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Dr. Bob is Robert Hsiung, MD,
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Posted by katekite on May 26, 2002, at 20:45:08
In reply to Re: if I'd known then what I know now...., posted by kpo2002 on May 26, 2002, at 17:30:08
how long were you on it before it became a problem?
I was misdiagnosed BP II. I took neurontin for about 5 weeks before developing paresthesia (a burning sensation in my legs). Since I hadn't just started the drug, no one recommended stopping it -- in fact, they recommended taking additional ones (depakote, lamictal, gabatril). It made it worse. 6 weeks later, legs still burning, I got fed up and stopped everything. 24 hrs later the problem was gone. However, now every time I take any kind of sedating drug the problem returns.
No one can say yes or no whether it was the drug. It may simply have been an underlying problem that was un-masked, like MS. I will always wonder.
And, it turns out, I have ADD only (and a history of major depression). My depression and anxiety are most likely related to the frustration of living with ADD undiagnosed for 30 years. Adderall or ritalin make my life completely different, much more normal. Had I been properly evaluated it could have been found 10 years ago, 6 years ago, 4 years ago, 2 years ago, 1 year ago (the times I switched psychiatrists). All of them missed it because none of them actually evaluated me, they only asked what I thought was wrong -- and I said I felt frustrated, depressed, scared of social situations..... As soon as I presented a problem they medicated it. Rather than trying to find a cause for any of it.
So misdiagnosis can lead to serious consequences.
Only since the words MS, lupus and myasthenia came to me as possibilities, have I looked at the risks of these drugs. I always had assumed risks would be allergy (you either die or are fine, you just don't take it again) or problems that would stop when the drug was stopped (lethargy, nausea, etc). But risks can involve sensitivites that cross over to other medications or to your own organs.... or as in multiple chemical sensitivities to anything containing methyl groups or whatever it is for each individual person who develops a sensitivity.
So hopefully someone will read this thread who was leaning towards just swallowing the pills although they aren't quite sure of their diagnosis: maybe they really should do that complete psychological workup someone once recommended.
kate
Posted by JonW on May 27, 2002, at 7:53:36
In reply to if I'd known then what I know now...., posted by katekite on May 25, 2002, at 10:14:57
> Don't take drugs without a well proven diagnosis unless you're suicidal or risking harming others. Don't agree to a diagnosis because you want a diagnosis, agree to a diagnosis because it fits completely what you are. Try not to let wanting to please anyone or depression or anything else interfere with rationally assessing a diagnosis to see if it fits you.
Hi kate,
I agree and couldn't have said it better myself! I know that when I do research on the internet the symptoms I report to my doctor are sometimes colored by that. I go out of my way to try to be objective as possible, and remind my doctors that I've been looking up things on my own again. I think we all want to be diagnosed so badly because it means we're that much closer to a cure ("so that's why I'm still not better..."), or at the very least it makes us feel like we belong.
Jon
Posted by zach on May 27, 2002, at 11:49:20
In reply to Re: 4 Wks off Effexor-/joint pain » Janie, posted by Lynn V on March 17, 2001, at 22:51:46
Wow! Well... I've been on Effexor XR for nearly one year. It has helped significantly decrease the level as well as the frequency of my depressive episodes. I am concerned (very much so) about the joing pains. From the beginning I have noticed a tightening of the jaw muscles. I had to get a mouth guard for when I sleep. I also wake up most mornings with sore muscles in my forearms, which I presume is from clenching my hands. I did not have either of these problems before one year ago. Recently, I was diagnosed with tendonitis of the wrists as well as arthritis of the knees. I take aspirin, and it helps but does not cure. I am 27 years old, and a professional musician. I also am a competing martial arts practitioner. If I knew for certain that there was a corrolation between joint pain and Effexor XR I would have to rethink my decision to take it. I started Effexor as a response to the sexual side-effects of Celexa. By the way, I also have been diagnosed with prostatitis. It has also crossed my mind that Bactrim could be causing or agrivating joint pains. I can't help wondering what the relationship between the medications and the physical ailments is. I did bloodwork to test for Reiter's syndrome. My HLAB-27 was positive. Remember, I am only 27, and in excellent shape. I stretch daily before and usually after I excercise. If anyone has any information for me please email me at zachburd@yahoo.com. This is my personal spam-free email address. Please respect this, and keep me off all lists. Thank you. -Zach
Posted by katekite on May 27, 2002, at 11:49:26
In reply to Re: if I'd known then what I know now.... » katekite, posted by JonW on May 27, 2002, at 7:53:36
Hi Jon,
I wanted to have a diagnosis. I wanted to understand why depression didn't explain how hard life was and had always been. Post diagnosis there was infinite support available on the net. I told my parents and they stopped asking, finally, when was I going to get a job. They started asking if I was happy. All of that seemed so right at the time even though, for me, it was the wrong diagnosis.
