how I got there.after learning it was tied to my condition had to stop driving and working.it must be stressful not knowing but hope you’ll be fine.
Thanks Popel! I had platelets that were from 166 while drinking but bumped up to 212 two weeks after I stopped.
I haven’t had any major forgetfulness of where I am going or what I’m doing, so I take that as a good sign. Mostly just out of it, can’t focus, occasional dizziness and difficulty with coordination. I’m also considering whether it’s PAWS causing this too. It’s just weird that it happens usually in the morning and seems to be resolved by early afternoon. BM for me is usually first thing in the morning.
Yeah not knowing has been a huge anxiety source. Hope my GI appt goes well!
Modifying your diet might help with the 'spaciness'. You could be running low on blood sugar (hypoglycaemia). Frequent small meals & adequate protein would help if that's the case. The sort of thing I'm referring to is described in the following link. Inadequate nutrition can cause symptoms like yours.
Exercise should help for the anxiety. I do a 50 minute power walking session on a treadmill daily & it helps enormously with keeping anxiety in check. I listen to rock music through good quality cordless headphones as I do the session & the music gets me going & I forget my worries. Before I know it the treadmill session is over & I'm bathed in sweat & feeling a beautiful exercise high.
You probably don't have encephalopathy if nothing has been found wrong with your liver so far although my own personal experience confirms that it is possible to get it even if your liver isn't structurally damaged. In your case it's more likely to be caused by anxiety & your body needing adequate amounts of food.
Adequate sleep is important. I sometimes do my treadmill session at night & it tires me out & helps me sleep. I also listen to a relaxing audio tape I have made by a hypnotherapist designed to relax you as you lie on a bed. There are plenty of such sessions available on YouTube for free that you could try. Stress plus your Lyme disease appears to be causing at least some of your problems.
My Lyme disease is resolved and I was off antibiotics for it starting at least a year ago, so that’s a relief. I usually powerwalk at work for 30 minutes but I could try at night!
I also discussed hypoglycemia with my significant other, as what I feel reminds her of herself. She gets hypoglycemic, so it’s been a good source of info. I’ve been focusing on good protein intake and carb intake to make sure I don’t lose weight. I’ve always been skinny. I also think it might be PAWS, as I’m only 6 weeks abstinent so far. We’ll see.
Did you have HE episodes Edward? And if so, did they last a long time or just a couple of hours?
I had encephalopathy despite not having fibrosis or cirrhosis. I was in a kind of fog for a number of months when my liver function became impaired as a result of overuse of painkillers. My general brain function was poor. I had episodes where I lost orientation & I didn't know where I was despite being in familiar surroundings. My memory was very poor. I misplaced objects putting them in strange places. I also had pruritus & bouts of extreme tiredness as well as bouts of sweating & unpleasant flushes rising from my stomach to the top of my head. Encephalopathy can occur if your liver is struggling even if you don't have cirrhosis but it's unusual & unlikely in your case given your history of drinking.
People that are skinny need to eat frequently otherwise they risk getting low blood sugar (hypoglycaemia) in situations where they are constantly having to make decisions such as at work. My feelings of stress at work greatly reduced after I started eating frequently. The link in my first post explains this.
A routine one off course of antibiotics shouldn't prove harmful to your liver regardless of it's current state. Obviously you having liver disease makes fighting infection difficult so teh tablets will help you shift the current infection.
My hubby (with cirrhosis) has had courses of antibiotics since diagnosis for things like a chest infection and infact is on antibiotics every day now for life as he has a non-viable spleen so takes Phenoxymethyl Penicillin to support his immune system.
Your doctor obviously feels you need the antibiotics so it's best to take them and get rid of your infection.
Still ticking along, not long back from a holiday in the Highlands of Scotland where we both cycled about 300 miles on our ebikes over some pretty techie and hilly terrain. He has his down/more fatigued days - today being one of them though probably because we did a 21 mile ride on Wednesday followed by him getting a pneumonia jab yesterday. He was in bed before 5pm tonight, up for a bit of tea then back in bed at the back of 7. Also, not been sleeping too great of late (pretty normal in summer time when it is that bit warmer and lighter too).
