How quickly can I go down

[bottlestopper]

OK I have had it. I just cannot take this any more. I have had next to no sleep for 3 weeks, I have sleep apnea that has me jumping out of my skin and waking up about every 10 minutes, I have this yawning reflex going on all the time, my eustachian tube is opening and closing every few seconds especially when I am trying to sleep which makes sleep impossible, it even opens when I blink my eyes. Those are the main SE's but I have loads of others, tingling, restless leg syndrome, my throat feels really swollen, I am twitching all over, I cant breath properly. Depression, Just loads of SE's.

I have been trying to stay positive, trying to go up to get rid of SE's rather than down. I am now up to 160 a day and I just cant do this any more. I want to get out of my own body. I hate this feeling it is awful, there is no respite it is 24/7 I have even started to have suicidal thoughts (something I have never had as I know the pain this can cause, my father was an alcoholic and commited suicide when I was 12, it was the most painful experience and I promised myself that however bad things got I could never do that to my family) as I just need to get out of my body and find some respite from this.

I know I need to go down, wish I hadnt kept pushing up every 5 to 7 days. I have been on 160 for 3 days, how quickly can I go down. Dont really understand the tapering down thing. Just need to get off this merry go round. Maybe I can get some relief at lower doses. I have been AF for 3 weeks except for one glass of wine last night to celebrate my hubbies birthday, so maybe I can keep going at lower doses.

How quickly can I safely go down, do I need to go down at 20 per 5 days, because if I do, I think I will need to book myself in to some sort of rehab as I am already at the end of my tether, I have literally waited until I CAN NO LONGER carry on like this. How quickly can I get down to say 100 without making the side effects go worse.

I am also at the docs tomorrow. I really dont think I can tell him about the bac, do not think he will understand, but how can he treat my symptoms if I dont tell him? Although I instinctively know all of my symptoms are down to the bac, I have no doubt about that now.

Can anyone offer any advice please?

[Ne/Neva Eva]

How quickly can I go down

bottlestopper;1167834 wrote: I am already at the end of my tether, I have literally waited until I CAN NO LONGER carry on like this. How quickly can I get down to say 100 without making the side effects go worse.

I am also at the docs tomorrow. I really dont think I can tell him about the bac, do not think he will understand, but how can he treat my symptoms if I dont tell him? Although I instinctively know all of my symptoms are down to the bac, I have no doubt about that now.

Can anyone offer any advice please?

Hiya, bottlestopper.

Waiting until you can take no more is not really the best way to go about this, you know? I'm really sorry you're having such a horrible time.

One step at a time.
If I were in your position I would probably go down tomorrow to 140mg at least. Maybe even 120mg. (I thought that's what you were doing?)

It's important that you are taking it regularly and on schedule and continue to do this, okay?

I hate where you are for you. Hang in there. Hopefully the doc will be able to help!
xo
Ne

[RudyB]

How quickly can I go down

hi stopper. i get why you want to stop baclofen. i don't know a thing about going down, but ne's advice seems sound. i am sure you can go down much more quickly than you went up. good luck with this. i hope you get your sanity and your body back with godspeed. please keep us posted on how it's going.

xo rudy

[Guest]

How quickly can I go down

Bottlestopper

You describe exactly how I felt when I was on HDB, I however went up a little slower and stuck it out for quite a long time. Do what YOU feel is right. I found I got relief approximately 7 days after titrating down, so don't worry if it doesn't happen immediately.

The suicidal stuff I had and it was odd, I'd been depressed years ago and as a direct reaction to drinking binges, and yes had tried to take my own life in the past(always drunk though) - but it was a cry for help back then, on high dose baclofen I serious thought about not living and it was scary.

[bottlestopper]

How quickly can I go down

Hi UKblonde, I am not going to stop bac as I have had some great success with it like nothing before, I did try Nal which I see you are on, but that just didnt seem to work for me and I was always worried about a trip to casualty and the risk of morphine etc.

What I want to do is to taper down to a manageable level where the apnea and eustachian tube thingy stops and hope to be able to control my al intake, maybe go back up at some point but VERY slowly. I was pushing too hard it is obvious now.

Can you tell me how you tapered down from what level and how quickly. Also would love to know more about your SE's. PM me if you wish. Thanks

Ne - thanks, and thanks for the PM's I have PM'd you back.

Rudy - thanks for the kind words, means a lot.

[Guest]

How quickly can I go down

Bottlestopper

I carry a card with me at all times so they know what to do in A&E, plus I no longer take it every day anyway. As Katie has explained TSM takes a long time and results aren't often seen immediately.

I had been at 180-200mg for probably 4-6 weeks, total time on baclofen just over 3 months. I dropped to 120 in the first day because I was so desperate and couldn't stomach any more of it. I then took 100mg the next day and 80 the 3rd. On the 3rd day I had a wobbly patch, nothing serious but felt a bit 'wrong' as if my heart was about to flutter or something. So I took a 10mg tablet and was fine after that. Came down to zero by day 6 and started to feel and look much better from day 7. I now take 25mg before bed perhaps 4 nights a week because it's there and I've convinced myself it helps me sleep.

