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Old 08-10-2010, 08:55 PM #21
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I order a lot of supplements from iHerb--their prices are very good and the service is terrific. Benfotiamine is hard to find locally, but iHerb has several brands. I take it 4x a day because I felt I was keeping the level up in my body that way--I did read MrsD's post where she said you could take it all at once or separately though, and she knows a lot more than I do about these things! I think R-lipoic acid might be harder to find locally too, but since I order about every month from iHerb, I just get it from them.

Incidentally, Saturday morning I listened to an eye doctor on the radio talkiing about various supplements for the eye, and he recommended benfotiamine for that too.

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Old 08-12-2010, 03:45 AM #22
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This is a bit off topic but then again so is the whole thread
Something I noticed while tapering down off Lyrica to neurontin. Firstly I tapered down from 300mg of Lyrica to 75mg in around a week whilst adding 300mg of neurontin. BOOM----> at these levels my neuro pain has decreased dramatically!

On 300mg of lyrica apart from the awful side effects ie zombie cant get motivated, wild ringing in the ears, dropping things, balance issues , insomnia etc etc , I also had an increase in nuero pain (burning, cramps etc) and I suspect it may have been mild swelling putting pressure on the nerves in my feet. Although my feet weren't physically swollen they felt like they were if that makes sense

Now Im not going to ramp up neurontin either. 300-600mg neurontin in the day and 75mg lyrica at night is perfect with pain at around only a 3.

my point being coming off high doses cause withdrawals which obviously effect the nerves and I nearly went back to my full dose because it was very uncomfortable in the 1st week

Morale... I wonder how many are on high doses that dont need to be? tapering down can send confusing signals so many i guess just stop the process through fear of more pain

If you are on high dose lyrica/neurontin and you still have breakthrough pain then perhaps you dont need the high dosage?

Just something i wanted to share..
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Old 08-12-2010, 09:11 AM #23
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I agree, I don't know if higher doses are necessarily more effective. I have found that backing down on meds for a few days, or going off for a while, makes them work better at lower doses...but there is always a withdrawal. I plan on staying at the lower doses and gutting it out....seems like I gut it out no matter how high or low a dose is. Nothing is totally effective.
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Old 08-12-2010, 10:49 AM #24
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Cyclelops, I could never tolerate the higher dosages of neurontin. After trying several times, I have scratched it off the list. Lyrica was also a no go... Both made me wacky and gave me edema. I looked like I had elephantitis. I have been taking AND tolerating Savella. It seems to be working. I think. I was doing better until I got a huge arthritis/autoimmune flare a week and half ago. My wrists, hands and fingers are now extremely painful and swollen. Rheumy tol me it is causing some carpal tunnel in right hand. Kind of sucks since everything requires use of HANDS. Damnit.

I went to Rheumy, he upped Humira to weekly, put me on a pred. pulse and did labs for about the hundredth time... I am sure inflammation is there but I wonder about the other things? We will see.

I hope you feel better. Oh I can type with the hunt and peck method for now.

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Old 08-13-2010, 10:02 AM #25
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Crazy Sooooo....

......how long(ish) does it take to notice if the Neurontin is going to be of help? Is this another one of those 'it-takes-about-6-8-weeks-to-get-the-full-effect' meds?

I too have recently (4 days ago) started taking Neurontin 300mg 3x/day....in the hopes I can back down from my breakthru med (Lortab).....

I had a very bad experience on the Lyrica/Amitriptyline combo my neuro put me on 3 yrs ago and have finally drifted back down to this planet we share after blowing up like a Hot Air Balloon ! !

Since then, however, I've had an SCS implanted which takes ~ 70% of the level 8 pain away.....
So now I'm hoping this low dose Neurontin will be of benefit to the 30% of pain that continues to plague me in both legs.
I realize that Neurontin is a direct cousin of Lyrica, so I am being very leeery of this tryout........

So far, i feel nothing ..... ?
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Old 08-13-2010, 12:18 PM #26
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I have tried Neurontin and Lyrica several times with bad effect. When I tried the Neurontin last time, I started at a dosage of 300 mg/day. I did not notice any improvement in my pain at that dosage - even after two months time. When it was upped to 900 mg per day, I did have some small relief in pain though the side effects were pitted edema and confusion/irritability. I noticed the confusion/irritability with the smaller dosage as well. The slight improvement in pain and pitted edema occurred rather quickly after the increased dosage - perhaps within one week. Therefore, it was discontinued. Hope this helps.

I have been successfully taking Savella, 50 mg bid for three months now. I hope it continues to work without fall off. I also take Lortab - 1-4 tabs per day for pain depending on my pain level. I do have several pain issues including the SFN, dysautonomia, FMS and undifferentiated AI/arthritis disease. The pain medicine helps me to maintain a more active lifestyle, although I am still on SSD (and wish I were not). I have been on Lortab for many years. Successfully, I might add, meaning: I have not required an escalation in dosage, my liver is still functioning well without an increase in liver enzymes, and I automatically take less of the drug if I am feeling better. I am sure that I am dependent on it, but not addicted. The same doctor has prescribed it to me all along.

