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Struggling after being happily indifferent thanks to Baclofen


Mom2JTx3
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Hello all,

After being happily indifferent thanks to Baclofen, I now find I'm struggling again. I had over three months at my switch dose of 250.   Based on the recommendations on the French forum, I was thinking about starting to titrate down. However,that was not meant to be.  My Mom recently moved in with my family.  She has dementia, and truth be told, it's been hell for my family.  I find that I'm drinking again because of the stress and anxiety.  I'm titrating up again on the Bac, but at 280, I'm still struggling.  Ne once posted about what is gained could be lost again.  That resonated with me, but I took it to be careful about drinking while I titrated down.  However, I wasn't drinking then, but I am now.  I  will continue to titrate up with the hope that I will find a level thar will work for me.  I have to say that Otters recent experience with his wife going back to drinking because of anxiety rings true for me.  I guess I would recommend that we all need to address our underlying issues with anxiety in order to reman sober.  I am taking Buspar daily and Xanax as needed to cope with the remaining issues.  Baclofen doesn't cure everything.  You still need to address the reasons why you drank in the first place.

Thanks for listening,

Mom2

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Yes, it's easy enough to go back to drinking when stress hits.   I think dealing with someone with dementia is probably one of the most stressful things imaginable and I know the moment my wife went down the pan because she just snapped when our old dear said something completely nutty.  They may or may not mean to but elderly people with this condition play games with everyone's heads.

My son and I had to get my wife off the roof on Thursday and we sat with her while she went cold turkey so we could get her to hospital.  When we got there she was put in a room but some nurses started yanking at a window to open it then asked her to leave the room so she got very irritated and we went home.  We went back the next day and had her band emptied and then she ate a big dinner but still threw up and felt lousy.  

 

She is now asleep.  She has made up with everyone she offended and was sober on baclofen and valium yesterday but this morning she was completely out of it after ranting for an hour.  She says it is pills but I think she must have downed a lot of vodka which I must not have noticed her buying at the shops yesterday.  She knows she has to taper off by Monday.  The doctor has arranged an endoscopy and then she is likely, we hope, to have surgery the following week to remove the band.  

The hospital is bringing in a top gastric surgeon who we will ask to perform a bypass after removing the band.  

 

I think things should settle down now.   She took a lot of baclofen yesterday and did very well but because of all the upset and withdrawal, the operation, it is going to be hard to stabilize her dosage and get this under control again.

 

The old lady now has a "Young Man" living with her, who we organized to sleep over every night so she always has a smile on her face.  She is a cheeky old bird, to be absolutely honest.  I had no idea that people have a sex drive at that age.  

 

I have said this before and I am going to start emphasizing it.  Because you have stopped drinking, does not mean you are cured because drinking is not the illness. Anxiety is the illness and what is happening is that once you recover, people just treat you like any other person.  In fact, you are not and you have to take stress seriously and manage it effectively without being pushed back into a lifestyle which might seem normal to many  but is going to cause you a lot of anxiety. 

 

I could see this happening to us with more and more invitations to functions, more responsibilities.  We went from having not a single friend visit our house for 10 years nor a single visit to anyone else's home to being on committees and having to fulfill functions, and taking on huge responsibilities beyond what one would do even if one did not have this problem so it's no wonder this has happened.

 

I should say, with respect to the gastric band, that this technology is effective in weight loss but has huge problems.   Looking back, it completely altered our lifestyle because I always made breakfast and served it in bed but with the band she couldn't eat so that changed.  Also, we could not eat the same meals so family dinners together became impossible.  And, my wife had to sleep sitting up, like the Elephant Man or she would vomit.   That resulted in her watching TV on her laptop until all hours and because she was waking up due to the condition she would watch TV again from the early hours. That is not condusive to good relations so it was a huge problem in our marriage and our family.  Plus, of course, she tapered off baclofen completely because we felt it had done its work. In addition, the band makes it difficult to take medication which is caustic like baclofen because it irritates the stomach "pouch" which has no digestive juice in it.

