Linter, I have been thinking about you today since I thought you would be starting the antabuse. A new start will do you good and while I don't want to come across as an enabler, with an impending move and the stresses that go along with that it will be a difficult time to quit. Lacking that can you at least cut back and start weaning off? I always went cold turkey and withdrawal was hell and likely dangerous. Best of luck going forward.

Linter, I think that reading Part 1 is a great plan :). This is just a thought but your neurologist sounds a bit muddled about the difference between CIDP and alcoholic PN to me.

On an unrelated note, it has been effing hot here recently. Today is predicted to be 34 C. I have lots of cold water in the frig and the drinking bowls for my cats are full.

My PN flared up a bit (not unexpected) but my ice packs have helped to keep it under control.

For what it's worth, that is OK and nothing to be ashamed of!! We are here now, we will be here the moment you are done with the drink and we will be here when you are recovering.

Better find a comfy chair and make sure your electronic device of choice is charged up! We are up to 116 pages now.... :eek:

okay, i read the first 10 pages of the big thread and, wow, icehouse, way to freaking go. damn. and from the depths of where you were, it's just terrific.

based on what i read, i ordered BenFotiamine and Jarrow's Formula B-Right, to be delivered today via amazon's same-day delivery service. so, i'll start with those and, based on what mrs. d mentioned, stop drinking wine and start drinking ultra-clear skyy vodka.

one thing about my drinking is that if i take antabuse, i get no cravings or any other kind of withdrawl symptom. i've had various complications in my life that've led me to be binary in the extreme. i'm either on or off. i'm either drinking a crapload or i'm drinking nothing at all. i'm not good w/ moderation. that being the case, i think i could quit drinking without antabuse (and i once went 19 years without drinking) but when i do, it adds a little insurance.

i do love drinking, though, especially by myself. yeah, i know, not good, but what can i do?

Yep Linter, there are a lot of inspiring stories in Part 1.

From what you have said it seems to me that you are not physically addicted to alcohol. This fits with my experience - I quit cold-turkey when I was in the psychiatric hospital with nothing apart from some minor sweating - I was monitored closely by the nursing staff during this.

It might help if you kept a daily mood diary. You could use it to keep tabs on how you are feeling and how much you drink each day. That could help you to spot the triggers which lead to your drinking and then work out other (healthier) ways of coping with them.

Right. And that gave me another thought...

As always I have to start by saying I'm not an expert, but , indeed, given that linter seems to "switch" addictions, I would carefully suggest that the problem probably isn't alcoholism as such, but a deeper underlying condition (like depression e.d.). What struck me were the words "addicted to my (ex) girlfriend". It seems that both the girlfriend, the alcohol, the smoking, were partly to fill up a "void" that comes from something deeper. This is no gospel, mind you, but very often with addictions, there is an underlying problem that needs to be looked at too. Otherwise, chances are you'd switch from alcohol to something else in the future, if you know what I mean. (or keep relapsing)

A warning though: even when you are not yet physically addicted, there is a sort of "build up" effect every time you quit and start over again. Detoxing could be fine the first 4 times, and suddenly go very wrong the 5th time. If you can have somebody watch over you, and have a phone ready to dial 911 for when you start feeling really weird is always a good idea. I don't say this to scare you off, at all, but always be careful with detoxing.

Ideally, you would want to talk about this with your doc/GP to see if you could use some more help. He/she could also think about a short term med to help you avoid getting seizures. Again, the risk is small, but very real. Since I got sober I heard/read of at least 50 stories where detox went pretty badly, so better safe than sorry.

Nevertheless: motivation is key. Seeing there is a way out is key. So keep on reading too. ;)

And I would also support Kiwi's suggestion of keeping a mood diary. It can help to build an understanding after a few months.

well, it is true that i have an addictive personality and there are many underlying factors which i've tried to address, through therapy, almost my entire life, without a lot of success. the main psychiatric diagnosis for me has always been complex ptsd, which can happen when a triggering trauma occurs over a long period of time as opposed to being a one-time event. many folks in the mental-health community say that c/ptsd is just about impossible to deal with and such has been my experience. that said, with the help of anti-depressants and a double dose of zoloft (which helps with ocd, another thing i have), i'm fairly functional. but, over the years, on and off, drinking has been one of my more successful coping mechanisms, at least that's what i tell myself.
of course, the problem is that it's led to alcoholic pn.

the mood journal sounds like a good idea but nothing triggers me to want to drink. when the clock strikes 5 pm, i drink.

all this said, i will be back home on the east coast in ten days, and i will start antabuse again at that time, and then i can assess what damage this current round of binge drinking has led to.

