Zanaflex
 

Hi all,

Just wanted to take quick poll and find out how many people have tried zanaflex. I started at this afternoon as well as increasing my lyrica to 150 mg and felt really quite out of it. I was eating lunch out and took the meds not even thinking my boyfriend had too literally take my arm and guide me out the restaurant. Although my pain was gone I was completely stoned. The zanaflex dose was 8 mg from the doctor I only took for milligrams because I'm increasing the lyrica from 75 to 150 tid. I know that this medication is used for multiple sclerosis patients as a muscle relaxant. So any input would be greatly appreciated I will be doing some research on it and I do know it is not good for pregnancy or if you're getting pregnant...... not that I'm suggesting anything but like to get married first........ if my boyfriend ever decides to finish his education!!!!! Only one more year than he can practice radiation oncology!!!! Can't wait....... perhaps my left hand will be a little heavier soon..... okay getting off topic sorry....... any input on zanaflex would be appreciated!!!!!

Thanks to all,

Victoria

Victoria,

I've been taking it about 3 years. Am supposed to take 1/2 a 4mg tab a.m., another 1/2 mid-afternoon, then 4 mg at bedtime - but I can never remember the mid-afternoon one! But I find if I take 4 mg all at once during the day, I'm just out of it - it completely relaxes ALL of me, not just my muscles! And if I'm up late as usual and don't take the 4 mg til 3:30-4:00 a.m., I have a really hard time waking up a few hours later to get my youngest around and on the bus. For me, 4 mg is pretty powerful, so I stick with 2 mg during the day.

I thought Zanaflex had a pretty low max dosage when used strictly for muscle relaxant, like 12 mg/day, but maybe not? :confused:

How great that your pain was completely gone though!! :)

beth

Edit: Here's info on both Zanaflex and Lyrica - both have sedating effects, dizziness, etc - especially in the first week, or titrating to a higher dose, so you gave yourself a double whammy dear!

Also, the max dose for Zanaflex is 36 mg/day, but they don't have much long-term research on doses above 24 mg/day. Recommended dose is 8 mg 3x/day. However, that is rec. dose for MS patients and others with severe muscle spasticity, to me it seems high for TOSers???

http://www.rxcarecanada.com/Zanaflex.asp

http://www.pfizer.com/pfizer/download/uspi_lyrica.pdf

I've been on Zanaflex for over 3 yrs. and it's helped me considerably. But, you have to work up to a higher dosage. While you can supposedly take more, it's my understanding (from my neuro and PM dr.) that the maximum safe dosage is 24 mg. a day. At first I was taking 4 mg. twice a day and 8 mg. at bedtime but I quickly learned that if I took 4 mg. during the day, I would be wasted. So I started taking 2 mg. during the day and 8 mg. at night. And most of the time I only take the morning dose and skip the late afternoon dose unless I really need it, because if I take it I'll fall asleep on the couch while I'm watching TV and will sleep through CSI!:eek: :( I usually take it and my other bedtime meds about 30 minutes before I plan to go to bed and when it kicks in I've GOT to go to bed or I'd be sleeping in the floor.....You'll probably just have to experiment until you find what works for you. According to my research, Zanaflex is given to people with MS and spinal cord injuries as well as people with chronically spasmed muscles. I also tried Baclofen but it didn't help at all.

I have tried both and could not take the zanaflex due to being out of it no matter how small a dose I took and the Lyrica made me have blackouts so now only take 50mg at bedtime since I will be assured I will sleep but now am having nightmares and it seems to me that both of these drugs are too powerful for me. Hope you find what works for you.

Right after my surgeries, I was taking 10mg Tizatidine (generic Zanaflex) twice a day. Yeah, I was whacked out, but I was also taking oxycontin 20mg twice a day. Somehow, I still managed to be awake a few times during the day. :D Loads of naps.

Later I was switched to flexaril 10mg., I had taken this before and been completely knocked out for 12+hours, so I modified the doseage to 1/2 a tablet (5mg) at bedtime. None during the day. So far, it's working good - been a year tho and I feel the need to increase the dose back to 10mg - but only at night. I don't think I could function during the day like that.:rolleyes:

No odd side effects like weight gain or depression!