We are hoping that this surgery will resolve these problems.  Fortunately private surgery is cheap here and the doctors are quite good, particularly the specialists flown in from Istambul.

I am feeling more hopeful now.  So is she.   

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Mom2 - I’m sorry you’re finding yourself in this situation of having lost indifference due to extreme stress. I know this has happened to another member here (I don’t feel right mentioning someone else’s “name” without their permission, but hopefully he’ll see this and comment). He was happily indifferent for quite a while until his mother became seriously ill and eventually passed. I don’t remember the exact details/timeline, but I do know that he continued to titrate up on baclofen and he found indifference again.

I don’t think you’ve lost it, you just need a little more baclofen owing to all the stress you’re going through - and, of course, to deal with underlying anxiety. That is an issue that we all need to continue tackling after reaching indifference. Do you have any time at all to yourself now that your mom has moved in or do you feel like you have to be there all the time? It’s really important that you take some time for yourself as well. You can ask your family for some help just to get away for an hour a day to exercise (great anxiety relief) or even just take a lazy stroll to clear your head - or whatever else grounds you.

In any case, don’t lose hope. You’re not the first person to lose indifference and have to find it again. Please keep us posted as to how you’re doing. I’ll be keeping you in my thoughts.

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Mom2 I am sorry too that you've lost indifference due to stress. It can be very demoralising to return to drinking when you think you have it licked.

I think LIS was referring to my situation last year when my mum had a stroke mid-year, and then at the end of the year died.

In both situations I was indifferent and sober on Bac. Both times I drank (after a few months of indifference both times).

Maybe my case was a bit different -- I was on only 75km the first time and the second time I'd titrated down from 185mg to 120mg too quickly.

But the stress and anxiety that hit me over my mum was the precursor to cravings returning and me seeing the drink as the only way to reduce the overwhelming feelings.

 

Hang in there, you can reach indifference again after titrating up. But yes, as I'm realising after about 2.5 months cravings-free, that my stress and anxiety (and depression) have not been removed by Bac, despite Ameisen and others' reduction in anxiety on Bac.

I am trying to do more than rely on Bac this time. I have a referral to see a psychologist and I also am doing push ups and sit-ups before going to bed. Not much and probably the wrong time but I have to try something to reduce the anxiety. Exercise (more than I'm getting no doubt) is said to be a good way of reducing anxiety.

Edited by MJM
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On 5/5/2016 at 3:30 AM, Mom2JTx3 said:

Hello all,

After being happily indifferent thanks to Baclofen, I now find I'm struggling again. I had over three months at my switch dose of 250.   Based on the recommendations on the French forum, I was thinking about starting to titrate down. However,that was not meant to be.  My Mom recently moved in with my family.  She has dementia, and truth be told, it's been hell for my family.  I find that I'm drinking again because of the stress and anxiety.  I'm titrating up again on the Bac, but at 280, I'm still struggling.  Ne once posted about what is gained could be lost again.  That resonated with me, but I took it to be careful about drinking while I titrated down.  However, I wasn't drinking then, but I am now.  I  will continue to titrate up with the hope that I will find a level thar will work for me.  I have to say that Otters recent experience with his wife going back to drinking because of anxiety rings true for me.  I guess I would recommend that we all need to address our underlying issues with anxiety in order to reman sober.  I am taking Buspar daily and Xanax as needed to cope with the remaining issues.  Baclofen doesn't cure everything.  You still need to address the reasons why you drank in the first place.

Thanks for listening,

Mom2

I am not sure I can say much that you haven't said.  

My concern would be that you may be taking on too much in your life if you have someone with dementia.  The lady we had drove her son to what appears to be a suicide.  He told her he was going to kill himself, expressed the same thoughts to a neighbour and I found rat poison next to the chair he died in.  

