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, what dose was given, I started off at 50 twice a day now I'm at 100. I

have only taken it for 10 days so I'm not sure, I think I am a little more tired

from it....Let me know what you think.Thanks

Joyce AZ

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Joyce,

I take 75mg in the morning and 75 before I go to bed. I'm unsure about it so

far. In the mornings I have a hung over feeling. I think it's because my body

hasn't adjusted yet. My doctor gave me a choice

between trying Lyrica or injections. I opted to try the Lyrica first. It

concerns me that my doctor had very limited information on the drug. I'm willing

to try anything to avoid surgery right now.

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,

What kind of injections or what medication was he talking about. I am

going to Mayo Clinic Nov 8, and I will share any info on Lyrica. I am taking 50

mg twice a day and my doctor would like me to go to 100 mg twice a day. I also

feel like it makes me sleepy in the evening I take it with a sleeping pill and

seem to sleep better when I take it. I do not know if it is helping with my

pain. Do you see a difference? Thanks for sharing your info, we as a group seem

to help each other the most, don't you agree?

Joyce in AZ

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Joyce,

I am taking 75 mg in the morning and 75 at bed time. I also take an

anti-depressant (Trazodone) at bedtime. I can't tell a great deal of difference

in pain yet. I don't know if it takes a while to see the full effect or not. I

have to go back to the pain clinic on the

25th. I'm paranoid about Lyrica. There's not enough information on it.

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Joyce and all,

I return to the pain clinic on the 25th for a follow up on Lyrica. I've asked

several professionals in my community and no one can tell me any more that I

already know.

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  • 4 weeks later...
  • 1 month later...

Blondee,

I was prescribed Lyrica within days of the drug being available. I took 75 mg

twice daily for a month. I had terrible side effects (nose bleeds, confusion,

hair loss). I haven't tried the others mentioned in your e-mail. Good luck.

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  • 1 month later...

Hi ,

I take 100mg before I go to bed but I know about the fuzzy head feeling when I

wake up. I hope it helps with the nerve pain how long did it take to work for

you? I've only been taking it for 2 days.

Tommy

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  • 2 months later...
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Hi Ruth,

I'm starting to take Lyrica again. A neurologist put me on it last October but

my primary neurologist changed it for Topomax in January. Topomax was horrible

for me -- made everything much worse. I've just restarted taking Lyrica this

week since I can't stand the nerve pain anymore without something. It helps me

with the pain but it still makes me pretty foggy. That's part of the reason

that I stopped it in January. I'm going to stick it out this time and see

if the fogginess will go away. Last time I tried it for about 3 weeks and was

still too foggy to function on the job. Now, I have no job (disability) so I'm

not as concerned about being foggy.

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Hi ,

I'm just putting in my two cents worth here. I took Lyrica also. I had the

fogginess but I experienced hair loss, nose bleeds, trouble

remembering things, etc. I am now on Cymbalta and so far so good. It works as an

anti-depressant as well as a treatment for neuropathy pain.

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Gee, , what a nasty trade off. I feel that I need to be clear headed in

order to navigate my way through this world, so in general I avoid drugs

entirely & just try to distract myself from the pain by keeping busy & involved.

It works up to a point. At night I just take Tylenol, which does help me sleep.

I'd like to know if the fogginess with Lyrica gets better with time, & maybe

I'll try it. Thanks for the info. What dosage are you on?

Ruth

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Ruth,

Since I've just restarted taking it, I'm only taking 50mg 3xdaily. You can take

up to 300 mg daily if necessary. I've been on it for about 3 days now and I

think (fingers crossed) that the fogginess is going away. I have noticed a

tremendous relief from the nerve pain and I feel overall better. It's amazing

how background nerve pain can really bring you down.

Background pain for me would probably 'kill' anyone without CMT. We CMTers have

such a high tolerance for pain because we experience it daily, sometimes without

even realizing that we have pain. I, like you, try desperately to avoid drugs.

My mother loves to take

drugs and I've seen how 'addicted' she gets so I try to stay away. Last week I

decided to experiment a little bit, though. I wondered if I really had more

pain than my mind led me to believe so I started taking my hubby's leftover

Vicodin (I know it's illegal to take

other people's meds but I also know exactly what meds do before I take them). I

only took one a day for about three days and oh, what a difference! I felt like

going out of the house. I even felt like braving Walmart!

So, I concluded (I am a scientist by training :) ) that the high baseline pain

that I have was really keeping me from enjoying life.

I know that I'm allergic to hydrocodone which is the main pain killer in

Vicodin. It makes me itch terribly and, sure enough, after about 3 days I had

to stop the Vicodin before I scrubbed all my skin off. Then, I hurt again. So,

I decided to start back on the Lyrica

and it has taken my pain away. They say that it is addictive as well (you have

to wean off of it) but I don't think it is as bad as hydrocodone.

The only other med that I take is Provigil 300 mg daily. I couldn't survive

without it! BP (Before Provigil), I slept at least 14 hours a day. That's just

not living. AP (After Provigil), I can survive

on about 7 hours/night and occasional afternoon naps.It's wonderful! My doctor

recently increased the dosage from 200 to 300 mg daily, though, because it had

stopped working as well for me. I've been on it for about 5 years now.

