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  1. After planning to have a family my whole life, I found that some things are just out of our hands. I had 6 miscarriages, before having a baby boy that suffered from an unknown degenerative neurological disorder. He would have 30-50 seizures a day, was blind, deaf and was in ICU most of his life. The doctors predicted his life expectancy to be 3-4 years, but at 5 months old, he came down with chicken pox, which caused his organs to shut down and he died in my arms. I lost everything I lived for and my dreams of having a family were shattered. I became extremely depressed. I decided to seek medical help for my depression. My doctor prescribed Effexor (Venlafaxine). I didn't feel it was helping, but she said it was, that I just didn't realize how much worse I would be without it and I can't expect to be my normal self again. Every time I said it wasn't helping, she just increased the dose, until I was on the highest dose that could be prescribed, and I remained at that dose for the next six years. All this loss was hard on my marriage. After struggling for a few years, we divorced. I walked away from my marriage, home, life, everything, taking nothing but my dogs and a bag of clothes with me, and started over alone. With nowhere to go, I jumped into another relationship. Six months later, I became pregnant. Since medications can be harmful during pregnancy, I stopped taking the Effexor, following a fast taper as my doctor instructed. I developed unusual problems that I had never experienced before, which caused me to be ill throughout the pregnancy. I didn't learn until years later that what I was experiencing were "brain shivers", or "brain zaps", and it was not related to the pregnancy, but stopping the Effexor. The doctors related my symptoms to stress and put me on bed rest, and I stayed on bed rest or in the hospital throughout most of the pregnancy, until having a c-section at 8 months. I had a small, but healthy, baby boy. However, I continued to feel ill. I described the problem to my doctor multiple times. I was told, word for word, “It’s in your head, go see a shrink”. She blew me off, like she didn't believe me and thought I was crazy. I managed as best as I could, but progressively worsened. I went to several other doctors, but none of them had answers and showed no interest in looking into it. I talked my boss at the time. He was an ear, nose and throat specialist, so it wasn't his specialty, but he had watched my health decline and knew that my symptoms were real and was concerned enough to help. He sent me to several neurologists and other specialists to have tests done. He was worried that it was serious because my symptoms resembled MS or something similar. All the tests came back normal and no diagnosis could be found. It seemed no one had ever heard of anything like this before. My condition worsened until I was no longer able to live a functional life. I struggled to take care of my son and couldn't interact and do things with him as much as I wanted to. I had no idea what was wrong or where to turn for help. Desperate, I searched online. I discovered a forum of people who shared my symptoms, all of which had used Effexor at some point and were unable to get help from their doctors. Many of them were told that their symptoms were psychosomatic, just like my doctor had claimed. A few doctors and nurses on the site acknowledged this was real and provided what information they had. This is where I first learned of the term “brain shivers” and discovered that using Effexor can cause them. The doctors said they are generally mild and typically go away on their own, lasting from weeks to several months. However, they said higher doses over an extended time can result in severe cases that could last years, or even permanently, and so far, there is no known treatment. I continued to struggle with this for a little over two years. Then, I was contacted by an old friend, who was now a psychologist. This call was a turning point for me. I told her about the problems I was having. She knew about brain shivers and was sure that was what I was experiencing. She was concerned that this would likely be a permanent problem for me, since I took such a high dose for so many years, and since I hadn’t had any improvement in over two years. She said there is no known treatment, but tapering off the medication slowly is known to help prevent or reduce the problem. I had been off the medication for over two years already, so it didn't seem logical to introduce the drug into my system again after so long, just to taper it out of my system. She was concerned that it could have an adverse affect, causing my brain to adapt the wrong direction by starting it again, making the problem worse. She said if I went back on the medication to stop the brain shivers, I would likely have to stay on it indefinitely, to keep them from coming back. The thought of taking a medication for the rest of my life that caused me to be permanently disabled without it, just did not sit well with me, especially if it could make the problem worse. And I couldn't get a prescription anyway, since I