Hoosierfans Posted October 29, 2013 Share Posted October 29, 2013 Hey all. I'm fairly new to this forum but have been around a sister site (bb) for awhile. My question is for those who have had to taper (or quit) multiple drugs. How long did you wait in between those tapers (or c/t) and what was your decision point (symptoms fading, a certain time frame, etc.)? My quick history -- been on Effexor XR and Klonopin since 2007 for mono; tried to taper (unsuccessfully) in 2008 (didn't know about these sites) so back on the whole lot in 2009, ditching Klonopin easily. Switch to Effexor generic in Jan 2011 made me extremely ill so docs piled on the meds not knowing what was going on. It all ended up in the spring of 2012 with me tapering a micro dose of K (.0625 mg), my docs upping my Effexor dose (to 112.5 from 75) and then giving me Ativan for the jitters and anxiety caused by the Effexor updose. Tapered the Ativan quickly (too quickly) over 8 weeks and ever since have felt awful -- jitters, boaty dizzy, lightheaded, weak, depressed, super anxious, akathesia and whole lot of other symptoms. Now 15 mos off the Ativan with no improvement seen over the last 15 mos (no windows, symptoms not lightening), so wondering how long I should wait to tackle the Effexor.... I am bedbound A LOT even though I do all the "healing" stuff -- eat healthy, rest, relaxation exercises, avoid supplements, etc. If it is the Effexor doing this, why wait?? Just need to hear from those folks who had to do multiple tapers....and especially those that had a first "nasty" w/d. Where (and how) did you go from there? Thanks everybody!!! Update 2018 (been away awhile!) Early 2014: Diagnosed with Lyme disease, confections Bartonella, Babesia so spent 2014 treating w/ local LLMD with antibiotics, antiparasitics and supplements. Symptoms just worsened. Also consulted with autonomic neurologist and underwent vestibular therapy. 2015 - 2016: Switched to “big gun” LLMD in Washington D.C. who treated with further ABX, antiparasitics, supplements, antifungals, T3 treatment. No improvement, but worsening over 2 years 2017: Switched to local LLMD and functional medicine doc who diagnosed sub clinical mast cell activation disorder (9 month trial of cromalyn did not help); allergies to serotonin, norepinephrine, epinephrine, estrogen, progesterone and leutenizing hormone 2018: Continue to work with local LLMD, but do not think Lyme is the issue. Believe that long term use of fludrocortisone, Effexor, and then gut ruining ABX for years for Lyme is cause of symptoms rendering me bedridden. In February, underwent autologous stem cell therapy at Infusio Beverly HIlls to heal nervous system, strengthen immune system, strengthen vascular system so that over the next year I can taper off Effexor and Fludorcortisone. Current Dx: POTS, chronic dizziness / vestibular migraine, hypotension, Lyme, Bartonella / babesia, SSRI withdrawal syndrome, hormone allergies, neurotransmitter allergies, iron deficiency anemia, Vit D deficiency, cognitive dysfunction Treatment: mostly vegan diet, daily meditation, SVF stem cell therapy (2/18). Supplements: Histamine Scavenger, DAO, zeolite clay, psyllium seed, CBS / BHMT Assist, castor oil packs, epsom salt baths. 2011 - 2013: Bad reaction to Effexor generic in Jan. 2011 resulted in multiple med changes 2011 - 2012 including prozac, klonopin (10/11 - 4/12 @ .125; jumped 4/12), Pdoc increased my Effexor to 112.5 b/c of K withdrawal, then put on 1.5 mg Ativan 4/24/12 (.05 3 x day) for anxiety caused by Effexor updose. Ativan put me in bed for two months, so I tapered 15% per week, jumped 7/23/12 (way too fast) Link to comment Share on other sites More sharing options...
