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rowinghippy posted a topic in Symptoms and self-careI'm writing to hopefully get some insight, see if anyone had problems they assumed were WD, but turned out to be something else that once addressed led to noticeable improvement, and see if anyone has symptoms not shared by most others here (i.e. my insane hunger/destroyed cues). Even if you don't read this whole post (long, sorry) answering 2 or 3 would be great! Long story short, I was recovering from anorexia when put on Celexa. My body was unstable then, and the drugs made it worse. A month in I had increased hunger, looser bowel movements, insomnia, etc. Slowly I developed food sensitivities, dairy first, then gluten, and now it seems a whole host of things. Recently went to a gastro, was diagnosed with sibo. Took xifaxan for 2 weeks, saw some really good improvement the first week, then worsened the 2nd. Back to where I started before the antibiotic by now. I'm struggling to determine if the sibo is what has actually caused my food sensitivities, leaky gut, increased hunger, weight gain (really driving me crazy, especially since I worked so hard to gain weight/stay stable after anorexia), etc. or if my gut is just messed up b/c of the meds and sibo is a result, reinforcing the above issues. Part of me doesn't think it's entirely WD, since I don't see many people here with the problems I'm facing. But hunger, etc. problems got to be the worst both times I tapered before, slowly evening out to my state now (not driving me suicidal) which makes me think the sibo/issues are tied to WD (also since the sibo problems seemed to come back immediately after the antibiotic). I'm going crazy trying to figure everything out (between anorexia recovery, celexa side effects, and now WD, I don't know what 'stability' is). Keep messing around with my diet in the meantime, with little success. moderator note: SIBO = small intestine bacterial overgrowth
Audo posted a topic in Introductions and updatesOriginal post here: I originally wrote a detailed update on my situation, which is below, but I realize this may not be helpful for some people so here's a list of a few things I've learned in the 20 months since my last post. My memory is shot, and I really haven't read much online in over a year so some of this may be redundant or common knowledge. -There are few things more demoralizing in this process than having a doctor, especially a psychiatrist, dispute or discount the claims and suffering of protracted withdrawal syndrome. I've seen a ton of doctors, most were compassionate but ignorant, and a couple were comically awful; a couple psychiatrists were interested in increasing reports about the issue but said my (our) situation was exceedingly rare. It's also demoralizing to continue to see such widespread ignorance on this issue. At some point you just have to cut your losses and realize that doctors can't help, and most just make it worse by misdiagnosing and prescribing ill-advised medication. (Side note: I candidly talked to 6 General Practitioners if they would look at regular Benzo use if a patient presented with a number of obvious side-effects many of us have experienced from such use, and they all said in one way or another that it wouldn't really be on their radar. This is just mind-boggling and beyond frustrating.) -A neurologist and a neuro-oriented GI both told me independently that protracted withdrawal syndrome makes complete sense after discontinuing psych meds after long-term use and is likely a type of nerve dysfunction (they both wouldn't use damage per se). They both said that this issue is analogous to and has been identified in studies of post-viral patients or people overcoming other ailments, and both referenced a 1 to 2 year timeline where most healing of the nervous system takes place. This is interesting not only in the consistency of their claims, but also because this timeline seems to apply to most people suffering from protracted withdrawal although I know for many people it may take much longer. Also it probably goes without saying that this timeline wouldn't necessary apply until after complete discontinuation. The neurologist also specifically used "Autonomic Nervous System Dysfunction" as the underlying cause for or more formal designation of this syndrome, and also hypothesized that people who suffer from severe protracted withdrawal may have had some pre-existing dysfunction. -My situation has also followed the windows and waves pattern, although it's often hard to see it because many of the windows also include significant suffering, which speaks to how severe the waves are. -For me, the weekly micro-taper followed by the occasional several week hold seemed to introduce far more instability than the 5-10% drop per month. The 10% drop was also way too high for me, unfortunately. -Compounding pharmacies can be very helpful, but can be expensive and often can't produce the very small doses we typically