Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 03-20-2009, 07:21 PM #11
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Not specifically about the side effects of Neurontin as it was usually the least of my complaints and it did give me some much needed relief.

I have found that anxiety, depression and insomnia without the proper medication, being painfully exhausted to the point that it would hurt to breathe 24/7 for years can also mess with you some at times but I'm aware of my being and can recall it if I have to or may need prompted by something, but continual dosing of Neurontin just guarantees all those side effects for me and I'm not always aware. I can't say that I've had that experience as a result of anything else I've encountered.



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Originally Posted by sabimax View Post
been on neurontin now for 6months or more, for neuropathy though, and no side effects and works well. I used to have numbness in my body with severe tingling painful pins needles tingling. Neurontin has kept that away. NO side effects for me so far so good.

Now broken wings, just curious, if you talk over those side effects with your dr, and if you ever get that stuff without neurontin. Sounds a lot like my other symptoms, just wondered as I have cogfog memory stuff, other stuff you mention but all for many years without neurontin. Just hoping that those are only from the meds for you, and hoping if they are new symptoms of something else you are aware they might be not from the meds.

hugss all and good luck whatever all decide to use for sx relief...sarah
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Old 03-21-2009, 04:26 PM #12
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...put it this way, and then he let me decide what I wanted to do:

Nerves can sometimes be "turned on," like a light bulb. We can injure them and turn them on. Usually, they turn off on their own and stop bugging us. Sometimes they need help to turn off.

Neurontin works by turning off the nerves.

The reason your whole body goes whacky is because neurontin is not selective. It basically turns every nerve off in your body.

......

Anyhow, I knew where he was heading with this, and I asked him... "So, every time I raise my arms and compress the nerve, I'm basically turning it on?"

And he said, "Yes."

And I said, "So, what good is Neurontin going to do for me if I'm just going to keep turning the nerve on, anyway?"

....

And I put two and two together and realized for myself that this is why many of us end up maxing out on Neurontin and still having symptoms.

And I figured, I'd rather have my brain working and my body in pain, than have neither of them working.
~ Jenny
Well put Jenny!!! Perfect layman's terms. A++
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Old 03-26-2009, 02:02 PM #13
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Default good experience

I have been on lyrica as a new drug...when it came out in Canada and it gave me inorgasmia as a side effect....NOT willing to live with that one!!

I have been neurontin for about 5 years now. I have no problems with side effects except the memory issues....I loose words and bits of conversations...etc......I am not dopey I am used to the drug and went up gradually. I find it helpful and know it works for me as I decided to try to come off it slowly and found that my nerve pain increased rapidly. I was not happy living with that pain so stayed on the medication. I am on 800 four times a day so MAX dose...well max is 3600 I am on 3200mg a day.

best of luck
love and hugs,
Victoria
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Old 03-27-2009, 02:18 AM #14
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Total brain fog and fatigue

And.........now I'm diabetic...thank you Neurontin !


But the pain would be worse without it

I skip my nighttime dose if I am going to have a cocktail. Massive hangover even if I have one glass of wine (and I like more than one glass ! )
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Old 03-31-2009, 07:28 PM #15
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i took neurontin in the fall of 2006, and remember it made me feel, well, dumb.

and Finz, you're right.... just one glass of wine/beer/whatever won't happen, since EVERYHING says "dont drink, blah blah." so i just have a beer or 3 once in a blue moon.
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Old 03-31-2009, 11:50 PM #16
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Finz, so neurontin made you get diabetes?? is that what you mean, is that proven. I am curious?

so far no side effects here at all, just great for the nerve pain, I took nerve tingling pain in my face and body for 9 years, anytime humid day or heated... and I could not handle it anymore. so worth it so far, but curious about what you meant by diabetes?? hugss,sarah
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Old 04-08-2009, 12:44 PM #17
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Thumbs up Hi, new here, but wanted to add my experiences...

Hi,
I was referred here by a new friend who also has TOS. I have been on Neurontin for about 4 years now. The only side effect I've had is the brain fog, but compared to the pain, burning, pins and needles, and strangling feelings I was experiencing, it's worth it!!

I tried Topamax, and it did nothing, ditto with Lyrica, and Elavil.

Broken wings, I am confused. I was told Neurontin was to be taken continually to be effective, not the way you might take a norco or vicoden. Also, I was told if you went off of it too quickly, you could experience seizures! Did you Dr. actually rx the Neurontin that way? It kind of concerns me I've been told one thing and you've been told another.

Maddy
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Old 04-08-2009, 05:06 PM #18
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Default neurontin

I have been on neu/gabapentin for about 10 years,now it is not doing the job and I must go on to something new. I wonder what My neuro will suggest. These two meds served Me quite well and I wonder how I could have gotten along without them.Side effects were present,but could live with them.

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Old 04-11-2009, 12:32 AM #19
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Quote:
Originally Posted by sabimax View Post
Finz, so neurontin made you get diabetes?? is that what you mean, is that proven. I am curious?

so far no side effects here at all, just great for the nerve pain, I took nerve tingling pain in my face and body for 9 years, anytime humid day or heated... and I could not handle it anymore. so worth it so far, but curious about what you meant by diabetes?? hugss,sarah

It is proven to increase your blood sugar levels.

To be frank, I'm fat and could have been going to be diabetic anyway. My mom is also overweight and was dx'd with adult onset diabetes about a year before I was. Because of my weight, I figured that it might be in my future........you know, in 28 more years when I would be my mom's age at onset, not now. So because Neurontin can increase your blood sugar levels, I "blame" the Neurontin for me getting diabetes too early. I have weaned on and off the Neurontin several times over the years...too make sure it's still working and when I was going to try Lyrica instead (then insurance wouldn't pay for Lyrica). My blood sugars go back to normal range without my Melatonin (diabetes pill) when I'm not taking Neurontin.


Oh.....one thing I forgot to write earlier... Neurontin decreases the effectiveness of Hydrocodone (Vicodin), so I try to seperate my doses, but still I think it would be better to be on a different narcotic for pain if you are taking Neurontin
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Old 04-12-2009, 09:03 AM #20
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Originally Posted by MaddyB View Post
Hi,

Broken wings, I am confused. I was told Neurontin was to be taken continually to be effective, not the way you might take a norco or vicoden. Also, I was told if you went off of it too quickly, you could experience seizures! Did you Dr. actually rx the Neurontin that way? It kind of concerns me I've been told one thing and you've been told another.

Maddy


Good point you make there, Maddy

No, no doctor Rx'ed it that way. My doctors were very conflicting about Neurontin and Ativan. I haven't been to a doc in over a year now.

I can't work on Neurontin. I'm a stenographer and I can't be slowed down by a drug. I have to be able to think quickly. I need the opposite effect. However, it did help my symptoms. I never found a doctor, even those prescribing it, who really liked it for neuropatic pain. It is for seizures. I refused it for years because of that. No I've not had seizures because of the sporadic administering of Neurontin, but I know that's a risk. I understand you're even supposed to wear a MEDIC ALERT if you're on Neurontin.

I would take it on a Fri, Sat and recover on Sun and be ready to go on Mon... would pack on more pain as the week went on. It's just a drug I can't take and work at my job. Do better handling the pain and other problems from injuries. Certainly wasn't easy either way.

You have to do what you have to do to get by. No easy fixes here.
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