Meimeiquest Posted October 29, 2013 Share Posted October 29, 2013 Are you sure you're ok with the licorice? What if you dropped the Effexor 5% just to see what would happen? I think you might be able to resume your regular dose quickly if need be? Are you sure you don't want magnesium and fish oil on board when you start to taper? This is what I have done, not really helpful to your situation...started Wellbutrin taper 2-3 weeks after Zyprexa taper because I was getting manic...I was not at all stable. Planning to wait 6 months from last Wellbutrin dose to start very, very slow dual taper of lithium and benzo....I mostly have fatigue, depression, and benzo tolerance symptoms, nothing nearly as severe as you. But who knows what I'll be thinking when I reach the 6 months point. 1st round Prozac 1989/90, clear depression symptoms. 2nd round Prozac started 1999 when admitted to dr. I was tired. Prozac pooped out, switch to Cymbalta 3/2006. Diagnosed with bipolar disorder due to mania 6/2006--then I was taken abruptly off Cymbalta and didn't know I had SSRI withdrawal. Lots of meds for my intractable "bipolar" symptoms. Zyprexa started about 9/06, mostly 5mg. Tapered 4/12 through12/29/12 Wellbutrin. XL 300 mg started 1/07, tapered 1/18/13 through 7/8/13 Oxazepam mostly continuously since 6/06, 30mg since 12/12, tapered 1.17.14 through 8.26.15 11/06 Lithium 600mg twice daily, 2.2.14 400mg TID DIY liquid, 2.12.14 1150mg, 3.2.14 1100mg, 3.18.14 1075mg, 4/14 updose to 1100mg, 6.1.14 900 mg capsules 7.8.14 810mg, 8.17.14 725mg, 8.24.24 700mg...10.22.14 487.5mg, 3.9.15 475mg, 4.1.15 462.5mg 4.21.15 450mg 8.11.15 375mg, 11.28.15 362.5mg, back to 375mg four days later, 3.4.16 updose to 475 (too much going on to risk trouble) 9/4/13 Toprol-XL 25mg daily for sudden hypertension, tapered 11.12.13 through 5.3.14, last 10 days or so switched to atenolol 7.4.14 Started Walsh Protocol 56 years old Link to comment Share on other sites More sharing options...
alexjuice Posted October 30, 2013 Share Posted October 30, 2013 I tapered from klonopin and effexor, and others too, but first I tapered the effexor and then I remained on benzos for another 3.5 years. Actually, I stopped klonopin for aabout two years and then restarted klonopin within a couple of months after stopping effexor/risperdal bc i couldn't sleep. Looking back I would have tapered all the meds simultaneously or start the klonopin a few weeks after klonopin. I waited too long which contributed yoo much to the total toxicity. I am free from psychiatric medication today though I remain toxic. "Well my ship's been split to splinters and it's sinking fast I'm drowning in the poison, got no future, got no past But my heart is not weary, it's light and it's free I've got nothing but affection for all those who sailed with me. Everybody's moving, if they ain't already there Everybody's got to move somewhere Stick with me baby, stick with me anyhow Things should start to get interesting right about now." - Zimmerman Link to comment Share on other sites More sharing options...
Administrator Altostrata Posted October 31, 2013 Administrator Share Posted October 31, 2013 Hoosierfan -- If you're having an adverse reaction to Effexor, decreasing it makes sense. But there are no guarantees it will make you feel better. Your nervous system is sensitized from the benzo taper. All you can do is go very carefully. This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner. "It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein All postings © copyrighted. Link to comment Share on other sites More sharing options...
