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Dr. Bob is Robert Hsiung, MD,
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Posted by tulip on December 10, 2004, at 12:57:57
In reply to Anyone had success on Effexor XR? , posted by jp on October 24, 1999, at 14:59:14
Hello to everyone and please bear with me as this may be a lengthy submission. I have been following this thread since first being described this medication 4 months ago and would like to say how appreciative I am to everyone who has shared their advice and experiences here. Without this thread ‘true’ information is hard to come by and myself , like others, would have thought I was alone in the misery this drug caused. I would like to say first off though to all the people who have found success with this drug and cannot understand our dilemma that people are different and react differently to medications. Congratulations that you found success but others truly have found hell. I don’t take everything I read here as ‘fact’ about the med’s it’s just what different people have experienced. But I have been able to read between the lines and compare my own personal observations and therefore not only learn general things but also ease my mind that I’m not crazy or that I’m not the only one not finding this to be the ‘symptom-free wonder drug’ MY particular doctor deemed it to be. The most important thing that we are all trying to get across is that there is MUCH room for error with this drug. Someone has to take responsibility and to be honest I don’t know enough to know who. I would like to blame my (now dismissed) doctor but then again how much are they told by the companies? But he’s not off the hook either…..doctors are there to tell us what we need or else we would write our own prescriptions right? The time MUST be spent by them to talk to their patients and truly be familiar with any drugs they think might help the individual. The individual! Not the general public. They must also listen to us carefully when we express our displeasure at a drug they have prescribed. I’m appalled that I hear so many stories of doctors telling us that these symptoms we are experiencing with effexor are all in our heads or a stomach flu etc etc. God I’d love to slip my doctor these pills for a month or so!
O.k. I’ll get to my point. I wanted to briefly detail my experience in case it brings light to anyone else currently starting or stopping this medication. I found sooo many little tidbits of advice while reading this that I wanted to share back. I was prescribed effexor 4 months ago after suffering a full blown ‘panic attack’. My first! I had always suffered mild waves of depression over the years but had chosen to avoid the medication route until that attack. ( They are horrific for anyone who has never experienced them.) I went to a new doctor who after listening to my account of the attack immediately suggested effexor xr and ativan. I was astute enough to ask about both and how long I would be expected to take them. He said effexor was used to treat ‘mild’ anxiety and depression and that the treatment would only be 5 or 6 months of taking these.
HA! What a quack!
The ativan I was supposed to take twice a day knocked me on my ass immediately (I’m 5’8 and 105 lbs). Sure that would help the panic as I was almost comatose. I stopped taking those immediately after the first and started taking them as needed. (was still feeling on-set of attacks at that point). The effexor I took that morning and was a mess by the evening. My doctor for-warned me of nothing! Sure the info that comes with it gives general things to expect but we all know that that comes with most med’s and the doctor normally tells you that these side effects would be minimal. Not with Effexor! I was shaking like a leaf, sweating, stuttering, having weird yawning feelings, tenseness in my whole body, especially my jaw. The feelings of an impending ‘attack’ were coming in waves. I felt so out of it I didn’t even want my fiance around me. I felt lost in my own skin. I decided that this was just the beginning and that I should give it a chance to go away….it didn’t. I got so lethargic and hopeless. (I personally never experienced it working at all …not even briefly) When I went back to the doctor he doubled the dose to 75mg and said to give it a couple weeks. I ended up quitting my job as I could barely function around people at all and started to turn into a recluse. (I’m normally extremely social) I truly thought I was going crazy…my mind was racing and racing with sometimes foreign, disturbing thoughts. I would have ‘attacks’ every time I left the house. I was sleeping up to 12 hours a day if I was left to. I lost 5 lbs immediately and would wake up choking and nauseous in my sleep. I also started having trouble sleeping as I was getting terrible leg cramps, night sweats and severe restlessness in my legs throughout the night. (none of this I would have ever dreamed to be a product of the med’s…I just thought I was falling apart on my own until reading this thread). After almost 3 months of this I confronted my doctor (who I might add never once monitored my progress or checked my BP) I pleaded with him to reconsider another med and he said I was being difficult and ‘inventing’ these symptoms as a product of my stress. I’m not a stupid girl (even for 24) and trust my gut immensely so I told him that I thought what he was doing was borderline malpractice and that he should be ashamed of himself for not listening to my concerns and addressing them. He (in a rage) demanded I leave his office and I said I would gladly.(truly though I was terrified and in tears about what to do next. I had gone to him BECAUSE I was scared!) Our lawyers have been in contact since.