Anne

Titering big time
 

zanaflex
 

Hi Victoria,

I tried zanaflex but no matter how low the dose and how long I tried,

it just kept making me so tired I had to stop. My other meds make me

sleepy, but this one sent me over the edge and I spent way too much time

sleeping or trying to get out of bed !!!

Good luck in finding one that is effective,
Pat

thanks guys!
 

wow what great input thanks a lot for the posts!!:D

I have started at the 4mg tid.....and find the drunk feeling for about 45 mins then feel ok....but taking the 150 lyrica at same time know same side effects so I wait and then go ao but my business...put my makeup on this am with the drunkeness and was ok.....neeed to concentrate but can do things............but NEVER drive or operate machinery.....lol

I guess I am looking for the magic combo to deal with the pain withouthaving to take narcs again dont want to go that route agian.....if I can help it.....so far pain seems much better.....although muscle relaxants do have an effect on sex life.....sorry hope not offending...but we all have one or have had one I guess......lol sort of had one or whatever..... not trying to be rude....hope not offending but I think this is a big topic that we really don't discuss at all.........I guess I''ll leave that one open and see if anyone posts about it.......lets hope we are open minded enought not to be crude rude or nasty, just honest and open.....

thanks guys again for all the info.....it really helps....like a second opinon only it is many of them...lol

take care all,
hugs,
Victoria:o

Gibbrn
 

I am not on a lot of meds. Not Zanaflex, Lyrica or anything like that. I take 225mg of Effexor for depression and panic. I take T3's for pain, and the Dr. has me also on amitriptyline for the nerve pain. None of it works, but as I am heading into surgery hopefully soon he is reluctant to put me on anything stronger.
Now, having said all of that.... Since I was injured and have started taking all of these meds I have gained about 40lbs, and my sex drive has gone completely away. I find that between my husband not wanting to hurt me and feeling so exhausted from the pain we have almost no sex life at all.
It is frustruating for both of us. I worry constantly that he is going to end up finding it elsewhere. He asures me that that is not true. He always jokes that between me, the kids, the house and yard where would he find the time or energy.
My feeling is that if I could lose the weight I wouldn't feel quite as crappy all of the time, and then maybe there would be a chance.

can we talk about...
 

can we hijack this thread??? would keep it off the radar.

It's totally on topic!
Anne

bring it on girl....
 

sounds good to me I am all for hijacking....if enough people know to look for what we are talking about....not a problem....it is medical not like we are talking pos*^%(s or anything just problems!!!!!!!

victoria.......

go girl

have to hurry and do this b4 my BF gets here!
 

OK, it's just this:

I heard on CNN some Dr talking about how the brain is most stimulated by the hands - your tactile senses fire the most neurons in your brain, and you have more nerves in your hands than (anywhere?) else.

With us TOSsers, we are losing/have lost a great deal of feeling in our hands... thus the brain is being stimulated less and less. Not good for the brain. I find myself unconciously rubbing my hands on 'textures' to try to 'feel' anything.

I think not having to exert myself physically (no bad ergonomics) combined with (content deleted at the request of mods), got my nervous system awakened in a good way and the results lasted a good 2-3 days!! YEAY!

Any thoughts on this?? I'm all ears.

Anne

I wrote it because I was hoping I could help someone and someone could help me. I guess that is not possible here.

edited because I shared intimate info about my personal life, and I don't want that type of personal stuff to be available forever :)

a good man is hard to find.
 

Endorphans... yeah Jo. I wonder if this is different from what the SCS does? Dr.A has said the SCS is my last option for pain control and I am not keen on the idea. I'm encouraged that Beth has had good results so far... I'll wait a few more years and then see how they still function. (content deleted at the request of mods)

Anne

I am so proud of all of us!!
 

Hi all,

I am so glad that we are able to discuss all of this VERY improtant information. I find that with me forplay is everything and I just lie in my most comfortable position until...... and if I can go on my back I do if not spooning amazing and it works for all go on whatever side is more comfortable. If I do go on top I use my head and shoulders on the wall bed head at wall and that works well no arm use and head ok just for a little balance my guy does all the work. I just go myself a new battery....... and from LINK REMOVED AS PER MODERATOR INSTRUCTIONS PLS EMAIL ME IF YOU WANT IT..........VICTORIA........... yes is Canadian....but free shipping if you give a report on your purchase. I hope this helps some....oh my little green friend is called the worm. Also little pocket rocket requires no effort on the arm side of things.....so warm up then get your guy or get him to do the job.

