Finally! (My Baclofen Story)

[Ne/Neva Eva]

Finally! (My Baclofen Story)

Now THAT is a good post. Thank you for all of the points of clarification. I agree with everything you said, probably would do the same thing if I had to do it over again, and concur with your assessment of the good doctor L. I have had similar experiences on a couple of occasions and keep the contact minimal and at the same time am extremely grateful for his continued support.

I don't know what the technical definition of overdose is, particularly related specifically to the amount and to baclofen. What I'm pretty sure of is that based on the SEs alone, many doctors would (understandably) consider whatever amount we're taking (in HDB) as an overdose. (If a person is taking more than the recommended limit of 80mg/day, particularly without a doctor's oversight, particularly a lot more, walked into an ER with brain zaps, mental fogginess, etc., etc., I feel pretty confident the reaction would be to classify it as an overdose of baclofen. Right?)

And while I don't want to beat a very dead horse, it bears repeating, just in case someone who hasn't done any research, or taken any baclofen before, comes along: It's a really, really bad idea.

But I'm glad you did it and it worked, MusicMan. I can certainly relate to the frustration and desperation. Ya' gotta do what ya' gotta do. Welcome to the other side.

[TAGilhooley]

Finally! (My Baclofen Story)

Thank you for this, musicman! More grist for the mill. I've heard a couple others experiences, and have decided to rule Dr. L out for the time being. Thanks you much for the source pointer. I've gained a bit of experience over the past couple years dealing with online sources for other things, so that is likely the way I will go, if/when I decide to go this way.

musicman;1480763 wrote: ...Back to Dr L., TAG, sorry if I discouraged you about him. After faxing him the refill request myself, I had it by the next day. He is definitely awkward to deal with, but like Ne said, he's what we've got. If you don't want to deal with him, I have found what appears to be the best price out there, by far, for online baclofen. InternationalDrugMart.com has it for $140, for 200 25mg pills ($.70/pill). I haven't seen it anywhere near that low, from anywhere else. I ordered from there for months, with no issue.

If you do use him, I would say just take what he tells you with a grain of salt. I don't think he really has any idea what he's talking about, regarding taking it and what to expect. He told me (and everyone else, I'm sure) to take it in three even doses, when you first wake up, at 1:00 pm and three hours before you go to sleep, going up by 20mg a week. He says you shouldn't experience any side effects and you'll sleep like a baby. He obviously never took it. I don't know about everyone else, but sleep like a baby I did not. In fact, I didn't sleep at all. Thank God, I already had a prescription for Seroquel (for anxiety) and it knocks you the fuck out. Nothing else (at least for me) could counteract the insomnia caused by the baclofen, not even benzos. If I didn't have the Seroquel, I woulnd't be able to take the baclofen, period. And as far as the side effects, well there are more than enough posts on here talking about that.

He is apparently under the impression (by what Dr A. told him) that it is incredibly esay to take and has no real side effects, and no one seems to be able to convince him otherwise. I personally got disgusted by him, when I tried to get in touch with him in November to discuss with him the horrendous side effects I had been having. I was already not really looking forward to talking with him about it, because of what other people had told me about him basically sticking his fingers in his ears and going, "La la la la... baclofen wouldn't cause that and you can't tell me otherwise." So, when I finally got myself ready to call him and try to explain what I had been experiencing, I called him and said, "Hi, Dr. Levin, this is John Smith in Las Vegas. I apologize it's been a while since we spoke, but I just wanted to call and check in, and I need to put in a refill request." He said, "I'm in the middle of a session right now, so I don't know how much I can say at the moment." Ok, fair enough. So, I said, "Oh, ok, do you wnat to call me back when you have a free moment?" His next statement was one I've never received from a doctor before... "Well, I don't know why you're calling." HUH??? I thought, well, I'm a patient of yours and want to discuss my treatment, and if you call me back, you can find out then. But, I was so stunned by it and put off that all I could spit out was, "Uhhh... I'm calling about baclofen." He said, "Oh, ok, well all you have to do is have your pharmacy contact me and I'll verify the prescription." I just said, "Ok, thank you very much," and realized right then I would never call him again for anything other than refill requests.

