My Baclofen questions

[FoxMA]

I wrote the first part of my introduction to be able to give as much possible data for people who could answer the questions that I now have, especially regarding how to save my life with Baclofen. If you have the time please read it, but if you don't and still can answer my questions about Baclofen, please do so, because right now if I don't move fast I'm sure I'm going to die.

https://www.mywayout.org/community/f1...all-40971.html

Reading Dr. Ameisen's experience has been fascinating for me, as almost every single thing he wrote has been something I can identify with. This is probably the first time I have the feeling that I can cure myself, and I would like to go as fast as possible, but as desperate as I am, I HAVE to get answers to basic questions before I can start my treatment. So I have some questions and I hope to find the answers with your help guys:

1) I'm living in the US. Has anyone experienced problems with customs when ordering Baclofen online (I guess from Canada)? Is there an ideal quantity to order and/or a limit not to reach before going into troubles with the customs?

2) Assuming you can't or don't want (for insurance purpose) to obtain a high dose Baclofen prescription, how do you deal with situations like having to travel abroad (something that unfortunately I have to do from time to time) or the risk of being incapacitated and not being able to tell anyone that you're under high doses of Baclofen? Is there any sense in trying to get a prescription from a foreign country just to make sure that you have some kind of document without killing your US ability to be insurable?

3) Considering my case: 6'5" (1.95 m) tall and 220 lb (100 kg), and my current state, I guess I can expect to need extremely high doses of Baclofen, perhaps even more than what Dr. Ameisen used (270 mg at his peak) and even more than what has ever been used by a human being (300 mg in neurology according to available data). Of course I hope it's not going to be the case but I'd like to know if any of you ever had to go over that to hit the switch.

4) In the worst case scenario, what happens if you get into a situation when you can't possibly access Baclofen for several days? I've read about the withdrawals symptoms but can you at least make sure to avoid seizures and possible lethal outcomes by drinking again (in a total nightmarish scenario)?

[Lo0p]

My Baclofen questions

1) We generally don't have problems with customs. My advice: order A LOT, like 10,000 mgs. All Day Chemist is the cheapest there is. I think my last order (8,750 mgs, 350 25 mg pills) was $200 with shipping.

2) Incapacitated: medical alert ID. Other stuff: can't answer that.

3) We don't know that body mass is that big of a factor. In general, it usually is. We don't have any specific evidence that it is in play here just a hunch. I'm 5'9" and weigh 160 lbs and I hit my switch at 300 mgs. I've taken more than that in one day before. I took 600 in one day by accident with no adverse effects at all. Most people seem to be much more sensitive to it than I am though.

4) We had one doctor on here claim that you could avoid baclofen withdrawals by drinking. I didn't believe him. Don't run out. DON"T EVER RUN OUT. If I ever don't have any I will pick my ass up, drive straight to the emergency room and tell the ER doc that I am physically dependent on baclofen and will go into withdrawals in hours if I don't get some.

[RedThread12]

My Baclofen questions

Welcome, FoxMA:

I have some experience that might be helpful. Maybe others will have more to add.

1) Here's a link to a post that discusses ordering baclofen. I get mine from Inhouse - as far as I know, this information is still accurate:
https://www.mywayout.org/community/f2...ine-35483.html
I've also ordered from 4rx and some other place (don't remember now) and have never had any problem with any of them. Inhouse comes directly to my mailbox. The others require a signature, I think. I've never had any issue at all in receiving shipments, although 4rx is really, really slow. Inhouse is very quick and also has an expedited shipping option that makes it even faster. I don't know about customs and quantities. I've ordered as many as 4 100/10mg containers, with no problem. If you're taking 300 mg/day, that won't last so long, but maybe you plan to start with less? To my knowledge, no one in the US has reported customs issues.

How much to order depends on how quickly you plan to or are able to titrate up. There are several threads in this part of the forum discussing titration rates. And you've got the book. I suggest you order what you anticipate will be two months' worth of baclofen with your initial order, or re-order soon after you get your first order. Eventually it's good to always keep at least a one month supply as back-up in case anything happens to an order.

