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**PhoenixRising** · July 17, 2010, 08:53 PM

My Conversation w/ Dr. LeVin

Interesting. I am taking Lioresal from AllDayChemist from India. I'm at 250mg and have not yet hit the switch, but feel I am close.
Keep us posted!

**wort** · July 17, 2010, 09:04 PM

My Conversation w/ Dr. LeVin

Hi Houtx,

I first went to my GP in January armed with Exkapa's book plus assorted journal articles, and he unhesitatingly prescribed naltrexone. The I went back at

the end of March with Ameisen's book + more journal articles, and he prescribed baclofen. The maximum recognized safe dose is 80mg/day, and was pretty sure

that no pharmacist would fill a prescription for more than that. He totally understood that this was a "high dose" approach, and quickly researched that

this is commonly done for MS patients, etc. Nevertheless, he wrote me two scripts for 80mg/day, and told me to take them to different pharmacies. This

worked fine. You would need at least two and maybe three to be on the safe side. These were the 20mg American made tabs.

I am currently at 350mg/day. To do this, I had to order off shore from All Day Chemist. They provided tracking, including notification when the shippment

made it though customs. Actually, had this not happened, I would have been in trouble - I just barely had enough 20mg tabs to titrate back down on. The

shipment arrived, and it was the 25 mg Indian pills (Liofen 25).

Anyway, from 180mg/day to my current 350mg/day, I have used the 25mg tabs exclusively. My SE's have been worse, but I attribute this to the higher dosages

rather that impurities in the Indian drugs.

I have quite a spectrum of SE's: somonlence during the day and insomnia at night. Sometimes I dripping with sweat, sometimes I have a dry mouth, often

simultaneously. I was recently at the dentist; she immediately noticed my dry mouth (I had just taken bac) then noticed I had a bunch of new cavities. She

said that dry mouth can cause cavities because it effects mouth enzymes. She told me to get a gum called Biotene Dry Mouth Gum. I had to get the phamacist

to order it (no prescription require). It really does help if you have this SE.

I have also developed breating problems. I thought it was asthma, and went to my GP. He had me do a bunch of breating tests, and this sent me into severe

breathing distress. They had to give me an injection of some sort of antihistamine, and sent me away with a host of inhalers, etc. I noticed that some pills

that he gave me were actually an antianxiety med (Lorazepam). On a follow up vist, I asked him: "You don't really think I have asthma, do you?" He

confirmed no, and showed me the breating test results that indicated that my bronchia were clear. Nevertheless, I often find it difficult to breathe,

expecially at night. It helps if I sit up ( I went out today and bought a recliner). More recently, I am suspecting sleep apnea: when I drift off to sleep,

I jolt awake making a choking sound. What ever it is, it is super scary. Somehow, it seems connected with the dry mouth.

Can you tell that I am grateful to have the help of my GP?

Finally, like you, I have problems with nausea. I continue to drink at the 50u/wk level, and finally realized that the nausea could in fact be nothing more

than a hangover, which baclofen could be making worse. Last Thursday, I decided enough was enough; it was time to go AF. I have been AF for three days with

only slight cravings that are easy to manage. I am not disinterested, but rather I can remain AF without obsessing. When/if I ever do hit my switch, I

should be able to the detect the absence of those last remaining cravings.

I am not sure how much higher I will go. My current dosage is
7:00a: 50mg
11:00a: 50mg
3:00a:75mg
7:00p: 100mg
11:00p: 75mg

I can go to 375 by increaasing at 3:00p or 11:00p. Increase both and I am at 400mg/day.

Ameisen hit his switch at 3.8mg/kg. I am 185 lb. Multiply by 0.454 to get my weight in kilos: 185*0.454 = 84kg. So Ameisen's switch dose was (3.8mg/kg)*84kg

= 320mg. For you: you are 145*0.454 = 66kg, and your Ameisen switch dose would be (3.8mg/kg)*66kg = 250mg/day.

Hang in there GF, you'll get there.

XOXO
-wort

**wort** · July 17, 2010, 09:24 PM

My Conversation w/ Dr. LeVin

Houtx,

I just read your post in Hoping4Better's thead. I hope you don't punt. Between this and TSM, you have been trying for a long time. I am very happy that you talked to Dr. Levin.