Pain decreases incredibly....as well as crabbyness when this happens......it makes a huge difference in life and how happy you are .....your brain is wired for it!!!!!!! I don't wish to offend and we all keep saying this but I think that we are honest and not being dirty......as none of this ever is it is just "taboo" well not in my world we are all se&8al beings and need it!!!!! So we need to find ways to help each other get to the right palce and comfortably. I am all for this discussion.....seen as I started it and it seems to have sparked a huge need for this discussion........I hope we can keep this up and help each other with our problems.

I know that we will not be able fix all the probs....but we can suggest and help in small ways.

anyone heard of the frog.....in legs are in ok shape an probably we are all ok in this respect in one way or another....it is like doing push ups with your legs on top. I can't do it for long.....but guy takes over then I do give n take on both sides....and yes "thank God for good men"

I Always support my neck with my buckwheat pillow (my best friend on earth....aside from my green friend the worm....lol)

my guy the doctor tells me stimulation is all in the brain not the hands....yes there are many nerve endings in your hands....but think of how many are in your lips or your face.......your lips can tell if nailpolish is dry!!!!!! ok so now that is a huge issue if your brain is not in the game and your head is only on pain then that is all u will think of and you will never get to the (and I quote from Anne so astutley put ) "Pleasureland" love it!!! So you have to have your head in it!!!!!!!!!

Oh and why can we not be in a comfortable position and stay there and let our wonderful men please us as they will......:p no pun intended with that smiley.........let your mind and all else go and lie there and ENJOY!!!!!! YOu have to let yourself do it.......be free to enjoy the sensations......despite the time it takes due to the muscle relaxants.....time is always my issue.....anyhow hope this helps some and lets keep this going guys love the open honest conversation with you all....who else can we discuss this with without an argument (our guys???not always...)

love to all
Victoria

thanks guys!!!!!!!:D

we probably need to be careful about links that we put for certain kinds of things/products.
Maybe send via PM.


If you all haven't checked out the guidelines - Please see the Community & Forum Feedback section.
http://forums.braintalk2.org/showthread.php?t=1293

consider it bookmarked. :D

edited because I shared intimate info about my personal life, and I don't want that type of personal stuff to be available forever :)

edited because I shared intimate info about my personal life, and I don't want that type of personal stuff to be available forever :)

great advive
 

Thanks for the great advice about physical and emotional intimacy......I tend to forget that they are seperate and need to work on keeping both in the right place........

Victoria

guess that's the end of that......
 

ok so no more issues???? hope all are well!!!!!



Love Victoria

Had lunch with BF at his work today. I mentioned the topic at hand as I had told him about my hypothisis and how I wished I had you guys to bounce the idea off of. (content deleted at the request of mods) He said "Anything to further the cause of science!". :D

hope all are well and good (as can be expected).
Anne

Astern
 

Keep us posted. Would love any ideas you two come up with!

Honest I am not really a voyuer, I just need to figure out how to get some satisfaction.
Tracy

lol
 

Glad to hear your hubby is up for the game......

Victoria

Hi guys
 

We have been asked not to post this sort of thing.....although as a nurse I feel STRONgly tht it be discussed openly and is important......why we can't discuss it in a SAFE place is frustrating but rules must be obayed.....no pokes at anyone just saying how I feel..........I want to feel like I can ask my BT friends ANYTHING and get help with it in a safe place!!!!!!!

so we have been asked to post our topics here

*expired /closed site link*

hugs and understanding to all no matter which side you are on....peace an love to all........want to keep peace and faith of all here.....

Victoria

sorry trix, I wont be keeping anyone posted on this topic. ;) But was grateful to broach the subject with some. sorry to have offended or made anyone uncomfortable. that was not my intention: which is why I cleared it with the Mods BEFORE bringing it up.

