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Neurontin


Stace915

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I have an appointment with my hematologist tomorrow, he is now treating my EDS instead of a rheumi. I was going to mention Lyrica to him and see if he thought it would help with my pain. My pain is generally centralized in my legs but is so severe I have gone to the ER before and gets worse before my period. Thankfully I got my results back after 9 weeks of waiting and I am negative for Fabray disease, which is such a huge weight off my shoulders!! The only thing was in a way Fabray would have explained the pain in my legs and the bruising and I have been told there is a very specific pain medication for the Fabray pain, or what they call Fabry "crisis". So now I am back to assuming the pain is just from my EDS and the doctor had a good explanation of the bruising ie: the thinness of the skin, your legs have the most pressure all day etc... but now I am also back to trying to find something to reduce the pain. I have tried a ton of things from advil and aleve to narcotic pain meds and nothing provides any relief. I keep reading that Lyrica can have some really bad side effects but I saw a few people mentioned a drug called neurontin. I did a search and did not find a ton of info, does anyone take this for pain associated with EDS? Anyone know what the drug is actually intended for? Any common side effects? Just wondering if it is something worth discussing with the doctor tomorrow.

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One more thing... everything I did find about neurontin says that you should wear a medical bracelet stating that you are on an anti-seizure medication.. does anyone that takes it wear a bracelet? I am not understanding how an anti-seizure drug helps with pain?

I'm pretty sure you should wear that bracelet if you are taking neurontin because you have seizures. My mom and I have been on neurontin form small fiber neuropathy pain and neither of our prescribing physicians mentioned wearing a medicalert bracelet just because you're on the drug. But my mom does wear a bracelet because of the complex issues surrounding her cancer, should she become so ill she can't speak for herself.

Neurontin works by calming down certain areas of your nervous system. I took it last year for the burning skin pain. I was on a low dose, only 900mg a day, and it reduced my skin pain by about 30%. I quit because it caused severe constipation (I already struggle with that anyway). But now that I'm on meds to help my GI motility, I'm going to try it again but my neuro wants me to work up to 1800mg a day. Hopefully it will help my pain more effectively.

One thing about neurontin is that if you quit suddenly, it can cause seizures. You have to wean up to your dose slowly, and wean off slowly.

Neurontin is absorbed by certain receptors in the small intestine. Unlike lyrica, the absorption occurs on kind of a bell curve. When you're taking more than 2400mg a day, the receptors are pretty much saturated and you'll get a small increase in drug effect but most of the increased drug will actually pass through. Neurontin is cheaper than lyrica. Lyrica made my mom and I much more fuzzy-headed and our vision was fuzzy, and I gained weight on it.

Also, when I weaned off of neurontin I didn't have a rebound in my autonomic symptoms like I did when I was on lyrica. I have a hyperadrenergic reaction to my pooling, which I believe the neurontin calmed down somewhat.

Just my experience!

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I was on Neurontin many years as a migraine & seizure preventive. At that time I was taking anywhere from 3600-5600 mg daily depending on how bad my symptoms were. As my migraines became less I gradually came off the Neurontin per my dr's instructions.

I am taking it again but only as needed. I have never heard of anyone taking it this way but my dr approved for me to try & it works better for me this way. If I have burning legs, migraine, or just need it for rest then I take it same as you would an aspirin. I may have to take it for 3 or 4 days at a time. It's my understanding Neurontin & Lyrica are about the same. Neurontin has a lot less fillers & dyes than Lyrica & because of my allergies I chose Neurontin.

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Not sure about this but I think Neurontin may raise you blood pressure. My bp swings and goes high sometimes so I think that might be why my dr. put me on Lyrica. Let me know how you make out. I just started the lyrica yesterday- low dose 50mg 2 times a day .... and I had a pretty good day today.

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Wish you luck at your appointment.

I was on Neurontin (gabapentin) from 1995-2005. I slowly increased from a small dose at bedtime to eventually 900/1200/1500. It was prescribed for POTS as well as migraine preventative. Dr. Low at Mayo Rochester confirmed to my internist that large doses of neurotin were needed.

In 2005, I switched to Lyrica. My neurologist told me that Lyrica was a "cleaner" drug and that I would not need to keep increasing the dosages of Neurontin.

I gained weight from both.

Lyrica is really expensive while generic Neurontin - gabapentin - is available and prety cheap.

I also have fibromyalgia. I am not sure Lyrica makes a difference in that regard.

Lois

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I was on Neurontin because I was dx with epilepsy AND have liver damage. Neurontin is the easiest on the liver- of the anti seizure meds.

It was my understanding that it is a type of protein that blocks pain receptors somehow. I know its frequently used for peripheral neuropathy.

It takes about a week to acclimate to it. So if you feel punky in the beginning- that should wear off.

Turned out that my "seizures" were lack of blood to the brain, not epilepsy.

good luck

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I have taken neurontin since 2001 for nerve damage from Guillain Barre Syndrome. I couldn't live without it. I got pregnant a few years back and they told me I couldn't take it when pregnant....I thought I would go crazy. I was so sick and riddled with pain...I have to say neurontin works better than narcotics for me.

Good luck.

Erika

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Stace- just wanted to check in about the drug issue. I was worried about taking Lyrica- but so far so good. I think it takes a week or two to get used to the side effects- but last night I took it- did 15 min on my exercise bike, used some hand weights and stayed up until 10 watching the world series.

It also may be helping with my IBS- yesterday I did not have a problem at all (today a little).

Anyway i am hopeful that it will work for me- i don't know what would be best for you.

What did the doctor say? good luck kari

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The doctor actually said that he didn't think I would benefit from either drug. He said that he pain is all from EDS (we were waiting on results to see if anything else was causing it). He told me to start on 500mg a day of vitamin C, that sometimes people find a reduction of bruising when they take vitamin C. As for the pain, in the past I have been on skelakton, percaset, darvaset.... the list goes on and the only thing that helps at all is advil. He said that based on that he thinks advil/ibuprofen is going to be the only thing that gives me any sort of relief (it doesnt help much but it is something) so for every day he wants me to stick to the advil as long as I don't mind that I will have extra bruise... amd he wants me to start doing a combination therapy 8 days before I get my period and continue it all the way through my period of advil and then tylenol between the doses of advil but said its very important to start that combination therapy before they said to get excruciating due to PMS and to make sure I continue all the way through. I am going to try that for 3 months and then see him again.

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Stace- I was put on a birth control pill -and I am to only get my period every 3 months. I wonder if this would help you since you are worse around your period.

It might help - I was told by Mayo clinic that the Pill has to be monophasic and I don't take the inactive pills for the first three months.

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I was on Celebrex a couple of years ago for a hip injury. It's an NSAID, an anti-inflammatory and pain reliever that's particularly good for musculoskeletal pain. It was the only strong NSAID I could take without irritating my stomach. You have to have good kidney function to be on it. Just a thought since Advil helps you so much.

I do have to say that neurontin and lyrica did help my muscle and joint pain while I was on them, too. But I don't have EDS!

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alicia- thanks for the info. If i don't do well on lyrica I am going to ask about the drug you are on. i wonder if he chose lyrica because of some of the other drugs I am on.

Does neurontin help with your energy level?

Neurontin did not help with energy but made me more "sluggish". That is why I stopped taking it everyday. Good luck with Lyrica.

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