I found dealing with the dementia extremely difficult and my wife was even worse. She blames her present situation on me for bringing this lady into our house.  I would try to get out of all the stress you can avoid and distance yourself from the person with dementia.   My wife makes the point that, in fact, she is in worse health, mentally, than the old lady of 91 and my wife's condition has all the characteristics of dementia.

 

I don't think changing doses is going to help.  As you have pointed out, it isn't just baclofen that cures this problem, you have an underying condition and anxiety makes it worse so in my view, the stressors in your life need to be addressed.

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S

2 hours ago, bleep said:

Otter, I feel for you mate, and I'm wondering, without knowing the specifics, if you aren't trying to chew off a bit much here...? Is there somewhere, someone, you can look to for help?

I have powdered baclofen, courtesy of Lo0p, but, given my experiences with trying to courier drugs through the post, I'm not sure how to get it to you. If you can think of a way, I have 500 000mg you are welcome to, and that excludes my personal stock for when this goes south. I received a kilogram of white powder in the post, much to my excitement, how it got through is beyond me. If you think this is an avenue worth pursuing, let me know. China produces it by the tonne...

On a separate topic, which I've seen come up here and on Ne's thread, has been the issue of baclofen not working at high doses, above people's switch dose. And I feel like a heel for saying it, because I am far from a role model or advisor, but I cast my mind back to experiences of using baclofen, boozing, and life, and I recall several threads where we all decided to pack it in to get the ball rolling, and that's all it took. Baclofen is a tool, that solves problems previously insurmountable, but you still have to walk up the mountain, and it still takes the first step. It will do nearly all of the heavy lifting, but if you don't let it, the load will sit. Take the step, and let baclofen work for you.

 

Habit is, I have discovered,an extremely powerful force in my life. I've been given a choice to actually be normal, and there are several occasions that I have made the wrong choice. But it's a choice, and I think that applies to all who get a sufficient dose of baclofen in them (which I equate with being a normal person) - you are now one of those guys, the guys who can leave the party without being the last one there, It comes down to what choice you make. But the possibility, and probability, given our history, of making the wrong choice is enormous. Do yourself a favour, cut away from your normal situation, and let baclofen work, and then the world just opens.

 

It's a cheesy, over-optimistic picture I've painted, but I've been through it, and been watercoloured perfectly. This stuff works, but you must allow it space to work its magic in.

Thanks for the offer.  I will see how it goes.  I have a bit left but I would pay to have some sent, as a backup.

I am hoping she will come out of this through the night and tomorrow then I'll get her into hospital, get her ready for the operation.  I am hoping that will sort things out. 

 

I know it seems that professional help is called for and I feel the same.  But that's the dilemma with this treatment.  I stopped her from drinking by forcing her to stay in our bedroom and kept the booze away from her. But, that resulted in her climbing over the balcony rails onto a roof and we had to grab her and pull her inside. That is how bad this addiction is.  When she did get a bit better she started going on about getting to hospital and wanting to take a taxi there if I wouldn't take her.  I said to her that there's no point since the hospital wouldn't give her baclofen so she would just walk out. That is in fact what happened.  

There is just no way to deal with a serious case like this through a hospital because they just are not set up to deal with this illness.  They would have put her on a drip, and she needs that, but the only way to crack this drinking binge is with baclofen, which they would not use.

Medical treatment is actually quite good here.  There is a good university hospital here with some very nice and intelligent doctors from all over the world.  They teach as well as treat so they are very switched on, except where baclofen is concerned.

For instance, in the UK, I noticed my eyes were getting worse all the time and my prescription kept changing until I had one really thick lens and one normal lens.  That made things smaller in one eye.   I kept changing opticians and it was driving me nuts.  Ophthalmologists are specialists in the UK and I would have had to be referred, wait months and travel to see one and no one was saying what could be the problem so I figured it was just a lousy optician.  

In the last week we were in Glasgow I was running in the local park and lost my footing, went down like a ton of bricks, broke a rib and was concussed.  I had never had that happen in all my life.  It was as though I couldn't judge the path I was on.

