Wheeee! or Yikes! Progress thread for Tracy

[Murphyx]

Wheeee! or Yikes! Progress thread for Tracy

These "wakefulness promoting agents" sound cool. What happens at the end of the day? How long do they take to wear off so you can sleep?

[TracyA]

Wheeee! or Yikes! Progress thread for Tracy

Murphyx;1080498 wrote: These "wakefulness promoting agents" sound cool. What happens at the end of the day? How long do they take to wear off so you can sleep?

I don't know yet, Murph. Since I wasn't drinking beer, I was really slamming iced tea yesterday (my real drink of choice). I didn't think to switch to water until after 6 pm, so I had a very lousy night's sleep. I'll let you know. My understanding it that it does not normally keep you awake if it's time to sleep.

[Bruunhilde]

Wheeee! or Yikes! Progress thread for Tracy

TracyA;1080442 wrote:
* Elderly people.
* Heart disease.
* High blood pressure (hypertension) (blood pressure and heart rate should be monitored).
* Kidney failure.
* Liver failure.
* Severe anxiety.
* People with a history of psychosis, depression or mania.
* People with a history of drug, alcohol or substance abuse.

It is not risk-free. It can be habit forming. I don't know if it would be a good choice for you or not. Could you ask your doc?

I quacked out loud :H when I read the list of "use with caution" ppl. I think I'm elderly (middle aged is elderly in Southern California, let me just say), could have liver issues (high enzymes), history of substance and Al abuse, and of course, my infamous HBP. However, I am improving all of these as I remain AF, so hopefully I can try this drug someday. I will buy a very small dose....

I can't STAND the tedium of these tasks. Sometimes music helps me get into a meditative mood (almost a stupor) when I do chores, but having to make decisions along the way about what to do with THIS box, for example, or God forbid I open the box and get stuck in the box, this type of distraction or return to reality from stupo shakes me loose and the tedium returns with the vengeance of AL cravings.

Thanks T!

[TracyA]

Wheeee! or Yikes! Progress thread for Tracy

Saturday night was not fun at our home. After having had no more than a couple hours sleep Friday night, but a fruitful day anyway, I was trying to get to sleep (beat the apnea down). I started to have a bad feeling in my chest, a familiar feeling. Most of the time when it happens, I?m headed into supra-ventricular tachycardia. Previously, I had been able to stop it with Vagal manuvers, but the last time I wound up in ER. It was expensive, and they had to stop my heart to get the tach to stop, and I did not want a repeat visit to the ER. I?m meticulous about taking the beta-blocker that prevents the tach ? so it shouldn?t have been happening Saturday night anyway!

I scrambled out of bed and bee-lined it to the Pepto-Bismol, because there was a slim chance that it was a particularly nasty episode of heartburn. I was dizzy. The Pepto was unopened and I was sitting on the floor trying to get that damn plastic, tamper-proof, wrap off it. My husband was very concerned and VERY confused, saying ?What?s wrong. Tell me what is wrong!? I was trying, but words weren?t coming to me, and he was acting agitated. I said, ?You aren?t helping me!? So he grabbed the bottle out of my hand, got it open and I took a couple swigs from it. I then went out on the front porch (about 2:00 a.m.) and just sat there, trying to breathe normally, sweating and generally feeling like a little brown bug on the windshield of meds. My husband, still looking VERY confused and concerned, brought me a blanket, which I kicked off because I was sweating, despite freezing temperatures. My heartbeat was a little rapid but came no where near the rate of 200 wildly-slamming beats per minute of full-blown tach. I finally got feeling a little better, and went back inside. Still dizzy though. My husband said that I was ghost-white. I looked in the mirror and got a little spooked. I?ve seen someone look like that before: My husband - when he had heat stroke ? very pale and waxy white, that?s what he looked like right before he passed out and I called an ambulance (a whole ?nother story for another time about how I learned that our house used to be a crack house).

I went back to bed. My husband tucked me in and asked, ?What did you want the Kaopectate for?? Apparently, the bottle I grabbed was not Pepto (no wonder the poor guy was so confused!) :H It was an anti-poop medicine, just the thing for a person on high-dose bac! I finally got to sleep, but it took a day before I felt ?well? again.