Anyway, I've been slowly backing off over the last three weeks, since stopping. I'm at 200 now and seem to be doing pretty well. We'll see how it goes from here...

[bleep]

Finally! (My Baclofen Story)

Good to hear mm.

Man, it's such a pity that the one champion of the cause is such a fruitloop. He must have hundreds of patients, all bitching about SE's, and still doesn't change his tune. I can't understand the mental process that must involve.

I don't know why people bother, tbh. Just order online. Is it cheaper through him?

[redhead77]

Finally! (My Baclofen Story)

I've said this before and I'm going to say it again. I think Dr L might be suffering from something like Alzheimer's. My last interaction with him seals that thought for me. I had an in office appointment with him on 3:30 this past Tuesday. I had to cancel the appointment due to babysitting issues. I knew by the night before, when my sitter needed to cancel, so I started calling him when I woke up in the morning. I started calling at 6:30 and it was busy and remained busy, until I finally got through at 1:18 pm. I spoke with him briefly, and told him that I had to cancel and why. He was very kind (as has always been my experience with him). He told me I could call him at home that night to talk if I wanted. I didn't want to do that. For a number of reasons. It's been over a year since I've seen him. I wanted him to remember me when he saw my face, and remember how long I've been at this. I also wanted to have a frank discussion about some rather serious issues I felt that I was dealing with. I didn't want to get a generic response from him about how to handle them, or even worse, that they weren't happening due to baclofen at all.

Here's the kicker: Dr L called me at 4 pm. I answered the phone and he said "Hello Redhead, it's Dr Levin". There was a pause and I wasn't sure where this was supposed to go. I then said, "Hi Dr Levin, I cancelled my appointment, remember?" There was a pause and then he said, "yes, I remember. I was just seeing if maybe you had a free minute to talk now." I said, " Thank you so much. I appreciate you trying to do that. I have to run and get my kids haircuts, they have pictures tomorrow, and they are all home right now." Anyway, I hung up and did appreciate that he reached out to see if I had a minute. Then I noticed I had a missed call on my cell phone. It was at 3:33. It was Dr L and he left me a message. He said, "Hi Redhead, it's Dr Levin. I see you aren't here yet and I'm not sure if you're coming. I'm going to probably need to take another appointment but maybe you could see me later in the evening."

Wow, I was stunned. It was only 2 hours after I had spoken with him. He's always been kind and easily reachable, and for that I am grateful. It gives me mixed feelings about even posting this. Like I'm betraying him or something. The bottom line is, there's some strange behavior on his part. It's been posted by many. I wish this weren't the case. He's a kind and generous man, and saw me for free for a period of time when I couldn't afford it.

I've never had issues with my refills. Both of my pharmacies have the option of contacting the doctor for refills when you are about to run out. They offer to do it. They ask for 48 hours before I would run out for time to do it. I just respond yes to them getting the refill. Then my script is always ready. I've never asked how they do it, if they call or fax, but they never tell me that they have a problem. I think they must call his office.

Bleep, mine is cheaper through him. If you have insurance then you pay a copay. All insurance companies are different, but my copay is small.

[Ne/Neva Eva]

Finally! (My Baclofen Story)

bleep;1480798 wrote:
I don't know why people bother, tbh. Just order online. Is it cheaper through him?

Yep. For some of us. Costs me about $10 for more than a month's worth of mg. (I don't even know anymore.)

But it's also legit. And that's important to me for several reasons. I like having a pill bottle with my name and the actual Rx on it. I don't have to have it, and would take whatever bac I needed to take, but it's a comfort and...legit. Should I end up in a place where people wanted or needed to know what I take then they'll have the bottle and a doctor's number on it. Of course, if they call him, he will assure them that nothing has anything to do with baclofen (SE or anything else) but that I should not take anything else. aaaaaaaargh. He's a very likable fruitloop, though.

[musicman]

Finally! (My Baclofen Story)

Yeah, with insurance it makes life a whole lot easier. It gets rather expensive, and difficult to keep up enough of a supply, when ordering online, as you get into the higher doses. When I finally do get my refill in hand, $15 for 450 20mg pills suddenly makes me feel a whole lot better about the hassle of dealing with him.

Lo0p had a great quote about him in another thread...

