Daily dosing record - beatle

[Cinders]

Daily dosing record - beatle

Psychosomatic? Are you kidding? The sleep paralysis was not psychosomatic. I had never had it before and have not had it since I have gone off Baclofen because my doctor warned me off of it due to other meds.

Neither was the lack of muscle control of the bladder. (That one was something I could do something about, though.)

Not sure of the men vs women and SEs debate and won't go there.

But, psychosomatic? Geez. Give me a break.

Cindi

[ignominious]

Daily dosing record - beatle

Why do you rule out pschosomatic causes Cindi. Headaches are real and not always due to a brain tumor, mostly they are stress related which is psychosomatic.

I'm also bangin' on about this over at

How did Dr Ameisen do it without severe side effects?

[Cinders]

Daily dosing record - beatle

Headaches are a good example, Ig. I have cluster headaches.

It took about a year for the doctors to finally figure out I have brain lesions on my frontal lobe causing them.

Prior to that, husband poohed poohed the headaches as stress induced, alcohol induced, hysteria, whatever.

Once the brain lesions SEs manifested themselves in Horner's Syndrome and they actually started looking for a root cause, they found the root cause. The brain lesions.

My headaches were not psychosomatic and neither were my SEs on Bac.

Sometimes a horse is just a horse.

Cindi

[ignominious]

Daily dosing record - beatle

You are absolutely right Cindi, sometimes, oftentimes things have a somatic cause. In my choice of example you are the exception that proves the rule. I'm sorry to hear of your problem and hope I haven't caused you unnecessary stress, my apologies.

However because your headaches were not psychosomatic it does not automatically follow that headaches are therefore not psychosomatic. I think that the somolence is largely a physical reaction to the drug but that a large portion of the other SEs that we feel are psychosomatic in origin.

[redhead77]

Daily dosing record - beatle

ignominious;1082118 wrote:


I've got 3 kids, 4 if you include my wife (hope she never reads this!) and they can be demanding. Luckily I don't have work related deadlines to meet or even have to go to work if I choose. My understanding is that you do a lot of work from home and are probably self employed. I would have been in big trouble when I was nearing my switch if I had been required to turn up at 9 am every day bright and breezy! I would suggest giving yourself as much space as possible concerning your work, clear appointments and important decisions for the next couple of weeks and concentrate on hitting your switch. Bac certainly did/does nothing to enhance my working capacity.

You are comparing apples to oranges Ig. I understand you are trying to reach out and create an environment where she understands that you too have parental responsibilities. The truth is your parenting experience is far different than hers. You live in a two parent household with what appears to be a traditional kind of marriage. You stated you're the breadwinner so that leads me to believe that your wife is performing a lot of the maintenance of the household and probably the brunt of the child rearing.

Beatle doesn't have this. She may be able to clear her work schedule a bit, if she even can, but she can't stop being the only parent present. She still has to pick up her kids from school, run them to activities, help with homework, ect. So when she has visual and auditory hallucinations, she may or may not, be required to drive her kids around. This isn't about sucking up the SE's, it's about safety. She doesn't have a husband or wife to do anything for her.

I can see in that case why her dose jumps around so much. She wants to go up, and then tries and has severe, debilitating sides, that make her question if she can safely stay at that dose and perform her most important role of single Mom.

I understand that you are trying to help, Ig. We all know that she wants to kick this thing's butt, but please give some thought,as to the unique circumstances she's coping with.

Beatle, knowing the dose you're on, I can't imagine trying to do it as a single parent (which you know I am). I'm not sure that I could be as brave. I hope I don't have to find out. If I do, I sure hope I can follow in your footsteps.

I tend to agree with Ig, in that if this isn't getting you there, you should go up in dose. I'm not sure if that's possible for you at the moment. One thing I do know. You are helping others with your thread. Please don't stop posting and keep us in the loop.

I found it hard to post so much when I was working and mothering. I'm now able to post a lot more, but still have lots of work here. My new system, is posting a little in the morning before they wake up, at naptime (now), and most is done in the evenings after bed. This will be only temporary as I will be going back to work soon too. :l

[beatle]

Daily dosing record - beatle

Hi all,

I have been unusually depressed (as in more depressed than usual) in the past few days. Not being able to get to/stay at 290, barely managing 280 for weeks,… SEs debilitating… rereading posts, obsessing.

Have begun numerous posts for this thread, but I get thrown by yet another OD-ish episode, and into a loop again.

(btw, took your advice, bleep, when I could, about walking around, not lying down… sometimes it works! Sometimes not. And either way, I can't live life that way. No way.)

