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Found 6 results

  1. In hindsight, I realize that I have been challenged most of my life with manic depression, little manic euphoria. I also now see the mental health issues which re-appear throughout my father's side of the family. Suddenly when I was in my mid 40's I started experiencing manic euphoric episodes.I was Baker Acted, mis-diagnosed, had another attack, hospitalized, forced to resign from a lucrative career that was the love of my life. In 2008 was diagnosed with bipolar disorder.( I have been at or below the poverty line since with the work I have been able to perform.) I was prescribed Zypreza and started a long depressed state, lethargic, and weight gain of at least 70 lbs. I was weaned off Zyprexa and have since been prescribed over different times drugs such as Celexa, Saphris, Artane, and Lamotrigine. As I was being taken off Zyprexa, my mood lifted, the weight started coming off but the movement disorder had already started in my face. Initially it was diagnosed by my doctor as tardive dyskinesia. The symptoms have continued to worsen to a now debilitating condition. As recent as yesterday, a new doctor, a neurologist thinks the condition is best defined , diagnosed as dystonia. In any event, the outlook is the same, no known cure. I never in a million years thought I would be so disabled and unable to provide for myself and others. But beside all these recent challenges, my weight is well managed, my spirits are good, my faith is strong. I know who I am. I just wish my body would cooperate!! I am going through the disability process now and as of the end of the month, I will lose my health insurance benefits through my last employer.
  2. If you have a movement disorder (Tardive Dyskinesia , Dystonia, Akathisia, Myoclonus etc.), that you believe was caused by Effexor XR (or made worse by this drug), you are eligible to join a multi plaintiff lawsuit now forming. To join this lawsuit, please message me on this forum, or email me at effexortd@gmail.com. For US residents only. Posted by permission of Group Admin for informational purposes. Posting does not necessarily signify Group endorsement.
  3. Hi all, my story is so very long but the short story is i was on zoloft 50 mg for 15 years (only drug i was ever on). I tried multiple times to get off but would get severe discontinuation syndrome each time so i thought i just had to stay on it for life. I will go into those symptoms if you ask. Anyways about 4 years ago i developed benign fasiculations and resting tremor. It took seeing multiple docs and finally a second neurologist and he said this is common with zoloft. So i had to get off it but i was scared to death because of the severe discontinuation that i would compare to heroin withdrawal. So i was so scared i never went back to the doctor and thought maybe i can live with BFS and the tremor. But then my neurological symptoms got worse and led to parkinsons which was drug induced and dyskinesia. The facial grimacing was way more annoying than the fasiculations and it affected my blood pressure too, thats how parkinsons works, it affects the autonomic system so i had bad orthostatic hypotension and that was dibilitating but somehow i pushed through. I had many more issues, if you ask i can write about them. Anyways this time i was ready to get off zoloft so i go to the doctor and he says "wow you've been on it for 15 years" and i thought "WOW you idiot. Your office is the one who has been prescribing this to me all these years". They never once told me to make an appt if i hadnt been there in a few years, they just kept refilling it. They should require patients to have biyearly appts and check them for neurological signs and if the patient doesnt make an appt than they should not get a refill. I am very mad at my poor healthcare and management (total lack thereof) but again my story is so long i can write it if you ask. Anyways my doc said to wean off over like 2 months. That was too fast so i did it on my on and weaned off 50 mg over a 6 month period and for the first time i did not get discontinuation syndrome! I was scared to death but i did it and was shocked i did not get discontinuation. Weaning that slow is the answer. I only had some mild things like some mood swings, swollen lymph nodes which always happens when i wean off for some reason, headaches, i can go into detail if you ask. My neurological disorders are also going away. I am 20 days off zoloft and feel great and i would say my neurological issues are like 80% better and i hope to recover completely with time (i might have permanent damage). Anyways i am posting because i am very angry at the healthcare community for their lack of knowledge on how zoloft, though rare, does cause dyskinesia, BFS, and parkinsonism. Docs do not seem to know to look for these signs and put a stop to it before irreversible damage occurs which is a disability. They are too freely handing out these meds to your average person with basic stress that can actually manage without meds like seeking CBT, meditation, yoga, qigong, etc. i am one of those type of people. Patients are never checked up on on these meds. I know personally from working in gastroenterology for years that almost everyone is on anxiety or antidepressants and that to me is a crime because every single one of them are having unexplained problems with a lot of expensive negative testing and they are frustrated but no one is relaying it is the medication causing it and how imperitive it is to get off it. I am against all these meds (unless the patient has true mental disorder like bipolar or is in a stage of suicidal ideation etc). I am just very angry. For me, to address that, i want and need to raise awareness but i feel no one would believe my story because it is so rare but i think more common than we know because it is being unreported and doctors dont know enough to spot tardive dyskinesia etc so it takes years. Anyone else with a story like mine?
