This Redhead's Baclofen Thread

[redhead77]

This Redhead's Baclofen Thread

LL, I am so happy to read how well you're doing! :l I am glad that you've found the right drugs to keep you sober. It makes all the difference in the world. Baclofen makes a big difference in my anxiety too. It's been so long that I've been taking it, sometimes I forget.

Cos, firstly, thanks for the insurance tip. I don't think I'll be going through my insurance for this. I've found a prescribing doctor in Chicago on the TSM board, but I'm not sure that I'll see him. I'm worried about it going on my insurance. If it does, I will likely have trouble getting life insurance or private medical insurance. I'm not sure of anything Naltrexone is used for except to avoid booze or drugs. You raise a good point about the nausea. I'm by no means an expert, I'd just read some stuff on the TSM board about it. I think you can probably have SEs and still not be a good responder. Thanks for the input, Cos.

[Bruunhilde]

This Redhead's Baclofen Thread

Hey Red, maybe you can share more details about your own regime via PM for pyroluria et al. I read 300mg of B6 and 50mg of P-5-P in the morning, and 80mg of zinc at night in your prior post.

I thought that was an insane amount of zinc? Also, please explain the P5p, I know I have a damn bottle somewhere, under five dozen bottles of other crap. AGGGG.

I'm ready to get a hair transplant but want to see if I can do this last bit before going there. Dont' want the transplant to fail due to pyroluria or whatever.

Talk soon, great to see you here.

[redhead77]

This Redhead's Baclofen Thread

Hi Bruun,

It's good to see you too. :l I can share whatever you wish via PM, but I can tell you a little here and now. Yes, 80mg of zinc is a large amount. It would be insane for a normal person. Pyrolurics (not sure if that's what we're called, but it sounds good now ) waste an incredible amount of zinc in their urine. A normal adult could get toxic on anything over 60mg. My 63 pound son is on 60mg of zinc a day. P-5-P is a bioavailable form of vitamin B6. It stands for pyridoxal 5 phosphate. B6 gets broken down into this, but not everyone is able to do it efficiently. It's another way to get to the source of the problem, to make sure we're getting enough (pyrolurics lose tons of B6 in their urine too.) Plus there's some thought that high levels of B6, if not broken down properly into P-5-P can cause some SEs, like numbness and tingling in the extremities. This might help to prevent it.

EDIT: I should say that there's been documentation of normal adults getting toxic on 60mg of zinc a day. Not more than 60mg. That's why it's important to know you have this problem before you try to supplement on your own.

[Bruunhilde]

This Redhead's Baclofen Thread

I have have have to find out when Pfitzer (?) is coming to town. I feel like crap. 23&Me rated my genotype as the least likely to respond to Nal. Bummer. At least I know not to blow more cash on more pills that won't help. I have been at a super high anxiety level for a week, and have broken my AF a few times including last night - my period warning sign is now mostly fierce desire for alcohol, vs the old warning signs of cramps (baclofen has minimized my pre-period cramps). RAGING desire like a wild animal in a cage. This anxiety isn't being helped by xanax, baclofen, gabapentin and in fact, I think all these pills are messing me up, not surprisingly. I went up on gabapentin to help with the anxiety and it helped at first but now I'm just wired. UGH.

Seems like for me, Space, and some of my other (offline) friends this is a hard couple of weeks. Lots of funerals and heart attacks and angst about generally everything. The Universal We is in pain.

Although Red, sounds like you and your family are doing very well, so sorry to put this junk on your thread. I know you won't mind ... :l

[spacebebe01]

This Redhead's Baclofen Thread

I have noticed that as well Bruun, I can go for months or more and never here of anything bad happening then all of a sudden it seems bad things are going on all over the place.

[taw]

This Redhead's Baclofen Thread

Yes, Red, Nal made my stomach upset, go figure, what doesn't! But the downside to that is I would try to drink thru it to feel better. And I did notice AL did not have the same effect, which in my sick and twisted brain, made me I think I could drink more since I was not as affected...just enjoy it...but do I really even enjoy it anymore? Sorry, been a bad morning, wow, you know how when chicks live together they all get on the same cycle, seems like we are all on the same on here...just looked at the calender...Yep, pmsing!! Sorry to hijack, Red...hope you are continuing to do well!