couldn't find any doctor who was willing to treat me. She told me there is another option I could try, but she could lose her license for recommending it, so not to tell anyone who told me, but to try methamphetamine, because it's a dopamine reuptake inhibitor, and it should stop or greatly reduce the brain shivers. She said as long as I only use enough to stop the brain shivers, it would help me, and that using excessively or more than is necessary is what leads to the negative affects of any drug, legal or not. (Disclaimer… I want to express that I DO NOT recommend using methamphetamine, for any reason. It’s not a solution to brain shivers, it's just an another problem to need a solution for. It comes with its own list of problems, including legal consequences. This choice cost me in many other ways. Looking back, I can't say I would’ve been better off, had I not made that choice, because I couldn't function at all. But I also can’t say I’m better off, for having made that choice. I just replaced the problems I had with different problems. This choice led me down a different path, but it was far from a better path.) It has now been 18 years since I started having brain shivers. I have been using methamphetamine responsibly for the last 16 years, which greatly reduces my brain shivers to a tolerable level and allows me to function. I still have brain shivers once in a while, but they are typically mild, occur less consistently and don’t affect my ability to function in daily life. The only time they bother me is if I miss a dose, or something, such as illness or stress, affects my overall health. Although it allowed me to function, depending on something illegal to function requires committing a crime every day, and it was inevitable that I would eventually get caught. I ended up facing criminal charges. I was lucky enough to have a good attorney who was able to turn a 5-35 year prison sentence into just probation. I was assigned to the best probation officer anyone could ever ask for. If it weren't for her patience and understanding of my situation, I wouldn't have a chance of making it through this without ending up in prison. It is because of the situation I am in, the need to end my dependency to an illegal drug, the inability to do so without help to stop the brain shivers I’ve had for the last 18 years and the kindness, understanding and willingness of my probation officer to patiently work with me to find a solution to my problem, that I have found myself here on this site. My probation officer has helped me in the effort to find a solution through every possible direction we could think of. I have been turned away by detox centers and inpatient treatment centers, either because they don't believe meth causes withdrawals, or due to liability concerns, since quitting will cause me medical problems. I've been turned away by doctors and psychiatrists, when searching for a medication to help the brain shivers, to replace what I'm using, so that I could stop using and hopefully avoid or at least lessen the brain shivers, but they refuse to treat me at all, until I have already quit, which is what I needed the help for. I believe tapering off the drug is the only way to successfully stop using without having severe brain shivers, as I get them every time I miss a dose. I understand that this site is for prescription medications, but I hope it is possible to allow an exception, since my need to taper is due to brain shivers following the use of Effexor. My probation officer approved me joining this site and is willing to be patient to allow me the time to follow this site’s recommendations for tapering, so that I have the best chance of coming out of this situation without using any drug and without severe brain shivers. I am truly blessed that my probation officer is patient and understanding to allow me to try this, since quitting cold turkey will undoubtedly cause serious problems, and I pray that this site will be as understanding and willing to help as well, because this is the best chance I have to turn my life around in the right direction. I never meant to end up in this situation. Sometimes people end up in bad situations, but it doesn't mean they are bad people, they just need a little help.
  2. Hi All - Reading and typing are difficult, so I will try my best to relay what's going on with minimal typos. At the end of January, my psychiatrist used Prozac to begin weening me off of Pristiq (50mg), as the situation calling for meds was better and I was experiencing the haziness and vision problems associated with SSRIs. Over a month, I had discontinued both drugs (last dose of Prozac was 15 days ago). It is now March 10th and all of my symptoms are at their peak, with new ones arising regularly. My worst symptoms at this point are outlined below. I have omitted anxiety from the list because OBVIOUSLY. I am terrified that I am permanently like this. Can anyone else relate to such symptoms or advise on how long they lasted? I will not go back on this poison – but I also cannot go on like this. Any advice and/or support is welcome and appreciated. Good luck to everyone. Vision Blurriness (Made worse by driving) Dizziness/‘Spaced Out’/Fogged Feeling Disequilibrium (feel like a zombie, not ‘myself) Neck & Upper Back Pain (Particularly the top of my neck; stiffness of entire neck) Sensation of Brain “Moving” (Sometimes like a shakiness or bobble head type feeling) Muscle Spasms/Twitches (and general ‘shakiness) Motion Sickness Drunk (in a bad way) Confusion Trouble Concentrating (hurts my brain to try) Memory/Recall Issues Constant Headache (feels like a tension headache) Temple & Ocular Pressure Nausea (constant but generally mild) Occasional Ear Pressure Hair Loss