Which brings me to 3 days ago. I quit cold turkey! I’ve lived on my own since 16 and never has my life spun so out of control as it has over the last 4 months. I would read this thread and cry at the horrific stories and fears of others in my boat. I felt like I was stuck and too terrified to try to get off these drugs but things has already spun so far out of control what was the worse that could happen? I was already still off work so I just decided to not take the pill one night. (to people taking these still….I found it made me less sleepy if taken in the night). By morning I was already in a mess. (not even 12 hrs since last dose). I had awoke soaked in sweat in the night and terrorized by vivid nightmares such as my teeth all crumbling in my mouth. ( I think I was clenching my jaw in my sleep). When I tried to get out of bed a wave of dizziness hit me so hard I had to sit back down. I was so shocked that it really was as intense as people had portrayed withdrawal to be.(I thought it was probably exaggerated a little or mostly just with people who were on high doses.) The next fun thing was immediate cramps thru my stomach. It felt worse than any stomach flu I had EVER gone thru. I ran back and forth to the bathroom about 7 times that day. And there is no relief I might add…..the cramps continue even if there is nothing in your stomach. Next came the shocks. I had heard about them but wasn’t sure what people were describing. Now I know! It feels like when you get a little shock from the toaster or a plug except it felt like it was emanating from my center. They didn’t’ stop either! I have to say though that even though they are a very alien feeling they were the easiest to deal with so far. They don’t hurt but I do cry out from time to time when they are extra strong. They have stayed with me over the last 3 days. Sometimes they come more or less often. Thank you so much to the person(s) who mentioned that Benadryl helps because it really did. For some reason it lessened the shocks and made me feel much less dizzy. Here I am on day three and doing alright. It sucks that the withdrawal seems to get more symptoms every day but I’ve come up with other ways to combat it. Another lady suggested b-12 isotonix and I have been taking that and anti-diaherrea pills.(to be fair and accurate I should also mention I smoke marijuana daily and I think that may have helped with the shocks and nervousness as well….but please don’t take that as a recommendation!) For me at least…I’m tentatively gaining hope. I have pills at the ready in case I cave but unless it truly becomes hell I won’t touch another. I’m still dizzy and my sight definitely is blurry (took me almost 15 min’s for my eyes to focus this morning) but ironically I feel more happy and awake than I have in 4 months even with shocks and all. I’m even going to venture to work for a couple hours tonight (though that seems a little soon as I’ve been ‘doing fine’ only in private.) We’ll see what happens. The important thing is that the scariest part is over…..the ‘unknown’. I’m already in the middle of ‘withdrawal’ and it doesn’t look half as scary as imagining myself on these drugs years later. I’m sorry to those of you on high dosages as I can imagine your battle will be all that much harder but if you want this for you …if you want your mind back…..fight!
I hope I haven’t annoyed anyone rambling. I intend to keep posting (much shorter) updates if anyone is interested. I also wanted to extend an invitation to anyone with questions or comments to contact me. Hey…if I can help! Anyone who’d like to give me some help/advice would also be appreciated!
Good luck all……
Posted by ed_uk on December 10, 2004, at 13:15:51
In reply to Re: Anyone had success on Effexor XR?, posted by tulip on December 10, 2004, at 12:57:57
Hi Tulip,
I was sorry to hear about what you have been through on Effexor. I used to take Effexor myself, I took 150mg a day. When I stopped Effexor I didn't taper because my mum threw the tablets in the bin when I said that I wasn't going to be taking it anymore!