I probably would still be on mood stabilizers if not for having to switch psychiatrists because the one I liked (because he was nice and friendly and sweet and returned my calls immediately) stopped private practice. The new one said he didn't know if he liked my diagnosis. By this point I was physically ill and he couldn't diagnose anything with someone physically ill. Eventually went off mood stabilizers and felt more normal. Stayed off everything for 3 months. Realized I had been actually worse on mood stabilizers than with nothing. Then started the hunt for the right diagnosis.
This time did lots of tests with me OFF meds. Correct diagnosis eventually resulted.
Advice: if you don't really understand your diagnoses do three things. One, think back to what you were like as a kid, then research what all these disorders look like in kids (include everything, aspergers and autism and learning disabilities, bipolar and personality disorders, separation anxiety, ODD, etc). What was your personality most like?
Secondly, talk it over with a doc, and aim to reduce your meds to the minimum that allows you to function and not be depressed or otherwise irrational, then take the MMPI and any other suitable tests to make sure nothing is being missed. Have a good friend evaluate you on a bunch of internet quizzes: we see ourselves differently than others.
Thirdly, get more than a normal medical workup: thyroid and regular bloodwork is the minimum, but early Cushing's, early Addison's, CFS, migraines (which don't even have to be headaches), etc could all contribute to mental problems. Why not find out? Do it all at least once in your life. Get an EEG. Get an MRI. If you can convince a doctor to do it it is most likely a good test for you. Don't get false hopes up, just decide to rule out everything physical.
Don't do what I did: don't get a diagnosis because you need one. Get a diagnosis (or two) that explains you completely.
kate
Posted by supergirl on May 27, 2002, at 13:51:48
In reply to Re: 4 Wks off Effexor-/joint pain, posted by zach on May 27, 2002, at 11:49:20
Since being on Effexor, I have been diagnosed with carpel tunnel and tendenitis in each wrist. I also have experience joint, back, pelvic, and muscle pain. My body sometimes feels like it has aged 40 years. I am only 22 and I sometimes can't do normal things because of the pain or stiffness. The only physical problem I had before I started taking effexor was arthritis in my knee. It seems that no matter how good of shape I'm in, I still hurt, even just to sit and stand. I recently had my back x-rayed and it was fine, and I've had bloodwork done that was normal. Is this related to Effexor? Where does this pain come from?
supergirl
Posted by Beauty on May 27, 2002, at 14:34:41
In reply to Anyone had success on Effexor XR? , posted by jp on October 24, 1999, at 14:59:14
Hi all, I just started taking Effexor XR 37.5 in the a.m. with food, with a sample my Dr. gave me. I've been taking Wellbutrin 150sr once a day for about 6 mos, and prior to that had been prescribed Elavil for several months for spastic colon. Have gained A LOT of weight in the last year on those regimes. Dr. made no mention of withdrawel side effects from Effexor, and I segued from Wellbutrin overnight. This is day 2, with no noticeable side affects other than the usual hard-to-go-to-sleep issue, which the Dr. had previously prescibed low dosage (and I split into 1/4s, so basically 12.5mg - almost placebo) trazadone, which did help a lot, but knocked me out so much, even at that low dosage, that I had a hard time swimming to the surface of consciousness in the morning, after taking it at night before bed. I finally discontinued the trazadone, but took it last night to get to sleep. Should I continue the Effexor, or call my MD and ask him about the potential side effects of withdrawel? I'm hoping this depression will resolve itself over time combined with therapy, but the weight gain isn't helping matters at all! Any suggestions? Thanks!
