I was also on 40mg from May 2007 until roughly summer 2011. Things eventually got better and I started suffering extremely low blood pressure, but very sporadic, never showed during testing.

I passed out many, many times. I was careful, stood up slowly, made sure I wasn't dizzy or light-headed, but sometimes up to a minute or more later, would just drop like a rock.

Suffered some pretty major injuries, tore my rotator cuff (two operations and a year of physical therapy to fix), multiple lacerations to my head (staples, stitches, glue, bandages and once even no repair, just let it heal, which is oddly the only one that left a scar). Broke three ribs, chipped a tooth, all sorts of fun stuff.

The doctors finally realized it was blood pressure and the fact that my heart would skip a beat here and there, causing the unconsciousness.

Dropped the nadolol completely, but then the varices started returning. No bleeding, but was being scoped every six months, so they were caught in time.

Went to 20mg and everything settled down, until this past July 4th, when I passed out again, first time in two years, this time while driving, which had never happened before. I got very lucky and didn't hit anybody, but did a major number on my front left wheel, $500 to fix.

Doctor didn't want me to go to zero again, so now I'm on 10mg, which aren't even made, I have to split the pills as best as I can.

MRI next Friday, so we'll see how I look internally. Have had an MRI every six months for 6 1/2 years, the past three years or so always showing new venous growth, but with my varices settling down, don't have another scope until next spring.

Like I said, tried no nadolol for a while, but may have been to early. I'll ask my GI about stopping again, see him about a week after the MRI.

Just as my doctor visits were finally settling down to quarterly, now I'm back to seeing my PCP and GI monthly.

I was started on Nadalol but in the first 3 weeks my hands were shaking so bad, I couldn't stand it. I was taken completely off and have done fine.
My GI told me when he did the scope in January (when I was diagnosed) that I had one small varicie, but too small to band . My last sonogram, 2 weeks ago, showed perfect flow from the portal vessel.
Everyone is different, I would check with my GI. Good Luck :)

I have, I'm sure a very nave, question. I also have portal hypertension. Does this always lead to varices? for those that don't know me and just in case it makes a difference for the question.. I am esld/cirrhosis decomp'd etc. etc. If it does are there signs other than bleeding that you can look out for? a strange feeling etc?

Shelley

oh, I forgot to add... Wilbur maybe you need to start carrying around a case of duct tape to wrap yourself up with after you come to again. ha haha. seriously though, I've been praying about that, your passing out, not the duct tape although that does make for a funny visual especially with your avatar. ;)

Shelley

Thanks Wilbur, I think a preemptive scope and a couple of follow ups would tell me if I am on the right track. Drug resistant depression for years and lately, lethargy and bone crushing fatigue are wearing me down. I want to see if the beta blocker nadolol is contributing to this depressive down swing. I've lost a lot of muscle mass so I would like to start a vigorous exercise regimen before I get any weaker. The daily guilt of not participating in my own family is driving me crazy. Anywhooo....

Sevetts: For reasons unclear, cirrhosis presents with major symptoms that differ from person to person. Some believe it is the area of the liver with the most damage that determines which big symptoms you will end up having. (dated info)
If I remember correctly, only 20 - 30% ever have bleeding varices due to portal hypertension. Two years ago I was meld 20, and yet I have never been jaundiced and I have never had Ascites or H.E.
I dont know if portal hypertension guarantees bleeding varices.

As for signs other than bleeding and black stools,
My own:
"Pica" or the compulsion to consume non food items. Pica is a eating disorder that is closely associated with anemia and or internal bleeding. For me it was chewing ice cubes constantly like a mad man. Also popcorn. I dont even like popcorn. 5 bags of microwave popcorn a day leading up to a ICU stay.
Worsening but subtle "wheezy" sounds when exhaling. Like a whistling obstructed sound at the very end of a full exhale. Sort of like phlegm stuck on your throat produces different sounds. This was very subtle and mostly noticed at night laying still. (I had esophageal varices.)
Sudden racing of heart beat while fully relaxed and laying down.
Sudden strong urge to throw up that goes away as fast as it came.
And my personal favorite, sudden unconsciousness upon standing up, being able to remain conscious only by laying flat with my head being the same height or lower than my heart. This would happen upon first waking in the morning, after bleeding throughout the night.
With esophageal varices, the sudden urge to throw up is the gag reflex from your throat filling up with blood. Because eventually, you will throw up. And it is alarming to say the least.

Apologies for this lengthy post.I think I got caught up in nostalgia...
after all, it has been over 13 months since my last bleeding episode!! Woo hoo!
This group has proved to me that cirrhosis doesnt have to be a death sentence.

Thank you for all of the info Levicah. No apologies necessary, I appreciated it. :) The nostalgia thing made me laugh. I love a good sense of humor. It sure seems to help.

It's funny that you mention the no jaundice thing because I was wondering about that. If everyone gets jaundice. My meld is amazingly 7, but I do have ascites, mild HE and portal hypertension, but no jaundice.

Yeah! Congrats on the no bleeding for 13 months. I'm very happy to hear that. I hope it continues. :)

I love reading other peoples stories. It can be so inspiring and gives me so much hope. I too learned through this site that this disease is not an automatic death sentence and other sites since as well. Positive attitude, knowledge and hard, diligent work and in my opinion faith and prayer can do amazing things. I do wish you had a regular Doctor. But as you say, it is what it is. That's something I say a lot lately. We all have our hurdles and road blocks to go through. It's nice that we have sites like this where we can help each other, share information and experiences and support each other. Without the people on these sites I'd be a mess.

Thanks so much for answering my question and sharing your experience. I hope that you are feeling well. I will keep you in my thoughts and prayers.

