Need to make contact with others using baclofen

[Stevo]

Hi there,

I used to be active on My Way Out way back 6 or 7 years ago. I am back on baclofen for my drinking and have come across something very strange.

Please if this forum is still active and people are contributing, I need to connect with you.

I am a staunch believer in the abilities of baclofen yet had a very strange experience about a month ago. I had a migraine without the head pain and have not been able to return to my normal clear headed self. I am currently titrating back down with the guidance of my doctor to try to discount that baclofen was the cause. I need to know if anyone out there has had a similar experience or knows of this happening to others.

I was on 210mg a day when this happened and had seen a huge reduction in my drinking as expected. I don't want to stop with the baclofen but have to to eliminate the possibility that what happened was caused by baclofen.

Cheers Stevo.

[Guitarista]

Re: Need to make contact with others using baclofen

Welcome back Stevo.

Some experienced Bac users have recently frequented this forum, so i'm sure your post will garner a response soon mate. Good to see you. Take care of yourself

[Mom21961]

Re: Need to make contact with others using baclofen

Hi Stevo, I am not a doctor, so take this with a grain of salt, but I had what I thought was every side effect from Baclofen as I titrated up. Migraines was not one of them. I would suggest staying the course and seeing if it resolves. I wish you the best.

[Mom21961]

Re: Need to make contact with others using baclofen

PS, I went up to 320 before reaching success.

[georgesmiley]

Re: Need to make contact with others using baclofen

Hello [MENTION=22203]Stevo[/MENTION] ,

And welcome back. I'm not a doctor, but...

People often experience something at the same time as they take a medication, and link the two erroneously. I don't want to make light of your situation (but am British, and so make light of every situation), but it's for this reason I love reading the reviews on drugs.com. Mostly they're pretty sober, but every fifth one is along the lines of, 'After two days on this blood pressure medication taken by millions for fifty years, I was paralysed on my left side. This is poison.'

A 'migraine without a headache' does exist in the medical literature; but it's unclear what you mean. 'Silent' (painless) migraine exists, but it's associated typically with visual disturbances/aura. Do you have those?

Finally, with regard to 'feeling shitty in the head'... we're all drunks who've been assaulting our brains with poison for years and years. So... just gotta take that into account.

Ultimately, you're working with a doctor - and s/he'll be able to guide you.

Good luck,

George Smiley

[Baclofenman]

Re: Need to make contact with others using baclofen

Hi there,

I used to be active on My Way Out way back 6 or 7 years ago. I am back on baclofen for my drinking and have come across something very strange.

Please if this forum is still active and people are contributing, I need to connect with you.

I am a staunch believer in the abilities of baclofen yet had a very strange experience about a month ago. I had a migraine without the head pain and have not been able to return to my normal clear headed self. I am currently titrating back down with the guidance of my doctor to try to discount that baclofen was the cause. I need to know if anyone out there has had a similar experience or knows of this happening to others.

I was on 210mg a day when this happened and had seen a huge reduction in my drinking as expected. I don't want to stop with the baclofen but have to to eliminate the possibility that what happened was caused by baclofen.

Cheers Stevo.

Hey Steveo,

Having never had a migraine I am not sure of your symptoms or issues but there are loads of side effects with Baclofen. However if you HAVE been on Baclofen for a prolonged period of time, I doubt this is the reason for your issues.

I would expect you have been on Baclofen for some time so this will be an odd situation. To suddenly get issues would suggest to me this has nothing to do with Baclofen. You may have covid, a cold or some other virus. A doctors blood test should sort this out.

Regards,

Bacman

[Stevo]

Re: Need to make contact with others using baclofen

Hi guys and thank you all for your responses.

I need to elaborate and be completely transparent. I actually copy and pasted the original post from the "end of my addiction" forum which I had posted approximately a month or so before I decided to check back in here. I have had no response from anyone on there and just thought I'd ask the same question here. So it has been about two months now since the strange incident happened. Strangely I just tried to check if there had been any response on the other forum and it appears to be closed down.
[MENTION=24582]georgesmiley[/MENTION] The closest thing I can find to what I experienced is what is known as a silent migraine, I wound up in the local ED and the triage nurse told me they had never heard of one and treated me as if I was crazy. I had all the visual and aural symptoms associated with a migraine without the headache. I knew the nurse was a fool when he finished by saying that a silent migraine could only be diagnosed after years of said symptoms. I was like "what, you just said you have never heard of one five minutes ago." He was arrogant and saw me as a layman who could not possibly know something he didn't. That being said my doctor knew all about them which was good, but he was concerned that I may have had an adverse reaction to baclofen. I am the first person he has ever encountered who has taken this approach, he is supportive and knows that it has worked for me before yet wanted to make sure I was not overdosing. This is why I had to start titrating down, along with the possibility of further testing requiring us to be transparent with the medications I am taking.

I myself have never thought this was a side effect of baclofen but had to tow the doctors line. I posted here looking for any possible chance of someone else knowing of a situation like this due to baclofen.