Linter, have you talked with your doctors about possible negative interactions between alcohol and the prescription drugs that you take? If you would prefer to do this yourself, the "Interactions Checker" part of this site contains this information Drugs.com | Prescription Drug Information, Interactions & Side Effects.

Negative interactions, both between your different prescription drugs and between them and alcohol, could be significant.

Well, day one of PT was today and I have already shown minor improvement (in only 2 weeks) after being assessed via a bunch of balance, motor skills and neuro tests. I was given a regime of daily exercises (which I actually did) and was tested today.

The doctor tossed around the "alcoholic cerebellar degeneration" term a couple times and we did more tests that involved more spacial and eye tests.

I will be going back in two weeks for another assessment after another two weeks of at-home exercises and such.

The goal is too train other parts of the body\mind to compensate for the neurons I have killed off. He also told me to get back on "thiamine".

The above term is defined as: This condition occurs when neurons in the cerebellum deteriorate and die because of the damaging effects of alcohol. The cerebellum is the part of the brain that controls coordination and balance

Well done Icehouse :)!

My psychiatrist prescribed thiamine after I quit.

Fascinating. To quote myself from a few pages back, guessing what it could be:

:cool: :D I was almost right.

Awesome! I'm supposing they did find a good regimen of PT that helps this occur, and rather more quickly than I thought it could. :eek: Of course, if they have you do the PT at home too, on a daily basis, it may speed up the process in a big way.

Difference could be - and maybe it's something you might want to ask, just out of curiosity - that the damage in your case is not so much in the motor nerves (we always think when we hear PN that it's the nerves themselves that are damaged), but mostly in the brain itself. It also could explain why you never felt any pain; your nerves (both motor and sensory) may actually be totally intact, and the PT regimen further "repairs" the damage in the cerebellum by letting other parts of the brain "take over"!

The B1 recommendation is interesting too. I know that in Japan they are very big on that when they start treating alcoholics (even before they develop PN). It may be that they are targeting the brain with that, rather than the nerve endings.

I'm actually starting to believe this could really be your golden ticket - but works specifically in your case. It just shows again that "PN" can have many many forms, and in your specific case there is a "cure". I now even wonder if your specific condition is called neuropathy at all. Instead, the diagnosis may be: "alcoholic cerebellar degeneration". (makes sense)

Whatever the answer to that, the most important thing is that it seems to work! Very happy for you!

Yes, it could be! But, I will just play the game until I see actual improvement and rest assured you ALL will be up to date on the progress :)

20 minutes a day of "exercises" (10 in the morning and 10 at night) and a PT appointment every two weeks is my new plan.

He will tracking my progress with all the fancy-shmancy machines and charts so I will be able to see the numbers as they change.

It is kinda exciting!

Icehouse, thanks for the update. I was wondering when the program would be starting. It sounds very encouraging but I gotta say, as much as I think about nerve damage I rarely think about the damage to the brain from alcohol abuse and that is a sobering thought. I suspect there are few organs that are not affected to some extent. Sounds like you will be running marathons yet.

If I have my facts straight (which is questionable) I am under the impression that when alcohol is ingested it affects the brain first (the neurons) and thus, over time, the abuse of the pathway between the neurons (neurotransmitters) has an affect on the entire nervous system. The nerve endings (feet and hands) probably take the brunt of this damage and therefore we have PN.

I am not a fan of running, but if I can jog, snow ski and dance again I will be more than happy :)

Nothing big to report, except that I was able to drive to Paris & back last Saturday, on the same day, without too much discomfort from the PN. That's over 730km in one day, and a new "record" since I got sober. In the first year, just driving to the store 10 minutes away was difficult... So, although progress is not linear, and I certainly still have less good days too, I did something I wouldn't have been able to do say 2 years ago, let alone 5 years ago.

Just don't ask me to do this 2 days in a row though. ;)

Good to read Wide-O :).

2376 days sober.

My next PT appointment is on Tuesday and the gaggle of balance exercises are getting a little easier. I actually walked outside (at night) and was able to look up at the dark sky and focus on the stars without a need to hold on to something (or someone).

It's the little things....

Sounds very promising to be honest!

Little things... yeah. Like the first time I could put on a sock standing upright without having to hold on to something. Sounds ridiculous at first sight, but it was a huge step for me. I gather this is something similar, right? Things that "normal healthy" people take for granted, but somehow for us is like "wow!". :cool:

That is excellent Icehouse :).