Anne

We do also have a Sexual Disorders Forum and I believe a name change is in the works so it will be more applicable across the board for these types of discussions.

Thank you all for your understanding. I'm sorry about any confusion.
As a new forum and support team we are still firming and clarifying many issues that will come up.

There IS a forum here for sexual disorders - anyone seen it? Perhaps that could be broad enough to include those of us "disabled" by pain? I find it really tough cause touch most anywhere on my body causes intense pain due to allodynia. I think it's worth bringing up to the mods/Doc John or Kimmie Dawn to either add Sexually Disabled or something similar to the Sexual Disorders forum title, or make it a stand alone forum.

As long as people are adults and treat it respectfully, there should be a place for it here. If they don't then at least we tried, right? I'm sure we're not the only group of people here grappling with this, and there is a huge need to at least mourn the loss and hopefully find some new ways of intimacy, whether or not it actually involves making love.

Anne? Victoria? One of you up for presenting the idea? I think you've done a great thing bringing this out into the open!

beth :)

Edit - Great minds here - Jo posted right before I did! Gotta love it here, the admin and mods are SO responsive!! :D :D

beth we must have been typing at the same time LOL

Not a prude but.................OT
 

Liz and others I am glad for your own personal safety and protection and confidentiality of this issue, that you deleted your posts.

This forum can be viewed by all ages and some have no idea what TOS and other diseases can do to couples. All they read is PG13 or ?? rated posts.

There are also men on this forum reading. Count me old fashion but I do not care for strangers reading about my sex life. I do not want to read about there's.

I know when there is a personal issue on my forum..there is an exchange of personal e-mails via PM and a group of ladies do their private talking via personal e-mail and CC the others. It works very well. They feel much safer this way and their privacy is safeguarded.

Signed: No Prude Prissy here. :p

Watching this with interest. I don't have TOS, but can relate to the pain-related issues. Or should I say, used to be able to relate, but then I'd have to wisecrack about how long it's been and then I'd get in trouble. Oops. :o

At first I thought a passworded forum might be the answer but then...that would be a whole other difficult issue to address because then who would decide who could have the password and who couldn't. So, that's a moot suggestion.

I'm sorry for the types of pain you have. Pain is a nasty thing.

:)

I guess I find it very distressing that there are issues in my life that are directly affected by my having TOS that I am not allowed to talk about with the only people I know who have the same problems that I do. I guess you people think that the only place sex should be talked about is on the bedroom or the porn sites.
I asked for help in a support forum, and am now walking away feeling more distressed and alone then ever before. I was just looking for one good thing in a life full of pain, lonliness and dissappointment. I won't bother anyone here anymore.

please see this post by DocJohn-
http://forums.braintalk2.org/showpos...7&postcount=13

I must be the odd one out.
 

I know this is a very old thread, But I do not know how this is effecting most of you in a bad way, (IE) Drowsy, lethargic, and general not being able to function even on 2 to 4 MG of Zanaflex.

I take 4 to 8 mg anytime of the day, It doesn't phase me in the slightest.
It helps my neck a bit. Nothing to write home to mom about.

Ive been on Flexeril also, which has nasty heartburn side effects.

Guess I should be thankful that I don't get drowsy.

Thanks for the info on this forum. It was interesting reading.

missed all the fun
 

zanaflex & flexoril - i don't remember the dosage but it has never made me drowsy. i wish it would so i could use it for a sleep med. as for enjoying a partner - i can't remember that far back. sigh.

dasng09
 

Hello, I'm new as you can probably see. I've been on Zanaflex for appx 10yrs 4mg 4 times a day. I've never had any the effects on here I've read about. I see my pain MD tomorrow and, planning to increase my Zanaflex up to 8mg, 4times a day. If I get the Ok I'll let you know how it's going.
Deb

I've been on Zanaflex for about 2 weeks now. Soma and Flexeril have no effect for me anymore. I'm a bit odd as most drugs at normal doses don't make me drowsy. Zanaflex at 4mg doesn't but it does at 8mg. No real side effects for me at 4mg but I have very vivid dreams at 8mg (kinda cool side effect if you ask me). As my symptoms are worsening, 8mg is only keeping me asleep 2-3 hours now and not offering me much tension relief anymore.