Shelley

I've gone round and round with this too. I hate feeling zoney. I slowly made my way down to 10 mg and had a massive bleed. Now I am more compliant.

I did discover that it peaks in your bloodstream at 3 hours. I take mine at bedtime so that most of the effect is gone by morning. Slight hangover, but not bad. My transplant doc said that most bleeds are at night and agreed with the decision.

So I take a while 40 mg at night. I use a blood pressure cuff and check my pulse throughout the day. My pulse is staying around 60-70 which is good.

I too enjoyed reading all of your stories. It helps me to know that we are all trying to avoid making new varices, or avoiding a bleed out. Your tips are helpful.
Wilbur, I can't wait to hear how your mri goes.

One thing - I have varices in my stomach that cannot be banded, so I will never be able to get off of Nadolol. I have NOT formed any new ones. This makes me think that if I didn't have the stomach varices, I might be trying to control varices without the Nadolol.

I will say that I learned the hard way not to dose reduce. Losing 7 pints in 10 minutes left an imprint on my brain. haha. PTSD. Really.
I love you guys..
xo Karen:)

Thanks everybody.
I do believe I will count my blessings and take my medicine like a good boy for now.
Have a great evening.

To add to the bleeding stories here, my first bleed which landed me in the ICU for four days and another 8-9 in a regular room were esophageal.

Maybe not pleasant, but this is reality. Never once had the urge to throw up. Blood flowed the other direction, through my stomach, intestines, etc. and came out the other end, literally as blood. There was no black stool, it was pure liquid blood.

Oddly I remember it happening, but by then I had lost so much, the brain wasn't functioning. Just thought it was something my doctor should check out, so I literally called a friend and asked me if she could give me a ride to my doctor's office later that week, didn't even recognize the seriousness of what was happening.

For some reason she did and could tell something was terribly wrong. She lived a few miles away and within ten minutes she came by and took me to the ER, where I immediately passed out twice and didn't wake up again for four days. I would died without her help.
-----------------------------------------

Second bleed was from a stomach ulcer about eight months later, which they now confirmed as "gastropathy". That one I felt, and it hurt, but I only vomited up about a tablespoon of blood, so stupidly figured it was minor. Unknown to me, my stomach had filled with three units of blood, more brain issues, so didn't realize how serious it was. What should have clued me in was the fact that I drank three quarts of lemonade in about two hours, apparently causes massive thirst.

After about three hours and the pain not going away, called the same friend and back to the ER. They gave me this little tiny cardboard thing to vomit in, which was a joke, because now I was experiencing a lot of vomiting blood (and yes it does look just like coffee grounds). I ended up vomiting into the sink until the doctor finally saw me.

Another ICU stay, regular room again, massive transfusions and fluid, several endoscopies, but they couldn't see anything my stomach was so full of blood.

Odd part about this bleed, was the blood didn't pass through me immediately like my first. This stayed with me. Don't know if this is true, but one nurse told me blood is toxic to the digestive system.

It took almost five days to pass and was incredibly painful. These waves of pain would start up in my neck and travel down my spine to my waist about every 10-15 seconds. I was getting morphine about every three hours, round the clock, and the routine started to get pretty annoying to the nurses. It wasn't me, but the way the morphine was administered. It took a nurse every-time my dosage was due, so they were a little ticked at the doctors.

Finally was approved for a PCA (patient controlled analgesic). The little machine where you push the button when you think you need it, but by the time they got approval for that, the last of the blood cleared and I was fine.

As "britlitcutie" stated, these can't be banded. I've been on Prilosec for several years now, the "gastropathy" is mild and they're aren't worried any longer.

Brit, can't believe the loss of blood so quickly. I lost a lot of blood but both times it was over the course of a few hours. Just goes to show, if you are bleeding internally, get it look at immediately.

My choices were very dangerous, especially the second one. I did vomit up a bit of blood, but thought it was just a "little", nothing to be worried about. So, so wrong.

WTC I've never heard of new venous growth, good, bad, or nothing at all. This Thurs is my bi-annual MRI than follow-up with GI next week I'll b sure to ask, in the mean time any info would be great

Got results from my MRI last week, everything good so far. Also did my usual blood work. Only thing that stood out was my Vitamin D level, very low. I take a 2000 unit pill daily, was told to up that to 4000 units. If that doesn't help there is a prescription version that is a different formula, much stronger but only needed once a week that they'll put me on.

Still the standard development of new blood vessels. Apparently over time they develop to bypass areas where the blood pressure maybe to high, so like water flowing down a hill, they find the easiest route. GI doc and the radiologist who evaluates the MRI says it's completely normal, actually a good thing, since the pressure on the portal vein is being relieved by blood-flow finding better routes.

Since I'm now down to 10mg of Nadolol, they've bumped my "scope" up to early November. 40mg caused my passing out episodes, zero caused varices to start developing, 20mg was good but then I passed out two months ago, so we're trying 10mg to see how things turn out.

Hopefully no varices when I get the scope. My last one showed no new ones, just slight scarring from the older ones they had banded.

Quick price question Nadolol. It has always been a very cheap medication. My last 90 day refill was $20. Went in a few days ago and Walgreen's had raised their price 7X, it was $140, for 90 20mg pills. Luckily I have to cut them in half, so no sticker shock for another six months.

WTC is that called venous shunt where the blood finds new paths to relieve pressure, also resulting in less cleansing of the blood? Leading to HE. I think I may have read that somewhere or I have it all wrong.

datsm, I think you may be thinking of TIPS, which is a shunt inserted that does by-pass the liver, resulting in some people with increased HE.

I'm getting natural blood vessel growth, within the liver, so the blood is still being cleansed.