Here goes - Bottlestopper's Baclofen journal

[bottlestopper]

Here goes - Bottlestopper's Baclofen journal

There is just no respite - I am desparate

I just dont know what to do. I cant even take a nap in the day now, it is there with me all of the time, every 5 minutes, feels like I am drowning it is awful. I just cannot get any rest at all. I have had about 8 hourse sleep in the last week in totoal. I am getting desparate. I cant think, cant stop crying, panicking.

If I could get off this rollercoaster now I would, but I know I have to titrate down and that could take a couple off weeks, therefore I am keeping going I am dedicated to beat this, but boy is it bloody hard work.

thinking about it I think i have had apnea on and off all of my life, I suffered from swollen adanoids as a child, always snored, sometimes I do wake up in the nigh iwth that drowning feeling, and that i have just stepped off a curb thing. However, nothing like this. I just think the bac has exacerbated it all. I cant see it just stopping and being dose dependant if it has always been there underlying. Will it ever go awa go away now? Has th bac triggered some CSN apnea that will be chronic and long lasting. i have read about people with spasticity having apnea due to bac and they are pretty much on the same dose forever, so how will going up or down relieve this?

I swear I cant live like this, it is awful. I can understand wy sleep deprivtion is a form of torture. I would give all of my secrets and my best mates secrets away for just a few hours sleep right now. In fact, there isnt much I wouldnt do for just a few hours eleep.

God I am so sorry for always seeming so negative - I am normally a glass is half full (of wine) type of girl, but at the moment it is bloody empty (pun intended).

Hellp!!!

[Bruunhilde]

Here goes - Bottlestopper's Baclofen journal

Bottle,

I'm so sorry for your struggles, I know that feeling, I had it at 60mg or so and it did go away. Ne's right about lying on your side, it gave me some respite but I agree, there's nothing like sleep deprivation (I had two months of it another time for another reason and no one can understand how crazy you can feel and how desperate). They use it as torture for prisoners and it works. Can you go up a dose? Some around here say going up or down can help intolerable symptoms, can you try one or the other?

Rooting for you, Bottle, I'm sorry for your struggles.

Ne, sounds like you're in the right field, getting all sciency on us all the time. Nursing will be a walk in the park for you.

[bleep]

Here goes - Bottlestopper's Baclofen journal

Whatever you decide to do Stopper, you are definitely being brave about it.

Perhaps trying to get it done before the holiday ends isn't the best approach, and a more gradual titration would be better? I'm really sorry you are having such a rough time.

[bottlestopper]

Here goes - Bottlestopper's Baclofen journal

OMG - I slept!!!!!

Yay, yay, yay!!! I slept, I feel like I have won the bloody lottery.

I went down to 140 on Tuesday and Tuesday night was the worst ever. I wont go into details I have moaned enough. However, yesterday my anxiety was through the roof, I coiuldnt function was having terrible panic attacks. Awful, the worst anxiety I have had in years.

So I went to the chemist, and lied and told them that I was on Xanax in the UK and had left my tabs at home. Well I managed to get some xanax. Phew!!!


I took them and the anxiety immediately reduced, I felt so much better. I got some sleep early last night, but woke up abruptly and I knew the xanax was making me so out of it that I was really struggling to breath when i got the apnea (it is contraindicated against sleep apnea because of this). However, it broke the cycle I managed to on and off sleep until about 8am, Wow do I feel better today.

I would like to say a big thank you to no/nevaeva. She has been my guardian angel through this, she urged me not to give up and said that it would pass. I have to say I didnt believe her at the time. She WAS SO RIGHT. She talked me down in the middle of the night, heard my fears, even cried with me. Wow what a special lady. Now I am not running before I can walk, and I know I need a few more nights to say it has gone completely, but I have so much hope.

The thing is through all of this terrible time, I never once thought to have a drink. Maybe I have reached my switch, but I dont think so as last night we had guests and they were all having wine and I would have loved a glass. Not a craving, but a sort of longing for an old friend thing.