A list of my SEs included;

Extremely greasy hair and skin
Water retention
Morbid thoughts plus 'alien' fantasies
Lethargy and depression
Falling asleep all the time
Streaming eyes
Inability to concentrate

All of these were not present before, or during previous sober spells - of which I had 6 months last summer using willpower/12 steps etc. I have been diagnosed with Clinicall Depression in the past but that was an episode 12 years ago, since then the only depression I had was immediately during or after drinking bouts. On Baclofen I managed to stop drinking for almost 3 weeks, then had the occasional sporadic binge ( so most days I wasn't during this period with no let up on the SEs, well they just weren't as terrible as they could be drinking but still bad).

Once I reduced the baclofen to the occasional 25mg before sleep all the above disappeared - and my GP has confirmed there are no underlying conditions present.

[Murphyx]

How quickly can I go down

Ne/Neva Eva;1167848 wrote: go down tomorrow to 140mg at least. Maybe even 120mg. (I thought that's what you were doing?)

It's important that you are taking it regularly and on schedule and continue to do this, okay?

Yeah, Ne has it right. You can drop down to 120 immediately, without any problems and you'll probably find the SEs greatly diminish.

bottlestopper;1167924 wrote: go back up at some point but VERY slowly. I was pushing too hard it is obvious now.

That's the ticket.

[RudyB]

How quickly can I go down

hi again, stoppy!

i think your plan is a great one. you've made some excellent progress with baclofen, so it's good to stick with it. i am sure that you'll be just fine at a lower dose. and from the sounds of others' experience, you can probably go down quite quickly. just do it on a day/days when any wobbles will not have dire consequences, if possible. though, sounds like you've been dealing with some pretty major wobbles being up in your dose, so going down will probably be a mighty nice cake walk!

[Ne/Neva Eva]

How quickly can I go down

Okay, I want to do this for the official record for those that come behind or are lurking. You shared some stuff with my via PM that I think is important and relevant, and I would really appreciate it if you shared the less personal stuff here.

First off, if one is suicidal one must get help and immediately. There is nothing an internet forum, even one that is not anonymous, can help with concerning that threat to life. It's a deal breaker and absolutely nothing matters more than being able to continue the fight. Nothing.

Second off, it's important to plan changes in routine around bac, or bac around changes in routine. Changing both can really backfire.

Finally, pushing the limits when one is not in a place to test the limits is a surefire way to want to quit. We know for a fact that bac works to help with anxiety and craving. Giving up can be as counterproductive as not trying it at all. You know?

Now, back to you Stopper!

As I recall, 140mg was a pretty comfortable place for you. I know the impulse, when everything is haywire, is to make dramatic changes thinking that it might affect the outcome for the best. Especially when it's the middle of the night and you're sleep deprived and frantic and can't breath! (ugh! It's the perfect storm, right?) The truth is that subtle changes can be really productive and positive.
The anxiety is the deal breaker in this situation. Anxiety is exacerbated by lack of sleep, lack of moderate exercise, changes in routine, family visits (at least for me! :H) and fear. You can't begin to deal tackle these things altogether. They have to be broken down. Sleep is the primary culprit. The middle of the night is a scary time. I was ALWAYS able to sleep when the sun was up, even when I was suffering from terrible insomnia. For me, the middle of the night, when all is silent except my whirring mind and everything is dark--well, that's when the bogeyman visited and the beast had me convinced I should give up and accept my fate. Excuse the language, but eff that. I was pretty clear she wasn't going to win that battle, 'cause I was waging WAR and the bogeyman is, was and always will be a figment of my imagination. If I can beat the beast (and I did) than I can take on the bogeyman. just sayin

It's a good deal later there than it is here. I'm wondering whether the doctor (so glad you're seeing one!) was able to enlighten as to the breathing difficulty? And how you're feeling in the full light of day?

xxoo
(catch up with you in a couple of hours, okay?)

[Guitarista]

How quickly can I go down

Bottlestopper.

Go to hospital and check yourself in. Sounds like you need to stabilise your meds under supervision.

If you are suicidal, get yourself checked out now.

Stop the grog and stop the madness. Simple? No. Achievable? Yep.

Best wishes bro/sister

[Ne/Neva Eva]

How quickly can I go down

I've edited this message because it seemed counterproductive, but reserve the space to respond later!

[sapphire1]

How quickly can I go down

Bottlestopper,
I agree with Mr. G. on this one. Medical help is what you need and fast. Suicidal thoughts, no sleep for three weeks etc. etc. you are really playing Russian roulette with your life. Those S.E.'s such as twitching all over, restless legs, swollen throat etc. sound a bit like an autonomic nervous system problem. Whatever it turns out to be, it is not to be ignored. Get help fast. Strength to you.

