Cindi and Baclofen

[beatle]

Cindi and Baclofen

(EDIT: Please see subsequent post from me below, first, if possible)

Cinders;1095716 wrote: Well,

After much thought, I have decided to do the Nal/Bac combo.
Would be interesting to hear why and how you came to this conclusion. You say "after much thought", but care to share that thought process? Because, from where I'm sitting, it sounds like a desperate shot in the dark... but that's just because I have no idea why and how you came to this conclusion.

And I'm assuming you are doing this under the care of your physician. I guess that's a given in light of your constant urgings that other people always take meds under physicians' care, and especially in light of your highly special and critical health issues... still, I have to wonder why your doc is not willing to prescribe it if you are under her care. Or maybe she just can't?

Cinders;1095716 wrote:

The more I think about it, the more I think I want to nail this Beast to the wall.

I'm calling you on this one Cindi. It's not "the more you think about it..." This is not new. You HAVE thought about it for years, and you HAVE decided you want to nail it... and you HAVE tried for years. When you write something like this, it sounds like you have slowly come to this realization... like you haven't really tried until now. And suddenly introducing TSM (when I've seen very little to support that this works, especially in combination w/bac-- I may be wrong here -- I gave up on the idea more than a year ago after following others who were trying this combo approach) reinforces the impression that this is a desperate shot in the dark. But maybe not... hopefully not.

Cinders;1095716 wrote:

Meanwhile, I will continue increasing my Bac dos by 10 mgs/day.

Again, you are confusing me. I have never heard anywhere a protocol of increasing bac by 10mg/day. Please correct me if I am wrong. It makes no sense to me based on everything I've read here and heard form Dr. L and from OA's book. There seems to be unanimous agreement that you should stay at each new level for at least 3 days (Dr. L. says 7 days... 5 is not enough.) So this plan is quite surprising. Perhaps you have some information about this kind of titration?

I know you don't like the flowery, long-winded style of writing, but when you come up with a plan like this and spring it on us without much explanation (that I can see), I wonder if a little filling in the blanks might be helpful for both you and your supporters here.

Meanwhile, you know we are behind you 100%... I just don't want to see you set yourself up for failure by making and following plans that may be doing just that.:l (and you know I don't do that lightly)

[spacebebe01]

Cindi and Baclofen

I just want to pop in here to say Im following your thread cindy I dont think Ive been at this long enough to offer any advice but want to send my best wishes to you

[beatle]

Cindi and Baclofen

Hi Cindi,

I just wanted to come back and tone down my previous post a little -- without doing the editing/deleting thing that has become so rampant here (although I was once a prime offender).

I realize I didn't sound very empathetic, rather aggressive, in fact -- but you know me and you know I am not, and you know we are in this together.

Still, especially after the post from Mo, I can see that my post must have come as a big double-whammy for someone trying so hard and suffering so incredibly much as you are.

And I am very sorry for that!

Please just let us know what you are doing, why, and most importantly, HOW you are doing.

And, as always, you know where to find me anytime.

[Cinders]

Cindi and Baclofen

beatle;1096678 wrote: (EDIT: Please see subsequent post from me below, first, if possible)



Would be interesting to hear why and how you came to this conclusion. You say "after much thought", but care to share that thought process? Because, from where I'm sitting, it sounds like a desperate shot in the dark... but that's just because I have no idea why and how you came to this conclusion.

And I'm assuming you are doing this under the care of your physician. I guess that's a given in light of your constant urgings that other people always take meds under physicians' care, and especially in light of your highly special and critical health issues... still, I have to wonder why your doc is not willing to prescribe it if you are under her care. Or maybe she just can't?



I'm calling you on this one Cindi. It's not "the more you think about it..." This is not new. You HAVE thought about it for years, and you HAVE decided you want to nail it... and you HAVE tried for years. When you write something like this, it sounds like you have slowly come to this realization... like you haven't really tried until now. And suddenly introducing TSM (when I've seen very little to support that this works, especially in combination w/bac-- I may be wrong here -- I gave up on the idea more than a year ago after following others who were trying this combo approach) reinforces the impression that this is a desperate shot in the dark. But maybe not... hopefully not.