-wort

**beatle** · July 17, 2010, 11:28 PM

My Conversation w/ Dr. LeVin

Houtx, thank you for sharing your experience with us, and Wort, thank you for a very informative post.

You are both obviously well-informed, and fortunate to have a GP who works with you.

Where I live (Skandinavia), Baclofen is still an unheard-of treatment. I haven't tried to get my GP on board, although I probably could get her to prescribe a low dose imported at a high expense from another European land.

Instead, I have gone to an American psychiatrist (I am frequently in the US) specializing in anxiety. She prescribed Lamictal, which has had a slight (but good) effect on my mood swings, without any side effects. This experience opened my eyes to the idea that a holistic approach exclusively may not be enough for many people.

I now believe that many of us suffer from a chemical imbalance that no amount of therapy, nutrition, and meditation can heal. These help tremendously, and I would not be able to come to the place I now am without all of these.

I would recommend finding a private doctor who will work with you and prescribe baclofen. In the end, I don't think it will cost you more than the overseas stuff, and you will at least be under the care of a professional.

I am tremendously happy to hear that Dr. Levin has been able to help so many people who are not able to find a doctor who will work with them, be it because of their location or immediate financial constrictions. In these cases, the internet and overseas option may be the only solution. But from what I have read here in many other posts, most people have a positive experience with their products from India.

I apologise for rambling.

**hoping4better** · July 18, 2010, 01:54 PM

My Conversation w/ Dr. LeVin

houtx,
I pm'd you. This is such good news!

**houtx** · July 18, 2010, 02:57 PM

My Conversation w/ Dr. LeVin

well...I was feeling pretty good about things - am titrating down to 80 mgs until I see my Dr., but wort, your post scared me half to death again! All those SEs! My GAWD - I don't know if I can go through that. Somnolence during the day, insomnia at night, sweating, apnea, dry mouth, etctetctec

Yikes!! I just don't know -

**wort** · July 18, 2010, 10:04 PM

My Conversation w/ Dr. LeVin

Hi Houtx,

Another AF day, and the SE's are MUCH improved. If it weren't for my breathing problems, I would feel almost normal. So please don't let my preoccupation with SE's scare you.

It is becoming increasingly clear to me that many of the baclofen SE's are simply due to hangover symptoms amplifed by baclofen. Going AF as much as possible might make things much easier.

I've had a tough time tonight. Company came over, and I forgot to take my 7p 100mg dose. Intense cravings reminded me at 10p - so I took 100mg then. It is now 11p (time for my 75mg dose). I'll wait a bit - cravings are starting to subside. I need to be more careful.

Best,
-wort

**eight days a week** · July 19, 2010, 05:40 PM

My Conversation w/ Dr. LeVin

Hi houtx, great to hear that you're being so proactive about Baclofen, and so careful

Dr Levin, bless him, seems to have reassured so many folk from here, and made an incredible amount of time for people. It's really good to see someone in his position really taking the lead in pushing this treatment to anyone who feels they need it.

But I've said it once, and I'll say it again, I just cannot understand his view on the SEs. When he was first introduced to the forum, I think we were told he'd treated 40 patients with 100% success and expected that he could help anyone achieve 'the switch' without SEs.

Well, I had the strongest side effects at each increase of dose, even taking things incredibly slowly. The fastest I could get to 80mg daily was three months, and even then in those first few weeks I count myself lucky that I didn't have a serious accident from dizziness/falling or somnolence (I almost passed out in the snow at night a couple of times putting the rubbish (trash) out).

After quite a few days at one dose (I think it was either 70 or 80mg) I had one of the scariest episodes of my life, which people on here told me was a Baclofen overdose. But, I'd been on that dose for days!

This was under the guidance of a specialist extremely experienced with Baclofen. He won't prescribe above the UK maximum of 100mg a day unless you're very local to him, precisely because (I believe), although very safe once you're used to it, it's a medicine to be taken very seriously.

I should point out that this is the official UK Baclofen that I take, and that I wrote to Dr Levin some months ago to point out my side effects, feeling that he should know that people do suffer from them, but I haven't heard back from him. I will try to email him again.