I am now 16 days AF - yay!!

I am going to stick around at 140 for a few days, get some sleep, get some work done. And then go up more slowly. i think I am in this for the long haul. i will take the xanax for a couple of days too, just to get the anxiety calmed down.

Thanks once again, for listening to me and for any of you out there suffering from these terrible SE's - DO NOT GIVE UP HOPE!!

Bottlestopper

[Ne/Neva Eva]

Here goes - Bottlestopper's Baclofen journal

Phew.
Bruun is right about the sleep deprivation. Manage that, and one can manage the rest, is my guess.

Don't forget the other tools! Lots of 'em...
xo
(Don't know about the walk in the park or the science-y stuff, Bruun, but I sure do love it.)

[Sammi33]

Here goes - Bottlestopper's Baclofen journal

Sorry u are going through a tough time xx

I posted before that i have experienced the same apnea before, though not fom bac, it was from other meds.

I just wanted to mention that one of the things that made it much worse for me was coffee...when i was in the worst of it my doc suggested i give it up ( not easy i was counting CF days), and it actually did help a bit. I just thought i would mention it in case u are drinking caffeine to try and get through your sleep deprived days. Might be useless information, but just wanted to share in case.
:l

[bottlestopper]

Here goes - Bottlestopper's Baclofen journal

Bed time - a little nervous, but here's hoping!! Wish me luck x

[bottlestopper]

Here goes - Bottlestopper's Baclofen journal

Night was better, not brilliant but better. I have the anxiety around going to sleeep which is now stopping me going to sleep which is weird, took some of the xzanax and that definitely helps.

The brain fog is lifting and I am actually gettiing something done.

I am still AF and that is a mircacle. I am so happy I stuck with it, but at times it was hard.

Thanks everyone

[bleep]

Here goes - Bottlestopper's Baclofen journal

That's great to hear Stopper! I think as the apnoea SE fades, your fear of sleep will fade as well, and that may make things easier.

I know it can be hard to believe when you are in the middle of it all, but it always gets better!

Well done for hanging in there, I know it's not easy.

[Sammi33]

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Hi Bottlestopper,

Just wondering how u are going? Any better on the sleep? Hope u have managed to get on top of it a bit and things are going ok with your work prep.

Thinking of u xx

[bottlestopper]

Here goes - Bottlestopper's Baclofen journal

Thanks sammi been away for a couple of days to see my grandkids. Hadno Internet. Things still not good at all. Apnea still terrible not getting any sleep been going on now for nearly 3 weeks and it doesn't seem to be dose dependant. Xanax doesn't seem to help in fact it seems to make it worse. Anxiety is at an all time high. When I am falling asleep (or not)y eustschian tube is continually opening and closing every few seconds it is awful and absolutely impossible to sleep. If I do get any sleep it is always after 6am until 10am. If j could turn this around to be 3 or 4 hours from midnight then perhaps I could get get up and start my day earlier. Also my head feels really heavy like I can't hold it up

I am beginning to think that bac is just not for me. I have done 3 weeks af except one small glass if wine last night to celebrate hubbies birthday which I know is a huge achievement but if just doesn't feel worth all this pain at the moment I just feel I have completely lost my life. I have an appt with doc tomorrow but I don't really know what to tell him I can't tell him about the bac and because I think most of the symptoms are bac related I don't know how he can help me. Help me please!

[Getting There]

Here goes - Bottlestopper's Baclofen journal

Hi Stopper: So sorry to hear that you are still having issues. I am having some troublesome SE's as well but nothing compared to yours. I think you are brave and strong to have put up with them for this long. I am no expert so have no advice but am hoping that you find the relief that you need.

[Sammi33]

Here goes - Bottlestopper's Baclofen journal

Stopper i am so sorry to hear about that, when you were away a few days i was hoping you were catching up on much needed sleep.