I just wanted to let you that my withdrawal symptoms only lasted about two weeks. You might be feeling much better soon :-)
Some people are not so lucky and their symptoms last much longer but I just wanted to say that they don't last a long time for everyone.Best Wishes,
Ed.
Posted by dancingstar on December 10, 2004, at 13:29:18
In reply to Re: Anyone had success on Effexor XR?, posted by tulip on December 10, 2004, at 12:57:57
Thank you for your beautifully written and articulate post. It is sure to help many other people. I hope that this hell is very short lived, and that your life returns to happiness soon.
Bebe
Posted by S.Bartel on December 10, 2004, at 14:25:09
In reply to Re: Anyone had success on Effexor XR?, posted by tulip on December 10, 2004, at 12:57:57
Tulip,
Going cold turkey can be very dangerous. I've heard of people dying from that. I completely understand what you are going through and so do many others that post here. Many of us are taking steps to insure that this doesn't happen to others. Please email me at, <sammibar@sbcglobal.net>. Did you watch Prime Time Live last night?
Good luck, Sammi
Posted by jclint on December 10, 2004, at 14:50:02
In reply to Re: Anyone had success on Effexor XR? » tulip, posted by S.Bartel on December 10, 2004, at 14:25:09
Woah, hold up a minute there!
You've heard of people dying from Efexor withdrawal?
Posted by S.Bartel on December 10, 2004, at 14:56:28
In reply to Re: Anyone had success on Effexor XR? » S.Bartel, posted by jclint on December 10, 2004, at 14:50:02
Go to <petitiononline.com> Read all the comments.
Posted by jclint on December 10, 2004, at 15:53:54
In reply to Re: Anyone had success on Effexor XR? » jclint, posted by S.Bartel on December 10, 2004, at 14:56:28
Are you talking about people committing suicide during withdrawal? I have been on the petition many times, but have not seen any accounts of death as a direct result of withdrawal. I can't see how that's physically possible.
Posted by Dr. Bob on December 10, 2004, at 18:12:15
In reply to Re: Anyone had success on Effexor XR? » jclint, posted by S.Bartel on December 10, 2004, at 14:56:28
> Going cold turkey can be very dangerous. I've heard of people dying from that.
>
> S.Bartel> You've heard of people dying from Efexor withdrawal?
>
> jclint> Go to <petitiononline.com> Read all the comments.
>
> S.BartelPlease don't exaggerate or overgeneralize. What comments led you to conclude that people have died?
Bob
Posted by MKB on December 10, 2004, at 19:13:45
In reply to Re: Anyone had success on Effexor XR? » S.Bartel, posted by jclint on December 10, 2004, at 15:53:54
I'm not sure, but I think what Sammi meant was that people have committed suicide or had fatal accidents during the withdrawal. I say this because of the many personal accounts I've read at www.petitiononline.com/effexor.
Posted by S.Bartel on December 10, 2004, at 20:56:22
In reply to Re: Anyone had success on Effexor XR? » jclint, posted by MKB on December 10, 2004, at 19:13:45
Thank you MKB for clarifying for me. I don't think it's an exageration when people die for whatever reason from taking a prescription drug that they were not warned about. I was just trying to be helpful to someone that was quitting cold turkey when I personally know what the side effects can be.
Sammi
Posted by dancingstar on December 10, 2004, at 23:35:55
In reply to Re: Anyone had success on Effexor XR? » jclint, posted by MKB on December 10, 2004, at 19:13:45
I haven't been following this, but a drug that causes you to commit suicide when you stop taking it can't be good, really. It can't. Logic must come into play at some point, mustn't it??
Posted by Demp on December 11, 2004, at 8:23:06
In reply to Re: starting effexor... keep posting.. success/dosage?, posted by lg on October 26, 1999, at 19:09:26
I have been on Effexor XR for 2 months. The only side effects I am experiencing are strange but there are tingling sensations in my ears. I have noticed a difference in anxiety but thats about it. I still have irritablity and a very short fuse. I get very angry and my heart rate skyrockets so I know my blood pressure is probably rising too. I am a large person @ 6'2" and 235lbs and I am only instructed to take one 75mg dose per day. I often feel as if this dose is not enough because towards the end of the day I am already feeling signs of it wearing off. I agree with the earlier comments of withdrawal. It is very bad with this drug. I ran out of samples one week and after only 2 day w/o it I could not function. I felt disconnected, disoriented and dizzy. I thought it was supposed to be non-addictive. Oh yeah, my temper problems and anxiety were the original reason for taking Effexor.
