Posted by HopelessAgony on December 7, 2011, at 2:12:04
I will try to keep this post as brief as I can, but unfortunately to establish my situation in the detail required for anyone to make any kind of informed comment it will need to be significantly longer than most messages I have seen on this site. Thank you in advance, if you decide to make an attempt to get through it.
I have suffered from a variety of disabling neurological symptoms for going on six years, beginning in approximately February of 2006. Around that time I suffered from some type of flu-like illness, but of a much more severe type than anything I had experienced before. During the illness I began suffering from intense headaches/neurological pain, panic attacks, vertigo, muscle spasms and twitching, and derealization/depersonalization, all of which persisted to some degree after the febrile portion of the illness was gone. The chronic vertigo/dizziness was the most persistent and devastating symptom, and I lost my job because of it. No conclusive diagnosis or cause of the symptoms I suffered was ever found, and though I was treated for possible Lyme disease with antibiotics for some time it never really made a dramatic difference in my symptoms. I was also prescribed benzodiazepines and Lexapro, which didn't really help my symptoms much either, but did lead to my becoming physically dependent on the benzodiazepines.
I will now move the story forward to late 2007. After a terrible acute withdrawal episode from the benzodiazepine I was taking (running out of Ativan, no way to get prescription refilled) I decided that it would be best to attempt to withdraw completely from the medication. I switched over to Valium and tapered off the medication over a period of many months. At some point along the line I ended up on 200 mg Seroquel. It was difficult, but I managed to complete the benzo taper by the end of 2008. I also spent some time doing vestibular rehabilitation therapy, and the combination of the two actions did pay off by early 2009 I was virtually free of vertigo, panic attacks, and derealization. It was the best I had felt in a long time. I wasn't 100%, yet, however, so the psychiatric nurse practitioner I was seeing at the time suggested I try a bit of a non-addictive antipsychotic called Zyprexa in lieu of the Seroquel. I started on 2.5 mg. This was a big mistake.
By mid 2009 I could feel things deteriorating again. My sleep worsened, and I found it more and more difficult to maintain a normal sleep schedule. I found myself not able to fall asleep until later and later, until I wasn't falling asleep until 8 or 9 o clock in the morning, and was waking up at 5 in the evening. All my attempts to maintain a normal sleep schedule failed - my body was determined to only sleep during the day. I gained fifteeen pounds. I started getting painful cystic acne all over my forehead, back, and chest. I started feeling derealization again.
In late 2009 I decided to try to ditch the Zyprexa. I figured it was such a small dose I could just do it cold turkey it certainly couldn't be worse than what I went through when I finally jumped off the benzos. Of course, I was terribly wrong. The first night off, I didn't sleep very much. The next day, the horrible pressure in my head started. By the end of the next day, I had a fever of 101, and my anxiety was through the roof. My muscles had started to stiffen up, and mucus was pouring out of my nose. I went back on the pill, and these symptoms quickly resolved.
To shorten the story somewhat, I failed two attempts at tapering the drug in the period from late 2009 to mid 2010. One of these attempts landed me in the hospital. Of course, they could do nothing for me. As a consequence of that attempt, I also now suffer from chronic agoraphobia and am more limited in the distance I can go from my home to seek help.
In December of 2010 I began my third taper attempt, which I have come to refer to as The Long Defeat. It involves a milligram scale, a mortar and pestle, and carefully grinding the tablet into a fine powder which I then measure out. I've been aiming for a tapering rate of approximately 3-5% a month, and have in general met that goal. I am currently taking less than half a 2.5 mg pill, which is uncharted territory for me as I have never been on such a small dose since beginning the medication.
However, the taper has been extremely difficult. I chronically suffer from devastating neurological symptoms such as headaches, insomnia, the aforementioned agoraphobia, painful fasciculations and muscle spasms, and fatigue. I often get some kind of spasms in my legs and feet that causes the muscles to shake and twitch violently and uncontrollably, like some kind of dystonia. Electric shock sensations in my head and ears. I constantly feel like my nervous system is in overdrive and hyperactive, and good days are few and far between. I have severe derealization constantly. I am unable to work or go to school.
As bad as this sounds, sometimes things get much, much worse. On occasion I experience a kind of neurological pain that's so terrible I don't even know if there is a word to describe it. I haven't been able to find anything in any medical literature online that describes this particular symptom. It doesn't exactly feel like pain in the traditional sense of the word it is like an unberable tearing, twisting sensation in the brain that is unrelenting and remorseless, like your mind is being torn apart from the inside out. Akathisia is the only word that comes anywhere near describing what the symptom feels like, but it doesn't exactly match. I don't have any urge to move my body. Just a terrible internal sensation. This sensation will go on, at varying levels of intensity, for day after day or a week until it finally dies down. If it didn't die down eventually, suicide would be the only option.
Over the past summer I had one of these episodes that was extremely persistent, and after a time I found myself experiencing the same kind of symptoms I experienced when I tried to cold turkey off benzodiazepines. I spent all of July and August in what for all intents and purposes felt like acute benzodiazepine withdrawal. But I haven't taken any benzos in over two years.
I have not been in contact with the nurse practitioner who prescribed the Zyprexa, since I was dropped as a patient after I developed agoraphobia. I have managed to see both a psychiatrist and a neurologist at some point in the past year, and have had bloodwork done. There were no problems except an elevated cholesterol level. The neurologist basically referred me to another neurologist at another major local hospital to have MRIs and CT scans done because of the agoraphobia this has so far been impossible. Meetings with the psychiatrist were also not fruitful. He stated that anyone should be able to quit Zyprexa cold turkey if they want to with no problems, and that my symptoms were just due to an anxiety disorder. I asked how an anxiety disorder could cause shaking muscle spasms in my legs. Eventually he said I don't know what your real problem is exactly, but I bet you're going to suffer for a really long time! All other psychiatrists in my local area are either fully booked, or do not accept Medicare.
I have very little support from my family in this endeavor, and I have not had any friends or social life in many years. The only thing that keeps me going through every long night after night of intense suffering is the hope that if I can somehow complete the medication taper I will have a chance at recovery. I feel certain that the medications I have taken over the years have left me with some form of brain damage, and this taper is my final gamble in hopes of having better days in the distant future. Sometimes, though, like these past few days, lying in bed with nothing but the pain I feel I might try anything to make it stop. Something like Remeron or Trazodone, something with a similar receptor action profile as Zyprexa, that I might use to make things easier. Then taper off the secondary medication. But I'm terrified of just compounding the damage.
If you made it this far, thank you. Any advice or suggestions would be welcome.
poster:HopelessAgony
thread:1004359
URL: http://www.dr-bob.org/babble/20111120/msgs/1004359.html