I don?t think it was the bac. I think it could have been a combo of the bac, the moda, not having slept in 48 hours, and not having eaten all day (SE of the moda). It's never, ever happened before, so I think it's definitely due to some or all of all that. I'm not giving up on either med yet (getting close on the moda - Bruun, don't try it), but will make it a point to eat whether I feel like it or not. Whether or not I sleep is often not something I control.

I'm at 140, and it's already getting easier to drink. I've noticed that when I first increase, I don't drink much. As the week wears on, I'm more interested in beer and can drink more of it (although no where near an amount that would be normal for me pre-bac). I just upped to 140 again on Sunday, so the "reduction" effect didn't last very long this time. I'm tempted to increase but am holding the line. The breathing stuff remains an issue - I can already tell that it's the one that's going to make me or break me on the whole bac thing. Some days, it never goes away - there is not even a moment when breathing is effortless.

But, onward! Through the bac-bog.

[Murphyx]

Wheeee! or Yikes! Progress thread for Tracy

FUUUUUCCCCCCKKKKKKK!!!!

That's all I have to say. Just FUUUUUCCCCCCKKKKKKK!!!!

[bleep]

Wheeee! or Yikes! Progress thread for Tracy

Jesus, doesn't sound like much fun! I'm tempted to trot out our current favourite word, psychosomatic. Please don't hit me! But curing it with anti-poop...

As you say, THE very last thing you need on high-dose baclofen. You can give up trying for a week at least.

I admire your courage, to plough bravely on, but would be wary of the moda, for no other reason than it is the new face on the scene. You seem pretty aware of your situation, and my advice is based on absolutely nothing, so I'm not going to say much more on it.

You certainly have the breathing thing worse than I ever did. I used to sit up bolt upright and gasp for breath, but often not even remember it the next day, and only when sleeping. Occasionally during the day I would realise that I was low on breath, and have to send a couple of extra breaths down to make up for it. Unfortunately, that means I've no suggestions. Take heart, in that it may be dose dependent, and may leave you soon.

I'm not making light of your issue, and hope sincerely it doesn't return, it sounds terrible. Fingers crossed.

[Bruunhilde]

Wheeee! or Yikes! Progress thread for Tracy

Thank GOD you're alright, Tracy, I wonder if it was the moda too, especially with such a wide list of people who shouldn't take it. I definitely wouldn't take it and suggest you won't either, right? :no:

OH OH OH (a la Horshak from Welcome Back Kotter) and I meant to suggest also that you give DH a honey-do list and a moda, that might be a better combination.

[TracyA]

Wheeee! or Yikes! Progress thread for Tracy

Thanks everyone.

bleep;1082675 wrote: Jesus, doesn't sound like much fun! I'm tempted to trot out our current favourite word, psychosomatic. Please don't hit me! But curing it with anti-poop...
:H

As you say, THE very last thing you need on high-dose baclofen. You can give up trying for a week at least.

Ate some roasted beets and greens. No prob. Also, I discovered beets are good. Only had the pickled kind before and they stink.

Occasionally during the day I would realise that I was low on breath, and have to send a couple of extra breaths down to make up for it.

That one really is a bugger for me. I'm the only one I've read about for whom breathing is *that* big an issue. So I suspect that it's an indication that my lungs are functioning poorly - which is an excellent reason to quit smoking, which is even more reason to stay on the bac.

[TracyA]

Wheeee! or Yikes! Progress thread for Tracy

Bruunhilde;1082682 wrote:
OH OH OH (a la Horshak from Welcome Back Kotter) and I meant to suggest also that you give DH a honey-do list and a moda, that might be a better combination.

Bruun, you always crack me up! I'll have to think about that.

[Ne/Neva Eva]

Wheeee! or Yikes! Progress thread for Tracy

Morning, Tracy.
I woke up thinking about you today.
I thought about how admirably you approached bac this go-round. Having a plan in place for driving, for just about everything, so that you could give this your full attention and considerable determination.

You know how I feel about other meds, and the whole psycho- thing. 'nuff said.

I think your reaction is not that unusual, period. Scary, definitely. A reason to reassess? What do you think?

As to sunnyv and the lessons we can glean from those who have gone before? There are a lot of dissimilarities. But there are a lot of things to be gleaned about what to do and where to find hope as well. Bottom line? It works.

