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equilibrium 11 years of Effexor hell , adding Seroquel? This Mom needs help.


equilibrium

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Thanks for letting me join. I've been in Effexor XR hell for the past 10 years. I am very scared that my quick to dish out meds Dr keeps trying to get me on new things because Effexor is not working. I know Effexor might be causing more harm than good but I'm really hesitant to take more or new meds. It has really messed me up so I don't want the same thing happening to me with another drug. 

 

I started Effexor in May 2003. It was an urgent start as I had a history of anxiety and depression (mostly anxiety, and depression because I can't do things because of it). I became completely agoraphobic and could not apply for work, or even try to get assistance because I could get "out" to the places. I barely made it to the Drs and they put me on Effexor and I was very happy about it. Within days my anxiety lessened and for the first part I did not have any side effects. They quickly bumped me up to about 212 mg where I couldn't stop sleeping. Reduced a bit, and I went on in life.

 

The past ten years has been anything but consistent. We have tried to taper several times and got to 37.5 mg but then after about 3-4 weeks I get crazy rebound anxiety, crying non-stop, desperation, suicidal ideation, coping goes out the door. The tapering on and off is really really bad for me. I am extremely sensitive to changes in anything anyhow, and my body adjusts to medications (taking them) fast so they appear not to work but goes through extreme withdrawal very hard if I stop (reduce) them. This has happened with painkillers for surgeries, and such.

 

If I miss my dose by a couple hours, I am sick the next day. Most often, I can't see properly, and have weird weight in my head, stumble around, strange headache (but not headache.....but closest I can describe it to)., and my eyes start and I am really sick. So much that if I missed a day I would be scared I'd have to get to the hospital. Often, I can't drive because of this-I forget to take pill at same time and take 4 hours later and bam, takes a long time for me to adjust.

 

Anyhow, I have had extensive health issues come up that have no real cause or diagnosis. I feel unwell much of the time-vertigo, falling over, can't "see" properly, I have severe dry eyes now and pressure but no autoimmune issues that come up because of it. I have dizziness, sensitivity to light (quite extreme) and sound (extreme), and anxiety is really bad on and off, heart palpitations, and former fantastic blood pressure for life is not on and off really high...I get swooshing in my head (not related to withdrawal necessarily) and feel like I'm intoxicated much of the time. 

 

I'm down to 75 mgs again. Dr (psychiatrist) says Effexor is not good for anxiety, and that long I have worse effects than any benefit, and it just doesn't work. He tried to add risperidone (?) for anxiety but taken at night time. I didn't fill the prescription. Now, he wan't me to lower dose to 37.5 mg and add Seroquel (small amount) at night. He thinks that it will help with the withdrawal, and anxiety.

 

The issues I have are excessive daytime drowsiness as well and I have adhd so on /off need to take stimulants or narcolepsy meds so I'm worried about the impact on my heart. Because I've feel so much pressure, scary things that I can't seem to get pinpointed on why they are happening. They did a holter, and ekg or ecg whatever they are called and came back okay at that time.

 

I just read about opening up capsules and tapering smaller amounts. I might have to try that. I saw a neurologist (actually two separate ones) that said most likely all these issues I have are related to it but to be honest, I might not ever be able to get off of it completely because of the severe withdrawal issues I have-concerns of stroke I think it was.  Apparently since I am s hypersensitive to changes in anything (even foods etc) that it might cause me to go into shock....

 

So, I'm scared, but unhappy on this. I might very well need anxiety meds for my life but I don't want to be taking Effexor for it. I feel like my Drs dish out new prescriptions to try without even knowing the studies, or effects of the meds and I'm scared as I have children and need to care for them.

 

Really thankful for this page and looking forward to have a few support friends perhaps. Thanks for listening!

 

 

 

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  • Moderator Emeritus

Hi--More people will be along soon with more information. I just wanted to right away assure you of a couple of things.

 

First, you are one of millions of people around the world who have gotten stuck in this same trap. These drugs often do help in the short term, but in the long term they end up causing more problems than they ever solve or (usually) making the problems worse. This is because our brains change and adapt to them, then become dependent on them so when we try to quit we get sick. You are not alone. There is considerable variation in how sensitive people are to changes, like you, but you're not alone in that either; most of us who end up here on this forum have had similar problems to you.