 

When I got here, I went to an optician and she refused to speak to me until I had gone to an eye doctor.  I went and when she looked in my eye she said I had a cataract and then said...you need an operation because if you don't, you will fall, because you have lost your depth of vision and will be unable to walk without falling. She operated the next week and then did the other eye.  

 

I am hoping the treatment for my wife will go the same way.  None of the bureaucratic garbage of the NHS.  You can walk into a specialists office from the street without even making an appointment and have an operation the next day, at a fraction of what it would cost anywhere else. 

 

We shall see.  

 

My wife is making a few noises.  She really does look plastered so it's probably the cumulative effect of a large amount of alcohol and the baclofen, but this is crazy and is starting to scare me.  I am yanking her around to get her eyes open.  I just heard her moaning so maybe this is the beginning of the end.  

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On May 8, 2016 at 4:25 PM, Otter said:

My concern would be that you may be taking on too much in your life if you have someone with dementia.  ...

I don't think changing doses is going to help.  As you have pointed out, it isn't just baclofen that cures this problem, you have an underying condition and anxiety makes it worse so in my view, the stressors in your life need to be addressed

Otter,

Thanks for your post.  My dh recently said to me that if dealing with my mother is causing me to drink, then we need to find another solution.

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Otter,

i recently had a conversation with my doc who said the sleeve was proven to be the best option for surgery rather than the roux-en y.  For what it's worth. Good luck tomorrow.  I hope your wife is OK.  That is scary what been going on.

On a lighter note, LOL about the old lady and her young man!

Mom2

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I will admit that when my husband and I moved away from friends and family to a place where he could do his "flyfishing", was the end of our marriage.  I tried to make it work, but I hated him for that and his control when I had left my personal support.

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18 hours ago, SKendall said:

We had a poster on MWO, who never drank alcoholically until she got "the sleeve".  She became an alcoholic very fast

This is very true.   I had a roux-en y gastric bypass and my doc told me never to drink alcohol afterwards.  The alcohol goes straight into your system.  I later learned that after gastric bypass, many people who were addicted to food, switched their addiction to  something else, and it was not uncommon for it to be alcohol. This is what happened to me.  I was never an alcoholic before that.  Sadly, I gained alot of my weight back drinking so many calories.  I was losing weight again when I quit drinking until recently due to whole the whole relapse thing.

Otter, if your wife has surgery, she can't ever drink again.  I think she would still have trouble taking Baclofen depending on the procedure.  The one that I had was restrictive and and I had to switch to liquid vitamins as the regular ones could not get through.  The pouch has the same issue as the band where there is no stomach acid.  You can't ever take Advil or any NSAIDs either because of the risk of ulcers.  This also happened to me when I cracked a rib and was taking a bunch of Advil and ended up with bleeding ulcers.  There is definitely a down side to any of those procedures.

How is your wife doing?  

Mom2 

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Hiya, Mom. I'm really glad you decided to post. Sorry I've been AWOL. 

There is a huge correlation between gastric surgeries for weight loss and alcoholism. I remember one study suggested 55/100 people turned to alcohol, though I can't remember where I read it and a quick google search didn't bring up the research. Anyway, it's beside the point, obviously, since you've had the surgery and found alcohol, and then alcoholism...

I agree with the advice given above about getting help with your mom, or as your husband suggested, finding an alternative for your mom's living arrangement. There's ample evidence that caring for people with dementia is EXTREMELY taxing on the caregivers, and frankly, your health has to come first. You can't be any good to her, anyway, if you find yourself unable to take decent care of yourself because of her. I hope I'm not being insensitive. I know that these are huge decisions, with emotional and financial impacts that far exceed even the most stressful of situations that we face in life...