need. I'm fortunate that Effexor XR has small beads that can be counted. In my research and experience using milligram scales, unless you are going to drop $1,000+ on a lab-grade scale, I would highly discourage using a scale versus counting beads. Count the beads on a flat, dark table, and scrape the beads off the table into a small funnel that fits into a capsule. The funnel is imperative and reduces like 90% of the time relative to tweezing each individual bead into the capsule. -Make sure that your medication is always coming from the same manufacturer. Your doctor and pharmacist should be able to help with this. I also use generic Effexor (Venlafaxine) which costs like $30 for a 90-day supply. I spoke to my doctor about my concerns, which currently because of my insane anxiety also includes worrying about medication shortages, and stocked up on a 2-year supply (relative to the # of beads I currently need). -I now experience withdrawal-like symptoms and possibly a wave even after a few days of OTC meds like NyQuil, antihistamines, laxatives, etc. I seem to tolerate 1-2 drinks 1-2x/week during windows, but anything more will cause issues. Drinking during a wave always makes my suffering so much worse. -As someone who was incredibly active before this debacle, I have caused waves so many times by overdoing it during the windows. If you're feeling good, go for a meditative walk, but take it easy. Also any type of severe stress for me is an immediate "Do not pass go, do not collect $200, go straight to the wave." The connection is amazing. Before I went on a leave, I would be in a window, experience an acute work stressor, and within 24 hours I would be in a wave that would last weeks. Seriously, it happened like clockwork every time. -Every single medical, "alternative" or nutritional intervention I have tried either made things worse (majority) or did nothing to help. This seems to be most people's experience, although I know fish oil and magnesium is popular, both of which seemed to cause harm in me. If you start something I would highly recommend doing it one at a time and wait weeks before introducing a new variable. -I kept a detailed daily symptom and note chart for over a year. In the end this was ineffective for me. Trends were almost always unidentifiable, and going back to review all of the symptoms and pain ended up being a net negative. I transitioned to a gratitude journal where I can focus on the positive and refer back to when I'm having a wave. Each time I have a wave I just know it'll never get better, so being able to see all the times it did get better is somewhat helpful. -Other things that have marginally helped have been mindfulness, self-CBT, practicing acceptance, and walking everyday during windows. I could see religious faith or strong spirituality being very helpful; the former is not an option and I'm always in search of the latter. -Finally, my main debilitating symptoms are gut related, akathisia and insomnia. However, the number, strangeness and severity of my other symptoms is just staggering. Here's a quick list in general order of severity/frequency for the collective record: flu-like symptoms and extreme fatigue, cognitive difficulties and memory issues, joint pain, urinary retention and frequent nighttime urination (like 12x/night sometimes), blood sugar-like crashes at ever-varying times of the day, several frightening episodes of vasovagal syncope, eczema, frequent night sweats (like having to change clothes type of sweating), daytime excessive sweating, pins and needles, blurry vision, I developed gingivitis despite good oral hygiene, I developed a yeast infection (rare for men); also not to mention the rage, dysphoria, agitated depression, suicidal depression, crippling anxiety and crushing impending doom. Despite all of this, I have completed over $10K in doctor's visits and tests within 2 years (not all out of pocket); and according to the litany of results, I am an otherwise healthy 30-something year old :S ------------------------------------------------ I haven't posted since May 2018 and lurked for months after, but haven't checked back in about a year. This site has been an invaluable resource, particularly during my initial trauma. Had I not known everything presented by Altostrata and the rest of you warriors, oh man I just don't know, it would have been far far worse. I will say that the continued use of these online forums eventually became a double-edged sword for me, offering equal parts hope and despair. There's just so much suffering here, and while I feel less alone, I just hurt so much for everyone here and it tends to weaken what little optimism I have in my own situation. However, I thought a comprehensive update was in order for my own therapeutic needs, as well as to maybe provide some useful information for others. As I previously indicated, I tapered off of 37.5mg Effexor XR over 45 days in 2018 and developed severe akathisia two weeks after discontinuation. I