Neurontin?
 

Hi,

Much of Hooshmand's site was written a few years ago. Some of what he says turns out to still be worth looking at, but a lot isn't, as far as I'm concerned. I wouldn't take too much of his site to heart; better to find more recent research or articles. Much hasn't been updated to reflect the wider research that has been going on in the last 3-4 years.

Each to his own, as far as meds go; I take neurontin and it is enormously helpful. I looked at Hooshmand's site and it wasn't. Lots of questions, not too many real answers.

all the best :)

Hi,

Yes, in our links sticky at the top of the page, you'll find lots of good (and recent) info. In particular I'd recommend reading the Dutch Guidelines to CRPS Type1, which came out very recently - I've posted links to the sites there (the Netherlands are doing far more research into RSD/CRPS than anyone in the world). Also look for links posted by fmichael, Buckwheat, Sandel and IHH, among others, they always post interesting info.

BTW, the Hooshmand site is one that often gets pounced upon by people recently diagnosed with RSD - it seems at first glance to be a sea of information in a world of none; but just check out whatever you find there before you take his word as any kind of law ;) I don't think you'll find too many veteran RSDers quoting Hooshmand (er, he thinks amputation is a fad?? - see, he's such a bad writer, hard to see quite what he means half the time...)

As far as neurontin goes, we also have many people who have tried it and found that it didn't suit them at all. But it seems nowadays to be the doctors' first line of defense - most people take what their doctors prescibe, not what they've prescribed themselves. I feel fairly lucky that it does push the pain into the background, for me - makes life a bit easier for both me and my doctors.

I'm not based in the US, so know nothing about specialists there, sorry.

all the best :)

Ha! Well, you may get a few disagreements regarding that last question - if you look through the back posts you'll see little skirmishes breaking out occasionally :p

BTW - in that last Hooshmand puzzle: "What are the reasons for failure of treatment of RSD?" (then he says: or rather, which are the most dangerous RSD treatments? which I think is a completely different question....but anyway) that question implies that there are successful treatments for RSD.

Are there? If anyone knows the answer to *that* question, please post it here double-quick ;)

all the best.

DEFINETLY!! I'd love a cure!!! :D Then Kat's but would be kicked right out of the picture :P!

Anyway. I took gabapentin for about a year - no major difference on the pain scale and also made me put on weight. I was a US 6/8 (UK 10/12) before I got this... and with neurontin I gained weight to a point of being US 12/14/16 (UK 16/18/20). It has taken SO long to get the weight down and off again.

I have tried other things like Lyrica, Topomax etc - not sure they worked brill - (I was on large doses of MST etc at the same time).

About RSD specialists.. I don't think there is one. Everyone is individual in this disease and some drs specialise in some procedures which really help some RSDers but not others and vice versa- I guess it depends what you find helps. Some people are really helped from Surgery (SCS type things) or meds or psychological coping skills, or anesthetic stuff (drug pumps/ blocks) etc etc etc...

In 10 or 20 years time I'm sure they will have come up with many types of RSD and hopefully discovered the best symptom reduceer/ CURE for each type.

Love ya

Froggsy xxxxxxxxxxxxxxx

My uncle committed suicide on while on neurontin. My aunt is GREATLY OPPOSED to the use of Neurontin.

I was put on nortryptyline - that was a BAD experience.

This is a rant that is a bit off the Neurontin point...sorry in advance folks but must get this off my chest!
There is not ; in fact there is no difference. Both 'types' are the same thing. Being depressed "because of" something results in the same chemical imbalance as the "chemically depressed" depression.
Moods change the chemistry of our bodies.Additionally, serious health issues such as cancer, heart disease, surgeries, and neurological diseases (including RSD) trigger a cascade of chemical imbalances including "chemical" depression.
I think it's fine to criticize the use of Neurontin; for one thing, it is not primarily an anti-depressant at all, it is an anti-epileptic drug, now also used for neuropathic pain. Its off-label use for depression has been challenged, as well as some of the side effects. However, I recommend that a thoughtful dialogue about the utility of specific anti-depressants begin with an accurate understanding of the medical condition of depression itself.
One type of depression is no more 'blameworthy' than the other, nor more or less treatable by medication than the other type. As someone who has lived with depression for 20+ years, it is important to me that depression is accurately characterized within this support community.

I could be wrong, but it doesn't seem to me that Dr. Hooshmand says NOT to use neurontin. There are side effects for many (weight gain is what I mainly hear about), but for those who tolerate it, don't grow to have an intolerance, etc it can be quite helpful. There are adverse side effects for many, and it can be quite an overused drug. But just because it is overused doesn't mean that some RSDers haven't found it doesn't work. Every RSDer has tried different medications used for RSD. Some find this works, some find that works... seems like a lot of individuals are different as far as what medications work for them. RSDers shouldn't rule out neurontin won't work if they haven't tried it or they are only on a low dose. Sometimes adjusting the doses can help.

I have found that it, like Lyrica, helps with burning pain/ allodynia. I am sure there are many here who can state the opposite, but it shouldn't be ruled out 100% for those with RSD. It has proven to help with neuropathic pain. The only side effects I had were when I first started it- I was dizzy. That was all, and I guess I have almost always have seen benefit with it. I would hate to see what would happen if I stopped the neurontin. I still am in severe pain daily, but it would be extremely severe without it. -Not to say that I don't have ups and downs with it-- I do, and it seems like it's always that way.

Thanks for posting that link, Molly! That is one I was going to pull out for this thread.

Sending soft hugs each way! :hug: :hug:

what a great thread ... i am a neurontin user for about 8 years and cannot go off it without a lot of pain so for me, it works. that being said,
i believe with rsd that there are no drugs that work for everyone, there are no real expert doctors and that each of us just needs to keep trying to get what helps us individually.
ha! people don't even agree on what rsd is! we are in a mess. aren't we?

Neurotten :D didnt work for me at all, but doesnt mean it wont work for others.

On the old boards we had a topic going about Topamax, and how it made everything taste like ***. Now the Topamax worked for me, but had some things I couldnt handle after a year of being on it.

Things Topamax did that was good,
1. stopped the burn
2. weightloss
3. no groggy feeling

Things it did bad,
1. bladder stones
2. hair falling out
3. made things taste bad

After causing the stones a couple of times, I had to stop the Topamax. I also didnt like the hair falling out, but could have lived with it.

Now neurontin, that drug was evil to me. I fell more times than I can count, and had the brain fog so bad I couldnt drive at all. Plus I would swell up like a balloon! The brain fog, and falling was the reason the doc stopped it, and then put me on the Topamax.

There is good and bad from every drug, it is a matter of can you handle it or not. Everyones just a little bit different. :)