Again, you are confusing me. I have never heard anywhere a protocol of increasing bac by 10mg/day. Please correct me if I am wrong. It makes no sense to me based on everything I've read here and heard form Dr. L and from OA's book. There seems to be unanimous agreement that you should stay at each new level for at least 3 days (Dr. L. says 7 days... 5 is not enough.) So this plan is quite surprising. Perhaps you have some information about this kind of titration?

I know you don't like the flowery, long-winded style of writing, but when you come up with a plan like this and spring it on us without much explanation (that I can see), I wonder if a little filling in the blanks might be helpful for both you and your supporters here.

Meanwhile, you know we are behind you 100%... I just don't want to see you set yourself up for failure by making and following plans that may be doing just that.:l (and you know I don't do that lightly)

Beatle,

You never offend me, you know that. The reason I started this thread is because I want people to offer their opinions and advice. You are way beyond me in this journey and each and every day, I wake up hoping to hear you have hit your switch. I log in and hope to find you.

The Naltrexone decision came because when I left my very first rehab, the rehab psychiatrist prescribed Naltrexone to me. He told me, "but if you do drink, it will help."

I ignored him at the time.

Yes, I called my doctor and asked if taking Baclofen with Naltrexone would be dangerous. (And all my other drugs )

She told me that it should be okay, but that she has never had a patient using high dose Baclofen and couldn't be sure if it would be an issue.

As for prescribing the Naltrexone, she wants me to go to an addiction psych because she is uncomfortable with prescribing addiction drugs. Since she is just a GP, she does not have addiction education behind her. The only reason she prescribes the Baclofen for me is because she called my psych and discussed it with her. I like having one doctor who knows all my meds instead of going to a psych for this and a GP for that, etc. So, reluctantly, she fills out the scripts.

You are right, it is a shot in the dark. I just know that I have been drinking a very long time and if Naltrexone will help with making it less appealing, that will help.

You are right, Naltrexone does not work for everyone. But it does work for some percentage of people having to do with genetics. Rather than testing my genetics, I decided to buy online and just "see." In retrospect, it is rather silly because my newer psych here will be able to see me in a month, which is about the time the Naltrexone is due to arrive. :H:H Bac induced stupidity.

I didn't make myself clear on the dosing. I meant increasing by 10mgs/day every three days. Again, I am suffering the SEs of Bac that make me struggle to find the correct words. I imagine it is becaue of my GB AND the fact that up to this point, I have gone up really too fast for me. One of the issues of GB is that we do not absorb medications well. The stomach cannot process efficiently. Therefore, I chew my Baclofen up before I swallow it. I think I absorb it too well that way but ...

At the end of the day, I hope I never have to open the Naltrexone. You know my feelings on that, Beatle. AF is where I want to be. I can see no benefit in my life from drinking alcohol. I have a very good friend who is Muslim. Of course he does not drink. About five years ago, when the group of us were sitting in a bar, which we did nightly, he said to me, "Cindi, I worry about you. You drink too much and you smoke. Nothing good can come from those. You are a smart woman. Why do you do them?"

He was about 28 years old at the time. I think his beliefs about drinking and smoking are pretty darn smart.

You are right, Beatle, I do not like flowery, long winded, beat around the bush so you don't offend me speeches. Again, you did not offend me. I pay attention to what you say and think. Unless you call me an intrusive b@tch, I always will. Somehow, I don't think that will happen. You have respect for others, unlike some around here.

I know I am posting this while you are unable to read and post. I hope you find this when you come back online.

Yes, we are together in this journey. Never worry about being honest. I appreciate honesty, even when it is uncomfortable.

Love,
Cindi

[Cinders]

Cindi and Baclofen

moglor;1096591 wrote: Hi Cinders,

I wish I were writing to you under better circumstances, but things are what they are. I'll be posting an update in my thread soon.

As far as the stomach issues go, any kind of medication is going to be an irritant for someone with GB. Drinking and smoking is going to make this a million times worse. Adding Maalox on top of it is going to neutralize your stomach acid, so everything is going to sit undigested in your pouch. Adding Prevacid on top of this is going to essentially halt your digestion in both your stomach (pouch) and your large intestine. Additionally, proton pump inhibitors like Prevacid have a number of bizzare side effects, especially when you're double/triple dosing it (and I know you are.)

