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carolynvb
Veteran Member


Date Joined Oct 2006
Total Posts : 540
   Posted 9/22/2008 8:44 AM (GMT -7)   
Hi guys,
 
Still in the ms limbo.   My neurologist prescribed me Lyrica and Clonopin for now for the pain and muscle spasms....Lyrica kicked my butt even with 3 provigil a day I cannot function at 50mg!  I did not do well on gabapentin either it gave me headaches so I have just taken the 50 1 time a day at bedtime and am going to try and work up to the dose he reccomends...in a week I am meant to be on 75mg 1 tab 2x daily it just makes me soooo dizzy. I am dizzy enough.  Any experience with this drug?  I also take restoril to sleep and zoloft (generic) for panic attacks.  Tried to come off the zoloft slowly did great was at 1/4 of 1 pill a day and they came back so back on them again.  really frustrated with the neuro going to ms specialist now as he still feels strongly ms so waiting for next mri.  He refuses to mri the spine and did not use contrast last time....when asked why he said there is some controversy right now on the dye used and he did not want me to use it. refuses to do an mri of the neck again saying the next brain mri is sufficient.... Druing the EMG I think it is called where they test the muscles (not the one with the needles) the one that takes hours the technician mentioned she saw a definate delay around C3 I had nagged her to let me know if she saw anything and she seemed certain of the issue....the report came back OK when read by the Dr.  My doc has not seen the actual report or read out but will not even talk to the tech and has no intention of reading it saying the other dr is the one who knows what he is doing.  He mentioned that my symptoms are progressing quite quickly and is still unsure if ms or lyme but does not recognize could be both....UUUGGGHHHH. 
What should I do about the Lyrica?  I hate feeling more dizzy than before.  I dont drink as I hate feeling off balance and that was bad enough before taking this now I am a mess.  Will my body get used to it?  I think it is beneficial in other ways...
Any input would be great
 
Thx
 
Carolyn

carolynvb
Veteran Member


Date Joined Oct 2006
Total Posts : 540
   Posted 9/22/2008 5:10 PM (GMT -7)   
helooooooo? anyone out there? lol sorry chaps wanted to bump this and maybe make it shorter so there is not so much to read...

anyone taking lyrica for pain? did you get dizziness and did it go away as your body got used to it? did it add to the fatigue?

thank you :)

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 9/22/2008 5:33 PM (GMT -7)   

Hey Carolyn,

It is good to hear from you again.  I was recently put on a high blood pressure med.  One of the side effects was dizziness.  I was pretty bad for about a month.  I decided I was going to try it for a full month before I called it quits.  It eventually went away.  I didn't feel any relief for a about two weeks and then it slowly got better for another two weeks.  I am down to my normal everyday vertigo again. 

Sometime side effects like that are temporary.  You might want to give it a try for a bit longer.  Good luck. 


Gretchen       co-moderator MS board       diagnosed with MS July 2006


carolynvb
Veteran Member


Date Joined Oct 2006
Total Posts : 540
   Posted 9/22/2008 5:51 PM (GMT -7)   
Thank you :) I am always dizzy so the lyrica just takes me to a whole new level. Thanks for the response. I have been so terribly unwell and the baby is crawling and teething and I feel like I am losing my mind it is soooooo hard when you are unwell! God gave me this little miracle and I am so grateful but gosh he saved the most energetic for last!
Never knew the whole ms diagnosis process was going to be so difficult and sooooooo long.

Capa
New Member


Date Joined Sep 2008
Total Posts : 18
   Posted 9/22/2008 5:52 PM (GMT -7)   
My Dr put me on Lyrica for pain and it caused extreme dizziness; even worse than what I typically experience. Two days after starting the Lyrica I passed out on the way home from the store and ended up unresponsive and asleep for 11 hours. In hindsight my Husband wishes he had called 911 but in the end I was okay.

My Doctor immediately took me off of the Lyrica.

carolynvb
Veteran Member


Date Joined Oct 2006
Total Posts : 540
   Posted 9/22/2008 6:06 PM (GMT -7)   
oh good gosh why did he say you had that response? what do you take for pain now?

Capa
New Member


Date Joined Sep 2008
Total Posts : 18
   Posted 9/22/2008 6:12 PM (GMT -7)   
My Doctor didn't say much except to stop taking the Lyrica. He then set up the appointment with the MS Specialist for me.

Right now I am not taking anything for pain; just Melatonin to help me sleep through it at night.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 9/23/2008 5:24 AM (GMT -7)   
You were unresponsive for ELEVEN HOURS and no one thought to call 911 !!!!!!!!

Gretchen       co-moderator MS board       diagnosed with MS July 2006


carolynvb
Veteran Member


Date Joined Oct 2006
Total Posts : 540
   Posted 9/23/2008 5:35 AM (GMT -7)   
LOL I was thinking the same thing :) I told my hubby just incase I become non responsive pls call :)

Capa
New Member


Date Joined Sep 2008
Total Posts : 18
   Posted 9/23/2008 5:40 AM (GMT -7)   
I should clarify that when I passed out it was about 9 pm so my husband wasn't sure what to do and decided to "let me sleep". In hindsight he is kicking himself for not calling 911. eyes


There is some fear in dialing 911 I think as it's such a big to-do. From here on in I don't think he will hesitate quite so much! blush

healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 9/23/2008 11:07 AM (GMT -7)   

Hi Carolyn

I have been was on Lyrica for 5 weeks.  I experienced several side effects but not being dizzy.  I started at 25mg a day then added another 25 mg, then took 50 in the am and 50 in the pm.  I was too stoned on 50 in the am so they backed me off some.  It was great for pain but my face started to tingle so they took me off it.  4 months later and several tests later the tingle wasn't the Lyrica, it was the MS.  I have also tried Neurontin and can't take that at all.  My only suggestion to you is that backing off the Lyrica needs to be slow after you have taken it awhile.  It was great for the pain but many side effects.  Good luck.

Cindy

p.s.  They don't have me on anything for pain right now other than darvocet (which I am used to) until I start the rebif.  They don't want to confuse any side effects from the rebif with something else.


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 9/23/2008 9:30 PM (GMT -7)   

I am still not clear on the passing out thing.  Passing out at nine at night made some sort of difference in NOT calling 911???

Please, everyone, if you pass out for even a moment, that warrants a 911 call!!!!!  Being unresponsive is not a normal condition for anyone!!!!! EVER!!!!!


Gretchen       co-moderator MS board       diagnosed with MS July 2006


carolynvb
Veteran Member


Date Joined Oct 2006
Total Posts : 540
   Posted 9/24/2008 5:24 AM (GMT -7)   
Thank you Cindy :)  You know I have found that it really does help the pain to some extent. It does increase he fatigue a little but I am hoping that will pass.  I am going to be brave and up it today I think....or maybe I will wait till the weekend as not possible to take a snooze especially with my little one.  He is in his walker now and crawling and would give some of the athletes a run for their money!  The dizziness is increased but boy both conditions stink...chronic pain that narcotics don't even touch anymore unless I take so many I would be on the next episode of intervention or...give this a really good shot!
Thank you again for all your responses,
 
Carolyn
 
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