2) I just deal with the risk. It's considerably less than drinking like I was. There's a post somewhere about obtaining a medical card that states that you are taking baclofen and what the dosage is. That's one precaution you can take. I travel abroad. Never ever had anyone ask me about medications. And I've traveled with a lot of them, without prescriptions, many times.

3) I don't have any experience with dosages over 300 mg/day.

4) There's also a thread somewhere in this forum that discusses the scientific basis for the idea that drinking will mitigate baclofen withdrawal. Fortunately, I've never had to face that situation.

Hopefully there are others whose experience responds more directly to your questions, but this is a beginning. I stopped drinking myself to death the first day I took baclofen. Freakin' miracle. Lots more good things have happened for me since then. It doesn't work for everyone, but it certainly has for me. I'm all in favor of you trying it as quickly as possible. It occurs to me that traveling internationally is not going to be an issue if you're dead; the possibility of an inordinately high dose is no reason not to start - you'll figure it out as you go; and, although the possibility of being forced into baclofen withdrawal has its frightening aspect, for me, it was and is far less frightening than what I was doing - rapidly drinking myself to death every day.

Good luck, Fox. I sincerely wish you all the best in finding your way out. Although it's not particularly organized, there's tons of invaluable information about baclofen in this forum. Reading through it all will give you confidence and clarity about what to be aware of as you move forward.

[FoxMA]

My Baclofen questions

Thanks a lot for all your answers! Yet again I would like to hear more about your experiences while traveling abroad. Do you carry a prescription? What if your luggages get lost?

[RedThread12]

My Baclofen questions

I'm leaving the country tomorrow for five weeks. I have no prescription for baclofen and I have almost a month's supply (140 mg/day just now) in the backpack I carry on, and another month's supply in my checked baggage. They are small pills in small containers.

I've lost luggage traveling abroad, but never permanently. I think the longest I've ever waited was about 10 days. And like LoOp says, if something critical comes about, there's always the option of going to a hospital or finding a doctor.

I have NEVER been questioned anywhere about medications I'm carrying. Maybe I'm missing something . . . but I've traveled not only with baclofen without prescription but with whole bagsful of other meds that I can buy inexpensively abroad and bring home to the U.S. That's what my experience has been. Hope it works out well for you, too.

[Greg]

My Baclofen questions

I believe that the benefits of baclofen outweigh the risks, but the sudden withdrawal scenario is still a real possibility if someone became stranded in a remote area or incapacitated in a medical facility. Most doctors would never have heard of baclofen being taken in doses of 150/200/250 mg per day and some may not even believe a patient's story about this until severe symptoms begin.

Has anyone heard of diazepam, phenobarbital, or other commonly used withdrawal medications being used for baclofen withdrawal? Obviously this would be the normal action taken by a doctor treating someone dependent on benzos or alcohol, and I know that one member said (sometime last year) that GABA-agonist substances can all substitute for one another. I have wondered if this includes baclofen, as it is a GABA-B agonist not a GABA-A.

[billyb]

My Baclofen questions

Hi FoxMA, I'm from your neck of the woods up here in MA!

I've been taking bac since December of 2008, and it has been fantastic. Up until a month ago I was doing it without a prescription. I bought from a number of places online, but I found that Inhouse pharmacy was quickest shipping to MA, usually about 10-14 days. And, their prices were the best (although I never tried alldaychemist). Customs has never been a problem.

For traveling, I would calculate the amount of pills I needed for the trip, and put that amount in my suitcase, and then put the same amount in my carry-on. Then, I would calculate the minimum I could get by on for the trip without suffering withdrawal (I figured about 30-40% of normal dose), and put that much in my pocket. I figured that's a pretty safe way to go.

If you're worried about customs and such, just put the pills in an empty aspirin bottle.

For extra safety, I recommend putting a card in your wallet right next to your driver's license saying "Attention Doctors" in big letters, explaining that if you end up incapacitated in an emergency room, a very likely cause is baclofen withdrawal, and then state your daily dose.