Posted by kpo2002 on May 27, 2002, at 20:14:29
In reply to wanting to have a diagnosis, posted by katekite on May 27, 2002, at 11:49:26
Some good advice here, better than you would get at most doctors. I agree that you have to research yourself very well to get a diagnosis, but in reality you probably have characteristics in more than one disorder so you wouldn't know what meds to take and in the end you are trying one thing after another. Looking into your past is so very helpful because what appears to be the symptoms may actually be a functional crutch to get you through life and may actually be masking the real problem. I was bulimic for 20 years because I could not get my parent's love and affection. Once I quit trying to get what was the impossible and told them off to no end (especially my father) I was able to get stabilized and off meds. They say depression is anger turned inwards. It took me 20 years to get up the guts and courage to tell my parents to fuck off! (whole new set of problems now, but at least I'm not a slave to the refrigerator and the toilet anymore) I found it most helpful to read books on personality (like 10 chapters, one devoted each to a different theory) and especially Existential Phenomenology. I have a degree in Psychology from Duquesne University in Pittsburgh, Pennsylvania and they have a different course of study. The personality class was at Chatham. When no one could fix me I fixed myself. So here we are fixing ourselves...
Posted by sid on May 27, 2002, at 21:26:55
In reply to New to Effexor XR - Do I want to continue?, posted by Beauty on May 27, 2002, at 14:34:41
It's too early to say I think. What if that's THE drug that permits you to finally heal? Give it a chance.
For withdrawal: Benadryl has been mentioned, as well as good old Prozac. You should talk to your doctor about it, to reassure yourself, but you should probably not switch drug in fear of what may or may not happen (not everybody suffers these effects) when you taper off. Just my opinion.
I've been on Effexor XR myseld, at 75mg per day, for 6 months today (Yippiii !), and I feel very good. I had not since I was 13, that's 21 years ago. I had dysthymia all this time, without knowing it, and I later developped a major depression. That's when I learned I had been dysthymic for years. Therapy has been good for me, mostly CBT, and acupuncture as well. I did fear the side effects of coming off of Effexor XR at the beginning, but now I think that I'll cross that bridge when I get to it. For now, the drug has made me remember what it's like to be alive, that's already darn good.- sid
Posted by supergirl on May 28, 2002, at 0:32:39
In reply to Re: New to Effexor XR - Do I want to continue? » Beauty, posted by sid on May 27, 2002, at 21:26:55
I am now taking prozac to get off of Effexor after being stuck on 75 mg. It seems to be helping. Scientifically it makes sense, too, it also is an SSRI. Effexor has a very short half life, which means it gets out of your system faster, which means if you have been on it long enough, you could go through withdrawal. Prozac has a half life a lot longer than Effexor, so it stays in your body longer, and therefore not usually as dificult to get off of. That is one of the things the makers of Effexor suggest to avoid withdrawal symptoms.
Posted by Allen F. on May 28, 2002, at 0:41:20
In reply to Re: New to Effexor XR - Do I want to continue?, posted by supergirl on May 28, 2002, at 0:32:39
What is the half-life of Effexor and Prozac? How much Prozac are you talking? Do you find it makes you nervous, sleepless, or affects you in other ways?
Thanks.
Posted by supergirl on May 28, 2002, at 3:09:42
In reply to Re: New to Effexor XR - Do I want to continue?, posted by Allen F. on May 28, 2002, at 0:41:20
I am only on 10 mg of Prozac, but I can up it or stop if I need to. I have noticed that I am a lot more energetic, sometimes too much, and it gives me a headache. The worst things that I'm experiencing from Prozac is forgetfullness and it sometimes feels that... and this is hard to explain without it seeming that its a hallucination, but I will sometimes swear that there is someone standing or sitting in a particular spot even though there is no one there.