Lo0p;1419172 wrote: That's him. Love him to death. His shortcomings when it comes to knowledge just float away on little puffy clouds when I listen to that almost seductively soothing voice of his. :H

[YouKayBee]

Finally! (My Baclofen Story)

Interesting you used TSM too, some say bac and nal attack the issue from both angles for those that need that.

[musicman]

Finally! (My Baclofen Story)

Wow, I couldn't be more wrong about the prices. I had heard of these other places before and I could have swore I checked the prices everywhere, when I first started looking. Maybe they changed their prices, but it looks like River Pharmacy and AllDayChemist (what a dumb name) have much lower prices now... $.36/pill and $.51/pill. Maybe manufacturing costs on bac have gone down because of larger production. My apologies!

[RedThread12]

Finally! (My Baclofen Story)

Don't forget Home - Phoenix Research Labs!!!

My kangaroo and I are traveling around India with liquid bac in a plastic bottle marked in ml's and a syringe. We still have the original ones, but I see that there are now 1 ml syringes available, which makes it even easier to start out with low dosages. I do keep a sizeable stash of pills with me, and at home, and at friends' homes. But for the quality and the cost, Lo0p's product is our preference. I had a mega-prescription from Dr. L that I've considered contacting him about for refills, but I can buy bac OTC while I'm here for about the same amount Dr. L's script costs me a Walgreen's. Kanga and I are without health insurance.

Just sayin' - if dealing with the good Dr. is a stumbling block, we are ever-so-blessed to have a reliable, inexpensive source for great baclofen.

[musicman]

Finally! (My Baclofen Story)

But, yes, I was doing both of them. Let me explain a little bit of the back story of how I ended up with the treatment course I did...

I actually started taking nal back sometime in 2009. My doc at the time, was trying to find something to help me stop drinking. He said there was something "new" that was supposed to help you drink less, referring to naltrexone. I knew it wasn't new, as I knew years ago it was used for rapid detox from heroin, but he said it was supposed to to work by blocking the "high" you get from drinking. I'm guess he had heard something about TSM but didn't know it. He prescribed it as most docs do, to take once a day. I didn't really notice anything after taking it for a while, so I stopped.

I tried taking Campral for a while, with moderate success.

It wasn't until sometime in 2011 that I began to find info on TSM and suddenly realized that I had been taking it all wrong. I talked to him about it again, telling him what I found regarding TSM and he was like, sure, give it a shot. So, I started doing TSM, but didn't really experience any positive results.

After doing more research, I realized it would probably take someone like me a year or so to really see any results from it. So, I just kept at it.

During the course of all this, I started discovering some info about baclofen being used for alcoholism. I was doing TSM, but knew that they said it only seemed to work for about 75%-80% of people. Having already figured I was probably one of the ones it wouldn't work for, I told my doctor I heard baclofen was being used as a treatment for alcoholism. He hadn't heard anything about it, but he was a forward thinker and open to anything that might help, so he prescribed me 10mg a day. Of course, nothing happened.

I started reading more about it and saw that they had run clinical trials, administering up to 30 mg a day, with great results. I told him about this that I didn't think 10mg was enough and he increased it to 20 mg day. Of course, still nothing.

Then, I came across info about Dr A., what he had done, and the "massive" doses actually required for bac to work its magic. I knew my doc wouldn't be open to prescribing doses anywhere near that range, so I started ordering online and titrating up.

I had already been doing TSM for several months, so I didn't want to stop, in case it was actually working. I didn't want all that time to be for nothing, if my brain was actually starting to be re-conditioned.

Over the next few months, I did begin to drink less, but it was near impossible to tell which was responsible, as I had been less than scientific about my approach. So, I figured until I knew it was one or the other (or both), I would just keep doing both. Couldn't hurt, right? I figured whatever gets me there.

Red, I am already taking liquid from Phoenix. I just want to supplement my supply with backup pills.

[musicman]

Finally! (My Baclofen Story)

Ok, Ne, you can say I told you so. I don't know what happened... All was fine until this week. I started having a bit of panic at work, due to stress, earlier in the week. Easily managed with some ativan. Then, yesterday and today getting progressively worse. Today, having a full on panic attack in the later part of the day, precipitated by nothing, by the way. It's actually going full force, right now... bad.