Hoosierfans Posted October 31, 2013 Author Share Posted October 31, 2013 Thanks all for your responses!! M -- thanks for your input. i would love to use magnesium and fish oil, but can't tolerate either. Fish oil rev'd my benzo w/d symptoms when I tried it for a couple of months late last year and magnesium makes my already low bp go lower -- to the point where I pass out. Eeek!!! You make an excellent suggestion about trying a little cut. I am at 84 mg right now, using a digital scale. In August I cut 3 mg (88 to 85) and my symptoms got 1000% worse for about 2 days. So bad I was almost suicidal. It was not pretty. BUT, just about a week or so ago I cut just 1 mg (85 to 84) and didn't feel a thing. So maybe the right course for me would be to make just little cuts every month....1 mg or so, until I reach, say, the 2 year mark off benzos and knowing that some healing by then underneath has happened, I can try and go a bit faster. Alto -- thanks also for your input! I have heard around some forums and FB that its best to wait 2 years in between tapers (if you are really symptomatic, if you aren't you might get away with a shorter time frame). What do you think about that? And also, for everyone, can it happen that a med you tolerated just fine (like me w/ Effexor) all of a sudden your body doesn't tolerate when you are in benzo w/d. In orther words, can the med kind of turn on you? I have always tolerated the Effexor just fine (except at higher doses like 150 mg and up) prior to c/t the short amount of Klonopin and then the Ativan debacle. Thanks all! Update 2018 (been away awhile!) Early 2014: Diagnosed with Lyme disease, confections Bartonella, Babesia so spent 2014 treating w/ local LLMD with antibiotics, antiparasitics and supplements. Symptoms just worsened. Also consulted with autonomic neurologist and underwent vestibular therapy. 2015 - 2016: Switched to “big gun” LLMD in Washington D.C. who treated with further ABX, antiparasitics, supplements, antifungals, T3 treatment. No improvement, but worsening over 2 years 2017: Switched to local LLMD and functional medicine doc who diagnosed sub clinical mast cell activation disorder (9 month trial of cromalyn did not help); allergies to serotonin, norepinephrine, epinephrine, estrogen, progesterone and leutenizing hormone 2018: Continue to work with local LLMD, but do not think Lyme is the issue. Believe that long term use of fludrocortisone, Effexor, and then gut ruining ABX for years for Lyme is cause of symptoms rendering me bedridden. In February, underwent autologous stem cell therapy at Infusio Beverly HIlls to heal nervous system, strengthen immune system, strengthen vascular system so that over the next year I can taper off Effexor and Fludorcortisone. Current Dx: POTS, chronic dizziness / vestibular migraine, hypotension, Lyme, Bartonella / babesia, SSRI withdrawal syndrome, hormone allergies, neurotransmitter allergies, iron deficiency anemia, Vit D deficiency, cognitive dysfunction Treatment: mostly vegan diet, daily meditation, SVF stem cell therapy (2/18). Supplements: Histamine Scavenger, DAO, zeolite clay, psyllium seed, CBS / BHMT Assist, castor oil packs, epsom salt baths. 2011 - 2013: Bad reaction to Effexor generic in Jan. 2011 resulted in multiple med changes 2011 - 2012 including prozac, klonopin (10/11 - 4/12 @ .125; jumped 4/12), Pdoc increased my Effexor to 112.5 b/c of K withdrawal, then put on 1.5 mg Ativan 4/24/12 (.05 3 x day) for anxiety caused by Effexor updose. Ativan put me in bed for two months, so I tapered 15% per week, jumped 7/23/12 (way too fast) Link to comment Share on other sites More sharing options...
Administrator Altostrata Posted November 1, 2013 Administrator Share Posted November 1, 2013 If you are sure you are having adverse effects from the Effexor, it makes sense to very cautiously reduce it. This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner. "It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein All postings © copyrighted. Link to comment Share on other sites More sharing options...