[Ne/Neva Eva]

How quickly can I go down

Guitarista;1168014 wrote: Bottlestopper.

Go to hospital and check yourself in. Sounds like you need to stabilise your meds under supervision.

If you are suicidal, get yourself checked out now.

Stop the grog and stop the madness. Simple? No. Achievable? Yep.

Best wishes bro/sister
hmmmm. I tried the PM route and that was to no avail.

I don't understand how it's okay to jump in the middle of something without actually reading the information posted and issuing dire warnings and urgent mandates. It is very unlike Guitarista and several other senior members who are diving in with such things. It confuses me a great deal.

Bottlestopper is a woman, and has been AF for three weeks, both of which are apparent in her original post.
Subsequent posts make clear that she is feeling better.

I hope she'll clear up the circumstances in which she posted originally, because I think that's relevant. It's also vitally important for those who come behind, and for those lurking, to understand the entire situation. Baclofen does not make one suicidal. It does not cause apnea. It does not lead to three weeks without sleep. It simply doesn't.

Most importantly, I think that support from MWOers is a key to success in this battle. That entails reading a good bit, and establishing relationships, and posting regularly. It is also vitally important that those of us who are senior members participate in a supportive and non-judgemental way. I hope I'm not off base. I don't mean to be antagonistic.

For those reasons and others I don't think it's wise for me to continue to PM about things that could be misunderstood by other people if the issue is one that is started on a thread. I feel a responsibility to clarify misunderstandings about bac and any other treatment (ANY other) that offer people help and hope and a way out.

sapphire1;1168023 wrote: Bottlestopper,
I agree with Mr. G. on this one. Medical help is what you need and fast. Suicidal thoughts, no sleep for three weeks etc. etc. you are really playing Russian roulette with your life. Those S.E.'s such as twitching all over, restless legs, swollen throat etc. sound a bit like an autonomic nervous system problem. Whatever it turns out to be, it is not to be ignored. Get help fast. Strength to you.

This response confuses me also, but hopefully bottlestopper herself can clear up any misunderstanding.

Peace, people, truly.
xo
Ne

[bottlestopper]

How quickly can I go down

I have just been to the doctors, all my vital signs are fine, blood pressure normal, heart rate a bit up, but that is to be expected at the moment. The apnea stuff I will have to be tested for when I get back to the UK but he thinks i might have a sinus infection, so he has sent off for blood tests for that, and has given me some valerian to help with the sleep. Cant give anything stronger incase it is apnea.

OK the suicidal thoughts. Like Ne says I did disclose to her on a PM that I was having those thoughts, pretty stupid of me really, not suicidal thoughts as such like I am going to take my own life now. Just sort of I cant stand this feeling, I would do anything to get rid of it now. In cold daylight it is always better and although I am not sleeping hardly at all, I am still functioning in the day and managing to get a bit of work done. Its just those lonely hours at night when I cant sleep, i am so dog tired, but no respite at all, when it all seems to much. I am so sorry if I upset or scared anyone, it was terrible at the time and I just wanted to crawl out of my skin, but I wouldnt take my own life, like I said, my father did that when I was 12 and it devastated my family and I am sure it is a lasting contributing factor to my constant battle with anxiety. i simply could not do that to my family, I love them too much.

I would also like to put the record straight here - I was not in any way trying to push the boundaries, I was going up by Dr O and Dr L schedule 20mg every 5 to 7 days. I had been told by a few "old timers" that if I wasnt comfortable at a dose, that going up was often better than going down, so after 5 days I would go up. I was never trying to push the boundaries, apart from I did want to try and hit the switch before I went back to work and for one day I tried to go up from 140 to 180, bad move, went straight back down. Waited at 140 for a few days (still having the apnea and other stuff), so went up by 20, but it got worse. So now I am going to go back down, I am not drinking, have no cravings so why keep going up? I might as well go down a bit, get to a comfortable place and then stay there for a while, get some sleep and then go back up very, very slowly, if I need to. Just hope it doesnt take too long to get to that comfortable place.

Does this sound like a plan? Thank you for all of your kind wishes, I really dont think i need to go to ER, I am now going to try and get a couple of hours of sleep and I will see you all later. Thank you once again.

Ne - please PM me with the stuff that you edited off, I really do want to hear what you were going to say my friend, or maybe we could chat later.

[Guitarista]

How quickly can I go down

Ne,

Fair enough post.

My attitude here and in 3D life is to be supportive where i think i can be. I'm very happy to put my thoughts out there in life, and here on this forum, knowing full well other folk will make of my thoughts what they will, and may not agree with my boofheaded approach. But that's cool. I am just a bloke off the street, a gypsy, a simple man, who knows a few things, as well as knowing he knows less and less every day. My truth is simple, caring, and real. If anyone mentions suicide, i'm all over it as best i can.