[windycitylady]

This Redhead's Baclofen Thread

I third that notion! Things are going to hell here too.
And I think I'm PMSing as well. At least that's the excuse I'm giving for being an irritable bitch and eating close to a pound of pretty much rare sirloin steak the other night. (Do you remember the scene in "Rosemary's Baby" where she's ravenously eating raw meat, then catches a glimpse of her reflection in the toaster and is disgusted? Something like that.) I'm like you, Red. I can be borderline suicidal and homicidal and ready to set the world on fire, then my period comes and I'm all of a sudden normal. I hope that's what's happening now, and I'm not just a blood thristy emotional wreck. Though I suppose that's entirely possible too.
Red, so glad you're doing ok and still exploring other options. My anxiety went crazy after dropping down on bac by a simillar amount. That's when I ended up in urgent care. I'm very excited to see how the nal works out for you. When I took it years ago, I remember feeling nauseous all the time. At the time, I attributed it to nal being hard on my liver, but maybe it's just a SE. It did work pretty well for me back then (nonTSM, just to reduce cravings).
The pyroluria stuff is very interesting. I'd love to get checked for that and some other things, hypoglycimia (sp?), adrenal exhaustion, etc. According to Joan Larson, 90% of alcoholics are hypoglycimic. I just know I'm spelling that wrong. Anyhow, until I can get tested, I'm just going to take my usual supps and try to eat better.
Please keep us updated on how the nal goes, Red!
Wishing you and your family the best!!

[redhead77]

This Redhead's Baclofen Thread

Bruunhilde;1290274 wrote: I have have have to find out when Pfitzer (?) is coming to town. I feel like crap. I have been at a super high anxiety level for a week, and have broken my AF a few times including last night - my period warning sign is now mostly fierce desire for alcohol, vs the old warning signs of cramps (baclofen has minimized my pre-period cramps). RAGING desire like a wild animal in a cage. This anxiety isn't being helped by xanax, baclofen, gabapentin and in fact, I think all these pills are messing me up, not surprisingly. I went up on gabapentin to help with the anxiety and it helped at first but now I'm just wired. UGH.


Bruun, I just looked up for you when Pfeiffer will be in California. They'll be in Northern California (Burlingame) on April 27th-28th. They'll be in Southern Cali (Garden Grove) on July 18th-20th. I hope that helps, the Southern Cali one is a ways off still. Nope, no worries about bringing worries here. My family is doing fairly well, and I'm doing okay. I had one of the worst days of my life yesterday. Everything that could go wrong felt like it did. Well, not everything, I didn't lose a family member or friend anything that severe. So, I shouldn't be complaining. I will tell you though, I really very stressed out most of the time. I just have a plate that's too full, and not enough help or resources. My nanny is here, god bless her soul, but she'll be leaving in June. What then, I have no idea. I'm getting myself extra stressed thinking about it. I know about that anxiety that nothing will touch when PMSing. I can chew up Xanax and it will just only take the edge off.

spacebebe01;1290486 wrote: I have noticed that as well Bruun, I can go for months or more and never here of anything bad happening then all of a sudden it seems bad things are going on all over the place.

Hi Bebe! Looks like you've had some bumps in the road lately. I haven't read the AB or Nal thread yet today, so I'm not sure of the latest. I know you've had a death in the family. I just want to tell you how wonderful I think you are, and I know you'll get past all of this. I think the reason you relapsed is because of the change in your meds. I know you've said as much too. I just don't understand why the doc was insistent on changing your meds when you were doing so well. Did I miss something with that?

taw;1290538 wrote: Yes, Red, Nal made my stomach upset, go figure, what doesn't! But the downside to that is I would try to drink thru it to feel better. And I did notice AL did not have the same effect, which in my sick and twisted brain, made me I think I could drink more since I was not as affected...just enjoy it...but do I really even enjoy it anymore? Sorry, been a bad morning, wow, you know how when chicks live together they all get on the same cycle, seems like we are all on the same on here...just looked at the calender...Yep, pmsing!! Sorry to hijack, Red...hope you are continuing to do well!