  4. Recently my psychiatrist upped Abilify to the max dose 30mg. I am also taking Celexa 40 mg. Have been taking psychiatric drugs for 10 years now. Have tried to withdrawal by myself in the past and schizoaffective symptoms come back worse. Now I am scared of taking the drugs because my tongue keeps moving back and forth in my mouth, and I am afraid of making it worse. Can I just stop the medications and when I start experiencing withdrawal symptoms, just take a smallest dose possible to alleviate the withdrawal symptoms, as I wean off them? I have a family history with lots of schizophrenia, and it seemed to help with somewhat, and people said I seem better on them. But now want to try to go off and try alternative therapies/natural diets.
  5. This may be short, as I just took my evening Clonazepam dose which seems to be the only thing that relaxes my neck muscles (eventually) so that I can stay asleep. It often takes effect by giving me thirty or so seconds of warning that I am about to drop off. So I apologize if I accidentally post gibberish; I don't always get enough notice to put the iThingy down and the random key presses that result might post or just erase all my hard work. But I found this website this evening: Dystonia Medical Research Foundation I wanted to share it because it is a very useful resource so far as I have made use of it. But also because reading the info there seems revelatory and I am too hyper to go to sleep without shouting from some rooftop or another first. I could go into great detail--and I might--but in essence the descriptions of many of the typical symptoms of secondary/tardive dystonia are reading like the solution to this giant puzzle I have been trying to solve for a year and a half and I am at once relieved and angered by the possibility that this could be what is going on with my face, eyes, jaw, neck, shoulders, and the occasional twitchy muscle lower to the ground than chest level. Jaw wants to clamp shut day and night: yes that could be dystonia! Eyes sensitive to light when eye and other muscles freaking out: yes that could be dystonia! Painful spasms that follow cyclical but still unpredictable patterns almost exclusively from the neck up: yes! That could be... Etc. Oh and the Inexplicable fatigue: involuntary muscle contractions are just as energy intensive as voluntary ones. Dystonia may make me feel as though I were working out 18-24 hours a day every single day! It would even explain my voracious appetite for protein, which is much like it was when I did work out regularly. The nausea that interferes with my current efforts to stay fed is still a mystery I guess, although I do want to investigate any relation between constant muscle activity and dehydration since it gets worse if I am without water for long and that aggravates any nausea trying to crop up at the time. The question nobody can answer is why a psychiatrist who took his patient off olanzapine after more than twelve years because that patient was beginning to twitch in a Tardive Dyskinesia sort of way would continue to insist that muscle spasms, pain, and fatigue that have not remitted since the drug was discontinued were "not the Zyprexa". I will concede that I may be fixated on this single etiology to the exclusion of other possibilities, but I still find it appalling that he suggested I get checked for mono when I mentioned fatigue (again) this last time around. So anyway. Please bear with the enthusiasm; it is true that there is no cure for tardive dystonia, but for once in what seems like a lifetime of trying to claim appropriate names for myself, I am very keen to find out if this is indeed a socially-recognizable one for the bulk of what currently ails me. I am vacationing in Seattle right now, but will be looking for a neurologist and/or movement disorder specialist when I return to San Francisco. In the meantime I will text this and a few other links to my MD and my therapist to see if they see me in these symptoms as well as I do. I am also going to take my shiny new Medicare card and go shopping for a different psychiatrist. Tardive Dystonia. I understand why I had never heard if it, but prescribing neuroleptics without having heard of it? I know: the propaganda is no respecter of educative rank, but it took only two google searches as to the current knowledge of tardive dyskinesia for me to come across it. Ok I think I might be sleepy enough to ignore the perpetual shrug that my shoulders find themselves fixed in. I hope that the link is helpful to someone else too.
  6. If you are able to walk, count your blessings. Regardless of if you are too depressed to walk or don't want to walk, please count your blessings if you're physically CAPABLE of walking. My movement disorder is so bad that if I walk more than a few steps, my legs buckle and my whole body starts to wiggle. I can only walk up and down the hallway of my house 3-5 times a day, maximum. Before meds, I used to be a runner, swimmer, bicyclist, dancer, figure skater, and weight lifter. The tricyclic antidepressants and benzo destroyed me so badly that now I can't even walk because I have lost control of my legs and arms. If I leave my house, my family pushes me in a wheelchair so that I don't flop everywhere in public. So if you are physically capable of walking, do it and be grateful, and while you are out walking to help yourself through WD, say a little prayer that one day I will be able to walk again, too. And if I ever am able to again, I will pray and think good things about you when I am walking. I know that it is hard for many people to exercise while in WD, but if you are able to walk, DO IT and count your blessings. It will only help your recovery.

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