Another note from Dr Ameisen

[Cinders]

Another note from Dr Ameisen

As for the research on other meds, I can't speak to that.

But, the possibility of going blind on Topamax is very real. It is a known SE, long before OA posted this.

Like any drug, Topamax can be dangerous for some of the population. I am allergic to it and was so disappointed when I realized I couldn't try it as an option.

That is why I believe very strongly that anyone taking any of these meds should do it under doctor supervision.

My doctor takes renal function tests regularly because I am on Baclofen. She is just being careful with my health.

Cindi

[Winks]

Another note from Dr Ameisen

missyabby1;1096132 wrote:
Look, at the risk of bringing doom upon myself, my instincts of this statement was that of a rant of a delusional man.

Perhaps he is not delusional. Maybe he is ignorant? Perhaps he is drunk? Possibly he is shamelessly using MWO to promote himself? This forum really has become a propaganda machine for him and his book. Lots of free advertising. But that he could actually post something like that as an URGENT warning, here on MWO? He is a piece of work. I would not trust the man as far as I could throw him.

[Ne/Neva Eva]

Another note from Dr Ameisen

hmmm. hmmm

[missyabby1]

Another note from Dr Ameisen

Hi Cindi,

As I said, I was just stating it as I saw it. I didn't know about the SE of possible blindness on Topa.............I guess I was just gobsmacked at OA's total dismissal of everything else but Baclofen. Hey maybe he is right but I just don't like blanket statements without the correct research and backup proof. It is almost like saying that you are going to be an alcoholic for the rest of your life if you don't take Baclofen. And there we could enter into a whole array of debates.

Anyway, as an aside, love your guts and perseverence in your crusade towards sobriety. Admire you heaps.

Missy

[Winks]

Another note from Dr Ameisen

missyabby1;1096170 wrote: I didn't know about the SE of possible blindness on Topa.

The warnings about that very rare side effect existed before MWO existed.

Topamax: Use With Caution. Warning Issued of Rare Visual Adverse Reactions. About Headaches and Migraine

[Chi]

Another note from Dr Ameisen

Winks;1096163 wrote: Perhaps he is not delusional. Maybe he is ignorant? Perhaps he is drunk? Possibly he is shamelessly using MWO to promote himself? This forum really has become a propaganda machine for him and his book. Lots of free advertising. But that he could actually post something like that as an URGENT warning, here on MWO? He is a piece of work. I would not trust the man as far as I could throw him.

And you don't have an agenda?

LMAO It couldn't be more obvious.

Newsflash: Baclofen works for a lot of people. You are free to call it "propaganda" if that makes you feel better about.... whatever.... but your misery won't dampen the enthusiasm or sobriety for those that have found baclofen to be very helpful.

Buzz off. Oh, and one more thing, don't bother replying to me, you go on ignore in 3, 2, 1...

[Winks]

Another note from Dr Ameisen

Chi;1096187 wrote: And you don't have an agenda?
Nope.

LMAO It couldn't be more obvious.

Yes, perhaps I intend to someday financially benefit from my posts here.

Newsflash: Baclofen works for a lot of people. You are free to call it "propaganda" if that makes you feel better about....

The "propaganda" has nothing to do with whatever works for whomever. It comes into play when a subject is presented in a biased and misleading nature, such as the opening post here or the frequent discussions of making baclofen look good to newcomers. At that point it becomes propaganda.

[missyabby1]

Another note from Dr Ameisen

Chi , am I missing some thing here about agendas? I just responded to a post quoting OA and now we have you telling someone to buzz off? Do you know something that I don't? Seriously could you let me know here or just pm me.

Thanks

[PbarE]

Another note from Dr Ameisen

"Congress shall make no law ... abridging the freedom of speech..." (taken from the 1st amendment)

In other words, Winks and Abby are free to voice their opinions, As is Chi or anyone else.

FTR, here is my opinion: I am grateful to OA for his discovery about high dose baclofen, and I always will be. It was worked very well for me. I am equally grateful to Dr. Anna Rose Childress of Penn, who was actually the first person to discover the anti-craving properties of bac.