I am glad to say that I have almost returned to what I would consider normal although certain audible issues continue. I had never had a migraine in my life and when it took almost two months to rectify itself I was getting pretty worried, I thought I was living in a new normal or at the very worst I'd had a small stroke or something.

I appreciate all of the responses and thank everyone for their replies. I am back titrating up and have had a battery of blood tests, I received a call the other day saying I need to go back to see my doctor, I am going on Friday.

I hope I haven't missed anything I was hoping to say. I will say this though, it is because of information provided by people on here years ago that my doctor believes baclofen is a viable solution coupled with my first recovery which he watched in awe. He has been my doctor for many years now and is approaching retirement, I have spoken to him about possibly helping other people with baclofen to which he responded, "I would if it came along Steve, but most of my patients are old ladies with purple hair these days." He is happy for me to be titrating back up and has pretty much given me the reins to do so as I please, as he did last time. I am very lucky, all I have to do to get a new script is call and tell him. Hopefully more doctors will understand the benefits of baclofen for AUD in time.

I'm so glad people responded and I have found this forum again, I will continue to titrate up and check in with updates and to see what others are doing.

Every person that replied to this post is a name that I remember from all those years ago, thank you again for your responses and still being here.

Cheers Steve.

[Stevo]

Re: Need to make contact with others using baclofen

Quick update and check in,

I am back up to 180mg a day, I am still drinking but strangely not as much as I thought I would be as I began titrating down. I seem to have lost the drive to drink obscene amounts of beer like I was before starting baclofen again. My weird experience has definitely subsided yet I still have issues with certain sounds, it seems to be certain pitches and sounds that take me by surprise like a car horn randomly going off or a dog barking. That being said, I am very glad to be back on track towards indifference and the outcome of the strange event is minimal.

As I am the only person I know immediately that is on baclofen for AUD I'd love to remain in contact with the people on here for support and communication.

Are there many people still active here who are doing the same thing?

Cheers Steve.

[georgesmiley]

Re: Need to make contact with others using baclofen

Hi [MENTION=22203]Stevo[/MENTION] ,

I'm just a couple of months ahead of you, so I'm doing the same.

I fuck up all the time, forget to take it, blah blah. On the one hand, I have ADHD, so half my life is spent looking for my phone/wallet/keys/daughter/car/tickets. Nice excuse.

On the other hand, I'm obsessed with drinking, and never ever ever forgot to have booze in the house. It's up and down. But even when I drink, I drink a fraction of what I used to drink.

I went cold turkey Sept-Jan, then became more 'moderation management' - and I have good days and bad. But even on the bad days, I'm not drinking anything like what I was.

Stay safe, Stevo.

Georgesmiley

[Stevo]

Re: Need to make contact with others using baclofen

[MENTION=24582]georgesmiley[/MENTION] Thank you for the response, I was starting to think there was no one else out there who was willing to communicate on this topic.

I am back on 210mg a day now so for me it is a dose that is interesting as that is where I was when the still unidentified situation occurred. I doubt it will happen again as the indicators seem point to a silent migraine.

As I said in the previous post, I'd love to be able to bounce off someone else or as many others as possible who are on the baclofen path, or have been. It can seem like a lonely road when I know no others who are doing it.

Thanks again for your reply.

Cheers Steve.

P.S. I live with certain mental health issues, you would never have to apologise to me about your ADHD manifestations.

[Colin]

Re: Need to make contact with others using baclofen

My experience is very similar to yours. I've had intermittent migraine ever since I was 10 years old. Amongst all the other symptoms was a fierce headache which knocked me out for 24 hours or so. The frequency of attacks was initially about once every 2 weeks which slowly extended with age. When I was about 40 the intensity of the headaches began to decrease until I now have occasional attacks with no headaches. The auras and numbness are the only reminders that it is migraine.
I vividly remember an occasion when I told a friend that a migraine was beginning to which he asked if I had ever had migraine when I was drinking and after some thought I said no. Ever since, whenever I felt a migraine starting I reached for the bottle and it seemed to help.
Your migraines might be caused by your sobriety and not by baclofen!

[Stevo]

Re: Need to make contact with others using baclofen

My experience is very similar to yours. I've had intermittent migraine ever since I was 10 years old. Amongst all the other symptoms was a fierce headache which knocked me out for 24 hours or so. The frequency of attacks was initially about once every 2 weeks which slowly extended with age. When I was about 40 the intensity of the headaches began to decrease until I now have occasional attacks with no headaches. The auras and numbness are the only reminders that it is migraine.
I vividly remember an occasion when I told a friend that a migraine was beginning to which he asked if I had ever had migraine when I was drinking and after some thought I said no. Ever since, whenever I felt a migraine starting I reached for the bottle and it seemed to help.
Your migraines might be caused by your sobriety and not by baclofen!

Thank you [MENTION=18040]Colin[/MENTION] for your reply.

I wish it was my lack of drinking that could be the cause, that would make a little sense to me. I am still drinking although considerably less in recent days than I was before.

I am on 230mg. a day at the moment and now believe the event had nothing to do with baclofen, which was my doctors initial fear. I was on 210mg. a day when this happened. Personally I suspect it may have been a little more dire than was recognised.