I am not sure exactly what the half-lives are, I haven't come across the numbers.
supergirl
> What is the half-life of Effexor and Prozac? How much Prozac are you talking? Do you find it makes you nervous, sleepless, or affects you in other ways?
>
> Thanks.
Posted by sly on May 28, 2002, at 8:13:43
In reply to Anyone had success on Effexor XR? , posted by jp on October 24, 1999, at 14:59:14
I've been on Effexor for 5 weeks now and I'm happy to say the fog is starting to lift a little, yesterday I had my first good day in a long time. However, I am finding my lack of energy troubling.
I started taking Effexor at 6pm but it made my insomnia worse than ever! I switched to 2pm and my sleeping is definitely improving, I can actually fall asleep now and when I wake up in the middle of the night I can fall back asleep again no problem, this is a huge improvement for me. The problem is, I get tired much earlier, anytime around 4-5 pm I start feeling sleepy, by 8pm I'm completely exhausted and can't wait to crawl into bed. I'm afraid to move my meds up any earlier for fear I'll fall asleep at my desk (I'm having enough problems at work).
Does anyone have any suggestions?
Posted by kickink on May 28, 2002, at 13:49:06
In reply to Re: New to Effexor XR - Do I want to continue?, posted by supergirl on May 28, 2002, at 0:32:39
> I am now taking prozac to get off of Effexor after being stuck on 75 mg. It seems to be helping. Scientifically it makes sense, too, it also is an SSRI. Effexor has a very short half life, which means it gets out of your system faster, which means if you have been on it long enough, you could go through withdrawal. Prozac has a half life a lot longer than Effexor, so it stays in your body longer, and therefore not usually as dificult to get off of. That is one of the things the makers of Effexor suggest to avoid withdrawal symptoms.
I also am on Prozac now. I HAD to take it due to the HoRRENDOUS withdrawal, head buzzing, zings, severe mood swings, just to name a few. I WARN everyone to stay AWAY from Effexor unless it is your last resort. Once you get on, ity's hard to get off.
Posted by DJT on May 28, 2002, at 15:32:36
In reply to Re: Please help! » gare, posted by Sherrie on May 14, 2002, at 20:55:03
Hi all
Just started taking effexor XR, 37.5 mg once a day. Doc says 37.5 for three days, 75 for the next three, and, uh, 112.5 after that and then we'll see.
I'm on day three. So far the side effects are heavy drowsiness, feeling overly cold or hot, difficulty ejaculating (but not becoming erect), a little nausea (but I already have irritable bowel syndrome), anything painful seems intensified, unrestful sleep, some panic, dry mouth, and absolutely no appetite. In the last week, I've lost five pounds, which is kind of scary because I'm only 130 right now.
My psychiatrist says 90% of people who take effexor have no lasting side effects, and websites I have read (check medscape.com - it's really good) say only 19% of people stop taking it because of side effects. So why is it that there are so many negative comments on this board? Is it because many of you are more difficult cases than average?
I only ask this because almost everything else I have read was positive and made me feel less anxious about taking effexor. Then I get to this board and most people seem to not like it much.
I have to say typing this up makes me feel better somehow... like sharing, I guess!
Posted by renelso1 on May 28, 2002, at 16:04:52
In reply to just started, posted by DJT on May 28, 2002, at 15:32:36
I know, this board does seem negative, but mostly it is the withdrawal, not the actual side effects. I've been on effexor for 5 weeks now (150mg) and i don't know that i have any side effects remaining except maybe constipation (which is great for me anyhow since i have IBS). the first week was horrid. i felt like i had the flu and everything hurt. after that things gradually improved. After you have been on it for a few weeks i would recommend adjusting the time of day you take it - that seemed to really help with my sleep. don't give up! and remember, everyone is different. and also, people aren't as urged to write if things are going well. it's a lot easier to jump online and complain cos that's when people are thinking about it. i don't know. anyhow, good luck!!
rox.
Posted by JANNBEAU on May 28, 2002, at 16:25:09
In reply to Re: New to Effexor XR - Do I want to continue?, posted by Allen F. on May 28, 2002, at 0:41:20
> What is the half-life of Effexor and Prozac?