However, OA continues to taint whatever legacy he may have with these self-serving posts. This is an SE of Topa that is well known, and has been for a very long time. In fact, that is very well documented on this very site. I question his motives in bringing that back up.

I agree wholeheartedly with Cinders - these are all medications that need to be taken under a doctor's care.

[Road to Recovery]

Another note from Dr Ameisen

Excuse my ignorance

Hi All,
Please excuse my ignorance but where do these notes come from? I believe this is the third "note from Dr. Ameisen" from three different people. Does he just randomly pick a forum member and ask them to send these out on his behalf? I am confused.

[ignominious]

Another note from Dr Ameisen

It seems to me that Baclofen treatment for alcoholism isn't getting the coverage it deserves but that will surely come with time.

It would be negligent not reiterate this extremely serious SE of Topa in light of a new alternative which appears to have no permanent SEs at all. I don't see these as self serving posts but as posts by someone who is passionate that a cure he has discovered becomes mainstream as quickly as possible.

Baclofen has worked for me plus a lot of the people that I have followed on these threads. Those for whom it hasn't worked were generally put of by side effects not maimed by them.

[Guest]

Another note from Dr Ameisen

Do we actually know yet that high dose baclofen won't suddenly be found to have such a serious side effect?

Tracy A posted a while back that she didn't mind what side effects long term baclofen use (high dose) had, as long as it gave her some sober time.

So would anyone here accept 5 years happy sobriety, in exchange for the loss of a fairly important sense?

I am in no way saying Baclofen would or does have such a side effect, I am merely putting the argument forth.

[LadyLush]

Another note from Dr Ameisen

Uk,

I know the question is hypothetical but would I be willing to give up one of my senses to have a gratifying sober life for 5 years? My answer is yes, because if I continue on the path I am on I will not have a single sense left; I will be dead.
And if I am not dead in the physical sense I will be dead in every other way possible and a single sense would not matter.
5 years is 5 years

Lady

[Cinders]

Another note from Dr Ameisen

UK,

I would only be willing to give up my sense of smell, the rest are precious to me.

Believe me, I know, I am going blind in my right eye and it is so difficult to deal with and work.

Unfortunately, high dose baclofen is used on some people. It is used through a pump. These are people with severe pain from MS. How would anyone know if a symptom in a person like that is from the Baclofen or from the MS?

btw, I am going blind in my right eye from MS. I hate it. Luckily, my disease is not progressing very rapidly. It may never progress very far and just leave me with this blurry vision in my right eye, a drooping eyelid and occasional cluster headaches that are excruciating. Luckily, if it does progress, my doctor is going to take me off my current meds and put me on special shots for MS. You take them daily, or one brand you take weekly.

There are many new drugs that help stop the progression of MS. :-)

I am telling everyone this because I happen to know personally what it is like to lose one or our senses. It really messes with my sobriety. Some days I use this issue as an excuse ... Typical alcoholic here.

If Baclofen caused any SEs like this, I would stop it immediately.

Just my opinion, though.

I do need to add that many, many people take Topamax. It was the medicine of choice for my headaches. I was thrilled, I thought I could tackle two issues with one stone. Unfortunately, I am allergic to Topamax. :-(

What I want to say is the damage to eyes from Topamax affects a very small population of Topamax patients.

Cindi

[bleep]

Another note from Dr Ameisen

Road to Recovery;1096265 wrote: Hi All,
Please excuse my ignorance but where do these notes come from? I believe this is the third "note from Dr. Ameisen" from three different people. Does he just randomly pick a forum member and ask them to send these out on his behalf? I am confused.

Hi Road,

To answer your question, I have exchanged a few emails with Dr Ameisen. In the latest, he asked me to post this.

I am not too sure why he feels so strongly about the other methods, nor am I too comfortable with being a conduit, to be honest. However, I feel I owe the man, so posted this on his request.

He has said he plans to post here on MWO, although when is anybody's guess.