You are going to make yourself sicker via malnutrition, since you can't digest anything due to to the prevacid and maalox. You are going to get even sicker because you're chasing it down with vodka, which ablates the stomach and intestinal lining, causing nausea. And you're going to start having weird problems with your cardiovascular system if you keep eating the Prevacid like it's going out of style.

Take a break.

Eat the sick kid diet, aka "BRAT." Bananas, Rice, Applesauce and Toast. If you have to chase it with Vodka because that's where you are, fine, but give yourself a break from the crazy powerful antacids. Based on your last message, you're hell bent on a path to either death, an NG feeding tube, or worse...

-Moglor

Moglor,

I hope you read this post, because I greatly appreciate your advice.

I am on the Prilosec bid because my doctor said she wanted me on it for 30 days to see if it helps. Apparently, it takes 30 days to heal esophogeal irritation. She does not want me to do it for any longer than that. If I am still having issues, she is going to set me up for a scope so a gastro can see what is going on.

She really wanted to set it up at my last appt, but couldn't due to insurance requirements. If you live in the US, you will understand.

I have altered my diet and it is helping. I am eating no beef or chicken because those sources or protein really kick me off. Yikes, just two days ago, I ate some pot roast with my husband and ended up extremely ill. The same thing happened with chicken not too long ago.

I can eat fish and that is what I have decided I will eat as my source of protein for the most part when I am going to eat meat. I have to eat lots of protein, my doctor does blood work on me regularly because of my GB and she said my protein levels were very low. I also buy those protein "shots" and drink them. I could actually go vegetarian (not my lifestyle) but am considering it using those as my source of protein and eating vegetables and fruits, supplemented with the protein shots. Most vegetables and some fruits do not upset my stomach.

I can also eat cottage cheese and yoghurt. Those are another good source of protein, as well as calcium. So I make sure I keep those in the fridge. I am lucky in that my grocery store in town (definitely not at the Piggly Wiggly at the bottom of my hill :H:H) carries organic foods and one of the things I can buy there is Greek yoghurt that has no added sugars or preservatives. The only added sugar I put into my yoghurt is fruit. It is very good. Bananas, blueberries, strawberries (I can't wait until my strawberry patch has my own, mangos, etc.

I very much appreciate the post and the recommendations.

You are right about the antacids but my doctor wants my pouch and esophagus to heal first and foremost. I have to be careful with the Maalox because it interfers with the absorption of many medications. I have to take it 2 hours before or 30 minutes after I take my meds. I generally take it after the meds, because that is when the stomach appears. It is sometimes agony waiting for that 30 minutes to lapse. Sometimes, I end up throwing up before I can take it.

I do believe "this, too, shall pass." Between the change in diet and the fact that it seems a body starts to adapt to things, this will be history before too long.

Thanks, Moglor. I hope you are doing okay.

Love,
Cindi

[Ne/Neva Eva]

Cindi and Baclofen

I really appreciate the thought and effort you're putting into this, Cindi.
Hugs
Ne

[Cinders]

Cindi and Baclofen

Okay, now to my progress.

I am at 120 mgs/day. I read the blog from birdy02 and decided to do as she found best, which is to spread out the dosages into longer periods between. I take my doses 5 hours apart, she chose 6 hours, but I find 5 hours to be about perfect.

I am AF for 7 days now. Partly because I am home and that seems to help when hubby is here. As irritating as he can be, one would think it would be the opposite :H:H

Unfortunately, hubby is going to Vegas this week, so I will be alone all day and night. I have made some arrangements with my DIL. I asked if I could come over and work there if I am having serious cravings. She said that would be fine. My daughter has also made the offer to come over to her house. (She has two babies at home, though, and I am concerned about conference calls with crying babies.) Unfortunately, she is also an alcoholic as well as my son. But, they do not drink during the day. My DIL won't. She wakes up long enough to get her boys to school and then goes back to bed and sleeps until 1:00 or 2:00 every day. My son and his wife do not drink in front of their boys. They do not want their boys to see them get drunk because they do not want them to grow up thinking that their behavior is normal. While I suffer serious sadness because of their addiction, I also admire their resolve. Despite their addiction they are good parents. They do know they have my husband to call if something happens to one of the boys while they are drinking at night and have actually done so.

Okay, I digress.