C'ya
Demp
Posted by tuckerj on December 11, 2004, at 10:26:41
In reply to Re: Anyone had success on Effexor XR?, posted by dancingstar on December 10, 2004, at 23:35:55
Hi I wrote on this site about starting to take effexor and itching as a side effect. Well the itching went away after a week, but the insomnia didn't. I haven't slept for more that 3 hours a day since starting this drug, and my anxiety levels went through the roof.
After seeing my doctor, he took me off it, and has now given me beta blockers for the anxiety, and I'm already feeling calmer (which I think was the problem in the first place, I never actually felt depressed, but anxious)
However, even though I was only on 37mg a day, after only one day off the effexor, I'm beginning to get these "Brain Shivers" I've been reading about - it almost seems like they are mini blackouts.
So my advice is, if you're feeling anxiety (especially if you are a guy) don't be afraid of admitting it to your doctor, otherwise you may end up on this drug after being wrongly diagnosed with depression, and trust me. You don't want to be taking this stuff.
Good luck to all of you who are trying to wean yourself of higher doses, it must be tough.
Posted by dancingstar on December 11, 2004, at 12:14:21
In reply to I've had to come off it after 6 weeks, posted by tuckerj on December 11, 2004, at 10:26:41
I just copied pages of the 2004 PDR yesterday, and there are all kinds of itchy skin symptoms listed right there as possible side effects of taking Effexor. (I'm sure that the same list is at www.wyeth.com.)
They list skin problems as only 3 percent, but after watching the ABC special, I wonder if these estimates (in general) are a bit low.
Posted by tuckerj on December 11, 2004, at 13:23:00
In reply to Re: I've had to come off it after 6 weeks, posted by dancingstar on December 11, 2004, at 12:14:21
Here's another site you might be interested in - reports from the social audit website in the UK, going back to 1996.
http://www.socialaudit.org.uk/9425vfx.htm
Oh another withdrawal syptom is bizarre dreams (on the social audit website) Well I had a doozy of one last night which included 7 episodes of false awakenings, and another dream (I was being smothered) that I did manage to wake up from only to discover that I had sleep paralysis. Luckily I had heard of it before, so knew what it was, and didn't panic. But had I not been previously aware of it, there's a very good chance I would have needed to change my bedclothes this morning.
Posted by dancingstar on December 11, 2004, at 14:20:29
In reply to Re: I've had to come off it after 6 weeks, posted by tuckerj on December 11, 2004, at 13:23:00
Thanks for this link. It's a great addition to our growing list, sadly, of evidence.
Please feel better soon!!!
Posted by jubilee on December 11, 2004, at 15:22:09
In reply to Re: please be civil » S.Bartel, posted by Dr. Bob on December 10, 2004, at 18:12:15
My experience....I almost got locked up in the funny house after going off 75 mgs a day for quit awhile. I could not drive after 4 days and was on the freeway in the middle of nowhere, and I hhad double ,triple vision come on me, and made it to a resturant as there wasnt alot of trafic, thank God. I was all over the road. I had to be picked up.
Also almost sold my home and moved to timbucktwo,; saved it, went into debt the first time , I am a smoker and I was having blackouts and could have burned my home down many times over,. Just a few things there. Also got headacke and nausea after a month and diarrea and back on effexor stopped every symptom and I was driving in two days.Now , the second time....I had stroke symptoms come on me and I started back on high doses of effexor and scared the crap out of me with blured vision and dizzyness for 3 days anyway. I have no doubt I would have had a full blown stroke. (I wanted my sex life back , so I went off)
My feeling is that people who do die cant write here or are too sick to write. Yes I believe it can kill you, personally , with my body type anyway and thats why I say to go to any lengths to make sure you have a very large bottle before you quit and go real slow as I was blessed to do.