Probably TMI (too much information) :) I know that some folks in this group

have had adverse reactions to Lyrica. Some have had great success with Topomax

but it was horrible for me. So, I guess we're all one big experiment. Hope you

find something that works for

you.

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How long were you on Lyrica before you noticed the

side effects? I believe you (or someone on-list) had

mentioned this to me before. It's funny how meds

effect everyone differently. I can't take Topomax (it

increases my neuropathic pain exponentially!) but

others have had great success with it reducing their

neuropathic pain. Strange, huh?

I'll continue to be cautious with the Lyrica and watch

for symptoms. How long were you on it and what dosage

of Lyrica did you take?

Also, regarding the Cymbalta...I can't take Elavil

(amytriptiline) and other tri-cyclic antidepressants.

They make me very grouchy and groggy all day. Is

Cymbalta in the same family or is it different? I'm

very interested in Cymbalta.

Thanks,

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,

I take 400 mg a day and my neurologist said you can take up to 900 mg a day, My

fogginess took about 6 weeks to go away I still have very little but it's not as

bad and I found a tremendous relief from my nerve pain.

Tommy

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Tommy,

One other thing I've noticed is that, without the background nerve pain

constantly overloading my senses, I can actually feel 'real' pain again. I

mean, any pain that is NOT nerve related. So now, if my wrist hurts, I can't

blame it on CMT anymore and I know that I should get it checked out or whatever.

Did that make any sense?

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,

Yes that makes sense I used to think every pain was related to my CMT. I hurt my

lower back at work and never thought the pain was from my CMT and I could never

get rid of the pain I had epidurals I had my nerves deadened with radio

frequency and nothing worked I was still in pain. Then my pain management doc

sent me to his neurologist and he put me on Lyrica and now the pain is gone in

my lower back but now my mid back is bothering me and I know it's not related to

CMT so I'm getting that taken care of. So you should get your wrist looked at

before it gets worse, I have a high pain tolerance and I always wait till things

get worse before I get it checked.

Tommy

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Guest guest

Tommy,

Yeah, sounds typical for me as well...waiting too long.

I think the wrist is arthritis or something though. Actually, in Jan-Mar time

frame I always get migrating joint problems. First one wrist, then both. One

ankle, then both. It comes every year and then goes away after a bit. I always

thought it was from CMT

but now, on Lyrica, I know it's something else. Still, I think I'll wait... :)

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,

You should really get it checked before it get worse and they mite not be able

to do anything or even surgery. I started to learn to go to the doctor when my

pain lasts a few days or comes and goes for a while I also have a very high pain

tolerance so I have to be careful. You don't need to have bad arthritis on top

of your CMT so get them looked at and take care of them.

Tommy

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Tommy,

Good advice. I always wait too long. I waited three days and almost bled to

death from an ectopic pregnancy. Should've learned my lesson then, I suppose :)

Thanks again. I'll get it checked out now that I know it's not just the CMT.

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  • 1 month later...
Guest guest

Hi :

I have been on Lyrica for about 4-5 months now, and

have not had any feeling of being stoned or anything.

I began taking it for my night time leg pain, and it

does help with that, but I am taking 150 mg. twice a

day. How much are you taking of the Lyrica? Everyone

reacts differently to medications, and I have always

been a sort of " heavy-weight " as far as meds are

concerned, whereas my daughter can take one Nyquil tab

and be spaced out for hours. It all depends on so

much, what you are taking it with, how much, all sorts

of variables. I am glad that it is working pretty

well for you so far, depsite the stoner side effect.

Take care - Kathe

__________________________________________________

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  • 2 months later...
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Have you had issues with Lyrica making you dizzy? I've been on it since the

10th of July and 2 days ago, it made me so dizzy that I got sick. I hadn't

taken any other meds that day and I had only taken 2 of the 3 doses for the day.

It also seems to bother me when I drive...I get really lightheaded and dizzy

which is not a good thing since I drive alot with my business.

Hugs

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It's funny you brought up this subject, I was going to do it myself. Last

night I got up for a potty break and had to hold onto the walls to stumble

the 8-10 feet. When I turned the light on, the room was spinning like I was

drunk, and didn't get better. I couldn't focus on anything and didn't think

of any reason for it, so I just went back to bed. There was still a little

disorientation when I got up, but I seem to have gotten through it. I'd also

noticed I'd get really tired and sleepy in the early afternoon. That must

have been from the morning dose. I'm going to quit taking them, hoping

that's the problem. I'll find out...

Dennis in Eastexas

" You can't always fix it with money "

Re: [ ] Lyrica

>

> Have you had issues with Lyrica making you dizzy? I've been on it since

> the 10th of July and 2 days ago, it made me so dizzy that I got sick. I

> hadn't taken any other meds that day and I had only taken 2 of the 3 doses

> for the day.

> It also seems to bother me when I drive...I get really lightheaded and

> dizzy which is not a good thing since I drive alot with my business.

> Hugs

>

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