Going to drop down on Bac dosage- no other option

[COSGringo]

So I went up to 260mg and the worst of the SE's started again. Twitching, can't speak. Sort of like a severe sudden version of Parkinson's. Day 2 went down 10 mg but I still feel like junk. I never hit my switch but it was helping. However once I got on the really high doses I felt so bad that by early evening I felt a need to drink to get some relief.
I am going to drop down until the SE's subside and I can sleep in my own bed again. That would be nice since it has not happened in a long time.
I am hoping a lower dose and some will power along with getting healthy will do the trick. I find it almost impossible to exercise or go hiking and such since I got to the higher doses. I was going up 10mg only per 5 days so I was taking it easy and I think it was just becoming a real downer. Nothing works for sleep or anything.
So I am hoping to get down to maybe 180mg or less and keep off the anxiety. Control the drinking and get healthy. I can't seem to do my hobbies and I am lucky to even do my job lately.
Wondering if anyone else went through this and the healthy thing coupled with lower dosage did the trick?

[Greg]

Going to drop down on Bac dosage- no other option

Perhaps Topamax could be helpful, if you can't get the required benefits from baclofen? Sorry to hear that it's not working out too well with baclofen. I am still trying to handle insomnia from it, and am relying on Antabuse most of the time. Many others here have more experience with baclofen than I do, so hopefully someone else can give you a better answer.

[BillF]

Going to drop down on Bac dosage- no other option

COSGringo;1312300 wrote: So I went up to 260mg and the worst of the SE's started again. Twitching, can't speak. Sort of like a severe sudden version of Parkinson's. Day 2 went down 10 mg but I still feel like junk. I never hit my switch but it was helping. However once I got on the really high doses I felt so bad that by early evening I felt a need to drink to get some relief.
I am going to drop down until the SE's subside and I can sleep in my own bed again. That would be nice since it has not happened in a long time.
I am hoping a lower dose and some will power along with getting healthy will do the trick. I find it almost impossible to exercise or go hiking and such since I got to the higher doses. I was going up 10mg only per 5 days so I was taking it easy and I think it was just becoming a real downer. Nothing works for sleep or anything.
So I am hoping to get down to maybe 180mg or less and keep off the anxiety. Control the drinking and get healthy. I can't seem to do my hobbies and I am lucky to even do my job lately.
Wondering if anyone else went through this and the healthy thing coupled with lower dosage did the trick?

Geez, man. Obviously bac doesn't work for you. Titrate down and and off and try something else.

Do you want to be totally zonked on bac, or be a functioning alkie with a job and a life? If bac really works, then it may be worth the risk, but there is *no* evidence that it works at all!

[COSGringo]

Going to drop down on Bac dosage- no other option

Thanks, guess I will lurk the threads for more info on Topamax. I can get Antabuse from my doctor. That and Naltrexone which I had mixed feelings about but I was still drinking.

[GingerDust]

Going to drop down on Bac dosage- no other option

COS, sorry to hear that. You put a gargantuan effort into it. Like I said before, many of us found HDB to be unworkable but use baclofen in lower doses in conjunction with other things. Red is having success using baclofen and naltrexone together. Several people are using topa too. Just keep trying. You'll find a fit that works.

[COSGringo]

Going to drop down on Bac dosage- no other option

I am fine with it. I just knew this last step up was really bad and to the point I felt like I was dying.
I am going to try a combination. I think things will be even better. I don't want to completely rely on this drug anyways.
Thx

[Ne/Neva Eva]

Going to drop down on Bac dosage- no other option

On January 25th, 2011 I sent this email to a doctor we all know:

Dr. xxx,
I am full of despair after our converstation yesterday evening.
I think I may have downplayed the side effects I've experienced during this process. I have had 'dreams' that I did not distinguish from reality for up to a day following the dream. And many more less extreme but still disturbing side effects. Not the least of which is increased anxiety at the current level. I also have insomnia, and profound somnolence. My body hurts and I'm exhausted. Physically, emotionally and financially I'm spent.
The thought of staying at 260mg/day indefinitely is overwhelming and frankly I'm not sure it's possible.
We did not have a chance to go over the fact that I had a a full CBC last week and received the results on Monday. I have an elevated WBC (16.5) and elevated neutrophils. I am extremely concerned that my primary care physician is going to insist that I stop taking baclofen. Or that the course of treatment will interfere in some way with taking baclofen successfully.

I have exchanged emails and messages on mywayout with ****. He has said that he would help me. He also said that his patients reach indifference in a matter of days, or weeks at the most. I would like to enlist his help in order to reach the goal. I'm afraid I cannot go on with the current recommendation that I stay at this level for weeks, or longer. I'm afraid I can't sustain it. After 4 and a half months of slogging through life-altering side effects. I am feeling rather hopeless.

The response (from both doctors that I reached out to) was that the SEs were unrelated to baclofen. One of them suggested that if I was going to give up I should go down very slowly.

I shared my concerns and fears and frustrations on here, and everyone who had reached indifference before me, everyone who had sustained relief from their own slavery to the bottle, all the people I trusted, said "GO UP!"
So I did. Against better judgement. Against what I thought I could live with. I went up to 320mg in 9 days.

Since February 3rd, 2011 I have been drunk maybe 7 times. At least two of those times were fun!
I drink wine with dinner or have a cocktail with friends once or twice a month. I have a full liquor cabinet and we keep nice wine in the house for company. We also keep cooking wine--mostly because between the two of us we can't finish a bottle.