I'm still effortlessly indifferent. Since Feb 4th with two exceptions. Your thoughts have helped me remember that I need a plan in place to avoid a repeat of those two occasions. Thanks for that.
jkttdp! (I know you will!)
Ne

[TracyA]

Wheeee! or Yikes! Progress thread for Tracy

Ne/Neva Eva;1084643 wrote:

I think your reaction is not that unusual, period. Scary, definitely. A reason to reassess? What do you think?
Unusual? I haven't read such an account, but I don't know. I had a regular doc appt. on Thursday. My blood pressure was very low - something/50. It was the 50 that surprised me. I usually run around 85 diastolic (slightly on the high side of normal). Was the 35 point drop due to bac? I also take a tiny dose of atenolol (25 mg) and lowered BP can be a side effect of that drug. But, I've been on it for years, and it's never been problem before. Going off the atenolol is not a choice! The aide wanted to do a second BP check before I left but I scooted out before they could (lest I have to answer a bunch of questions that I really didn't feel like answering).

Bac is a CNS suppressant, known for causing low BP and labored breathing (my worst SE) so I am assuming that, of course, it is the bac. Hypotension would also explain the pale, waxy, clammy skin stuff, unless I somehow managed a psychosomatic response that mimicked shock? At any rate, my body is tipping into the territory where real damage could be done to brains, heart and kidney (which is working plenty hard on the bac anyway), so - definitely time to reassess.

I dropped from 140 back down to 80 yesterday and felt worlds better. Sleeping like a rock again too. Armed with patches and Chantix (which can't be used together, so I need to choose one), I am going to - once again - attempt to quit smoking tomorrow. Also more walking (Max will love that) and am thinking of joining a gym that's not really a gym but a place for people who are recovering from various health stuff. It's cheap and there is no long term contract. If I don't go for a month, I don't pay for that month. Also no young cuties running around making me feel old and withered! But I'm parking the bac at 80 for now.

We went to a family dinner yesterday where liquor was flowing all over the place, and I still had no real desire to drink - even when I tried to force it to get in the swing of things. I even tried switching from Mic Ultra to a couple drinks with hard liquor and ended up pouring them both out. Just wasn't into swinging.

I have not been able to do better than a glass an hour for quite a while now, and unless my body wants to play nicely with the bac, there's no way I'm going to hit "switch." Even if I managed to suffer that far and risk damaging my health, I wouldn't be willing to stay at the kind of doses that you and TerryK take for maintenance. I wrote before that maybe bac can be used as a kind of damage control and, for now, that is how I will use it. As you know, moderation was never my goal, but it may be the best I can do for now. If I can't do better than a glass an hour, I can't actually get drunk anyway. If quitting the cigs and getting in better shape helps, maybe I can go up more later. Right now, I am not even considering it as an option.

As to sunnyv and the lessons we can glean from those who have gone before? There are a lot of dissimilarities. But there are a lot of things to be gleaned about what to do and where to find hope as well. Bottom line? It works.

If you work it?

I am going to consider myself fortunate at having seen pretty dramatic results even at a low dose. So, maybe it's a trade off.

I'm still effortlessly indifferent.

I'm happy for you. :l

I am obviously going to have to put some effort into it! One way or another.

[Ne/Neva Eva]

Wheeee! or Yikes! Progress thread for Tracy

For the sake of brevity I'm not going to use quotes.
To start with, I almost wrote, "if you work it." but thought that might not be so funny. Glad you picked up on it, because it made me giggle.

As to the unusual-ness... only in the severity, and even that, Tracy... What you stated about the CNS stuff, prior history with apnea and smoking, etc... Breathing changes, bp changes are documented in the (limited) research that's been done. (come to think of it, I don't think one of them mentions sleep disruptions. Ha! Maybe that's all in our heads???)

Losing my mind in the middle of the night? I can definitely recall that, and clearly, for all it's incoherence. And I couldn't even have gotten a good laugh (anti-diarrheal? ouch!!)

All that said, it sounds like yours is a good and practical approach. Long term success being the goal, long term plans make sense. And it ALL takes effort Tracy, as you know. Doesn't matter which approach you take, meds or anything else. Still lots of effort and trial and error. In all of them.

You'll notice that the maintenance dose for tk and I is what some others have hit their switch at and successfully moved down from... Wish I could. Not going to happen.

I'd check out Chantix, though I bet you probably have. The SEs scare me, even after the bac! :H And I think there are some warnings somewhere with relation to bac, though I also think that's what Mog took for his depression.