reinstated to 24 mg after a week of abject hell, and also started taking low-dose Klonopin again as a much needed bandaid after being off of benzos for over a year. I'm not sure the causation/correlation, but the severe akathisia diminished over the course of the next few weeks, transitioning into moderate akathisia and severe bloating, distention, tightness and gut hypersensitivity. Most of the gut issues and other new symptoms presented a day within reinstating through. Obviously a kindling effect. Subsequently, the more severe my gut symptoms, the worse my akathisia, although it's never been as bad as it was prior to reinstating. I started micro tapering 1 Effexor bead/granule (~0.35 mg) per week, which equated to ~6% reduction per month. I continued this approach semi-regularly with occasional holds until April 2019, at which point I have held at 15 mg since. Looking back I believe 1) I should have held my original reinstatement dose of 24 mg for MUCH LONGER, and 2) a single reduction of 2-5% my previous dose per month is probably less detrimental than continued regular micro tapering. Between my reinstatement in 2018 and September 2019, I experienced severe waves and relatively brief windows, and probably little net improvement. During that time my gut issues were omnipresent, and would regularly produce akathisia and insomnia. I could have a bowel movement everyday and still experience sudden severe tightness and distention. During extreme flareups I would live for weeks at a time in my dark basement in misery I never thought possible. I would regularly go two days with no sleep followed by days of sleeping for no more than 2-3 broken hours; my gut would be so tight and uncomfortable, not pain per se, but an akathisia-like horror or hypersensitivity that would cause hours of pacing, bouts of crying and pleading, severe suicidal ideation, and two unproductive, embarrassing trips to the ER. I have spent dozens of 2am nights pacing the sidewalks outside or lying on a nearby park bench for hours with a podcast and looking at the stars, just white knuckling the torture. I would also have debilitating, sickly fatigue; hot, red, painful joints and the onset of eczema throughout my body; scary throat tightening and difficulty swallowing; and ever-rotating bouts of extreme malaise, depression, crippling anxiety and rage. I won't get into the intensity of suicidal ideation, but the cognitive dissonance between having such a strong and real urge to die, and also wanting to live with equal intensity, was/is torture. It makes it all the worse, and better, that I am happily married to an overwhelmingly supportive wife and have two wonderful boys 3.5 years and 7 months old. I'm honestly not sure if I'd still be here without my family, largely because I feel I owe it to them to hold on in the hope that one day I can be a productive father and husband. My wife has pleaded with me on a number of times that she would rather live lifetimes taking care of me in this condition than lose me to suicide. I have so much guilt because of this, and mourn the lost time with them over the last two years (plus previous 7 years while I was polydrugged into oblivion), and am constantly wondering if my kids are going to have an invalid dad who can't do anything, or worse... At any rate I would experience some windows that were not devoid of gut symptoms, but allowed me to live at maybe 65% capacity. I could mow the lawn, go on easy bike rides, play with the boys, have a drink with my wife, go to a movie, even lift light weights, etc. During this entire process, I continued to work mostly full-time; I was able to do this by working from bed or the basement at ever-varying times when my symptoms were anything but brutal. There's no doubt that the continued stress of work significantly impacted my recovery, but even though we are blessed to be financially stable, I felt like I owed it to my family to continue to bring in money, despite their protestations. During this whole time I did what many people do and sought help from a number of doctors (5 psychiatrists, 5 GPs, 1 Integrative GP, 5 GIs, 1 neurologist, 1 rheumatologist) and tests to try to solve the problem that I know now can only be solved by time. At first I was incredulous to what was actually happening; eventually I thought there may be something that could help with the gut issue. Most doctors were sympathetically clueless, a couple were accusatory and borderline abusive. There was one argumentative doctor who scolded me for going off my meds, told me that the this is what happens when I don't listen to my psychiatrist, and that my symptoms were consistent with mental illness. I'm a kind, calm person but I was so frustrated and hurt I became apoplectic and ended up dropping multiple f-bombs and was eventually seen by a kind, but unhelpful resident. The summer of 2019 I was actually feeling pretty good minus the usual gut stuff. One GI had previously suggested I get tested for small intestinal bacterial