Baclofen and SEs... what is working for me

[beatle]

I have found in the past 3 days that by cutting down each baclofen dose significantly, but taking them much more frequently, the worst of the SEs I was experiencing have been significantly mitigated.

This is nothing new for me, having found that I could not handle 40mg at a time, and even 30mg often resulted in very uncomfortable side effects.

But I have experimented with going back to 20mg doses, even 10mg doses, at 1-3 hour intervals.

I have not done this systematically at all. I am feeling this out as I go. All I can say is that I have managed to get up to 160mg with no intolerable side effects by doing it this way.

I'm working on gaging my body's reaction.

Of course, implementing this kind of dosing is not easily fit into a regular schedule.

[Lo0p]

Baclofen and SEs... what is working for me

I'm glad it seems to be working for you. That's got to be a little eyebrow raising at work. I'm a little familiar with that.

My days used to look like this:

545: wake up, coffee 2 types of pills
630: cardio
8: meal
1030: meal
1200: more pills
1230: meal
200: 200 mgs baclofen
300: meal
445: apple, more pills
530: gym
630: meal
800: meal, pills with meal
later: naltrexone if I was going to drink
later: more pills if I had trouble sleeping

I used to tell people that I was on a diet, or I was a "fitness geek" but they never understood so now I just tell them I get low blood sugar and I have to eat all the time. All of these pills were just natural supplements like Acetyl-L-Carnitine and Alpha Lipoic Acid and stuff like that.

It can be done beatle...I can attest to that! I had a system though. Good luck! :H

[beatle]

Baclofen and SEs... what is working for me

Lo0p;893367 wrote: I had a system though...

I'm not sure what you mean by that.

[Lo0p]

Baclofen and SEs... what is working for me

beatle;893369 wrote: I'm not sure what you mean by that.

Just that I knew exactly what and how much I was taking and at what time every day.

[beatle]

Baclofen and SEs... what is working for me

Sorry, I should have clarified. I keep track meticulously of when and how much I take. I do this for every supplement and medication I take. I just meant that I don't have a system, or protocol, by which I am working... just trying different things to see how they work. I can always go back and see what I have been doing, but I am working on how I feel-- always trying to achieve a certain amount (usually getting somewhere close, but varying by 10-30mg, depending on how I feel).

[tiptronic_ct]

Baclofen and SEs... what is working for me

We're cheering for you, Beatle!

You're on the right track, and I'm sure you can feel it!

[Sunnyvalenting]

Baclofen and SEs... what is working for me

For quite a few weeks I had to take just 10 mg every 3 hours so the peak of effect and side effects was spread out through the day. I am now able to take 20 mg 4 -5 times per day. Only notice the side effects if I am sitting down reading or watching TV. Otherwise no sleepiness. It is great I am on it over 5 mnoths without a drink
Sunny

[moglor]

Baclofen and SEs... what is working for me

I also find smaller doses more frequently helps with the SEs. I take mine about 3-4 hours apart, and only notice SEs when I take more than 20mg at a time.

[PhoenixRising]

Baclofen and SEs... what is working for me

Beatle, glad you're getting a grip on it. Spacing it out is definitely the way to go!!

I am up to 210 and have the worst SE's. I took 50mg at bedtime last night as I still had 2 pills left to consume and I had really bad SE's. I woke up and my head was like a lead bowling ball - I could not lift it off the pillow. Glad I didn't have to pee! I also get visual hallucinations when I am drifting off or waking up from sleep. Thankfully I realize what they are and since I did a bunch of shit when I was in my teens and 20s I am not all that freaked out by hallucinations I am having terrible jerkiness. I didn't have this until I went over 200. I wish I'd hit the switch already. Can it really be safe to take such a high dosage?

I have been at 210 for 3 days. I actually considered getting off of it last night. Last time I got up to 190 and freaked out and backed down to 30 and decided to have another go at it. I am still drinking but not nearly as much. I need a little encouragement. :upset:
Road to Recovery, such a nice guy and I really appreciate all his encouragement, but seriously I want to smack the guy- he hit his switch at something like 60mg after only a week or something incredible like that. (Just jerking your chain, R2R) I have been at it since November (well, I did quit once and restarted in March). Imean, good grief Charlie Brown!! :nutso:

[Virgil]

Baclofen and SEs... what is working for me

beatle;893354 wrote: I have found in the past 3 days that by cutting down each baclofen dose significantly, but taking them much more frequently, the worst of the SEs I was experiencing have been significantly mitigated.

Hi beatle,

I'm really pleased that you started this thread as I am currently experiencing some strange goings on, which I can only attribute to baclofen. Firstly, there is the balance (vertigo?) problem. To be honest, this problem is twofold - the balance problem itself and then a sensation that the ground is moving (sliding away) underneath me. Then, more recently, I have momentary vision disturbance whereby, typically, bits of my computer screen suddenly move or disappear. And then the most recent is noises in my head, which sound like pops. They occur at random and different places inside my head but note - not in my ears. A couple of nights ago when I was experiencing severe panic, the popping was occurring roughly every 10 seconds and continued until I finally got to sleep. Oh, and the muscle twitches, which are almost always in my hands.