Precisely! It's amazing what our "normal" becomes when something is disabling us and making our "normal" difficult.

I can't wait to run again!!! I hate running, btw, but I just want to be able to do it!

icehouse: how often do you do PT? i'm looking into it right now and can't shake the idea that 1 x a week doesn't do much, two would be better and three would be ideal ... but very expensive. what's your take?

meanwhile, i've moved to the east coast and am back on antibuse. have a neurologist appointment tomorrow where he's going to assess the damage i've done to myself by drinking and tell me that it's permanent.

i already know i've damaged myself. i can't stand for more than five minutes without one leg or the other crumbling. and my balance is crap. and i've started using a cane. and i can no longer stand up paddle surf. and i still haven't gotten over that california girl that i had to dump. sheesh.

ok. but ... onward!

Linter, I hope that the meeting with the neurologist is helpful :).

Currently every other week...not enough, but it's all I can afford right now until insurance kicks in.

Linter, but having done therapy before, you can be given exercises to do at home and the follow up appointments are to monitor your progress and advance as needed. I believe that is what Icehouse is doing more or less. Once a week could well be more than adequate for an issue such as this. You were so lucky to get in to see a neurologist so soon. In the past I have had to wait several months to be seen. Best of luck with the appointment.

Yes, I have about 20m of exercises I do daily (mostly balance and coordination related) and my PT guy said I am already showing improvement.

My at-home exercises will become increasingly more difficult over the next few weeks\months as my balance improves.

Icehouse, that graded approach sounds good to me.

I'm going to quote this specifically, because in a way it is a huge misunderstanding that has caused a lot of unneeded grief over the years to millions of people.

He or she will be right in one way: there will be damage, and that damage will never heal.

The word they forget to add: COMPLETELY.

If this thread shows anything at all, it is that - although yes, there will also be some damage left that will not go away - you can do a lot of things to improve it massively.

If I think back of the pain, fear, debilitation, humiliation I felt at the moment I heard that exact same message (he didn't even say it directly to me, but to a student/assistant standing next to him, as if I was an idiot who wouldn't understand anyway), and then where I am today, and what I was able to achieve, I'd want to go back to the guy and smack him in the face. (well, OK, just shout at him then, it's just a matter of speaking on how angry this makes me in hindsight ;)).

One of the goals I set myself when I got involved in this non-profit addict support group is to convince the neurologists that they need to adapt their message. People simply get crushed by it. If they are still drinking, they will go "what's the point of even getting sober if I'm always going to feel this pain or can't even walk?" And if they are sober, they might wonder if just starting again to forget the debilitating pain isn't a better option.

Think about it: it's the worst possible way to say to someone they have an illness that can be *managed* - provided that the patient stays off the drink.

There are no miracles, they say. Unless you'd want to call the story of Icehouse one (I'm using him because it speaks most to us: from wheelchair to worrying about having a better balance while hiking or running again). My case isn't all that different: from a debilitating pain and hardly managing to walk 10 meters a day (office to bed to office to bed... and thinking about getting a wheelchair...) to rebuilding a big part of our house, starting a veggie garden, managing the upkeep of the whole house. From being unable to drive at all because I couldn't feel the pedals through my pain, to comfortably drive a group of 3 people to Paris & back in one day (730km).

(I even got a speeding ticket darn it! 143 where 130 was allowed. €45, so it wasn't that bad, but in a way I'm proud of that ticket! ;) )

So... don't let that sentence drag you down. Concentrate on staying sober, be patient, and start doing what many of us did: look at your food, vitamins, PT, optionally medication, and improve step by step. Not everyone will "heal" at the same pace, or even with the same results, but improve you will. :)

Remember that when you hear the "verdict".

Linter, I think that Wide-O, has (as usual) offered you superb and encouraging thoughts.

Please read them carefully to help them sink in.

Wide-O, OMG, so soooo glad I logged on! I have been so despondent and fearful for the last couple weeks. The PN is very bad, I am coping sober with all kinds of major annoyances, stresses, disappointments, and money issues on top of my limbs getting worse. I often walk the line and wonder if any of this is worth it.
I thank you Wide-O for your post. I am guessing my higher power guided me to this site just now. I had my car keys in my hand and was almost out the door but now I believe that things CAN get better and this terrible PN pain is from the nerves healing as opposed to further degeneration.