I am going to do the controversial thing and post my SEs. I do this because I want lurkers and newbies to know what they might face if they choose Baclofen. Some people have careers and lifestyles where these SEs are not acceptable and if they choose to go the Baclofen route, may have to make adjustments in their lives for a short while to do this. A long vacation, a leave without pay, whatever. I do not think a surgeon should start Baclofen and continue operating, for example, even if they titrate up very slowly. They need to first see how Baclofen is going to affect them, even at the beginning low doses. They could, however, do Baclofen if they take a sabbatical or long vacation. There are many careers and lifestyles to which this could apply. Not just a surgeon, I use that only as an example.

However, I think you lurkers and newbies should not let something like that deter you, either. Continuing to drink alcoholically is definitely going to ruin your lives. Figuring out a way to manage using Baclofen is well worth the effort. At AA they say, "Sobriety comes first before everything else." When I first started trying to sober up, I thought, "yeah, but I have to continue making my money because my family depends on it." Now I realize how right AA is. Drinking up to a quart of vodka as I have gotten to is going to kill me. Having to sneak vodka into the client so I don't shake like a leaf is going to cost me my job AND my worsen my self-respect. Unfortunately, occasionally I thought dying would be a good thing because at least my family would get my life insurance from my company. That is my sick alcoholic brain talking. I do not want to die. I want to live and see my grandchildren go to college, perhaps get married, perhaps see their children. Life is too precious to waste.

My grandchildren want me to be there, too.

So, I am using Baclofen as a tool to get out of this addiction and I am willing to do whatever it takes. Even if it is uncomfortable and interferes with my job for a while.

That said, here are the SEs I am dealing with today.

1. Somnolence. (Sleepiness)
2. Vision issues. When I sit here and type, my vision seems to go from seeing the type in large and suddenly it "snaps" and the type seems smaller. I know this is not so but that is how it seems. If that makes any sense.
3. Occasional odd visual issues. It is like I see bands of white "clouds" in my eyes. I see them even if I close my eyes. This is irritating, but they last just a couple of seconds and go away. I am able to work, talk, present to the client despite these. They do not obstruct my vision, just irritate me.
4. I have an existing physical issue that exacerbates this. My vision gets blurry. Now understand that my right eye stays blurry. I am losing the vision in my right eye. However, my left eye seems to get to the point where it matches my right eye. My dad takes Flexiril, another muscle relaxant, and he has the same issue. I believe, but do not know, that it is probably related to the muscles in my irises being relaxed. It does not keep me from typing the tomes here that I do and it does not keep me from typing the technical documents I need to develop for my clients. I can still drive because I can see, things are just blurred on the edges. However, it makes me sad because I watch the birds in my backyard on the feeders and I cannot see them as distinctly as I would like. This issue began at about 100 mgs/day. It scares me a bit because it actually could be that I am now being affected in my left eye from my existing condition and this may not be a side effect of Baclofen at all. I have not heard anyone else describe this SE. I will make an appt with my optical neurologist and discuss this with him.
5. I get the electrical shocks in my hands that Beatle described. Sometimes, when I am typing, if my hands are resting on the keyboard, the shocks cause my fingers to hit a key. It is odd but completely a non-issue for me. If my hands are busy, this does not affect me at all. It just means I either hit delete or rest my hands off the keyboard when not typing.
6. I seem drunk to my family based on mannerisms and the dizziness and vertigo. My husband thought I was drinking the other day. My daughter did yesterday and actually did not believe me. She, too, is an alcoholic and knows the signs. Luckily for me, my client has agreed to let me work from home for a while because I tend to be more productive here and they save the travel costs. This seldom happens, the clients usually want me on site so I can do knowledge transfer to their employees. However, this gig is different in that the person I am working with is absolutely every bit as good as I am. (Hard to admit. :H) but I am really here to help them with the effort they are going through rather than teach their staff.
7. I do struggle at times with words. However, the client did not notice this while I was there and I think it is more of an issue for me than anyone else.
8. My voice has changed. It is deeper and a bit raspy. I believe that is due to the relaxation of my throat muscles.
9. I snore now. In my case, this is funny. My husband is having to put up with what I have had to deal with for years. He just mentions it but doesn't complain.
10. I have to wear diapers. I am female, a little further along in age than many, and if I sneeze, laugh hard, throw up (see 11,) I can wet my pants. I have also wet the bed at night. This one does irritate my husband. However, I just bought a rubber mattress cover, I put my regular mattress cover over it so that we don't "feel" the rubber mattress cover, and wear diapers to bed. Easy to deal with, actually. Embarrassing, yes, but doable. btw, wetting the bed has only happend a few times and I deal with it by ensuring I take my Baclofen as early in the evening as my dosage schedule permits and not drinking too many fluids close to bedtime.
11. I throw up from taking Baclofen. However, I am a gastric bypass patient and many meds can cause this. I am dealing with it by ensuring I eat prior to taking my meds, eating foods that do not irritate this condition, and living with it. I did throw up at the client in the "war room" a couple weeks ago, and that was embarrassing, as well as causing them all to be nauseous :H, but I believe I can deal with this. I doubt that if you do not have an unusual gastric condition that this will be an issue.