Hoosierfans Posted November 1, 2013 Author Share Posted November 1, 2013 Thanks Alto. My main symptoms are constant jitters , dizziness, lightheadednes, fatigue and the "cement head." I really think it is a combo of too much glutamate (courtesy of ativan wd) and too much norepi (courtesy of effexor). In the past I have felt ok on this dose of the effexor, but I wonder now whether my system is so sensitized from the glutamate storm of ativan wd that you add in the extra norepi and my system is off the chart. What is curious is that I am not seeing any improvement yet even though I am 15 mos off. I do hear from benzo folks that 18 to 24 mos is a big turning point for everyone in benzo wd, so that time frame should really TELL me whether it is benzo wd or the effexor. So I am very tempted to wait until then to be safe; on the other hand it means potentially another 9 mos of being nonfunctional if it is effexor.. Has anyone on this forum done a benzo first then ad taper?? Update 2018 (been away awhile!) Early 2014: Diagnosed with Lyme disease, confections Bartonella, Babesia so spent 2014 treating w/ local LLMD with antibiotics, antiparasitics and supplements. Symptoms just worsened. Also consulted with autonomic neurologist and underwent vestibular therapy. 2015 - 2016: Switched to “big gun” LLMD in Washington D.C. who treated with further ABX, antiparasitics, supplements, antifungals, T3 treatment. No improvement, but worsening over 2 years 2017: Switched to local LLMD and functional medicine doc who diagnosed sub clinical mast cell activation disorder (9 month trial of cromalyn did not help); allergies to serotonin, norepinephrine, epinephrine, estrogen, progesterone and leutenizing hormone 2018: Continue to work with local LLMD, but do not think Lyme is the issue. Believe that long term use of fludrocortisone, Effexor, and then gut ruining ABX for years for Lyme is cause of symptoms rendering me bedridden. In February, underwent autologous stem cell therapy at Infusio Beverly HIlls to heal nervous system, strengthen immune system, strengthen vascular system so that over the next year I can taper off Effexor and Fludorcortisone. Current Dx: POTS, chronic dizziness / vestibular migraine, hypotension, Lyme, Bartonella / babesia, SSRI withdrawal syndrome, hormone allergies, neurotransmitter allergies, iron deficiency anemia, Vit D deficiency, cognitive dysfunction Treatment: mostly vegan diet, daily meditation, SVF stem cell therapy (2/18). Supplements: Histamine Scavenger, DAO, zeolite clay, psyllium seed, CBS / BHMT Assist, castor oil packs, epsom salt baths. 2011 - 2013: Bad reaction to Effexor generic in Jan. 2011 resulted in multiple med changes 2011 - 2012 including prozac, klonopin (10/11 - 4/12 @ .125; jumped 4/12), Pdoc increased my Effexor to 112.5 b/c of K withdrawal, then put on 1.5 mg Ativan 4/24/12 (.05 3 x day) for anxiety caused by Effexor updose. Ativan put me in bed for two months, so I tapered 15% per week, jumped 7/23/12 (way too fast) Link to comment Share on other sites More sharing options...
lexicon Posted November 2, 2013 Share Posted November 2, 2013 Hi Hoosier, I am saddened that you are going through this distressful time:( My wish is that it will all get better for you. I have a version of a "cement head "as you call it, and am on Ativan. But may I ask you, how you would characterize that, besides the obvious? Thank you so much .. Sending you warm thoughts of wellness, and healing. Love, Lexi Hello, I am tapering Lorazepam, and my daily dose is 1.125 mgs. I followed a long hold for 5 months, ( Nov-March 2019) hoping to find some stability, but it did not work. So I resumed my taper and hold pattern. For the last 3 years, I have been using a daily microtaper, cutting .001mgs per day, with holds as needed. Symptoms are head pressure, labored breathing, palpitations, abrupt surges of dizziness, this being my worst symptom for now, internal tremors, my latest nemesis, unsteadiness, anxiety, plus many other symptoms that cycle in, and cycle out consistently. Not a day passes, without grief I take no other meds. January 2013 - 15 day quick taper off 10 mgs of Lexapro, and 25 mgs of Sertraline, at a detox clinic. Link to comment Share on other sites More sharing options...
Administrator Altostrata Posted November 2, 2013 Administrator Share Posted November 2, 2013 Hoosierfan, it may be the benzo was controlling the adverse effects of Effexor and now you're off it, you are experiencing them. (This is one of the reasons to go off a more-activating antidepressant first.) This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner. "It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein All postings © copyrighted. Link to comment Share on other sites More sharing options...
alexjuice Posted November 2, 2013 Share Posted November 2, 2013 Hoosierfan, it may be the benzo was controlling the adverse effects of Effexor and now you're off it, you are experiencing them.(This is one of the reasons to go off a more-activating antidepressant first.) I agree of the possibility for this. I found the benzo masked many symptoms of the other psych drugs for me. "Well my ship's been split to splinters and it's sinking fast I'm drowning in the poison, got no future, got no past But my heart is not weary, it's light and it's free I've got nothing but affection for all those who sailed with me. Everybody's moving, if they ain't already there Everybody's got to move somewhere Stick with me baby, stick with me anyhow Things should start to get interesting right about now." - Zimmerman Link to comment Share on other sites More sharing options...
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