The good news is I am on 230mg. and continue to be titrating up. I have some weird side effects such as a feeling that keeps me up at night which feels a little like withdrawal except it is only in certain places. When I say that I mean a feeling of having bugs under my skin. I have battled many addictions and have withdrawn from a variety of substances, it's the only way I can describe it other than drawing a comparison with restless legs, which I have also endured due to medication. Other than that I can't complain, I am a little tired as this tends to happen through the night.

My drinking is becoming considerably less, I just don't seem to be able to consume the amounts I have previously very easily. Onward and upward to achieve indifference.

To anyone who is on a similar path, I'd love to hear from you as I feel a little like there aren't many out there to bounce off on this topic.

Have a great day or night wherever on this rock you may be.

[Stevo]

Re: Need to make contact with others using baclofen

Quick update on where I am on this baclofen journey.

I feel it is pretty safe to assume traffic on the medication section of MWO is much less than it was when I was here years ago, it was thinning out then too compared to the years previous to my arrival. I certainly feel like I am doing this on my lonesome this time.

I am on 245mg a day at the moment and my drinking has changed dramatically, I used to look forward to getting home to have a beer and I would have one in my hand very shortly after walking through the door. Lately I have noticed I spend time doing other tasks and pottering around before I crack a beer, and when I do I don't really seem to be excited about it at all. It is more like I am doing it due to a habit which had been well formed over many years.

If anyone comes across this post who has switched, I am wondering if this is what it was like for them?

I am still drinking yet nowhere near as much as I had been previously, and I seem to be becoming nauseous as I reach about seven beers. Can anyone shine a bit of light on the nausea, and is this part of the process?

Last time I did this, I only went to 130mg a day and that appeared to be all I needed to stop drinking, 130mg a day did nothing for me at all this time.

Thanks in advance, if someone replies.

Cheers Steve.

[Stevo]

Re: Need to make contact with others using baclofen

Another quick update on this baclofen journey.

I am now on 275mg a day, my drinking is starting later in the day and I have been having a cup of tea in the afternoon instead of going straight for a beer. It is all made a little harder as we are in lockdown here and the days can be a little boring, having a beer earlier would be an easy way to kill some time. That being said, I just don't want one.

I am still averaging about 8 beers a night, I usually tip the last one down the sink after a few sips. My SE's seem to have settled and I am sleeping well through the night with the help of Phenergan.

Funny story, the other day I was in the chemist getting my baclofen script filled when the pharmacist came to speak with me concerned I was refilling scripts faster than I should be. I quickly explained what I was doing but as there were other people around I said for addiction and not AUD, he asked if my doctor was aware? I informed him he was. As I left I spoke briefly with him in a bit more of a private manner, but only very briefly saying I have been waiting for you to say something. Fast forward to a couple of days later, I am back in there getting Phenergan and one of the assistants makes a point of asking the pharmacist if it was okay to sell these to me? He nods, I walk out and start thinking to myself I told the pharmacist I have a problem with addiction, this could mean anything. I start to get worried the pharmacist is going to be watching everything I do like a hawk, so I went back in yesterday and asked to speak with him privately. He takes me to a room out the back and I got an opportunity to explain to him exactly what I meant by addiction. He says he has spoken to my doctor and is happy to continue as we have been. Phew! I asked him if he knew anything about HDB to which he replies no. I then proceed to teach him about what it does and why I am doing it. I made it very clear I was not getting high or abusing any pharmaceuticals and I would appreciate if I wasn't scutinised every time I have to come in for filling of prescriptions and anything else, I am on several medications for other health issues. I let him know the high dose I am on is not going to be forever yet I may continue to go higher for some time to come, I assured him I am titrating up responsibly and I will at some time in the future do the same down to a maintenance dose. The worst thing that could happen right now would be to cut me off as I would go in to withdrawals. He seemed very interested and reassured me he would continue filling my scripts. I thanked him for his time and he thanked me for being up front with him, I left.

It worried me terribly I was going to be cut off just as I am really beginning to see the transformation happen in my life again. I told my pdoc and my doctor they only see me once a week but I am living through the life changing effects of baclofen, they both smiled when I told them I was having a cup of tea in the afternoon instead of a beer. I was talking with my partner about this later that night, she doesn't live with me but we talk every night. She lives 200 km's away in another state and she said you know you are not the only person seeing it, I have been there with you too. I hadn't thought of this and it was nice to realise, when we met I was still drinking at least 16 beers a night, if not more.

Anyway, this journey has been different for me as I have had to go much higher than last time. It worried my doctor and pdoc, and me a bit. I have scoured the forum for switch stories but it is hard as there are so many posts and some are so long. I am still interested in communicating with others on the same path and if anyone can send me straight to detailed descriptions of other peoples switch stories that would be much appreciated.

This has been much longer than I had expected and I think I have more to say, but won't for now.

Cheers Steve.

[Mulburry]

Re: Need to make contact with others using baclofen

[MENTION=22203]Stevo[/MENTION] I'm going a totally different route, but it's always interesting to hear other peoples experiences with meds / cutting down /quitting etc. so thanks for sharing!