All of that said, I do not suffer insomnia any worse than I did while drinking. I know people feel like they can't get to sleep unless they drink. That is true for a while when you stop but eventually you do get over the insomnia and then you are sleeping better than ever. It takes a few weeks of AF time to get there but it is SOOOO worth it. I can't believe I relapsed from my last rehab, a wonderful rehab, btw, and have to go through that whole deal again.

The sleep from drinking is not good sleep. Alcohol affects your REM sleep, which is the sleep that actually counts. Alcoholics tend to wake up from their "sleep" when they are coming to. In my case, I used to get up and drink some more just to get back to sleep. What a horrible cycle!!

Also, understand that these SEs abate, they come and go as you titrate up according to others who have gone all the way up to their switch. There are some people who say they have never gone away for them but Otter and others state, adjust your dosage, sometimes going up actually has caused them to abate!!

I am AF for seven days now. I determined last week that I would try very hard to stay AF even if it mean the proverbial white knuckle. The first two days was horrible. I was withdrawing and dealing with the "I need a drink" feature of my brain's messed up chemistry. In my case, it is not my knuckles. I notice my entire body tenses up when I am going through the mental cravings. My jaw clenches and I am miserable.

I am afraid I will fail in the AF endeavor while hubby is gone, though. Perhaps I am just setting up an excuse to drink? Very likely.

But, at 120 mgs/day, where I am now, and not having to be on site at the client for a while, YAY, the only SEs I must really worry about is the documentation I do requires extra editing, adds about an hour to the process, and when I am on conference calls, I tend to only speak when I must interject (hard for me, I am a yakker) and I think about what I want to say carefully before I say it. But, my skills are not affected, I can work my way through problems just as before and trust me, these are very technical issues.

I am pleased with my progess so far, I am now able to slow down my titration rate because I had ramped it up rather quickly when I thought I only had one week at home, and I smile every morning because I know there is an end in sight to my addiction. This is a gift.

Cindi

[Cinders]

Cindi and Baclofen

xpost, Ne. Thanks!!

Cindi

[terryk]

Cindi and Baclofen

Cinders;1100718 wrote:

1. Somnolence. (Sleepiness)

2. Vision issues. When I sit here and type, my vision seems to go from seeing the type in large and suddenly it "snaps" and the type seems smaller. I know this is not so but that is how it seems. If that makes any sense.

3. Occasional odd visual issues. It is like I see bands of white "clouds" in my eyes. I see them even if I close my eyes. This is irritating, but they last just a couple of seconds and go away. I am able to work, talk, present to the client despite these. They do not obstruct my vision, just irritate me.

5. I get the electrical shocks in my hands that Beatle described. Sometimes, when I am typing, if my hands are resting on the keyboard, the shocks cause my fingers to hit a key. It is odd but completely a non-issue for me. If my hands are busy, this does not affect me at all. It just means I either hit delete or rest my hands off the keyboard when not typing.

6. I seem drunk to my family based on mannerisms and the dizziness and vertigo. My husband thought I was drinking the other day. My daughter did yesterday and actually did not believe me. She, too, is an alcoholic and knows the signs. Luckily for me, my client has agreed to let me work from home for a while because I tend to be more productive here and they save the travel costs. This seldom happens, the clients usually want me on site so I can do knowledge transfer to their employees. However, this gig is different in that the person I am working with is absolutely every bit as good as I am. (Hard to admit. :H) but I am really here to help them with the effort they are going through rather than teach their staff.

7. I do struggle at times with words. However, the client did not notice this while I was there and I think it is more of an issue for me than anyone else.