I am still lucky I have a partner at all after the anger I havce displayed over nothing, but I'm sure its not the effexor when it's happening !!!!! I should be dead and divorced and I am not trying to scare people , but be real.
First say you want to go up on your dose , then say you want off and to have something diffrent and go slow. Get a large bottle of 150's if possible. Save every pebble ;, be a scientist and take 4 to 6 months if possible.
I am down after 5 months to minute doses and I have high anxioty and I cant hold my legs still. I feel like my skitzo brother acts. I blow up really easy , God help dish TV people I did try to explain in a rage!!HA!!
I am going completely off (trying) in one week) and on to 8 prozac I have . I will go back to minute doses a bit longer if I start thinking of buying a gun. Only Kidding!!! No , I will just be so glad when its over , and I think I'm going to be nervous another month no matter what , but a nice Dr offered me a bottle of Xanex and I took it .
I hate being numbnuts but , better than such anxioty. My legs are bouncing everywhere , and its kinda hard to write a letter and quardanate wq/ your legs , HA! Taking some cogentin for that today and the Xanex.
I have had hypermania , agitation and anxioty as side affects for 4 years on effexor plus it has ruined my vision and I love to read. I had every known side affect except high blood presure , and that can sure kill you. I looked up ""http://www.petitiononline.com/effexor/"" and you will get a good idea of side affects from experts and see how well youre doing. I rather agree with Bartel , that anything this dangerous in side affect withdrawals cant be good for your body and I guess she has permanant liver damage , which makes me grateful I discovered this petition. I thought I was just stuck on this darn drug for life until the Lord moved me to go to my computer and look up effexor one day. I owe my health to him. .
Yes , I do believe that honesty is best if you can find an understaanding dr. Maybe take him some print out samples of these nightmare stories and what youre experiencing or dont want to experience.
Best way is to talk your Dr honestly into letting you go down real slow and giving you adavan for 4or 5 months if you can find one who will listen or understand. Maybe use the phonebook. I wish you all well, and also look to God almighty , who I feel saved my ass. God Bless , Jubilee.
Posted by dancingstar on December 11, 2004, at 15:51:24
In reply to My experience after 5 mths.-death?, posted by jubilee on December 11, 2004, at 15:22:09
Jubilee,
I picked up some Tryptophan at the vitamin shop last night. I mean, MKB has been telling us to get this stuff for how long now? I guess I figured that with the 5HTP and everything else I was taking that I just didn't want to add anything else cause I am spending more money on supplements -- way more -- than on food or clothes or shelter at this point, but it calmed my stomach a wee bit after the first dose. I mean, don't exceed the recommended doseage or anything to hurry it along cause I doubt that's gonna help. But it is worth a trying the Tryptophan, I think. I couldn't believe that it really helped. ;-)....stubborn, I am, I guess, and burned out from feelins so bad for so long, too. My joints have been hurting so badly...and then they just stop hurting when my stomach stops hurting. It says right on the label, though, to be sure to take with some carbohydrate and to make sure to take good quality B vitamins during the day.
I hope this helps you a little....
Just thought that I would reinforce what she was saying cause it really helped relieve that anxious feeling, and I think it could or it might help you too.
Many prayers!!
Bebe
Posted by Dr. Bob on December 13, 2004, at 19:23:00
In reply to Re: My experience after 5 mths.-death? » jubilee, posted by dancingstar on December 11, 2004, at 15:51:24
> I picked up some Tryptophan at the vitamin shop last night...
Sorry to interrupt, but I'd like to redirect follow-ups regarding Tryptophan to Psycho-Babble Alternative. Here's a link:
http://www.dr-bob.org/babble/alter/20041212/msgs/429059.html
Thanks,
Bob
Posted by absolute on December 14, 2004, at 0:55:30
In reply to My experience after 5 mths.-death?, posted by jubilee on December 11, 2004, at 15:22:09
Speaking of side effects- I've compared Eli Lilly's drug Cymbalta to Effexor XR. Cymbalta can damage your liver if you are a moderate to heavy drinker. I've never found any information on that being true with Effexor. In fact, my doctor says it does not.