I wouldn't worry about the 300mg level for now. Everyone has very different effective dosages, and it's impossible to predict where you will end up, regardless of your weight. (For example, studies in alcoholic rats showed extremely wide variance in effective baclofen doses - anywhere between 1-5mg per kg of body mass. So there's no telling where you might end up on the even less-studied range of effective doses in humans).

So if it were me, I would just take it one step at a time: start at 30mg, and increase by 10mg every three days (depending on how you handle the side effects). If you get up in the mid-200s and still don't see any benefit, maybe then you can start thinking about what to do about the 300mg level.

Good luck!

[FoxMA]

My Baclofen questions

Thanks billyb for your precise answers!

You said that up to until a month ago you were doing it without a prescription, impliying that you now have one, right? Could you elaborate on this? (what dose? how difficult was it to get it? what's the impact on your insurance?)

[billyb]

My Baclofen questions

I get insurance through an employer so rates are pooled and medical records are confidential. But, should I ever need to buy private insurance in the future, I will fill out the forms by saying that I take baclofen for anxiety, and I could probably get my psychiatrist to back me up if I need to. Anxiety is the underlying cause of the alcoholism, and rather than take potentially-addicting benzos for it, I take baclofen off-label.

I was up to 150mg at my max dose, and then got down to a maintenance dose of 100mg. I told my doctor that I was taking it without a prescription, and he referred me to a psychiatrist. The psychiatrist wasn't happy that I was taking bac, and wanted to prescribe me naltrexone or campral instead, and to slowly reduce the baclofen.

But, my insurance didn't cover either of those drugs, so she reluctantly agreed to prescribe baclofen, as long as I would continue to reduce my dosage to a lower maintenance level. So, she prescribed me 80mg for two months, and next time I go see her I will probably go down another 10 or 20mg.

I was at 100mg for about 9 months, so I was pretty comfortable with reducing it a bit further at that point. 80mg hasn't been very difficult. I'm not sure how it will be when I reduce it further, but I'll just have to take it as it comes.

Ameisen was able to reduce his dose all the way to 30mg, but that was over the course of five years...

[FoxMA]

My Baclofen questions

Excellent, thanks again!

I was not aware that Ameisen was down to 30mg, that's very reassuring for me. Do we have an history of his dose somewhere?

[Henrietta]

My Baclofen questions

There are a lot of good answers here. I only have one thing to add.

I was also very worried about an interupted baclofen supply in a worst-case scenario. So what I did early on was to create an emergecy baclofen pack that consisting of one day of my current dose, plus a second day's supply minus 10 mg, plus a third day's supply minus another 10 mg, etc -- all the way down to zero. In other words, when I was at 100 mg, I added up 100 mg, plus 90 mg, plus 80 mg, etc, which gave me an emergency supply 550 mg of baclofen that I carried around at all times and kept separate from my normal baclofen supply. This pack would have allowed me to safely tirate down by 10 mg a day in the event that my online order was lost, confiscated, you name it.

Now I didn't travel outside the country, but I travel in the US a lot. If a TSA guard were to threaten to withold my meds, I would simply not get on the plane. But frankly, I don't think they are really in that business. I've never had any problem.

My point is that this emergency pack completely eliminated the anxiety about my baclofen supply. Stick with it FoxMA! I was in a last chance situation too. I can honestly say that the he results are more than worth the logistics and the side-effects. We're with you!

[billyb]

My Baclofen questions

Ameisen mentioned that he was down to 30mg in an interview he did. I can't remember which one it was, but it's probably one of the ones he links to on his website.

Right now I can't imagine going that low, but over the course of a few years, it sounds pretty plausible.

[beatle]

My Baclofen questions

I travel internationally a lot, to and from Europe, the U.S. and Asia. I have never had a problem with customs. (But that doesn't mean I never will.)

I also carry a 10-day supply in my carry on, figuring that if my luggage is lost, that would tie me over, and I could titrate slowly down while waiting for the luggage.