I'm doing okay, my friend. I will share with you that if you try to drink more than you should while on Nal, you may end up very sick. Meaning, if you don't really enjoy it, and your body says to stop at a drink or two, and you keep on going, there's a good chance you will feel like utter shit. Or if you take your pill after you started drinking already, once the pill kicks in (which will likely mean you may have already drank more than a couple, depends) you could end up very, very sick. I ended up throwing up when I did that. I have done that once. Just thought I'd share (as embarrassing as it is to share it). And when you write about yourself, it's never a hijack! I love to hear what's going on. Even when it's not all roses. :l


windycitylady;1290807 wrote: I third that notion! Things are going to hell here too.
And I think I'm PMSing as well. At least that's the excuse I'm giving for being an irritable bitch and eating close to a pound of pretty much rare sirloin steak the other night. (Do you remember the scene in "Rosemary's Baby" where she's ravenously eating raw meat, then catches a glimpse of her reflection in the toaster and is disgusted? Something like that.) I'm like you, Red. I can be borderline suicidal and homicidal and ready to set the world on fire, then my period comes and I'm all of a sudden normal. I hope that's what's happening now, and I'm not just a blood thristy emotional wreck. Though I suppose that's entirely possible too.
Red, so glad you're doing ok and still exploring other options. My anxiety went crazy after dropping down on bac by a simillar amount. That's when I ended up in urgent care. I'm very excited to see how the nal works out for you. When I took it years ago, I remember feeling nauseous all the time. At the time, I attributed it to nal being hard on my liver, but maybe it's just a SE. It did work pretty well for me back then (nonTSM, just to reduce cravings).
The pyroluria stuff is very interesting. I'd love to get checked for that and some other things, hypoglycimia (sp?), adrenal exhaustion, etc. According to Joan Larson, 90% of alcoholics are hypoglycimic. I just know I'm spelling that wrong. Anyhow, until I can get tested, I'm just going to take my usual supps and try to eat better.
Please keep us updated on how the nal goes, Red!
Wishing you and your family the best!!
Windy! You make me smile. Yes, I remember that scene in Rosemary's Baby. I can see you now with meat juices running down your chin, looking all wild and carniverous. You aren't kidding about borderline suicidal. I really, really get messed up before my period. I never used to be able to reason to myself that's what was happening. Lately, I have been though. I'm gearing up for a psych appt next week. I'm going back on Wellbutrin. It's not that I'm depressed exactly (well, maybe a little, but I think it has to do with my tapering bac), but I need some help with my ADD and I plan to quit smoking soon. It works well for me for both of those, and if I remember correctly, it helped my really scary thoughts when I was PMSing. I guess I'll know again soon. I hadn't really wanted to take it when I was on such high doses of bac, but now that I'm coming down, I'm ready. That drug always worked very well for me. How long did your anxiety last when you were tapering down? Yeah, nausea with Nal seems to be common. Mine didn't end up lasting very long, thank goodness. Aha! Hypoglycemia. Yes, Larson says 90% and some others say the same. Nobody knows how many people are hypoglycemic pre drinking versus post, though. Drinking excessively can cause hypoglycemia and having hypoglycemia can make people want to drink. I was diagnosed with reactive hypoglycemia as a child. I still have it, I see an endocrinologist. Mine is unfortunately like prediabetes. My pancreas is over active. I have to avoid sugar and eat frequently. One of my biggest drinking triggers was not eating. My blood sugar would crash and I thought I needed a drink (low blood sugar causes crazy anxiety too). Afterall, it's quick liquid sugar and an anxiolytic. Adrenal fatigue goes hand in hand with that too. And food allergies. I used to have crazy dilated pupils (my son did too), but not anymore on a gluten-free hypoglycemic diet. Weird. Anyway, hang tight and don't go blowing up anyone or anything! This too shall pass. :h


I've got more to tell you folks, but it's awfully late here. I think I'll come back tomorrow.