Do SNRI's increase the likelihood of liver damage when combined with alcohol, or is this side-effect limited to Serzone & Cymbalta?
It's possible that no one really knows for sure.
Posted by dancingstar on December 14, 2004, at 12:21:19
In reply to Side Effect- Liver Damage (Effexor Cymbalta), posted by absolute on December 14, 2004, at 0:55:30
go to wyeth.com where you can read more completely about the side effects, as I was advised to do; but in answer to your question, one of us has severe liver damage as a direct result of taking effexor.
because of my personal experience that i only became aware of after discontinuing effexor, i think that it is a horrid choice of drugs...though i'm not sure of a better one.
i'm leaning towards pharmaceutical grade tryptophan which you can now purchase at the vitamin shop. i am not sure of the interaction of tryptophan and alcohol, though, but i will bet it is safer than any of the AD's. Please continue to do your homework on this before taking anything.Blessings.
Posted by HappinessPie on December 14, 2004, at 15:20:17
In reply to I've had to come off it after 6 weeks, posted by tuckerj on December 11, 2004, at 10:26:41
I was only on it for about 10 weeks total, including ramping up and down. I weaned myself off 150 mg (XR) but it was the last step (from 18 mg to 0) that was the worst.
I am so glad to be off it; it's been 8 days and my brain shivers are nearly gone. I just get one every several hours or so instead of every 5 minutes. The nausea is almost gone too!
Good luck to everyone else coming off it; it is most unpleasant (to put it mildly).
(PS I went off it because of weight gain, flat emotions / dispassion, nausea, & memory issues)
Posted by corafree on December 14, 2004, at 19:10:06
In reply to Re: My experience after 5 mths.-death? » jubilee, posted by dancingstar on December 11, 2004, at 15:51:24
I understand the L-tryptophan helped w/ anxiety feelings, correct? just me cf
Posted by moms4elmo on December 15, 2004, at 9:28:46
In reply to Re: for jp Effexor vs SR, posted by jo on October 27, 1999, at 11:05:39
Effexor XR is a pretty potent drug. I am on 75mg/day. I have no major side effects, luckily. My doctor very clearly informed me that if I wanted to try another drug, I needed to come down off of the effexor first. I have mild OCD/depression and take no other drugs. I recommend listening to your doctor and taking it slow.
Posted by jubilee on December 16, 2004, at 14:05:35
In reply to Re: Side Effect- Liver Damage (Effexor Cymbalta), posted by dancingstar on December 14, 2004, at 12:21:19
I end up erasing titles because I dont know any other way to start new subject....sorry.
I wanted to share for those who want to gt off effexor but can't bare the thought of slipping back into the doom and gloom that I suffered with for 19 years of depression.
I would go down on my elivil( which the least harmful of all I am convinced and was actually discovered for people with TB, and they were all comming out of depressions . ) It was very popular back in my day , I'm 52 , for when people got depression , though there were others around, and maybe asking for an older drug might help.These new drugs are from hell in my opinion as they are trying to fix everything like weight gain, dry mouth etc I feel.. My daughter-in-law wants a particular one that is Topamax, which she has been on and off several times with no problem , that helps for people who especially have weight problems that runs in her family and she lost lots of weight , plus I assume it helped with depression.
I am only sharing some things I am aware of and certainly not giving any advice , but the doom and gloom would hit strong in 3 days for me and going back on my elivil could pull me back out of it in 2 or 3 days. Believe me , I tried it many times, and the worst I gained in the 18 years I was on it was was 50 lbs. Never went over that , and didnt discipline myself on sweets !
I just wanted to say I know there are many facing the hell of depression to go off effexor which did work well for me also..
I am going too write on another subject on the horrors of withdrawals of effexor now under a new title. Jubilee.
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Dr. Bob is Robert Hsiung, MD,
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