So, I'm not sure where to go from here. I am down to 180 at the moment, but not sure if I should go up or down from here. The other cases you saw, did they do better going up or down? I was at 200 for about a week and went down to 180 when the panic started creeping up, figuring going down would help.

[musicman]

Finally! (My Baclofen Story)

Anyone have any input here? I can somewhat manage with ativan, but I'll burn thru my script pretty quick at the dose and frequency needed to prevent/quell the panic attacks.

I need to be able to get this under control quickly, so I'm able to continue working.

[bleep]

Finally! (My Baclofen Story)

I can't give any advice, but what has happened is that people found relief at different doses than the one they were currently on. So go up or down, just try changing it, and see where you go. From what I've read, the relief should be fairly quick in coming.

[Ne/Neva Eva]

Finally! (My Baclofen Story)

Morning, Musicman.

I'm sorry you're struggling. I don't have any quick fixes to offer, and I don't know that there are any. My perspective is that any kind of dramatic change related to baclofen exacerbates the problem.

I guess I would suggest managing the anxiety. Period. As in let that become the sole focus of life for a little while. Meds help, but really it's about riding through the mind-fuck that results in a panic attack.

For me, when I was titrating up, that meant using breathing techniques and thinking positive thoughts. I know this sounds trite. It's not meant to be trite, and it's not easy. Much harder than anything else I had to do when it came to managing the process. In some ways, it still is.

I limited my stress in every way I could, including limiting tv and news stuff. (I still do this. I cannot understand what is entertaining about the majority of television, much less the news. egad.) Exercise and nutrition play a big part. Keeping them within reason is important too. I think we in particular, and humans in general, tend to think that if a little bit helps, a whole lot should help better and faster. Not so.

There are a couple or 5 threads you could read as cautionary tales. I generally think that reaching out, helping others, sharing the stress, also helps me a great deal. In fact, anything that gets me out of my own head.

Bottom line is that panic attacks (and anxiety in general) is absolutely predictable. If you can figure out how to predict it (it builds) and cut it off before it starts, using whatever you can, then you win the game. If not...Then it just sucks.

And btw, the additional pressure of "I must get better or else I won't be able to work and everything in the known world will fall apart" is not at all useful. You'll be able to do what you need to do when you need to do it. Even at my worst (and it was a bloody nightmare at times) I did.

Based on your posts, and your experience, I have absolutely no doubt that you'll see this through without chaos and destruction. (Those thoughts, as I've already mentioned, are at the base of the entire issue.)

You beat a chronic, incurable disease with medication on your own. I'm pretty sure that there isn't one of us who can't overcome every damn thing that comes up after that experience. Stay strong. Get proactive. Simple, but not easy.

[musicman]

Finally! (My Baclofen Story)

Thanks for your responses. I was actually going to post last night, but didn't have a chance.

I don't want to say anything too prematurely, but I think I may have already staved off the panic attacks.

Friday night, I finally fell asleep around 3:00, body and mind still in full panic attack mode. I thought to myself, before I went to sleep, that if I was still like this in the morning, I might need to go to the hospital and check myself in.

Fortunately, I woke up not yet in a panicked state and immediately began taking ativan and kept up with it throughout the course of the day. Any time I began worrying about having another panic attack, I was able to redirect myself and keep myself from getting into the spiral of causing one by worrying about having one. So, no issues yesterday/last night. Today, I did the same thing and had no issues. The ativan actually wore off about two hours ago, and I seem fine.

I took off the next few days at work, figuring even though I seem ok at the moment, I was afraid the stress of work tomorrow might send me right back into that state.

As you know, the longer you can go between attacks, the more your body relaxes and starts worrying less about having another one. You know, the fear of having another panic attack is what will actually cause another one to happen. When they just happen recently, you are far more likely to fall right back into it, because of the fear.

I went down to 160 tonight and will see what happens over the next few days, regarding anxiety, panic and cravings.

Will keep you posted...

Oh, and I know the thought of "gotta fix this as soon as possible" will not help. I just wanted to get a sense if people thought going back up or down would provide better results, so I didn't unnecessarily prolong the problem.