Goodnight!

~Redhead

[spacebebe01]

This Redhead's Baclofen Thread

Hi I only just got up and read the few posts on this page so im sorry if ive missed anything but I just have to jump in here when you have been takling about eating. I have had such a lonf time problems with eating, I mean my usual diet is drink tea and smoke all day and eat nothing until evening when I have to cook for my sons then eat with them. But then I will get hungry during the day but not for food, for chocolate and stuff and go on binges. A while ago I decided I wanted to loose weight and decided to go on Atkins and was eating pretty much properly what was included and I felt so well, I think Atkins was too rescrictive but the point I am making is that I know my diet, my mental health are all so closely related and need to get this sorted out, there is also the thing that my moods seem to fluctuate so much throughout the month even though I started going through the monopause 12 years ago, that is why I have started hrt to see if that helps any, that brings me to my third point, I worry about all the meds I take then try to cut down, I had been pretty ok taking bac 10mgx3 day, but for no other reason than this worry, ie I was feeling ok I decided to cut it down so went to 2 a day then maybe 1 one day then 2 the next , I dont think this was a good idea especially not when the doc had just changed my pills. oh by the way I think that was just a new doc thing and when I saw her I was in such a state of anxiety I just wanted to get out of the room, but as I say this may well have been down to the reducing the bac

anyway Im just going to go and have a read round now, hope everyone has a good day

[redhead77]

This Redhead's Baclofen Thread

I think with many of us, Bebe, that not eating properly plays a big role. Especially skipping meals and too many refined carbs. I think alkies crave refined carbs, but it causes a viscious cycle. I remember that you were doing particularily well when you changed your diet. I also agree with you regarding Atkins. I've done it a few times, and it's very restrictive. I think that totally cutting out carbs in very early sobriety can be a problem for some too. I can't help but notice a little pattern with some people in which they quit drinking and stop eating carbs at the same time, and then go on to develop profound depression and some other things. Not that you stopped eating carbs in very early sobriety. You had a number of months under your belt, but I just have been thinking about that a lot for others. Were you doing the induction phase of Atkins? I think the maintenance phase is less restrictive and I think a fairly healthy way to eat in general. I need to moderate my carbs to feel good. You might have also had a positive response because you cut out grains. Not to say you're gluten intolerant too, but Joan Larson does mention that certain subgroups of alcoholics are often allergic to wheat. Just a thought and maybe something to start to be aware of. I learned about myself by going off it many times and then reintroducing it. I would see my symptoms return. The longer I've been off gluten, the more noticeable my symptoms are when I cheat (or at this point, I've gotten so sensitive I notice if I accidentally consume something with wheat flour). Yeah, it sounds likely that cutting down on your bac played a big role too. It sounds like you need it right now. I'm guilty of sometimes making too many changes, or changes too quickly too. It wreaks havoc with me when I do.

I wanted to tell you all something. Sometimes I feel guilty that I haven't said the right things to people, or maybe I've ignored people more than others on my thread. This was the worst when I was on very HDB (for me). I do have that feeling a little now, though. Bruun, I didn't tell you that I think you're wonderful too. Or you either Taw. And all of your posts on my thread make me smile. Thanks for being here.

To prove my point, I found this article just for you, Bruun. It's on diffuse hair loss in women. I'm sure you're familiar with most of this, but a couple of things stood out to me. First the zinc and iron deficiency and the connection to hair loss, and also the thought of having a scalp biopsy. Have you ever had one?

Diffuse hair loss: Its triggers and management

Anyway, off to a doc appt. I'll explain about that later. It's nothing serious, but it looks like I will need some noninvasive surgery.

Talk to ya's later!:l

[spacebebe01]

This Redhead's Baclofen Thread

Oooo Red how lovely of you to say such nice things to me and everyone else, I feel guilty like that too sometimes, especially when I have had a lot of support over something and I cant remember who said what to thank them so I will try and then realise after that Ive left someone out.

