Cindi and Baclofen

[ignominious]

Cindi and Baclofen

I understand Cindi

So by all means adjust your dose timing but I would be sure to explain fully to the eye Dr, the SE that you are getting from baclofen so they can take it into account. Explain after you get there so they don't cancel on you!

[Murphyx]

Cindi and Baclofen

Hi Cindi

I had the blurry eye SE as well. I had an opticians appointment and was prescribed glasses. After a week the blurriness went away and I no longer needed the glasses, so I understand that it will effect the results of your examination.

I'm pretty sure my eyesight was at its best (or least worst) first thing in the morning and assume that was due to the long period since my last bac dose, so as Bleep says giving it an 8 hour plus break beforehand might be the way to go.

Good luck

[Cinders]

Cindi and Baclofen

Update:

My eye appt is Wednesday, not Friday. Baclofen brain.

However, I have had to titrate down from 140 mgs/day to 100 mgs/day anyway.

I got serious edema in my ankles and feet. It was so bad, I could barely walk.

This is a known SE of Baclofen.

I see my GP today and she is going to run some tests to check my renal function. I am going to ask her to do a liver enzyme also, since I am planning on taking Naltrexone as an adjunct to Baclofen.

Beatle calmed me down a lot. She told me she suffers from edema, but as a person who takes Coreg for a heart condition, edema in any form is scary and I was very worried about kidney function. Nonetheless, it is prudent for me to get my kidney function checked, since Baclofen is passed through the kidneys and not the liver.

I am also going to try to get in touch with Dr. Levin, as I want to discuss this with him and also get more scripts from him.

Forthwith, based on the outcome of tests, I will be dosing up much, much slower. I think 10 mgs/week. I want this to work and if I can make it work without hurting myself, that is the thing to do.

Cindi

[ignominious]

Cindi and Baclofen

Edema is very unpleasant, you have my sympathies.

Your drop from 140mg to 100mg seems to be a big change. How many days did you take doing it and are the SEs gone now?

My thoughts are with you. Good luck Cindi.

[Cinders]

Cindi and Baclofen

Ig,

I know, fast drop. It hasn't seemed to cause any issues, though.

I went from Thursday at 140 mgs/day down 20 mgs/day until I hit 100 mgs/day. I'll stay here for a while.

Some of my SEs have abated but the edema is still there. My ankles and feet don't feel so bad right now but the day has just begun. I'll see how that goes. I don't mind how they look, just whether I am able to move around without too much discomfort.

Cindi

[ignominious]

Cindi and Baclofen

I wasn't worried about withdrawal but just wondering how the drop in dose has affected your SEs.

I can only assume that on the 21st when you posted that you were at 120 that you took my advice and pushed on up to 140 the next day. Sorry if that caused the SEs to be unmanageable.

I know that you've had and have more than your fair share of problems to deal with whilst titrating up on baclofen. I'd like to ask if you think that the nature of the SEs has changed significantly after 100mg.

[Cinders]

Cindi and Baclofen

Yes, very much so.

The last time I was at 140 mgs/day on my first run at Baclofen, I didn't have nearly as many SEs.

Not sure what the difference is.

Blurry eyes still an issue at 100 mgs/day.

Cindi

[ignominious]

Cindi and Baclofen

What was the highest dose you got to last time and why did you stop? Was it due to SEs or some other reason?

[bleep]

Cindi and Baclofen

Cindi, dropping from 140 to 100 is negligible, so don't be concerned about that, if you are. What I was saying in an earlier post though still applies. Don't take any baclofen whatsoever for at least 8 hours before your eye appointment. You will return to a SE free state of being, although the effect from baclofen will still be present. Then, after your eye test is complete, resume your normal dosing regimen.

I promise you will see results using this. If your eyesight is still funny, it is not a baclofen side effect causing it. Try it before the test to see if it works for you.

[Cinders]

Cindi and Baclofen

ignominious;1104904 wrote: What was the highest dose you got to last time and why did you stop? Was it due to SEs or some other reason?

I got to 160 mgs/day. I stopped due to SEs and work schedule. It was a crazy client. I worked 1720 hours between Jan 1 and Jun 1. A man year in US is 2010 hours.

I was also working crazy hours, it was impossible to keep up with a dosing schedule at the time.

SEs were the tiredness, backache, inability to think, etc, and just not doable on that gig.

Cindi

[Cinders]

Cindi and Baclofen

bleep;1104910 wrote: Cindi, dropping from 140 to 100 is negligible, so don't be concerned about that, if you are. What I was saying in an earlier post though still applies. Don't take any baclofen whatsoever for at least 8 hours before your eye appointment. You will return to a SE free state of being, although the effect from baclofen will still be present. Then, after your eye test is complete, resume your normal dosing regimen.

I promise you will see results using this. If your eyesight is still funny, it is not a baclofen side effect causing it. Try it before the test to see if it works for you.

Bleep,

I did try it last night. I took my last dose at 7:00 pm and by 8:00, my left eye was much clearer. I think that strategy will work.

I am happy to report that my edema in my right foot is much better, my left foot is still aching. I did read that edema is an SE of Baclofen and Beatle confirmed it.

However, the edema I was suffering from was not doable. I could barely walk. Trying to clean up the house before and after the Easter family day was amazingly difficult.

I am going to wait and see if the left foot manages to get better at 100 mgs/day. If not, I will go down to 80 mgs/day and wait and see. Once I get at least a manageable level of discomfort, I will stay at that level a week and go up by the 20 mgs/day every Thursday.

That way I can get through the weekend seeing if that new level is doable. If it isn't, I'll drop to an increase of 10 mgs/day.

I am going to pass this plan by Dr. Levin if I can get in touch with him.

Thank you all for your advice. It is greatly appreciated.

[ignominious]

Cindi and Baclofen

Cindi, I've avoided saying this in the past but I'll say it now. "You work too much by far!"

It seems that the SEs are generally correcting themselves as you've tapered down from 140mg. As with titrating it could take up to a week for the your body to become accustomed to the new dose or indeed for the baclofen to even out in you system at the new dose.

Hopefully the left foot will follow suite within that time and you wont have to taper any more.

Looking at Reneesmiles experience over here https://www.mywayout.org/community/f2...fen-49577.html shows that slow titration can work. It is possible that the at this stage in the journey you may be suited to less than a 20mg a week increase.

I believe that SEs can be taken as a sign that baclofen is working but if they become so cumbersome that they stop you taking bac, then its obviously counterproductive. Only you as an individual can say when they are too much. One way or another you need to increase your dose to hit the switch.

Keep us posted; we're rooting for you!

[Starlight Impress Forever]

Cindi and Baclofen

Sorry to hear you`re having a rough time with getting a perfect fit baclofen dose, Cindi.

Thinking of you.:l

Star xxx

[Cinders]

Cindi and Baclofen

Ig, Star, Zen,

Thank you all so much for your support.

It means a lot to me.

I agree, I have to increase and I will.

(As long as renal functions come back okay.)

Love,
Cindi

[bleep]

Cindi and Baclofen

Cindi, I'm glad you tried it, and glad that it met with success, however limited. You will, over time, gain a very thorough understanding of how baclofen affects you and how to judge the dosage and the response. Unfortunately, you seem to be carrying a host of complications with it. These I am sure you will overcome.

Quite simply, I don't think I have ever met someone with the resolve and optimistic spirit you have. I thought I was an optimist - you have humbled me with your unwavering determination, and it will be this that gets you over these strange symptoms that you are experiencing.