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Old 08-13-2010, 08:00 PM #27
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Thumbs up Very helpful!

Thank you Mere!
Yes indeed that was helpful......and since we've both taken Lortab for several years, I'm sure our bodies have several things in common (regarding the tolerance, etc..) so, I'm gonna really take heed to your words.

I am not holding my breath on the Neurontin tryout, but ....we'll see....

ACTUALLY, I forgot to ask this! I'm actually on the GENERIC of Neurontin (Gabapentin).
Is it to anyones' knowledge or experience that 'you get what you pay for' in regard to this med?
I've heard some people in the past claim that it is worth forking out the extra $ to get name brands on certain meds......
Just wonderin.
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Old 08-13-2010, 11:48 PM #28
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Quote:
Originally Posted by Rrae View Post
......how long(ish) does it take to notice if the Neurontin is going to be of help? Is this another one of those 'it-takes-about-6-8-weeks-to-get-the-full-effect' meds?

I too have recently (4 days ago) started taking Neurontin 300mg 3x/day....in the hopes I can back down from my breakthru med (Lortab).....

I had a very bad experience on the Lyrica/Amitriptyline combo my neuro put me on 3 yrs ago and have finally drifted back down to this planet we share after blowing up like a Hot Air Balloon ! !

Since then, however, I've had an SCS implanted which takes ~ 70% of the level 8 pain away.....
So now I'm hoping this low dose Neurontin will be of benefit to the 30% of pain that continues to plague me in both legs.
I realize that Neurontin is a direct cousin of Lyrica, so I am being very leeery of this tryout........

So far, i feel nothing ..... ?
"I had a very bad experience on the Lyrica/Amitriptyline combo"

me too and it did this to me

neurontan for me is a pleasant compares to lyrica however I am using them as a combo small dose and good so far. Have no idea if its safe to do so and If i dont post within four weeks then Im probably dead
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Old 08-14-2010, 02:24 AM #29
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Quote:
Originally Posted by Mere View Post
I have tried Neurontin and Lyrica several times with bad effect. When I tried the Neurontin last time, I started at a dosage of 300 mg/day. I did not notice any improvement in my pain at that dosage - even after two months time. When it was upped to 900 mg per day, I did have some small relief in pain though the side effects were pitted edema and confusion/irritability. I noticed the confusion/irritability with the smaller dosage as well. The slight improvement in pain and pitted edema occurred rather quickly after the increased dosage - perhaps within one week. Therefore, it was discontinued. Hope this helps.

I have been successfully taking Savella, 50 mg bid for three months now. I hope it continues to work without fall off. I also take Lortab - 1-4 tabs per day for pain depending on my pain level. I do have several pain issues including the SFN, dysautonomia, FMS and undifferentiated AI/arthritis disease. The pain medicine helps me to maintain a more active lifestyle, although I am still on SSD (and wish I were not). I have been on Lortab for many years. Successfully, I might add, meaning: I have not required an escalation in dosage, my liver is still functioning well without an increase in liver enzymes, and I automatically take less of the drug if I am feeling better. I am sure that I am dependent on it, but not addicted. The same doctor has prescribed it to me all along.

Mere
First I heard of this. Does it work for P.N in the feet?

How Does Savella Work?
SNRIs such as Savella affect specific chemicals within the brain known as serotonin and norepinephrine. These are two of several chemicals used to send messages from one nerve cell to another.

As a message travels down a nerve, it causes the end of the cell to release serotonin or norepinephrine. The serotonin or norepinephrine enters the gap between the first nerve cell and the one next to it. When enough reaches the second nerve cell, it activates receptors on the cell, and the message continues on its way. The first cell then quickly absorbs any serotonin or norepinephrine that remains in the gap between the cells. This is called "reuptake."

Although Savella is an SNRI medication, it is not entirely clear how it works for fibromyalgia pain.
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Old 08-14-2010, 10:20 AM #30
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Quote:
Originally Posted by zorrro13 View Post
"I had a very bad experience on the Lyrica/Amitriptyline combo"

me too and it did this to me

neurontan for me is a pleasant compares to lyrica however I am using them as a combo small dose and good so far. Have no idea if its safe to do so and If i dont post within four weeks then Im probably dead
I'm glad you've found a combo that works!

You better post before FOUR weeks! If we don't hear from you within the first 48 hrs, you are considered 'missing in cyberspace'.......after the next couple of days, you'll be considered a possible cyber-foul play victim.....then we send our "Men in Black" aka (professional penquins) with the rest of the cyber search squad........it just wouldn't be good man.
Just post.
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