And it’s not just those crazy OD-ish episodes. All the other SEs are in themselves practically insurmountable burdens – extreme daytime somnolence/nighttime insomnia, being the most odious. Oh yes, and inability to concentrate. It's impossible to get anything done... write a post, make dinner, transfer the clothes in the washing machine into the tumbler. Turn the tap water on. Turn the tap water off. Finish a sentence. Start a sentence. Start a new papargraph.

Next up come inarticularity (see?), complete loss of short-term memory, and inarticualrity. :H

I can handle hallucinations, electric shocks, jerky appendages, and balance disruptions, hands down. Par for the course. Water off a duck's back.

Now I am thinking that my sleep/eat/exercise schedule is probably a major culprit here. My sleeplessness has put me in Longshot's league, and my daily food intake probably reflects a new form of eating disorder (soon to be discovered and patented, no doubt) -- bopolarexiamenia. (Except that everything I eat (or don't eat) is healthy and nutritious.)

When one element -- sleep/eat/exercise -- goes down a little, it drags the others with it. (although, correct me if I’m wrong, haven’t many of you (men mostly) managed to hit the switch just fine thank you without straining a muscle or putting down a bag of crisps?... never mind, I’m sure that’s just in my imagination… or you keep that bit to yourselves, along with the SEs).

And ftr, I didn’t expect to have any SEs other than daytime somnolence when I started baclofen. I had only read OA’s book, and some glowing reviews here about how wonderful baclofen was. And when I did get cannonballed by the completely unexpected SEs, it was only by coming here and reading that others had experienced similar SEs that I managed to continue.

However, I do also know that the mond dpes crazy thinkg s when you are drunk psycho babble

...sorry, I had to yank my editing hand away from that last sentence... so you know where the real me is...:H

But seriously, I am not drunk and the "psychobabble" was meant to refer back to something Ig said some while ago, maybe on a different thread, and I wanted to agree that the mind does make its own SEs from baclofen and alcohol and combinations/withdrawals thereof. So I want to always keep that in mind... that it is not just a baclofen=SEs equation. Which is what I think Ig is mostly trying to say (or)

Anyway, I am now without children for a couple weeks, which means my concrete fears of injuring others might be less, and I can perhaps take more risks (although I still need to be able to function at a high level, so not sure where this is going…)

And to tell the truth, I can’t see why anyone should still be interested in my hopeless case (except for its freaky uniqueness, of course: “Person longest ever on baclofen who neither quit nor hit the switch!”).

must sleepppray:

[tiptronic_ct]

Daily dosing record - beatle

beatle;1085169 wrote: To tell the truth, I can?t see why anyone should still be interested in my hopeless case (except for its freaky uniqueness, of course: ?Person longest ever on baclofen who neither quit nor hit the switch!?).

must sleepppray:

Oh... but we are and remain interested, Beatle. We actually do care.

I want to see you beat this thing and get your freedom back. We both know what you're capable of.

:l:l:l

[bleep]

Daily dosing record - beatle

Agreed with Tip. There's going to be an MWO party like never before when you reach indifference. Sorry to hear you are struggling with 290mg's, and that 280mg's doesn't sound like it's much fun. Hopefully two weeks away from the pressures of home will allow you time and space to push through it.

Are you in a position where you are able to take daytime naps? I found them to be very helpful when I could squeeze one in here and there. Most of the time I didn't think I would fall asleep, and then I would wake up two hours later feeling so much better.

Also, a short walk or something during the day might help you to nod off a little easier. I do know what baclofen sleep deprivation is like though, and if you can't sleep, you just can't sleep, so I feel your pain there beatle.

I regard getting out of bed as exercise, so I strained plenty of muscles during my titration, thank you very much!

[ignominious]

Daily dosing record - beatle

Many factors influencing SEs - yes not just dosage.

Beatle. We do care as Tip and Bleep said. Some of us have found our way out of that alcoholic hell and want the same for you.

Little bit difficult to tell where you are from this last post except to say that you are despairing. Please don't. Carrying on the good fight. Please keep on

But please, please let us know where you are with your relationship to alcohol or to put it in simpler terms. How much are you drinking day by day. Are you getting drunk still. Are you enjoying drinking. How many days have you been AF if any. Without knowing this and and how much Bac you are taking I find it difficult to offer any advise except this stuff won't kill you and alcohol might.

[Ne/Neva Eva]

Daily dosing record - beatle

beatle, we are most certainly not revelling in the fact that you haven't found indifference yet. We most certainly will celebrate when you do, and we're all routing for you because we like you. :l

I, too, have experienced many of those SEs, though not to the extent that you are, maybe. Or for the length of time. But you have been at those doses for longer than I was, I think. When I was at about 280mg and on up I couldn't count out my pills. Literally couldn't count 16 pills in order to come up with 320mg. I had to enlist help, and had to get a dosing schedule from bleep.

But everytime I get really worried someone comes along with some sage advice to go up, or down, and that actually works, and everything turns out fine.