Cindi

Cindi, these are *exactly* the side effects that I had during my titration. I've followed your posts since I joined MWO in early 2010 and I've rooted for you ever since. I read early on about your gastric bypass, knew that you were crushing up your pills, and wondered if that would still present a problem for you. The fact that you are experiencing the same, familiar bumpy ride tells me that baclofen is working and I'm really hopeful for success with you.. -tk

[Guest]

Cindi and Baclofen

Unfortunately appearing drunk does not work for me, and has caused me damage both at work as well as within my personal life. Many of the SEs have meant I find it difficult to connect at all.

[redhead77]

Cindi and Baclofen

Hi Cindi,

I really admire your resolve. Dealing with all that happens after a GB and trying to take baclofen. Needing to crush your pills, to take them. The nausea and vomiting? That's the worst thing ever!

I have had many of the side effects you describe. Mine change with the dose. Some go away, new one's start. I for one, am always glad when someone talks about theirs. If I hadn't read people's side effects, I would have stopped taking the baclofen. I would never have thought some of this stuff was normal. Well, it's not normal, but I think you know what I mean.

[ignominious]

Cindi and Baclofen

Hi Cindi, Hang in there. I first read on a German forum that the SEs show that something's going on in your brain and that the bac's working.

Like Moglor's idea of 'baby food'. Can get confusing when you've got so many other things potentially affecting you.

Don't know how you can crunch the pills up with your teeth. Urggh! Can't stand the taste myself and have to be ready with the water when I put them in my mouth. Keep taking them, it will all be worth it.

[Cinders]

Cindi and Baclofen

Terry and Red,

Thanks for your posts. It is always helpful to know others have had the same SEs because then I can know for sure it is from the Baclofen.

UK,

I have been with the client several weeks prior to now. I just told them I was taking a strong muscle relaxant for spasms and it makes me uncoordinated. They accepted that just fine and that was the end of the story. The throwing up incident was kind of bad, though. Eeek.

You can always overcome these things if you really try in terms of work. Being the athlete that you are, a muscle relaxant would be a common script for sports injury.

In terms of family. They have seen me drunk many times and they just assumed I was drinking again when I was suffering from vertigo and being uncoordinated. The only one who matters in terms of thinking I am drinking is my husband. The kids don't care as long as I am not taking care of their children.

Are you still taking Baclofen and is it helping?

Cindi

[Cinders]

Cindi and Baclofen

Ig, xposted. Thanks!!

I am hanging in there and so grateful for the time at home to do it. Happens so seldom. I travel almost 48 weeks a year unless benched or on vacation.

Neither happens often.

Cindi

[Guest]

Cindi and Baclofen

Cinders;1100816 wrote: Terry and Red,

Thanks for your posts. It is always helpful to know others have had the same SEs because then I can know for sure it is from the Baclofen.

UK,

I have been with the client several weeks prior to now. I just told them I was taking a strong muscle relaxant for spasms and it makes me uncoordinated. They accepted that just fine and that was the end of the story. The throwing up incident was kind of bad, though. Eeek.

You can always overcome these things if you really try in terms of work. Being the athlete that you are, a muscle relaxant would be a common script for sports injury.

In terms of family. They have seen me drunk many times and they just assumed I was drinking again when I was suffering from vertigo and being uncoordinated. The only one who matters in terms of thinking I am drinking is my husband. The kids don't care as long as I am not taking care of their children.

Are you still taking Baclofen and is it helping?

Cindi

Unfortunately some people have seen me relapse too many times, they noticed my eyes streaming (the tear ducts SE), and me slurring my words. That was enough for them to run a mile since I appeared to be having a break down. Because of past experience to run after them explaining I know will make me look like a drunk covering up. I didn't explain I was taking a muscle relaxant because I was trying to cover-up on a day I really didn't feel up to working, but had let work down too many times in the past due to my drinking. "Oh yeah my eyes are streaming and I'm slurring because I'm taking a medication for my injury" isn't going to wash. Not with someone who is intelligent who will then ask what it is exactly, what the injury is and the med I'm taking (because they will) out of concern.

I am still taking it and it isn't helping, it's just making things worse. I also do not look like any athlete to anyone right now - I've gained around 28lbs of fat and training is sporadic if at all.