overgrowth (SIBO), which came back positive for hydrogen-dominated SIBO, even though I had no diarrhea, which now I know is exceedingly rare in this type of SIBO. The GI prescribed the antibiotic Rifaximin, which I was skeptical of and held off taking for months. At this point after 15 or so months of almost constant gut discomfort and further research, I thought it could be my savior. I was so wrong. After three days of taking it I started to experience significantly worse symptoms. My GI said this was likely a normal bacterial die-off and completely normal, and it was imperative that I take the full 2-week course. So I pushed on and it completely destroyed me. This was in August 2019 and my symptoms have gradually worsened to this day. It's like it took me to square one. A few good-intentioned but naive family members basically had an intervention with me, and told me they had made an appointment with the Mayo Clinic and would pay for travel and out of pocket medical costs. At this point I had zero hope that they would be able to help, but given my transient crippling anxiety and duration of symptoms, I can't lie and say I wasn't worried that something serious wasn't wrong with my gut (this is even after a number of previous negative tests including a CT-scan). Of course the days of tests at Mayo were all negative. The Mayo docs even scoffed at the SIBO diagnosis and said this was absolutely a false positive. (For what it's worth, the GIs I saw at Mayo also said they don't prescribe probiotics because there's not enough evidence to support their use and they can actually make many conditions worse. I thought this was really interesting.) The GIs there completely agreed and understood the connection with the pscyh drugs, and even though I was relatively regular, concluded my gut issue was likely a motility issue with visceral hypersensitivity. They prescribed daily laxatives that, go figure, made everything worse! The Miralax also caused severe depression and SI after several days of use. I tried multiple rounds of it and the same depression every time. One of the neuro GIs I saw at Mayo talked to me for about an hour, really going into my situation. He was only peripherally knowledgable about psych med discontinuation, but within his knowledge said it makes sense that some people experienced nerve dysfunction (he wouldn't call it damage) for an extended period of time, especially after using these drugs for years. He drew conclusions to relatively common and well-documented cases of nerve dysfunction in people after a severe virus or other ailment, and indicated that most of these people heal within 1 to 2 years. Also, the neurologist I saw prior to Mayo was completely in agreement about the reality of protracted discontinuation syndrome in a minority, but significant number of people. He has theorized that this is autonomic nervous system dysfunction, which I believe has been discussed on the boards, and also mentioned the parallel to other patients with nerve dysfunction who heal within 2 years or so. I finally had to take a leave of absence from work, which was the right decision but still demoralizing. And considering that I've held my Effexor dose for 11 months now, plus had this antibiotic setback 6 months ago and continue to have worsening symptoms, I'm just having a really hard time holding onto any hope. I now think my gut issue is likely comparable to "Benzo Belly", as it's known, even though it started with the discontinuation and reinstatement of Effexor, not that this provides much comfort. I've now been decimated with withdrawal or post discontinuation syndrome for over 2 years now, and greatly struggled with the effects of being polydrugged for the 7 years before. I've also lost 35 pounds of weight I couldn't afford to lose since eating almost all types of food these days seems to aggravate my gut. What a s**t-show. Of all the medical and "alternative" interventions, the literally dozens of supplements including fish oil, magnesium and various probiotics, and other attempted treatments, everything either had no affect or made things worse, sometimes significantly. The only things that have marginally helped (at times) have been distraction, mindfulness (avoiding rumination and staying present), self-CBT (countering negative thoughts), practicing acceptance, and walking/pacing. I could see religion being very helpful, but unfortunately this isn't an option for me; however, I'm not devoid of spirituality and the book When Things Fall Apart is one I recommend. What overwhelms me the most is that even if it takes another year or two to stabilize from my last trauma (the antibiotics), I'm still on 15 mg of Effexor that could also take another several years to get off of, and then I could deal with yet even more years of protracted withdrawal syndrome after that. Ah well, back to mindfulness in the face of dreadful uncertainty and chasing the ever-allusive radical acceptance. Anyway, best wishes to everyone suffering.