Hello friends. Life challenges me and takes me to the brink, but then I log on here and see the words and inspiration that I need to stay the course. Everyone needs to know they are making a difference in the lives of others. Know that you all are making a huge difference in mine. I thank you for that.
Linter, I hope you will get back to us. I for one am wondering how you are and what the doc had to say.
My PN is very bad again today but mentally I am accepting life on life's terms. You all give me hope but I am hesitant to post lately as I decline. I seem to be getting worse and I don't want anyone struggling with PN and sobriety to ever give up hope. Talk about a buzz kill.

We got you....my wish is that you will never, ever, feel ashamed to post. I bet that a couple of us would even PM (or text) with you in your down times if that would be beneficial.

I, for one, am proud of you.

SC, I want to echo Icehouse on this.

It is almost always a matter of "two steps forward, one step back". I think you are doing really well :hug:.

If ever you want to talk with me in private, you know where my PM box is :).

Never hesitate to post, and if some things feel too personal, I see a few PM invitations there! ;)

Also, don't think that you *have* to immediately improve. From what I can tell, you are in a lot of stress, in a volatile situation, lots on your mind. Stress affects us on so many levels, even scientists are still amazed about it. It's not just a "feeling", there are so many hormones triggered by it, it can be easily measured with a simple blood panel. Cortisol- a hormone - is a prime example. Its production is triggered by stress, and to put it bluntly, too much cortisol makes us "stupid, tired, and fat"). I'm also pretty sure it makes PN (feel) much worse.

For a funny read-up on how that works, there's this. How Stress Can Make You Fat | Mark's Daily Apple Not saying I agree with everything he says, but it's a good primer to understand the role of stress.

I know, you can't just avoid stress like that. Stuff happens, and it drives us crazy with stress. But trying to find a way to handle that stress, carving out some time for you to relax, meditate (even 5 mins/day). That mood journal kiwi talks about often? It's one way of slowing down the day and look back to see what happened, how it made you feel, and how to deal with it better next time.

So, recovering (or simply not feeling worse) may take a bit longer for you. (or not, you don't really know yet). Remember, I was at my worst after 8 months sober. But I somehow used my stubbornness ("I will *swearword* beat this!") combined with acceptance ("Hey, but if it doesn't work, tough luck, I gave it my best") and slowly ... there were some (small) improvements.

Furthermore : don't forget, our mind plays tricks with us. When you get a bit better, and then have more pain again, if often feels like you are back to zero. Often that's not the case at all, it just feels like it. It is indeed, like kiwi says, a 2 steps forward, one (or even one-and-a-half) step(s) back.

Even I still fall for that sometimes. I get up, feel a lot of pain, and think "damn, it's just as bad as 6 years ago!". But then I think about it a bit more, about how much worse the pain actually was back then (like, 10-fold...) and realize I'm just falling for the old negative thinking again.

Your post is a good lesson for me as well: I should avoid inadvertently giving people the feeling that they *have* to immediately feel improvement, and somehow "fail" when they don't. Needless to say that is not the case. There is no fixed time line.

So in short: when you feel bad, post that you feel bad. This is not a good news show. We are not selling anything to anybody. We're just saying: don't give up hope. :hug:

You guys are the best!!!:grouphug:

It's been quiet here. Hope you all are out and about and living life. As for me I will need force myself to get up and out as I need food. I will see how that goes but likely that will be all I get accomplished for today.

I have found that even limited physical activity brings on worse discomfort in the evening and also the fear of falling is always present so I find myself being very sedentary. I know I need to push myself a bit more. I save my strength for the things that need to be done on a given day but I know that if I am going to improve I will need to get some circulation in my limbs going. Perhaps a simple short walk a day should be my highest priority. Perhaps it was all Icehouse's walking that lead to such a miraculous recovery?

I am FAR from a miracle...I am just a guy that takes it one day at a time, putting one foot in front of the other (unless I walk backwards, can't do that yet) and I refuse to let life tell me I can't do something.

But, walking helps for sure! I have to admit that I live in an amazingly beautiful part of the USA and having the Blue Ridge mountains in my backyard is quite the motivator....

Wow Icehouse, you live in a beautiful part of the world :).

SecondChances, I think that starting with a short walk every day is an excellent plan. You can then, slowly, build up from there.

I am so glad alcoholism chose this part of the US for me! I am not sure what would of happened if I had woken up in Detroit, LA, NYC or <gasp> West Virginia... :D

Too bad the booze did not choose Hawaii....oh well.

Try Belgium. :eek:

I was offered a new job this week (damn head hunters), so don't be surprised if I show up in Belgium one of these days. Hope you have a spare bedroom....