  3. My Comment: This is the complete letter. The references can be seen via the link. I was interested in what they say about the mechanism, at the end. AFAIK, atomoxetine is an SNRI. It gave me the most horrendous evil feeling in the muscles of my legs that I went to emergency after a few days and almost got locked up. It wasn't pain per se. It was like "expectancy." These novel drugs give us sensations we can't describe, so the doctors describe us as crazy, you know? Prim Care Companion CNS Disord. 2013; 15(2): PCC.12l01427. Published online 2013 Mar 21. doi: 10.4088/PCC.12l01427 A Case of Amelioration of Venlafaxine-Discontinuation “Brain Shivers” With Atomoxetine Jose A. Cortes, PhD and Rajiv Radhakrishnan, MD Full text at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3733524/ To the Editor: Antidepressant discontinuation syndrome is a common syndrome seen following abrupt termination of treatment with a serotonin reuptake inhibitor.1 It occurs at rates ranging from 17.2% to as high as 78% with venlafaxine.2,3 There is, however, little literature on “brain shivers,”4,5 a common antidepressant-discontinuation symptom described by patients taking venlafaxine, duloxetine, citalopram, and paroxetine. Much of the information comes from Internet blogs and Web sites.6–8 The symptom is described variously as “an electrical shock–like sensation in the brain,” “the sensation of the brain shivering,” “brain zaps,” “brain shocks,” “brain shivers,” “head shocks,” or “cranial zings.” The etiology of the symptom is not known, and there is no known treatment for this distressing symptom. We describe a case in which “brain shivers” occurred as part of venlafaxine discontinuation syndrome and abated with atomoxetine treatment. ["we made this man miserable for nothing"] Case report. Mr A, a 34-year-old man, presented with DSM-IV major depressive disorder (MDD) that responded well to venlafaxine (300 mg/d). He achieved remission except for seasonal exacerbations during autumn during the next 4 years. In view of a family history of bipolar disorder, it was decided to add lamotrigine and taper venlafaxine. [idiots] Mr A maintained remission on venlafaxine (37.5 mg/d) and lamotrigine (200 mg/d) without seasonal exacerbations. Mr A abruptly discontinued venlafaxine 37.5 mg/d. On the second day following discontinuation, he reported feeling an unpleasant sensation of “electricity in the head” that “felt like the brain was shaking inside the skull.” Mr A was also noticed to demonstrate emotional incontinence and complained of anhedonia, anxiety, tinnitus, headache, nausea, and increased sensitivity to noise. Since the “brain shivers” were the most distressing symptom, a trial of atomoxetine 40 mg/d was attempted based on the hypothesis that the symptom was a result of noradrenergic imbalance.9 An immediate improvement in “brain shivers” was reported within 2 or 3 hours of taking the first dose. Over the next 3 days, Mr A reported further improvement in “brain shivers” and anhedonia although emotional incontinence and increased sensitivity to noise persisted. Given the severity of other withdrawal symptoms, venlafaxine (37.5 mg/d) was reinstated and atomoxetine was stopped. All withdrawal symptoms disappeared during the next day. [chalk one up for Effexor!] The case adds to the interesting speculation about the noradrenergic imbalance as the basis of “brain shivers.”9 “Brain shivers,” conceptually related to Lhermitte’s phenomenon,10 have also been reported with the noradrenergic drug 3,4-methylenedioxy-N-methylamphetamine (MDMA). The psychotropic effects of MDMA are mediated via norepinephrine transporter11 and results in an increase in synaptic norepinephrine levels. Venlafaxine’s affinity for norepinephrine transporter (K = 2,984 nM),12 is 103-fold lower than that of atomoxetine (K = 5 nM),13 yet venlafaxine causes an increase (242%)14 in synaptic norepinephrine levels comparable to that by atomoxetine (290% ± 33%).13 Curiously, chronic treatment with venlafaxine does not reduce norepinephrine transporter binding sites.15 These facts point to the possibility that increases in synaptic norepinephrine are due to norepinephrine transporter reversal, akin to dopamine transporter reversal associated with amphetamine.16 Abrupt withdrawal of venlafaxine would hence result in paradoxical increase in synaptic norepinephrine via efflux through norepinephrine transporter channels, which is normalized by atomoxetine’s norepinephrine transporter blockade. This speculation of the noradrenergic basis of “brain shivers” warrants further study.
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