I did decide to make changes slowley last time I stopped drinking and I think thats why I had the success for as long as I did but now I realised Id stopped doing that, so I just hope I can start again now and learn from it. While I was drunk tho I did do something very bad and I hope and pray that I wont get caught out because I could loose everything from it I am really panicked about it now. Part of me is thinking why sit here waiting like a sober sitting duck, at least if I was drunk I wouldnt know about it, to tell you the truth I can even tell you why Im not drinking right this minute to block out the worry, thank god Ive got drugs (meds) sorry to put that on you here

Are you doing too much then Red or is it your nanny leaving thats tipping you over, Im sure you will be able to find someone as lovely but it wont be the same. Upheaval and change can be difficult even when you dont realise it.

:l

[redhead77]

This Redhead's Baclofen Thread

Hey Bebe,

I'm not sure what you did, but I'm sorry you're really freaked out. I don't think drinking will solve it. Then you have to worry about maybe something else happening when you're drunk. Hopefully a little time will put it behind you, and you won't land in any trouble. :l I wouldn't try to stop taking my pills right now, Bebe. I think if it's that or drinking, you should choose the pills. I know that might sound weird, but really? What's a couple of gabapentins if the alternative gets you into such trouble that you're worried like this? It's just plain not worth it, and it makes me sad to see you in such distress.

I'm not really tipped over. But I am absolutely overwhelmed. There's so much going on here, and I have a very hard time getting on top of everything. Even the most normal woman without alcoholism or ADD would have a hard time. The food situation is a must, and I'm very proud of what I accomplish, but it's exhausting to make everything from scratch, and to live with alternative diets.

I am a little worried that when my nanny leaves, I might get completely tipped over. I tried another live-in nanny once. Her background check was clean and her references checked out. She was a Pastor's daughter for goodness sake (:H I know). I got a call at work from the police department, they were at my home with my kids and the nanny. Apparently, she left my little girl in her car while she went tanning. My daughter wasn't even 2 at the time. Yup, she left her in her car in August with the windows up (while she went to get a tan). She did it two days in a row! The chiropractic business next door called the cops on the second day she did it, and apologized to me that they never called the cops the first time. I am really worried about finding a good person now.

There is background with my nanny. My nanny's best friend is staying with us this week. Her best friend is the daughter of one of my best childhood friends. This girl is even named after me (which still trips me out to this day). I am still very close to my childhood friend. I'm not so sure I can find someone as lovely, as easily, as I did this time. My nanny was recommended by her.

Anyway, I'm sure I'll figure something out; I always do. It just seems like a daunting task right now. I'm having a difficult time facing it.

I think that's enough for tonight. I won't even go into my need for laser surgery. :H

To be continued...

[cumberbund]

This Redhead's Baclofen Thread

hi red,

i've been reading your various posts but can't find out if you are still on baclofen, and if you "switched off" at a certain dose? i am trying to figure out if baclofen will help me.

thanks,
cb

[spacebebe01]

This Redhead's Baclofen Thread

Red thank you so much for tating what should have been obvious to me but for whatever reaon wasnt, whats a couple of gabapentins and bacs compaired to drinking like I did and all that caused! :H I had to smile when I saw you wrote that but I didnt think it.

Your nanny situation must be very worrying, things work out in the end they always do but I can only imagine the stress it mut be causing you. Doesnt your present nanny know of anyone? or have I just asked a very stupid question that you have probably already asked her, but if she will help you try to find someone new then at least you would have her checking them out and not just yourself. Sometimes other people can see what we cant and since you can trust her judgement that could be a way to go. In fact when her friend comes will be a good opportunity to talk it over with them both and see what they advise.

Do you have time off this weekend for easter? spending time with the nanny, her friend and your kids will do you the world of good:h

best wishes x:l

[redhead77]

This Redhead's Baclofen Thread

cumberbund;1291875 wrote: hi red,

i've been reading your various posts but can't find out if you are still on baclofen, and if you "switched off" at a certain dose? i am trying to figure out if baclofen will help me.

thanks,
cb
Hi Cumberbund!