That's a bit of background but now to the essence of your thread - namely, minimizing side-effects by taking more frequent, but lower, doses of baclofen. Currently, I'm up to 160mg per day, which I take as four doses each of 40mg. Prior to that, it would have been a combination of 30mg and 40mg. And, before that, four doses each of 30mg. Unfortunately, I've been less than diligent in recording any observable side-effects and at what exact dose they occurred. Presently, I space the doses a nominal 5 hours apart. Perhaps it would be better to take six doses throughout the day, which would mean that, for the foreseeable future, no individual dose would exceed 30mg. The doses would then be spaced 3 hours apart, which, I believe, is more in line with the half-life of baclofen. I have an old Palm PDA so I can set up this protocol to remind me - otherwise the inevitable is bound to happen.

Once again, thanks for bringing this important topic to our attention.

V.

[beatle]

Baclofen and SEs... what is working for me

Phoenix, I can very much relate to your experience, as it is more or less the same as mine -- hallucinations that are tolerable because of past experience with them, frustration at not reaching my "switch", despite high dosage (esp. compared to my weight -- I'm at nearly 3.5mg/kg), severe SEs (that I have only tolerated because of others' experiences shared here), and overwhelming despair when reading about others reaching their "switch' at low dosages (don't get me wrong -- these experiences shared by others are extremely valuable, and I highly appreciate those who have shared them).

Virgil, I hope this thread has helped others, and hopefully you will experience the same kind of alleviation (not elimination, mind you) from most SEs that spacing out the doses has had for me. I have had, and still have, all the SEs you mention, just less when taken at more spaced out doses.

I also appreciate all the responses here, which have greatly relieved my anxiety about taking lower doses at closer and more frequent intervals. Thank you all.

[beatle]

Baclofen and SEs... what is working for me

btw, I also experience tingling and quite a bit twitching of the hands (and sometimes the face -- around the mouth and in the cheeks), but I also find these SEs as reassuring -- not sure why... I guess because they are a sign that the bac is affecting me, whilst other SEs are more spread out following doses. The tingling twitching occurs pretty predictably 1/2 hour to 1 hour, lasting in severity for about 1 hour after after most recent dose, abating slowly over the next 1-3 hours after most recent dose, whilst the others are unpredictable and often surprising.

[beatle]

Baclofen and SEs... what is working for me

Phoenix, I can very much relate to your experience, as it is more or less the same as mine -- hallucinations that are tolerable because of past experience with them, frustration at not reaching my "switch", despite high dosage (esp. compared to my weight -- I'm at nearly 3.5mg/kg), severe SEs (that I have only tolerated because of others' experiences shared here), and overwhelming despair when reading about others reaching their "switch' at low dosages (don't get me wrong -- these experiences shared by others are also valuable and inspirational, and I highly appreciate those who have shared them).

Virgil, I hope this thread has helped others, and hopefully you will experience the same kind of alleviation (not elimination, mind you) from most SEs that spacing out the doses has for me. I have had, and I still have all the SEs you mention, just less at more spaced out doses.

I also appreciate all the responses here, which have greatly relived my anxiety about taking lower doses at closer, and more frequent intervals

[PhoenixRising]

Baclofen and SEs... what is working for me

Beatle, et. al.
I am going back down to 200 until the SE's subside somewhat. My "twitching" (I call them the "herky-jerkies") is much more than twitching. It's like spasticity (ironic that bac is for spasticity but in high dosages causes it!) My jerking is so bad I have to drive with both hands on the wheel to counterbalance the jerking arm. I get such spasms in my abs its like "HUK!" like you do right before someone was going to belt you in the gut. I am barely able to suppress it around other people. Alone, they have almost knocked me out of my chair. I had hallucinations last night that scared even me: a strange man hovering over my bed staring at me. I actually called out in fear. (For once I am glad hubby is away!) But those are the only Se's. LOL! Thankfully the hallucinations only last about 2 seconds and they are gone. Oh, and the sleepiness. I have fallen asleep in my chair at work. I've gone into the bathroom and laid my head on the toilet paper roll (what a visual that is, eh?)


I truly have more empathy for those poor souls who are mentally ill and see things all the time. How awful would THAT be?
I am at 3.43 mg/kg. I am afraid to go much higher than this.

[Virgil]

Baclofen and SEs... what is working for me

Hi Folks,

As of this morning, my new regime will be:

0900 30mg
1200 20mg
1500 30mg
1800 30mg
2100 20mg
2330 30mg

I'll report back on any developments.

V.