>
> Thanks.Allen, found the following, along with other info at:
http://www.socialaudit.org.uk/330withd.htm
This is a UK site, so references NHS, etc.
Generic Name Brand Name Half-lifeFluvoxamine: Faverin/Luvox) 17-22 hours
Fluoxetine Prozac 4-16 days
Sertraline Zoloft 22-36 hours
Paroxetine Paxil 21 hours, variable
Venlafaxine Effexor 5-11 hours
Citalopram Cipramil 1.5 days
Nefazodone Serzone Up to 24 hoursHope this is helpful to you.
Jannbeau
Posted by DJT on May 28, 2002, at 16:29:01
In reply to Re: just started, posted by renelso1 on May 28, 2002, at 16:04:52
Rox... any improvement in your IBS with the effexor other than less constipation? My stomach/intestines are all "bubbly" - do you take anything for the IBS, even over the counter?
Posted by kpo 2002 on May 28, 2002, at 21:33:04
In reply to Re: Effexor XR cold turkey, posted by ZeKingPrawn on January 5, 2002, at 17:33:57
I cold turkeyed off effexor xr with no withdrawal symptoms whatsoever, however I was on a very low dose, 37.5, and I had only been on it for 7 weeks.
Posted by kpo 2002 on May 28, 2002, at 22:34:42
In reply to Re: Recovered and Happy! No More Drugs for Me!! , posted by Dolphin on January 5, 2002, at 20:03:38
I cannot believe all the psycho-babble going on about Body Balance and Life Force. For one, she never put it out there until someone asked. So someone wanted the information, it was just there for everyone to read. Two, if she was just in it to "get free goodies", then it must be good for her or why else would she try to get more of it, and Three, you have a lot of nerve saying that a "sucker is born every minute" and it will only work like the placebo effect, blah blah--When you feel like shit and something makes you feel better-Who cares if it the placebo-effect or not? And then to talk about how frightening it is to take some questionable "natural substance" with "who knows what" ingredients are in it--that is the most bizarre statement of them all seeing that everyone posting on this site is taking extremely weird and unpredictable psychoactive compounds and many of you have taken many, many drugs over many, many years. Just because a doctor prescribes it doesn't make it any less dangerous. As I taught my little son from the age of 2 or 3 years old--ALL DRUGS ARE DANGEROUS DRUGS.
Posted by The New Ray on May 28, 2002, at 23:16:50
In reply to Anyone had success on Effexor XR? , posted by jp on October 24, 1999, at 14:59:14
I have been on Effexor XR for about a year, maybe two. I do not recall any problems in starting, but I do get a dry mouth some times. I am taking 300mg once a day, along with 50mg of Elivil when going to bed, plus 20mg doses of ritalin four times a day (~every 3 hours). My depression has really gone down, and when I start going there, I can turn it around much more easily. My whole life has changed since being diagnosed with the ADHD and depression. The meds have given me a new life to live, and I was not discovered until I was 54!
Do Not Give Up, you have to work with YOUR life, it is the only one you get.
(PS, I do not recall a post with so many entries, and over such a long period of time. WOW)
Posted by supergirl on May 28, 2002, at 23:48:27
In reply to Re: New to Effexor XR - Do I want to continue?, posted by JANNBEAU on May 28, 2002, at 16:25:09
Thanks for the info. Interesting to see that Effexor by far has the shortest half-life of the bunch. Stay on it, kids, until you consult your docs. Chemicals leaving your body so quickly is not a nice thing to do.
supergirl
> http://www.socialaudit.org.uk/330withd.htm
>
> This is a UK site, so references NHS, etc.
