[theoneRogue420]

I have a comment that I hope won't upset anyone. I'm sure it will, though, and am prepared for the consequences, lol.

I hear about Neurontin in here constantly, and I also see quite a few comments and/or quotes regarding Dr. Hooshmand as well. This strikes me as odd, concerning his feelings about Neurontin. He calls it "the most overused medication in RSD"! Here is the link, it's rsd puzzle #95

http://www.rsdrx.com/rsdpuz4.0/puz_95.htm

It's also mentioned here, puzzle #78, section 11

http://www.rsdrx.com/rsdpuz4.0/puz_78.htm


I don't take Neurontin... they gave it to me back in the 1st or 2nd year of my rsd, and the effect it had on my serotonin levels was awful. Neurontin is a bad idea for anyone who doesn't have a chemical depression issue... and being depressed over rsd is not the same thing at all. There is a huge difference between being chemically depressed and being depressed because of serious health issues.

Hooshmand recommends Tegretol or Klonopin instead. I don't take ANY meds that affect my serotonin levels, myself. I have enough troubles without adding to them, lol.

I'm not suggesting anyone go off their meds, of course. I just wanted to give you all something to think about.

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

[theoneRogue420]

Thanks, Artist... I love having open & frank discussions Any newer specialists I ought to check out? Back in the beginning of my rsd, I saw the "leading specialist in rsd", and at the time it was Dr. Gabor Racz at Texas Tech in Lubbock, so I know how things change rapidly.

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

[theoneRogue420]

Thanks Artist. I did read the Dutch Guidelines, I quite liked it, had plenty of useful data.

But this whole subject brings up an interesting point... who IS the leading expert these days? And how does one come to be considered it? I have always wondered that, on any subject, not just rsd, lol.

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

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.

[frogga]

DEFINETLY!! I'd love a cure!!! 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

[junk4myemail]

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.

[mollymcn]

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

a huge difference between being chemically depressed and being depressed because of serious health issues.

; 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.

[theoneRogue420]

Molly,

I see no reason why we can't agree to disagree. I didn't "invent" what I said... I heard it many times over many years from both psychiatrists and psychologists. My oldest son has serious issues with depression, to the point of hospitalization at age 12. I diligently studied the subject, through both text books and doctors.

Junk,

I am so sorry to hear about your uncle, as well as your own bad experiences. I know what you mean, these same meds have the same negative impact on me. I was just lucky enough to have a close friend on hand to help me through the side effects and keep me from doing anything rash. My husband was in the Navy and out on WestPac, so it could have turned out very differently.