:welcome: The answer to your question isn't an easy one. Well, this question is easy to answer. I am still on baclofen. I'm on 140mg a day at this point. This would still be considered HDB. I did feel switched off at a certain dose. My dose was 240mg. But this would be the second time. The first time it was 200mg. There's a lot of hx with me and bac, so it's difficult to explain without writing a novel. After I was on 240 for a period, I titrated down to just under 200. I noticed I wanted to drink more and I did. I then went back up some (quickly, didn't wait around there), and found a pretty comfortable place at about 210mg. The problem I had at that dose was persistent SEs that never went away (so I came down again and the same thing). I've decided to try Naltrexone along with the HDB. I seem to respond well to it. All that said, I don't drink nearly what I used to. I don't feel magically indifferent like some of the the others here, but I'm not the same person I was when I started, either. My craving for alcohol on 140mg is far less than what it was when I started bac. Regarding whether bac will help you, you won't know unless you give it a try. There's people here who take all different doses. Some have found the switch, and some haven't. Many feel that their drinking has improved whether they've found the switch or not. I say go for it. And you might as well go for the switch. If it doesn't work out, you'll likely not have lost anything. If it does, you'll have found...your cure.




spacebebe01;1291985 wrote: Your nanny situation must be very worrying, things work out in the end they always do but I can only imagine the stress it mut be causing you. Doesnt your present nanny know of anyone? or have I just asked a very stupid question that you have probably already asked her, but if she will help you try to find someone new then at least you would have her checking them out and not just yourself. Sometimes other people can see what we cant and since you can trust her judgement that could be a way to go. In fact when her friend comes will be a good opportunity to talk it over with them both and see what they advise.

Do you have time off this weekend for easter? spending time with the nanny, her friend and your kids will do you the world of good

best wishes x

Bebe,

I'm glad you're okay that I expressed my opinion. I had doubts about it, and then wondered if what I wrote would cause more harm than good. I'm always second guessing what I write on here, you know. You're right about things working out. They always do, and if only I could stop worrying, obsessing about everything, it would help me a hell of a lot. Some of that could be that I've come down rather quickly in my bac dose, too. I was thinking I've come down 70mg in a couple of weeks. That's a little too quick. I can tell that I've thrown myself off as far as mood goes. Yup, I'll be off on Easter Sunday. Somebody has to be the Easter Bunny, Bebe.

I'm feeling better about my situation tonight. I think I was having a big pity party for myself the last couple of days. It could be a ton worse, I guess. I do have a dilemma, though. I need to have laser surgery. This requires me to receive some anesthetic, in this case propofol. When I saw the doc about my problem (which is a varicose vein running down my right calf, this thing popped up all of a sudden), I never thought it would turn into surgery. He decided to ultrasound my legs and it turns out, I have bad valves from my upper thigh all the way down to my knee in my saphenous veins. I guess from genetics (both my grandmothers have bad varicose veins), multiple pregnancies, and working on my feet, I developed this. I have the problem even worse on the left, but no varicose vein yet. Ugh. Today, I had to go get sclerotherapy on the vein I have now, which will fix it. And the good news is, I won't get anymore once he fixes these veins with the laser. The bad news is propofol is pretty majorly contraindicated with bac. It can cause seizures. If only I had just said I was on it in the first place (there might be an alternative like Versed or something)...now I'm not sure what to do. If I get propofol, I would be most comfortable having titrated off. Anyway, I can push this off for enough time to allow me to titrate off, but I hadn't planned on doing that right now. I feel that my mood is fragile enough already, and thought I'd stay on 140 for a while.

WTF? It sure is fun to be getting older. :H It's especially fun when you have to figure out how to protect your health when you can't tell people about the meds you're taking (I mean, if you so choose. Like I do, or did in this case. Which was a mistake. ).

EDIT: Let me edit to add that I'm off to sleep in my medical compression stockings. Yeah, I have to wear compression stockings for the next couple of days, 24 hours a day except to shower because of the sclero. They do try to make them look nice by adding some lace at the tops, though. :H Goodnight!