Saw Dr. C today

[Donna7]

Well, I saw Dr. Centeno today...I asked him about restarting the Zanaflex and he gave me some samples of 2 mg capsules. I took one when I got home and again this evening; the first one put me out for a nice nap :) but the one I took this evening didn't even make me sleepy (I was kind of hoping it would!). It did help, though, I think, as I've been in a flare all week and mostly unable to type until tonight.

He also gave me some Cymbalta samples...if anyone has advice on that, I'm open to it! I'll take the first one in the morning.

We also discussed doing a myoblock injection, which he said is similar to a botox injection but uses myoblock instead of botox. Have any of you heard of it? Any experiences? He said it will wear off in about 2 1/2 months, so if it causes more pain I just wouldn't have another one...and should be a good indicator of whether or not surgery would help. Since I'm still recovering from cervical disc surgery, I'm going to wait until I have as much strength back in my other neck muscles as I can get, so if I lose the scalenes the others can compensate.

It's been such a rough week...I came away more encouraged than usual, with some new meds and treatment ideas.

I hope you're all doing well, and that the cold weather isn't causing too many problems! We had a bad snow storm here today, but tomorrow is supposed to be near 60, with 70s on the weekend. Colorado weather can be really crazy sometimes!

Take care...
Donna

[redjpwranglergirl]

Donna,
I've been on Zanaflex for over 3 yrs. and it's really helped me considerably. I take 2mg. twice a day then 8 mg. at bedtime. It would put me out when I first started taking it but my dr. increased the dosage slowly and now it doesn't bother me at all- but of course, I wouldn't take the full 8mg. dose during the day.:eek: Just make sure you check with your dr. before you change your dosage. I haven't tried Cymbalta although my neuro wrote a prescription for it last year. I never filled it because it wasn't covered by our insurance plus I'd read that it caused weight gain too and I'd already gained PLENTY thanks to the Neurontin.

[Jo*mar]

Donna it's nice you have a dr that will work thru some options with you - I hope the med & dr continues to help.

[Donna7]

Thanks, Red and Jo! I tried the Cymbalta this morning but it made me nauseous...I really hate that, so I'm not sure I'll try it again tomorrow. I might switch to the zanaflex on a regular basis and see if it will help enough that I can skip the Cymbalta.

Trial and error! I'm thankful to have a doc that's very familiar with TOS...he was pleased that the neck surgery went well, as he was felt I was at risk of developing RSD.

Take care, all...

[gibbrn]

What would I do with no Zanaflex???? oh be in a huge flare all the time!!!!! So glad to hear that it is giving you the relief! Hope all continues well with your meds and you are able to get relief!!!!

take care,
Victoria

[Donna7]

Thanks, Victoria! I tried the Zanaflex again today, a couple of hours before we were due to go to a friend's for brunch, and it again wiped me out for about an hour!! I can't figure out why the different reactions at different times...I guess I'll only be able to take it when I know I'm not going to need to be alert. It definitely wore off by early afternoon, but I couldn't take another one then...:(

I'm so glad you've found some relief with it!

Take care...

Donna

[gibbrn]

I too have found the same!!! Depends if it has been 8hrs since my last dose....depends what I have taken recently as well as if I have eaten or had a drink....a big no no for me with Zanaflex......so it is all to do with absorbtion. I have found tht taking it every 8hrs I have not been so sleepy on it! So at first I was totally and I mean TOTALLY stoned on it!!!!! but I took four mg to start....also a no no but my doc gave me 8mg and I halfed the dose to see the effects before I took it all and good thing!!!! I would not have been able to move!!!

In between doses and definatly not close to doses I take 10mg of diazepam to keep the muscles somewhat relaxed until next dose...or whatever dose you could handle if you have taken diazepam before...not sure....(vallium)...my best friend would be lost without it not kiddng!!!!

I also take amitriptyline and can't take it near my zanaflex....fine tuning required!!!! until I knew the effects I wouldn't drive or plan events until I knew what I would do......sucks yeah but it does the job in my case I can only hope you have the same results.....we are all lab rats!!!!!!!!!!!!!!!!!!!!

take care Donna,
Victoria

[gibbrn]

http://www.myobloc.com/hp_about/PI_7-19-05.pdf

any good to you????

Victoria

:)

[Donna7]

thanks...i'll do some reading...had impairment exam today so cant type tonite. thanks so much! Donna

[Shelley]

Hi Donna,

I am glad that you are making some progress and have a flexible doc who works with you.

I love zanaflex. It knows me out too. The only thing I experienced is that sometimes I will wake up in the middle of the night and be totally awake. Weird, maybe not the meds.

I tried cymbalta and I did not like it. I took it for 3 days and it made me irritable. I think it might have been the noriepi (spelling) which gives you a little lift until the serotonin kicks in. I did not make it to the serotonin stage.

Glad you are getting some relief.

[Donna7]

Thanks, Shelley, that's so nice of you! I've had that experience with waking up, too...I don't know if it's related to the zanaflex or not. It's been a while now since my original post...we switched things around a bit and tried the Oxy ER for flares with Oxy IR for breakthrough, and went back to Ultracet for "everyday" with Zanaflex thrown in...but the Oxy ER and Oxy IR together gave me such miserable side effects, I will never take the two together again. So making do with Ultracet and Zanaflex, with the Oxy IR when needed.

Wow...we all sound like we could be pharmacists on here!

I need to wait on the myobloc, but I think I will have it done as soon as I can afford the copay.

I'm glad the zanaflex is working for you, too...it really does help, still knocks me out if I'm already a little sleepy, but I can sometimes push through it now!

Take care...

Donna

[hairdresser]

Hello; just thought I'd jump in!! I wondering if Lyrica would help you with your pain. I think it works like cymbalta. Maybe you could ask your doctor about it? Some do have weight gain from using this drug. It's hard deciding between the pro's and con's on what medications work best to give us relief from pain with as few side effects as possible. Thought I'd take the time to say hello to everyone.
Hairdresser

[Donna7]

Hi! Thanks, Hairdresser! Yes, I've tried Lyrica...made me gain weight, made me dizzy, and didn't help noticeably. I just asked him about trying it again when I saw him last month, but he didn't think it would be any different second time around. Thank you for the suggestion, though!

Take care,
Donna

[astern]

hoho! Oxy IR and ER... boy do I remember them from post-surgery! Had me seeing spiders on the wall for weeks! I called the ER's my 'gasoline pills'. That's what they tasted like going down.

keep trying, you'll find the right combination. And don't be surprised if after a time you need to switch up again.

:hug:
Anne

[sandy1955]

I took cymbalta for about 6 months I think it was. I didn't realize how much it may have helped my intense pain until after I stopped it. I had problems coping using it as an antidepressant. My friend said she didn't think it was working for me, and I didn't seem to be able to handle things very well without crying. Of course there were a lot of things going on at the time which I usually thrive on drama but not on cymbalta. So I went back to prozac. On cymbalta I cried a lot and felt really overwhelmed, but on prozac I feel like killing someone. I guess everyone was used to me fighting my issues and theirs too, so they preferred me on the prozac..lol...
A little background on me in case you don't know: I've had left rib resection for vascular and neurogenic TOS-left tennis elbow release, radial tunnel release and cubital tunnel release surgery all done at the same time, right cubital release in one operation, and then right carpal tunnel releae and radial release in another operation-and then just last October had left carpal tunnel release.......so I have had some pain to deal with......