Anyone on it? It was suggested to me as an option, I am in possession of samples, trying to decide what to do...

supposed to help neuropathic pain and mood...(on label use is depression, as it is an SSRI, and I don't know much about them) after i totally lost if for the nth time in the doc's office when he asked me what my career was again... and when he queried me i said i was usually OK till someone asked me how I was doing

i have read some awful stuff about withdrawal, and a lot of people saying it made them feel "flat" but, i know that i could probably use some leveling, as I am a very up up or down down sort of person.

just wondered what anyone's experiences were. I did search for old threads and found a few things, but they weren't so directly related...

thanks

Johanna

My family doctor once gave me samples to try for stress. I took it once and had a terrible night. I had vivid nightnares, tossing and turning and was up all night. My heart raced and I was afraid of a heart attack. I threw them away. I had bad experiences with Neurontin also. I just take one or two Darvoset as needed. Sometimes a skelaton

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"

I got so depressed that I had to take something. It does become a matter of life or death sometimes. I was less than flat, I was under...

I've taken Wellbutrin - no side effects at all. Felt like a good night's sleep. Takes a month to work.

Cymbalta - which is supposed to heal the nerves, also help sleep, seemed to gain weight and stop any sex drive - which was gone anyways due to TOS headaches / spasms...takes about 3 weeks to a month to work.

What I know about most antidepressants is that they take a month to build up in your system. During that time you may have headaches, stomach aches and some flu-like symptoms (mild compared to what we deal with) and then upon day 30 they basically vanish and the drug becomes therapeutic. That's not a scientific statement, that's my OWN personal experience and that of my family members.

Antidepressants - generally - can NOT be taken "once" for a day or so...again, it's the level in the blood that must be meant for any effect on your system. (Unlike Xanax or our pain meds.)

And, you can't just quit them. You have to cut them down over a month's period also...

Other people here take Lexipro. Paxil and Zoloft both create weight gain eventually (after six months according to statistics) but help with sleep. Prozac can initially cause a loss of appetite, and is not recommended for anorexics...and I feel after 9 months it just stops working. (Personal opinions mixed in again.) Hope this is helpful, and not meant to offend anyone else's experiences. Each bod is different!!!

I've been taking Effexor for few years now. Previous to that I was on Paxil and it wasn't working, plus I gained weight and that just adds more to the depression and anxiety issues.

Since it helps with nerve pain this could be why I don't take pain meds or muscle relaxers. My journey started in 1999 so I was on Paxil a couple years and then effexor. I just found about this TOS thing with in the last year so the bonus is I never knew it helped nerve pain because that wasn't why I was taking it but I sure do appreciate the benefits now. It took a while to take affect but what a differrence. On paxil I still felt like I was PMS'N the entire time and I was still spinning like a top.

I am now on nortriptyline and not the elavil (amitriptyline)
I have been depressed ticked off in grief and all around p/o'd at all life!!! No laughing and no fun just p/o'd.....so now I have had my nortriptyline increase a huge amount....it is a cleaner ssri. elavil breaks down to a couple of things...one of them nortriptylne....so the elavil has too much stuff in it and the other 'stuff' causes the side effects....

I still belive Alison and want to get my swollen hand on some namemda...should we do a drug exchange at the meeting???? lol.....ok for those who take things literally that was a JOKE!!!!! I am laughing and smiling on this side of my computer...... I am a nurse after all !!!!!!!!

my doc won't add more meds to the mix for the interaction issue.....on so many as it is now....

love and hugs,
Victoria

Hi Johanna.....I am in the midst of getting off of effexor. I have been on it for a few years. I started taking it to calm my anxiety while I worked with a councellor to help me deal with it...I guess I really went on it to protect my sobriety.....I had issues to deal with and the anxiety and panic were getting bad...enter effexor. It did help my anxiety but I really want to learn to deal with my anxiety on my own so I am trying to get off of it. The side effects of the withdrawl are horrendous...for me. I have went thru alcohol withdrawl and that was the hardest, most painful thing I have ever done....both physically, emotionally, and spiritually.......effexor withdrawl gives alcohol withdrawl a real run for its money. My side effects range from sleeplessness to hearing strange noises in my head.....it drives me crazy! Emotionally I am all over the place if I forget my pill. I have weaned down to 2/3rds of my biggest dose and will be weaning off still but SLOWLY! If I do not forget to take the pill that I do still take, I am OK....at first it was hard and I needed to reassure myself that I would be feeling a little more anxious than usual for a while but after a week or so those effects faded out. My hubby is just starting effexor. The intent is to keep him on it permanently....I beleive it will help him as his issues are different than mine. Take the time to really think and talk with your Doc more....it is a very strong med, but may be able to help you....It is worth looking further into, I think. Good Luck.

i tried Effexor unsuccessfully a some years back. it was nicknamed Side-Effexor due to the many and likelihood of side effects. I then tried Remeron, a drug I was told by a pain specialist that was used widely for chronic pain conditions. I think that it is a much new drug that the other. you may want to inquire about that one. i took it for awhile but i had the side effect of sleepiness and had a hard time getting up at a reasonable hour so i ultimately gave it up.

Be careful on starting any new drug..see my last thread..side effects can occur from mixing pain meds and anti depressants...that up and down feeling can be one of them just from anti seizure and pain meds...make sure this doctor understands every drug your on and call your pharmacist first, tell them you were given samples and what your taking now...then and only then start a new drug...

On a personal note my mom was given effexor for depression after her hysterectomy...she had a bad reaction...many gynos love to give you anti depressants instead of hormone therapy when your going through the change...

Thanks everyone...the doc who gave it to me IS familiar with me and everything I am on, and all my issues He speicifically mentioned that it was a good choice becuase it woudl not interact with anything I was taking.

For better or worse, I have tried it...and in this first 48 hours If eel really great- within about 6-8 hours of taking the first pill I am super calm and relaxed and so much less pain that i have immediately cut my regular pain meds in half. Is this better than them? Well, good question. I don't know that any of us coudl really answer that. Is depression a problem for me? Well, not a really significant one, but maybe a littel and i DO need pain relief, so I guess it is worth a try.

I may really be opening a pandora's box re: the side effects...i have only been on pretty much straight narcotics up to now, and had just sampled a muscle relaxer a bit, so somethign more complicated than that is a big step for me. Anyone know if you can knock out the side effects of withdrawal with anything (narcotics?)

Please keep any comments that you have coming, i really really appreciate it. and the PM's too. You guys are really awesome