Glad to hear from you. I got worried for a few!

[bleep]

Wheeee! or Yikes! Progress thread for Tracy

Hey Tracy,

That's a shame to hear. Still, you seem to have thought it through very carefully, and have a plan in place, so it's by no means the end of the world. Your post doesn't make it clear - are you getting off it entirely, or are you happy with the effect that 80mg's gives you?

Sorry - this deserves a slightly more thoughtful post, but I'm a little pressed for time.

[Bruunhilde]

Wheeee! or Yikes! Progress thread for Tracy

TracyA;1085394 wrote: I had a regular doc appt. on Thursday. My blood pressure was very low - something/50. It was the 50 that surprised me. I usually run around 85 diastolic (slightly on the high side of normal). Was the 35 point drop due to bac? I also take a tiny dose of atenolol (25 mg) and lowered BP can be a side effect of that drug. But, I've been on it for years, and it's never been problem before. Going off the atenolol is not a choice! I looked up atenolol and it says: "Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat." so it is probably an issue being on both meds, together perhaps (or could it be only the bac, dare I suggest?) causing the CNS probs. As you know already. BTW, I was on this when I was about 25. Funny.
TracyA;1085394 wrote:
Bac is a CNS suppressant, known for causing low BP and labored breathing (my worst SE) so I am assuming that, of course, it is the bac. Hypotension would also explain the pale, waxy, clammy skin stuff, unless I somehow managed a psychosomatic response that mimicked shock? At any rate, my body is tipping into the territory where real damage could be done to brains, heart and kidney (which is working plenty hard on the bac anyway), so - definitely time to reassess.

I'm glad you're taking this seriously, I know you've done all the research on these symptoms and the drugs and you're educated in your handling of this. It's obviously not a choice at this point to continue at the bac dose you were on. Glad the bac is giving you some handle on the AL. That's a biggie. I hope you can sustain it, I know the maintenance dose varies alot. Too bad we cannot "share" symptoms then we would have medium blood pressure between us, and be able to bac up. I note along with you and Nev that it DOES take alot of work and dedication; thankfully the forum and the supplements and the meds (even at low dose) help.

Glad to hear your update Tracy, been wondering how your story was unfolding personally. Thanks for sharing it.

[TracyA]

Wheeee! or Yikes! Progress thread for Tracy

Ne/Neva Eva;1085403 wrote:
As to the unusual-ness... only in the severity, and even that, Tracy... What you stated about the CNS stuff, prior history with apnea and smoking, etc... Breathing changes, bp changes are documented in the (limited) research that's been done.
If you are saying that the SE's are exaggerated in my case because of conditions that already existed or inherent physical weaknesses, I agree. When I read about people who vomit continuously, etc., I suspect the vulnerability for that SE is due to a particular physical make-up or condition that makes the SE more pronounced in that person.

Both respiratory depression and vomiting are symptoms of bac OD. I assume that part of the RDA maximum dosage has to do with the point at which negative side effects surpass intended benefits. Naturally, we see a great deal more SE's since OD'ing (by RDA standards) on the bac is the protocol.

Prozac causes hallucinations in rare cases, even at a dose that does not exceed the max approved. I would imagine that if the dose was bounced up to double+ of the approved max, the number who report hallucinations (and any other SE) on Prozac would also increase.

Losing my mind in the middle of the night? I can definitely recall that, and clearly, for all it's incoherence. And I couldn't even have gotten a good laugh (anti-diarrheal? ouch!!)
I wonder what poor Kev was thinking - me all pale, sitting on the floor, desperate to open a bottle of . . . :H

And it ALL

takes effort Tracy, as you know.

I do know that. There is nothing easy about baclofen or any of it, not for most of us anyway.

I'd check out Chantix, though I bet you probably have. The SEs scare me, even after the bac!

I think it's smart not to add any else into the mix. Patches it is. I forgot and had a smoke before even being fully awake! So, I'm bringing my great talent for procrastination into the mix to try again tomorrow!

I did schedule an assessment at my old gym so they can tell me how much of what to do on all the machines. That's probably the smartest way to get the BP up again. Quite a bargain too! Full gym with fitness machines, cardio monitors, free weights, pool and classes, etc., - $20 per month, month-to-month. The assessment is rather lengthy and includes BP screening and stress tests. It will be interesting to see how much ground I've lost in four years. :upset:

But ONWARD!