His consultant is delighted with his stability (now 7 years since he was delisted from t/p list).
If you go to Healthunlocked latest, there is a post there about dealing with sleep issues. I'm not sure if there is a sleep hypnosis video recommended, but there is quite a lot of suggestions that could be worth looking at. All the best
If you go to the shape to the right of the house, left of the speech bubbles and click on that, it will come up with communities. Type in Healthunlocked Latest, which will take you to that community. It's under" world sleep day" .
Alternatively, go to top right where it says "Search HealthUnlocked". Type in "HealthUnlocked latest." It will take you to a page where you can choose Coomunities. Click on Communities and you will find the Community called HealthUnlocked latest. Hope that helps
The one I use is so old I digitised it from a cassette audio tape. It came as an accompaniment to a book 'Stress Control Through Self Hypnosis' by Dr Arthur Jackson published in 1989. The author I believe is deceased now. Jackson is a professional hypnotist who puts you through a hypnosis session where you relax the body progressively & then you relax your mind. I've modified it using Nero Wave Editor increasing the length of parts of the tape where you hear the relaxing sound of waves crashing on the shore of a beach. The long version I've made goes for almost 3 hours. I've used it to relax rather than to go to sleep because sleep has never been a problem for me. When I checked on YouTube there are many similar types of audio sessions available for free.
Two things popped into mind there and one you mentioned, blood sugars, have you been tested? The other one (I don’t know if you are male or female) is hormone changes. I have mild encephalopathy and I have hot flashes, shaky hands, then feeling so hungry I feel I could faint but my doc puts that down to very early menopause and has never once mentioned it being caused by encephalopathy.
My last screening showed my glucose to be ok, but I haven’t had a true fasting test for blood sugars before. This has started after that screening and has only happed really badly once so far. I have had spaciness but not with hot feeling and hand shaking before. I altered my diet a bit last night and was better this morning, So I’ll see what happens with diet changes and if it improves.
Glad to hear your doc hasn’t mentioned this as specifically related to HE! I really hope I’m not going through menopause though... as a 36 y.o. male lol
Really can’t wait for my GI appointment to maybe get to the bottom of all this further.
Heheh it would be a shock. Men can have changes in hormones though so maybe just park that in your, to look at next folder. Hopefully though it is just your diet, it’s amazing really what foods affect us and are so different with different people. So maybe there is a common denominator in something, maybe just writing down for a couple of weeks what you you Eat and drink, if you take any tablets, exercise etc.. and how you are feeling each day you might find something that you had not even thought about. Try not to worry (that’s easy to say) you sound like you are sensibly looking into it. Let us know how you get on.
Hey there. The feelings of hunger pangs, fogginess and shakiness are also comoon symptoms of anxiety disorder. Not saying that is what it is but, as an extreme anxiety sufferer for almost my whole life I have had these symptoms pretty much since I was 17. It would make sense to have anxiety since you are really stressed about your health and also you only recently quit drinking. Alcohol supresses anxiety and panic can become very heavy in onset after alcohol is removed particularly when the body is deficient in B vitamins from alcoholism, especially B1 (thiamine). Even if you hadnt suffered from this before. These things dont need to be in the front of your mind to trigger the attacks either. They sit in the subconcious and can pop up out if nowhere.
As I said im not making a diagnosis here. But reading your post I felt the need to throw it out there that since your health liver wise seems to be in good shape as far as you know.. that it could very well be anxiety. Again Ive suffered with these same symptoms looong before I had liver disease. In fact my liver disease was from alcohol that I used primarily to self medicate the extremes anxiety was giving me. I was sick all the time and it was making my life literally unlivable.
Just for the heck of it, ask the doctor to check your vit b levels to see if that is adding to the feelings your experiencing.
Thank you so much for your thoughtful responses. It is greatly appreciated. I’ll be seeing my GP this morning and a GI for first referral on Friday. Gonna cross my fingers for good news!
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