may i ask you which doc is suggesting this for you?

i will tell you, my friend sharon's daughter, who is in residency to become a psychiatrist at loma linda university, says that effexor is a "dirty" drug. i believe what is meant by that, is that it has lots of nasty side effects. there are much cleaner SSRI's out there... i know for example that what her parents take for their depressive issues is lexapro.

i personally have taken both effexor and lexapro... and have tried other SSRI's (zoloft, prozac, etc.), as well as cymbalta - which is in a class by itself (can't remember why offhand, but hopefully someone will chime in to tell us). i never had any luck with ANY of them, in terms of helping my depression.

but as i've posted here before, our beloved dr. jordan put me on namenda earlier this year as an off-label use, in the hope that it would treat some of the nerve pain i was having.

it didn't seem to do much for that. but i have to say, namenda has done more for my depression than any of the so-called anti-depressants i have ever taken, johanna. it is a drug originally developed for use on alzheimer's patients which somehow targets the NMDA receptors in the brain. anyone who has been in intractable pain for any length of time apparently has waaaaay too many of those suckers! dr. J. could certainly tell you more about specifically how it works, if you're interested - and i'd be happy to email you some materials gibb was kind enough to research for me as well.

i know exactly what you're talking about with those grief issues welling up like that at the doc's office. the same thing happens to me! it's why i detest initial office exams with a vengeance. i just hate going over my entire history with anybody, no matter how well-intentioned or what the purpose. i think it's because it forces me to focus on just how much the TOS monster- has robbed from my quality of life, and for how long. it's always a very unpleasant visit - on both sides of the exam table - for that very reason.

someone posted some excellent materials up in the stickies not too long ago about grief as it relates to injury and chronic illness - i think maybe it was hairdresser (thank you, hairdresser!), which you might want to check out. the loss of ability to work is HUGE, and something we need lots of help and support with.

more than just a pill - but that can help, too, don't get me wrong. i've shared with you before and i'm still working on this - trying to get my pain psychologist to form a support group for some of dr. J.'s TOS patients. this is one of the big reasons why, johanna. i know for me, this month marks the 5-year mark since i was taken out on disability from my job. i'm STILL grieving that loss; i knew that was the "kiss of death" - you can't go back once that happens in the industry i worked in, and i had fought like mad for years to not go out on disability, for that very reason.

but after samantha was taken, the fight went out of me. i was hospitalized within a month, for "pain control," and during the week i was in there my internist put the STD paperwork through - she could see what a mess i was and actually said to me she had never understood how i was able to work in so much pain. i did it because i feared losing my very identity. i was afraid of being alone with the pain. don't know if that makes any sense to you or to anybody else reading this. but i think that was my distorted thinking process - i undoubtedly did my body a ton of damage by continuing to work like a madwoman far beyond the onset of crippling TOS pain. go figure.

mind you, i didn't even have an accurate dx at that point! it would be 3 more long years before i found my way into dr. ahn's office, where he dx'd me clinically and on the spot with a severe and very longstanding case of true neurogenic TOS; bilateral for extra fun.

anger, denial, grief, rage, depression, feeling misunderstood, underappreciated, helpless, hopeless, scared about the future, etc.... so many emotions wrapped around this TOS beast. to my way of thinking we all could use help with first identifying what the feelings are, and then the healthy expression of those feelings in a safe and supportive environment.

friends and family, as we all know will try, at least at first, to understand - but there is really no way for them to "get it," and that becomes yet another frustration and another loss, as people you loved start to leave your life, one by one by one, over time. just how do you learn to live with this thing? and how do you live with a TOS'er? t'ain't easy, kidz... that much is clear.

support groups could be a vital piece of our TOS tx. it may be something we'd need to put together ourselves... with or without a trained pain shrink to run it, i think it would be awesome if LA county TOS'ers started a monthly meeting. my house is open to anyone interested in doing that (as long as you don't mind tumbleweed doghair, that is- and we could even rotate locations to make it easier for everyone. some meetings might even include significant others, there is so much about this that impacts them heavily.

A/D's are like any other pain med, i'm afraid. we each respond so differently to each one. i found effexor to be ineffective for me, and eventually the docs upped my dose to such a degree that it made me extremely jittery and anxious, which interfered with my already disturbed sleep cycle.

i switched back to lexapro at that point... but after realizing that namenda was having this wonderful, unanticipated benefit and lifting my long-term depression (and i DO mean long-term, ho!) - i titrated off of the lexapro and now take only the namenda for my depression.
and just for the record, i have been dx'd with major depressive disorder, ADD and PTSD - so not an easy nut to crack (pun intended).
to be clear, namenda IS also being rx'd by docs on an off-label basis to treat intractable depression, as well as nerve pain. it is just one example of several drugs out there, dr. J said, which basically act in the same way to reduce or somehow limit the number of NMDA receptors the pain brain produces.

what is most stiking to me is that i can actually think more clearly now than i have been able to in years. pretty amazing stuff. now if i can just remember not to BELIEVE everything i think, maybe i can stay out of trouble!!

but it does make you verbose and your posts become impossibly loooooooong. should be listed in the side effects.

hahaha

xo
alison
"Be Brave"