The other thing is, well actually two things, is finding a therapist/psychiatrist to help. Mine does skype/phone/facetime counseling, and I'm sure that she could help you figure out if you need meds, and help you get them. (She can't prescribe outside of Virginia, I don't think. Maybe in surrounding states? Anyway...) It's just a thought. You guys know I love her more than anything and think she is the best doctor ever. And she totally gets "us" and the use of baclofen and also the correlation between anxiety and alcoholism. Which makes her about 75.6% wiser than any doctor I've ever seen for any reason...

The second thing is exercise. I hate to harp on it. And frankly, I hate to do it, and have a really hard time doing it consistently, but I did it for three days straight and the difference in my mental health, in my sleep, in just about everything, was pretty profound. Very annoying, but too true. And the only reason I did it is because I was visiting my parents, who live in downtown Baltimore, and I HAD to walk the husky pup for at least a couple of miles each day, because they don't have a yard. And when you walk a husky, you don't walk slowly! She definitely made me break a sweat. But it wasn't like I was doing anything other than walking...

How are you feeling now and are you finding any relief from the craving from the increase in baclofen? I know that when I went up the last time (to 400mg!!!) and didn't find any real relief it REALLY freaked me out and added to my depression and anxiety. Such a circle...

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Thanks Ne,

I agree with both of your recommendations.  My doctor recently recommended an addiction specialist, and I've committed to going to the gym was my husband. Although I wouldn't mind skyping with your doc if you want to send me the info.

So, Major health crisis this week.  I kept titrating up on Baclofen, but went on a total three day binge of pre Bac levels.  I don't know why.  It was just the stress in the house that made me want to hide. Then low and behold, after the bender, I hit indifference again.  I knew I needed to titrate down on the AL but as hard as I tried I just couldn't drink the wine. 

I was thrown into the worst DTs ever.  So much worse than when I quit the first time.  I was taken by ambulance to the emergency room.  Spent three hours there until they got me stabilized.  Spent 36 hour in the icu, then moved to a regular room.  My regular doc came to see me and busted me out of there with some additional Valium which is what they had me on.  I remember none of it of course except the last day. When I came to, a psychiatrist, her assistant, and an addiction specialist all came in and told me how I should not take Baclofen.  Anymore.  I had to go to AA instead. I was without it for two days, but was on anti seizure medication, so maybe that was why it was OK. My poor husband kept telling them they had to keep giving it to me to no avail. The psychiatrist said she looked up Baclofen and it said it could help someone quit drinking effortlessly.  She said 'oh, that's not good!'  Unfreakin believable.  My doc is totally on board, but to hear the BS by so many medical professionals was just disheartening.

Anyway, I'm now happily AF and will never binge again because I can't put my family or myself through it again.  I'm going to stay at a high dose for a very long time.  I need to find other ways for stress relief because drinking will not be on the table ever again.  The doctor told me that DTs get worse every time you quit drinking once you have them, so I guess I'm one of the unlucky ones.  My husband is done, done, done with this, and so am I.  I'm just thankful that the Baclofen kicked in again.

Thanks for listening,

Mom2

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OMG Mom2 that is so scary! I'm glad you're OK now and that you feel indifferent again.

11 minutes ago, Mom2JTx3 said:

When I came to, a psychiatrist, her assistant, and an addiction specialist all came in and told me how I should not take Baclofen.  Anymore.  I had to go to AA instead. I was without it for two days, but was on anti seizure medication, so maybe that was why it was OK. My poor husband kept telling them they had to keep giving it to me to no avail. The psychiatrist said she looked up Baclofen and it said it could help someone quit drinking effortlessly.  She said 'oh, that's not good!'  Unfreakin believable.  My doc is totally on board, but to hear the BS by so many medical professionals was just disheartening.

Utterly infuriating. God forbid someone who's suffering from DTs finds a medication to help them stop drinking.

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Glad to hear you are ok, and especially good news that indifference has returned. Epic.

 

It's an unreal reaction, why is there an expectation that alcoholics should suffer for what they have gone through? It is entirely reversed from what it should be!

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