Baclofen and it's side effects and balance issues

Hey all!  Hope everyone had a good Halloween this last weekend!  My hubby and I and another couple went to see Great Big Sea for about the 10th time and it was a good concert albeit loud and had to stand for almost the full 3 hours.  The crowd goes so wild and dances through the whole concert...it really is a lot of fun but I think I am getting old!  

So, I have a question about Baclofen.  I was prescribed this med and have been struggling to stay awake and have been feeling really dizzy and out of kilter since I started taking it.  I have nasty head pain due to TN but the pain I am having is more like a "normal" headache if there is such a thing! he he  I am hoping that the lack of spasms in my bladder continue to dissipate with this med...THE PAIN IS DISAPPEARING!!!  Now I would like to know if the side effects will dissipate as my body get's used to the med?  I am glad I didn't take it prior to the concert or I probably would have spent the night on the floor!  ha ha

Now I have a bit of a strange question.  I haven't been in a standing crowd of people for a long time up until the concert on Saturday.  There were moments of strobe lights which I tried to avoid at all costs due to previous seizures.  However, every once in a while I would find my hubby hanging on to me because I apparently kept falling over!  I guess it was good I was in a crowd or I would have landed on my head for sure!  he he  I was always falling to the right where my hubby could catch me and even my cane wouldn't have helped because I couldn't feel myself falling!  Weird eh?  Yeah, I am but hey, it makes life interesting at the very least!  hehe

That's about it from my end...gonna go take some Tylenol and see if that helps the headache and lie down for a while...learning just to go with the flow and not fight it.  Stupid MS!

Lots of Hugs,
Rena

[sllowe]

Honey can you try adjusting your times?
Skip the 2nd dose if you have to and see if it makes a difference. You may be able to get away w/taking it at night once it's good and in your system. 10.5 mgs total for the full day isn't alot, but it may be too much for your body.

Once I got back on track I was only on 10 and then 5s right before bed.

Can call your doc too and I'm sure they'll be no problem doing this.

(((hugs))
-shell

[jensequitur]

I've been taking Baclofen, but honestly my balance issues haven't been any worse (or any better!) since I've been on it.  The only thing I've noticed is a vague hangover-like feeling if I have a drink or two the night before.

Great Big Sea, huh?  I know a couple of bands that steal songs liberally from GBS - they're a great pub and drinking band.

[Rena705]

Well...the way I am feeling I don't really need a drink or two to have balance issues!  ha ha  I stayed away from the booze on Saturday and will continue to for a long while now...can't stand getting sick!  hehe

Great Big Sea is not beyond "stealing" a few songs from other bands as well!  They have re-done a lot of songs from old time kitchen parties in Newfoundland.  GBS is an awesome band and I will continue to see them every chance I get!  I am hoping the next time will be in Newfoundland!  Celtic Rock is the best!  hehe

Rena

[jensequitur]

That's so cool!

You might enjoy the Trinity River Whalers - they're a group here in Fort Worth - kind of a Celtic jug band with rock overtones.  

[Rena705]

I will check them out girl!  If you like Celtic music you should check out Shanneyganock out of Newfoundland...they have a few good albums out.  The Downhome Magazine online has a store that sells a LOT of Celtic music.  Take a look anyway, it's a fun Magazine to look at and see how they live in Newfoundland and what is important to Newfoundlanders!

Rena

[sllowe]

Hi Rena-girl,

Baclofen drained me for a couple months. I'm thinking from what you say you are getting this too and maybe the off balance/leaning is coming from heavy tiredness.

Are you a bit stiff in the a.m's too? And then loosen up after you get moving around?

What dose are you at now? My affects wore off. And, they were definitely worth it because it chilled my spasms for what it's worth.

-shell

[Rena705]

Hey honey...I don't really know if I can take this much longer!  I got up at 10:00a.m. today and was asleep on the couch again by noon and slept till 3:00p.m.  I just took my second dose of the day and I feel like crap!  I'm dizzy and nauseous and drowsy and who knows what other symptoms I will have this evening!  I am taking 5mg 3 times a day and it's wonderful that my bladder is not giving me anymore pain but don't know if this is worth it.  I will try it for a few more days and see if things improve but I know I couldn't drive feeling like this and I have had to stop driving so many times in the past due to my health I don't think I want to be restricted like that due to the "cure".  I will let you know how things go and you could be right...maybe the leaning is due to fatigue!  I guess time will tell and thanks for getting back to me honey...I really appreciate it!

Lots of Hugs,
Rena

[Lulu54]

Rena,
Hi girl.  It's always good to see you here.  I'm wondering if your doctor gave you a taper to get you to this dose.  I know when I went on Baclofen it took about  21 days to get to 3 x 10mg.   My neuro wanted to do it very slow to allow my body to adjust without any big jolt.  

Don't give up on it yet - be sure to give it a fair amount of time for your body to adjust.

hugs back at ya
Lulu

[jumpinjiminy]

It made me feel a little loopy and off balance the first few days. I was started on 10mg 3x daily and then bumped up to 15mg 3x/day two weeks later after severe abdominal spasms. It gets rid of my headaches, and helps me sleep at night better than before.

Is the morning stiffness related to the baclofen? It seems I was much more stiff in the mornings before taking it.

[sllowe]

Honey can you try adjusting your times?
Skip the 2nd dose if you have to and see if it makes a difference. You may be able to get away w/taking it at night once it's good and in your system. 10.5 mgs total for the full day isn't alot, but it may be too much for your body.

Once I got back on track I was only on 10 and then 5s right before bed.

Can call your doc too and I'm sure they'll be no problem doing this.

(((hugs))
-shell

[Rena705]

Well I guess I will give this med a bit of time then and see how it goes.  I was started on 5mg three times a day and am feeling a bit better today but could go to sleep very easily if I put my head down on a pillow though!  OMG!  Hubby just asked if I wanted to go fly fishing at our favorite lake!  How cruel can you get?!  I would be sure to fall in if I got within a few feet of the water...I am having a hard time getting into the shower for crying out loud!  It would be nice if I could though cause the weather is really nice here and it's supposed to be until Saturday!  
Anyway, I will keep on this Baclofen and I appreciate all the responses that I got.  I really don't know what I would do without this Forum...you are all life savers!

Lots of sleepy hugs,

Rena

[Guitar_grrrl]

Hi, Rena,

I'm on 20 mg 3x/day, and I'm tolerating it pretty well.  My ramp-up period (6 weeks) was a little wobbly, but when I got to where I am now, things seemed to settle down.

I've never had trouble sleeping anyway because I'm pretty fatigued a good deal of the time.

A little late season fishing?  I'll take the bait!
Hugs,
Lisa