It seems in your situation with work and how long you have stuck with it that it would be a shame to stop, especially when relief may be just around the corner, but the hell you're going through would make anyone question whether its worth it. Just a thought, can you hire a CPAP machine to help with the apnea until it passes? Maybe your doctor might know when you see him. It will only help if the apnea is obstructive not central i think but it could be worth a shot.

On the other hand, and i don't want to be "anti-bac" because i have no experience at high doses and at the moment it's working wonders for me, but have you tried other meds? The fact that you have been AF for 3 can only help and maybe something like campral would be a gentler option for you at the moment, because i think it works best if you are not drinking. Also i am not sure if you have tried naltrexone but i have found that really helpful as well.

From what i can gather from reading other posts i dont think other meds will lead to the same indifference that bac will in the long term, and i also think from personal experience they require more of our own willpower and dedication to get the best results, but you are obviously very strong, and maybe the relief from other meds will be ok in the short term, and you can have another go at bac in the future maybe with slower titration. When you know what you are in for you can prepare yourself mentally i guess and decide when the time is right.

I really don't want to influence your decision about continuing or stopping bac because there are others here a lot more experienced and in a better position to guide you, but i really feel for what you are going through and just wanted to offer some suggestions for whatever you decide.

Sending you strength,

Sammi x

[bottlestopper]

Here goes - Bottlestopper's Baclofen journal

So an update. I am on 120 now and have been for 2 days, the SE's are much more manageable. The apnea is still there but not as bad, I can get about 1 hour sleep at a time now instead of 10 minutes which is much better. Anxiety is still through the roof, but I think that is still lack of sleep and worry about work and all I have to do in less than a week.

Doc was next to useless. Gave me an antibiotic for a chest infection that I am allergic to, so that made it worse as I ended up with acid reflux and terrible stomach cramps etc on top of everything else. Am I a trainwreck or what?

Gave me some valerian to help me sleep, said I will need to go to docs in England to get some trials done to see about the apnea, so there doesnt seem to be a quick fix for that one, as waiting lists in the UK can be a very long time.

However, the somnolence in the day is much better and the depression has lifted. All good here. However, I have started drinking again. This is the strange thing, I think I might have hit the switch or was nearly there. I had one glass of wine with dinner on hubbies birthday Tuesday, had no desire to have more, took me over an hour to drink it. Sort of enjoyed the taste, but didnt get a buzz from it.

The last three nights I have had one or two glasses with dinner, no more at all. Unheard of for me. Again easy to stop, although tonight I could have had another one, but didnt. So I dont think I have hit the switch as such, but certainly drinking within sensible limits and a hell of a lot less than I used to. I can now stop, I WILL REPEAT THAT. I HAVE A STOP BUTTON. I never have had a stop button before in my life. NOW THAT IS A RESULT.

I am going to stay at 120 for a while, go the cough and post nasal drip back, but maybe the antibiotics will clear that. If they dont I might go down to 100 for a few days. See how I am when I go home (much more temptation there, a girlie night on Saturday night, dinner with friends etc), if I find myself driinking more or craving I will continue to go back up, but VERY slowly. Maybe 10 a week. I am obviously very sensitive to bac and its side effects.

Therefore watch this space. I have copied this from my other thread so I have a record of my journey here, so sorry for those of you who may have to read this twice.

Thanks for everyone for your help and encouragement, and to those of you whose SE might mean you give up, please dont just play with your doses a bit, and keep on plugging, it really does work this stuff. It is a miracle.

[RudyB]

Here goes - Bottlestopper's Baclofen journal

hey stoppie!

this is good news! and you're kinda cute in your 'i've started drinking again'. yes, well, i suppose you have. but i'd say you've won a huge victory in creating a stop button for yourself. that has been good enough for me!

i, too, go back to teaching in less than a week. EEK! but chin up, gals. we can do this! and you'll be so much better off, indeed, not being hungover and full of all that horrible emotion and depletion that goes with being an over-drinker.

good for you, stoppage! yours has been quite a journey, but it seems to have led you to a very fine place.

abrazos,
rudy b