(sorry in advance for putting on my white hat and trying to problem solve. Very annoying, that. I know. But I'm gonna do it anyway. )

I know that for me the AL was a factor. Any way you can arrange a forced dry out?
Have you tried going down? (recently, I mean.) The lack of sleep is very worrisome and no getting around that at that high dose. Going down may give you the ability to get some sleep again. Which may in turn give the ability to go up when you have the ability to lay low for a bit.
If you had the flu, for example, there would be nothing you could do for several days. You would treat yourself gently. Eat lots of veggie-version-chicken-noodle-soup... Watch the intellectual version of soap operas.
Inertia, of course, was really awful for me, too. But is there some sort of middle ground?

What do you think you should/could do?
(I'd hold my breath waiting for a response, but I'll expire if you put bac on your editors cap. just sayin)
:ls and :h
Ne
(I have next week off, wanna come for a visit? )

[beatle]

Daily dosing record - beatle

Drinking the past 2 weeks has been moderate. 3-4 units/night now. Went AF for 4 days with miserable results (see post of 3-21) -- that's when the OD shit started to happen. Also felt the other SEs were worse. Although alcohol withdrawal could have been a factor. On the other hand, I had only been drinking 3-5 units/day, so not so likely a bad withdrawal, I think?

I don't want to go AF completely again because of previous experience, although I could try interspersing a day or two in here or there. But at this point, I can't see how 3 beers a night can be contributing to the outrageous SEs, and let me reiterate... these are not psychosomatic, i couldn't have made them up in my own wild imagination. And everyone keeps telling me they will abate after I've stayed at a certain level. This has happened before, but is not happening now.

And about the alcohol. Many people have said that it doesn't matter so much whether you are AF or not, including Dr. L. He conceded the drinking could effect the severity of the SEs, but he doesn't really believe in SEs anyhow.

The times I went AF (or a beer) SEs got worse. And it is really hard for me to see that my relatively low level of alcohol consumption is causing these severe SEs. But perhaps I'm wrong. Seems like a bit of an about-face for many here, but perhaps that's because people changed their minds?

As for my work schedule, there is no way I can slow it down. In fact I have to rev it up considerately to make up for all the time lost during the past few weeks, plus other responsibilities on top. I've missed deadlines and lost work, done shoddy work for too long. I need to take this time away from the kids to try to make up for it.

I also think the sleep thing is so important that I am going to try tapering down in the evening -- and this will probably mean an overall lower daily dose...250-260.

I think Ne might be on target with this... get some sleep so can I put on the gas with recharged batteries.

[coalfire]

Daily dosing record - beatle

Beatle I cant talk about the Baclofen part as I just used low doses but I wanted to pick up on the bit about alcohol withdrawal. I was a binge drinking alcoholic and frequently went days without drinking at all. Yet when I stopped completely I felt crap for about 2 weeks with headaches and nausea etc.I fully believe that 3 beers a night could cause someone to feel yucky if they were doing it consistently(and then you could argue maybe that that was feeding into Baclofen se's although as I said I am loathe to go there too much).
What I wanted to suggest Beatle was have you considered adding antabuse into the equation for a few weeks?It sounds like your body is crying out for a break from the booze. It would definitely re-energise you and lift the depression and make it easier for you to cope with life in general. I know it is not a long term solution as it is a chemical straightjacket but I fully believe it has its place for short term measures. Myself and Greg have used it to good effect.Then with your body and mind free from booze for a few weeks you could re-evaluate the Baclofen then?

[Doggygirl]

Daily dosing record - beatle

Aww Beatle. I'm so sorry it sounds like you are on the more difficult end of the spectrum with SE's. I :h you after our years together here and just want you to know I may not be a bac'er but I'm rooting HARD for you to reach the switch (SOON) just the same.

:l

DG

[Ne/Neva Eva]

Daily dosing record - beatle

yeah, beatle. I get it.

It's ironic, but the booze does take the edge off. Makes it tolerable...I definitely remember that (now!) and I think Birdy mentioned it, or someone around the same time. I don't think it was w/d in my case, either. Didn't have the right symptoms in the right combination...

I take heart that some found it on their way down. I don't know when I was able to make the decision, at what dose, because I was so discombobulated. It was blessed freedom though, and I made my way down rather quickly with little effect. (Until I went too far... 'nother discussion/time!) Point is, who knows?

I think you are on target with the sleep. That's what I saw in reading a lot of the stories (longshot for sure, but a couple others, too) of people where things ended up FUBAR. (excuse, please! I haven't used an expletive in what feels like years!)

Hang tight. We're here. Bac is always going to be there.
xo and hugs and love

[Ne/Neva Eva]

Daily dosing record - beatle

terryk just posted some really good info on the slow titration thread, ftr.