So, I'm not sure it being about the Indian Baclofen. I wouldn't rule it out, and the doctor's no doubt absolutely correct in that it's best to be really careful, but where did it come from houtx? I used to get my Nal from AllDay and it was absolutely the real deal, identical in effect to the UK prescription stuff. And my previous Baclofen (Pacifen) from InHouse (from NZ I think) was likewise completely legitimate, albeit slightly different in effect somehow - almost imperceptibly - but of the same strength, or at least not so I noticed a difference.

I know some folks on here have said that their foreign-bought Bac wasn't as strong, and perhaps not the real deal, so perhaps that is it...I'd never heard anyone (until now) getting SEs when their doctor says they shouldn't be, so that's a new one, and makes it all the more interesting where this batch came from.

I don't understand about getting the 20mg tablets rather than the 10mg - if they are both from US producers, then they'd be the exact same formulation, just in different sizes...

The proof will be in the pudding when you get some local stuff to compare it to - please let everyone here know! Just a thought, but if your Bac from abroad really isn't the real thing, then it'll be really important to take things carefully the first few days when you switch.

Anyway, all the very best to you

eight

**houtx** · July 24, 2010, 12:44 PM

My Conversation w/ Dr. LeVin

I am staying at 80 mgs until my Dr visit next week, may even go back down to 60 and get off altogether. The SEs have subsided substantially at this dose, but I had a major set-back on a visit to Dallas this week. I was out with friends, had too many drinks and then was supposed to go to my dad's & have dinner w/ several family members, including my own 2 children. When I called to say I was on my way, they knew I was intoxicated & sure enough, when I showed up that way...

Well, I proceeded to act like a fool, repeating myself and acting like an obnoxious drunk. I haven't been like that in AGES and can't believe it happened. The teenagers left after awhile (they later said they thought I was funny...big haha), my dad came over the next day and had a talk with me. I apologized to everyone involved, felt like an idiot, ashamed and embarrassed and horrified I lost control - but especially that I drove. A few days later my dad emailed my kids about "this situation with your mother" and "rest assured you are not alone in this" and "I will send you some ideas and ways we can help her very soon".... OMG. I was furious. Understood his good intentions, but wrote him a scathing reply that I'm sure really hurt him.

I'm upset at myself more than anything...but still hated that he made it sound like I was a falling down drunk 24/7...there's more to the story, but suffice to say, it really killed me on so many levels. I have been hating this BAC anyway, hated the fact I have gained weight, felt like a zombie, thinking I'd have to go up to 250 MAYBE to HTS...I am ready to give it up. Ever since the debacle this week, I drank the evening I got back, but otherwise, a weak vodka tonic 4 nights. To me, that's practically AF! LOL

I have been thinking about what I'm doing, what I've done, all this bullshit with NAL and now BAC..."hitting the switch"...I hit the switch in my kitchen the morning after I got back and the light came on there and in my head. I decided I am going to hit my own switch here. I am going to have my one weak vodka/tonic if I want it and just see how it goes. The very idea of wine scares and repulses me. I am sick of being dependent on AL and under its influence and control. I am the one in control and I am going to take it one day at a time and just decide "for today" what I feel like doing.

On top of that, I am considering getting a breathalyzer for my car that I can use should that horrific circumstance of being stupid ever present itself again. I usually NEVER drink and drive - not out of control anyway. It could have easily been a tragic outcome of being arrested, hurting myself or godforbid someone else...It was a wake up call. Even though I blasted my dad about it, on the one hand he was concerned about me, I know. Still I needed to stand my ground - I did not need his intervention on behalf of me or my kids. UGH - it's all so painful. I hate life sometimes & just trying to preserve, reclaim and redo mine right now..without relying on the false hope that some magic formula of pills is suddenly going to make me want to quit.

And then what - stay on it forever?? And if I'm in an accident and unconcious for any period of time, there I am on mega doses of BAC and I tank from withdrawal. It scared me being on NAL for much of the same reason, only on NAL if you have to get on pain killers, it could block the receptors that do that.
It's just a scary prospect all the way around. I need to get control and that's what I plan to do. On my own terms, one day at a time.

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