 

Second, we can help you taper down or off if you want. However, it's going to be a much much slower process than your doctors believe or recognize as valid.

 

I'm glad that you're saying no to the Seroquel. I wish I had resisted my doctors putting me on "cocktails" of drugs. If you read peoples' stories here you will find so many tales like mine, of people who ended up on many drugs over the years, prescribed for side effects or drugs not working any more, and just kept getting sicker and sicker. I basically lost 20 years of my life.

 

If you can tell us when you were last taking 150 mg and how you tapered this time, and whether or not you've taken any other meds or supplements during the time that you've been tapering, that would be helpful. What are your symptoms? Why is your doctor saying the Effexor is "not working", are you having symptoms since reducing it, or were you having ongoing problems even before you cut it down? What is it that you want our help with specifically?

 

Your doctor is at least right about one thing, Effexor isn't really an anti-anxiety drug. Unfortunately the bad news is that there are no anti-anxiety drugs that will work in an ongoing fashion. All psychiatric drugs cause the same problem. They mess with the chemistry of your brain, and at first that might produce some good effect. But the brain is not passive. It wants to go back to its normal healthy chemistry. So it changes itself in complex ways. 

 

I won't go into more detail about all of that right now. You have time to read and learn all this stuff. Hopefully our member "bubble" will be along, she has the stuff I've written about how the brain adapts (thanks bubble, I don't have those quotes, and when you post them I don't have to write it all over again!)

 

Altostrata is the expert on ADs here and once we have a better idea of your recent history on Effexor and your current symptoms and what kind of help you are wanting now, she will probably have some advice for you too.

Mostly I just wanted you to know that what you've experienced is common. We've seen it a zillion times. You're doing great by not adding in meds, your thinking on that is correct and good, because down that path lies only a greater hell. You will get help and tons of good information here. Welcome.

 

Oh and ps: When you get a chance, get hold of a copy of Anatomy of an Epidemic by Robert Whitaker. It will help you a lot with understanding what's happening to you and why--the historical context of psych meds, how things got this way, what your doctor has been taught about them and why, what happens when people take them, etc.

 

Also read around the forum, tons of info!

 

Welcome.

Started on Prozac and Xanax in 1992 for PTSD after an assault. One drug led to more, the usual story. Got sicker and sicker, but believed I needed the drugs for my "underlying disease". Long story...lost everything. Life savings, home, physical and mental health, relationships, friendships, ability to work, everything. Amitryptiline, Prozac, bupropion, buspirone, flurazepam, diazepam, alprazolam, Paxil, citalopram, lamotrigine, gabapentin...probably more I've forgotten. 

Started multidrug taper in Feb 2010.  Doing a very slow microtaper, down to low doses now and feeling SO much better, getting my old personality and my brain back! Able to work full time, have a full social life, and cope with stress better than ever. Not perfect, but much better. After 23 lost years. Big Pharma has a lot to answer for. And "medicine for profit" is just not a great idea.

 

Feb 15 2010:  300 mg Neurontin  200 Lamictal   10 Celexa      0.65 Xanax   and 5 mg Ambien 

Feb 10 2014:   62 Lamictal    1.1 Celexa         0.135 Xanax    1.8 Valium

Feb 10 2015:   50 Lamictal      0.875 Celexa    0.11 Xanax      1.5 Valium

Feb 15 2016:   47.5 Lamictal   0.75 Celexa      0.0875 Xanax    1.42 Valium    

2/12/20             12                       0.045               0.007                   1 

May 2021            7                       0.01                  0.0037                1

Feb 2022            6                      0!!!                     0.00167               0.98                2.5 mg Ambien

Oct 2022       4.5 mg Lamictal    (off Celexa, off Xanax)   0.95 Valium    Ambien, 1/4 to 1/2 of a 5 mg tablet 

 

I'm not a doctor. Any advice I give is just my civilian opinion.

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  • Administrator

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

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