>
>
> Generic Name Brand Name Half-life
>
> Fluvoxamine: Faverin/Luvox) 17-22 hours
> Fluoxetine Prozac 4-16 days
> Sertraline Zoloft 22-36 hours
> Paroxetine Paxil 21 hours, variable
> Venlafaxine Effexor 5-11 hours
> Citalopram Cipramil 1.5 days
> Nefazodone Serzone Up to 24 hours
Posted by renelso1 on May 29, 2002, at 9:47:17
In reply to Re: just started, posted by DJT on May 28, 2002, at 16:29:01
> Rox... any improvement in your IBS with the effexor other than less constipation? My stomach/intestines are all "bubbly" - do you take anything for the IBS, even over the counter?
think i mislead you. my problem with IBS was mad diarrhea. effexor has a side effect of constipation - which makes me more "normal." regarding what i take for IBS though is just fiber supplements. if i am good about taking it regularly, it helps.
Posted by JANNBEAU on May 29, 2002, at 10:24:14
In reply to just started, posted by DJT on May 28, 2002, at 15:32:36
>
>
> "So why is it that there are so many negative comments on this board? Is it because many of you are more difficult cases than average?"> Hi, DJT. I think you have hit the nail on the head. Most of us who post regularly on this site have noted the fact that most of the posts are negative in tone, although many of us also try to balance the pros and cons. Also, those who experience a negative side-effect of a medication have been shown to be more vocal about their problems than are those who do not experience any negative effects and are happy with their response to a drug (as with other situations in life, we complain when we are unhappy, but fail to give thanks when we are satisfied)! This means that there is probably some sort of "selection bias" occurring. Also, many of us report side effects that have already been reported in the literature and/or which are listed in the product information sheet that comes with the medication. I always ask for the "physician's insert" with my first Rx of anything. That way, I know ahead of time what the most common side effects are. Also, as more and more people take a drug, it is possible that rare side effects will surface that the drug studies are not designed to pick up (would need too many subjects, which would lead to longer times to development and marketing of good drugs as well as even steeper costs). Some such effects have led to withdrawal of certain medications, but most just lead to changes in labeling. Sometimes the side-effects even lead to studies for a new indication. Also doctors often use meds "off-label". If enough have success with such "off-label" use (which is NOT illegal in the US, by the way), the manufacturer will often do studies and ask for a "new indication" approval.
Hope this is helpful to you,
Cheers,Jannbeau
Posted by Grace Coyote on May 29, 2002, at 19:40:58
In reply to Re: just started, posted by JANNBEAU on May 29, 2002, at 10:24:14
Hello out there in cyber land...I just started Effexor about 4 weeks ago, I am new to the psychotropic meds. I had been on Serzone (100mg)for almost 2 years and never really noticed a difference except I didn't feel like my head was stuffed with cotten. I could at least have lucid moments. But during these last few months I could no longer shake the inner feeling of sadness. Most of the time it only lasts for a few days (hormonal) and then I can begin to sing in my car again and be more social with friends. Since I have been on the Effexor I want to be alone more and feel an inner silence. I am not dreaming, which bothers me. I also seem to be more forgetful than usual. No sex drive...and absolutely no motivation to do anything. I am holding my breath until my summer class is finished and I won't have to return to teaching until September. I dont't feel any better. I feel ambivalent about everything and could sleep round the clock if I could. I am going to see a real shrink next week (my GP prescribed this stuff) and maybe we can take a look at this. This zombie phase is lasting way too long for my liking. I am forgetting what I used to feel like. Most of the time even talking is a chore and since I am a college professor, I can not go to class with my brain in the clouds. I used to be able to go on for days about the subjects I teach with real interest, but now, I could care less. Is it me? Is it the medication? I can't tell anymore.
Posted by Beauty on May 29, 2002, at 22:01:31
In reply to New to Effexor XR - Do I want to continue?, posted by Beauty on May 27, 2002, at 14:34:41
Hi all, me again. Thought I'd check back in and let you know how I'm doing. Day 4 on Effexor: hellacious headache yesterday and today, remedied by Advil, for the most part, and some head massage. No getting to sleep at night, so am back on micro-amount of Trazadone in the pm. I feel some lethargy, and more apathy/complacency, than when on Wellbutrin. Appetite a little depressed, not a bad thing for me :-)). Thanks to everyone for your posts. Sorry about the duplicate initial message... wasn't sure I did it right the first time! (Try, try again?) Keep smiling!
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