I would not change those 9 days for all the money, all the time, all the anything in the world.

And then, inspired by my happiness, my husband got sober with baclofen.

Since then life is absolutely everything I could have dreamed of and more.

And 320mg was WAY easier than 260mg.

Just my experience.

Just sayin'

[COSGringo]

Going to drop down on Bac dosage- no other option

I know it worked for you. I think that's awesome. I am just not functional at some points. I had 2 hours of sleep last night. I have drank 4 cups of strong tea and some energy supplement just to get some work done. Of course I've been working since 3 am.
2 nights ago I was feeling like I was going to drop dead. Chest pains, tremors, you name it. And I only had gone up from 250 to 260. I just can't keep going that route. I am afraid I may really get sick.
There are times I feel so bad I actually want to drink. I think I do better at the lower doses and I will work with that.
Thx for the feedback. That doc is not really helpful. I made an official appt with him before. It was $130 for 30 mins of me making conversation and him eating a sandwich. I am going to go lower then bring it to my primary doctor. I need to make some real progress like some non AL days and I am going to get a liver test first. I figure if I am doing better, my liver test is good, he might be more receptive in working with me. I might get back on the Nal too. He gave that to me before.
I am not dropping the bac just need to get back to normal. I haven't slept in my own bed in weeks since I would just keep my own wife up. I am more miserable than ever.
I will see what I can do with a lower dose and getting healthy. I just sit here and work all the time and cook a lot. Guess it is nice to have wine sitting around I can cook with and I don't just chug it down. LOL

[ifulovelife2]

Going to drop down on Bac dosage- no other option

COSGringo;1312608 wrote: I know it worked for you. I think that's awesome. I am just not functional at some points. I had 2 hours of sleep last night. I have drank 4 cups of strong tea and some energy supplement just to get some work done. Of course I've been working since 3 am.
2 nights ago I was feeling like I was going to drop dead. Chest pains, tremors, you name it. And I only had gone up from 250 to 260.

I'm no doctor but I'd suggest you look to the massive caffeine intake for the chest pain and tremors. Never heard of those as SEs of baclofen.

As I said to you on another thread: personally I'd drop another 50mg for a few days and see what happens before I chucked in the towel. Probably just me though.

[COSGringo]

Going to drop down on Bac dosage- no other option

Well the caffeine is just in the morning. I get this late at night well at least when I was at 260. More muscular I think. I am going to drop a bit and when I feel a bit normal stay there and reassess my next steps. I think if I could get "normal" again I could do the things I love like getting outdoors. Now I just work 12 hours and sit in front of computers.

[spacebebe01]

Going to drop down on Bac dosage- no other option

Hi Gringo, I have kept up with most of your posts but not really talked to you because of not doing the HDB so having no idease or advice. You have been so determined I really did think this would work for you.

When you are going down slowly you may find somewhere comfortable on your way down and decide to try again. Or there are a few of us who take bac at a lower dose and combine it with other meds, whatever you decide to do I wish you the best and I also believe that you will find something that works by the determination you have had so far.

[Ne/Neva Eva]

Going to drop down on Bac dosage- no other option

COSGringo;1312608 wrote: I know it worked for you. I think that's awesome. I am just not functional at some points. I had 2 hours of sleep last night.
...
That doc is not really helpful. I made an official appt with him before. It was $130 for 30 mins of me making conversation and him eating a sandwich.
...
I just sit here and work all the time and cook a lot. Guess it is nice to have wine sitting around I can cook with and I don't just chug it down. LOL
I understand and I had a very similar experience. I'd offer suggestions, but I think I've said it all before and it seems as though you have a good plan. Baclofen on a regular basis, at regular doses, seems to help in general. People are reporting longer sobriety, and more contented sobriety, on LDB than they have ever experienced. I suppose that other things help, but given the lack of success with some of the other treatments in terms of research, I think the bac has a significant amount to do with it. (This is not because I believe bac is the holy grail. I don't. Bac sucks. But it works. And it is the single and only thing that does what it does. Period.)

I mentioned in private that I haven't attempted to get or incorporate information from that doctor concerning medical advice about anything since exactly January 25, 2011. His response to my email quoted above was unacceptable. To be completely clear, his insistence that there aren't SEs and that we should stay at switch dose is irresponsible and frankly possibly dangerous. He is a good source of legal baclofen. Expecting anyone to be able to help over the phone is...unreasonable. I love the man, and think he's a saint...But he's not my physician--for bac or anything else.

IMO insomnia is the number one debilitating factor in the bac scenario. People who sleep don't have the same SEs. People who don't sleep suffer.

COSGringo;1312636 wrote: Now I just work 12 hours and sit in front of computers.

hmmmm...

Hang in there, COS. It really could be that time is the great equalizer. That coupled with regular amounts of the stuff...Maybe even regardless of the amount. Who knows?

:l

[COSGringo]

Going to drop down on Bac dosage- no other option

Thanks Ne.
I agree with everything you said. I may even go back up at some point. I need to get a life though and right now it's non existent. No fun not being able to drive and not because of drinking. I have a sports car that cries at night from loneliness
.
The vivid dreams are killing me again. Thought I was done but I can't even tell reality from dreams anymore. When I do wake up it takes me a while to figure out where I am and many days I have no idea what day it is.

I find myself throwing some back in rapid succession at night to deal with feeling so bad. I know that is a bad idea but it's put me in that cycle.
I will make it through one way or another.