monstergirl2768
Member
Hello -
I posted a week ago or so, and found the experiences on this board to be of great solace, reading about symptoms that seemed so similar to my own. But, part of me was secretly hoping that as soon as I had figured out that I didn't have the dreaded ALS or MS, my twitching and strange sensations would magically disappear. I had a few days of feeling that "the noose was lifted" as someone else described it. Even the twitching subsided to the point of just a few when my legs or arms were relaxed. But now, I am convinced that even if these sensations are benign, there is SOMETHING happening, and my mental health has deteriorated to the point of possibly harming myself. Two nights ago I had visualized slicing my calves with a knife in frustration - I can no longer sit still and work at the computer, watch TV, or lie in bed without the buzzing and twitching. But let me back up to when the first occasion of "something wrong" hit me, and what may have caused it.
For the past year, I have been participating in a drug study designed to treat low libido in pre-menopausal women. (That's another story in and of itself). Six months open label, six months double blind. The drug, flibanserin, was originally designed to be a non-SSRI anti-dipressant; a new alternative to SSRIs. It didn't work so well to alleviate depression, but it did seem to have a remarkable effect on sex drive. So of course the drug company re-directs the research in order to tap this potential gold mine. The side effects were listed as somnulence(sleepiness) and, in high doses, increased bleeding or blood thinning. No reports of SSRI-like problems when the drug is stopped - that was one of my main concerns going into the study and they assured me that as yet, nothing had been reported. I had no problems with the open label drug and even noticed a small benefit. In November, I was switched to double-blind. So, I have no idea what I've been taking - drug or placebo - since then. Some time in the winter (maybe around the time I switched) I had some "shock" sensations in my head, very mild, kind of like the "zing" you get when startled by a loud noise. Probably lasted a week or two, worried me a tiny bit, but not a great deal. Then, after that went away, I noticed my right hand and foot feeling "funny", not weak, just different in some way. This too disappeared (or I got used to it) after a while. Then, in March, the twitches started. First my lips - the left upper, then the right (never both at once). Then the occasional crawly feeling in my calves. Occasional numb spot on my right big toe. Occasional numb feelings in my thumbs when I bent them. Weird, and of course I thought of the BIG TWO scary diseases, but the fear didn't totally kick in until the tingling and twitching in my calves became fairly constant. Then I hit google, and unleased the devil, as another poster so aptly stated.
Okay, so where am I now, besides wanting to cut out the parts of my body that are freaking me out? I saw a lovely urgent care doctor the morning after I thought about taking a knife to my calves. He didn't see any weakness in my hands or my feet & calves. He actually called a neuro right then, and ordered up a bunch of blood tests, and the neuro told him (over the phone) that it didn't sound like I needed an MRI. The problem is getting an appointment with the neuro - we are in a small city with few specialists, so I am cooling my heels until May 25th, and in the meantime, trying to figure out a way to answer my original questions - why me, why now, and what the hell is happening to me? I went to the gym this morning and had a normal workout. Being in constant motion is soothing to me because I absolutely do not twitch while exercising. I do have some weakness (and it may be a sensation rather than real weakness) in my right forearm, and as I type this, my right hand is getting tired, and I am SO TIRED of thinking about this and I need to get a grip on reality.
As for the drug - as soon as I decided to see a doctor about the twitches, I stopped taking the pills. I saw the study doctor yesterday and reported the problem - he said to keep him posted, but he didn't think my symptoms were related to the drug. If I did in fact stop the drug back in November, and have been on a placebo all this time, then why is this manifesting itself now, six months later?
If anyone has any thoughts, words of encouragement, information about the drug I was taking, I would love to hear it. I am walking a fine line here between having a good attitude and wanting to jump off a cliff. I really appreciate this board and it feels like a lifeline right now!
--Keri
I posted a week ago or so, and found the experiences on this board to be of great solace, reading about symptoms that seemed so similar to my own. But, part of me was secretly hoping that as soon as I had figured out that I didn't have the dreaded ALS or MS, my twitching and strange sensations would magically disappear. I had a few days of feeling that "the noose was lifted" as someone else described it. Even the twitching subsided to the point of just a few when my legs or arms were relaxed. But now, I am convinced that even if these sensations are benign, there is SOMETHING happening, and my mental health has deteriorated to the point of possibly harming myself. Two nights ago I had visualized slicing my calves with a knife in frustration - I can no longer sit still and work at the computer, watch TV, or lie in bed without the buzzing and twitching. But let me back up to when the first occasion of "something wrong" hit me, and what may have caused it.
For the past year, I have been participating in a drug study designed to treat low libido in pre-menopausal women. (That's another story in and of itself). Six months open label, six months double blind. The drug, flibanserin, was originally designed to be a non-SSRI anti-dipressant; a new alternative to SSRIs. It didn't work so well to alleviate depression, but it did seem to have a remarkable effect on sex drive. So of course the drug company re-directs the research in order to tap this potential gold mine. The side effects were listed as somnulence(sleepiness) and, in high doses, increased bleeding or blood thinning. No reports of SSRI-like problems when the drug is stopped - that was one of my main concerns going into the study and they assured me that as yet, nothing had been reported. I had no problems with the open label drug and even noticed a small benefit. In November, I was switched to double-blind. So, I have no idea what I've been taking - drug or placebo - since then. Some time in the winter (maybe around the time I switched) I had some "shock" sensations in my head, very mild, kind of like the "zing" you get when startled by a loud noise. Probably lasted a week or two, worried me a tiny bit, but not a great deal. Then, after that went away, I noticed my right hand and foot feeling "funny", not weak, just different in some way. This too disappeared (or I got used to it) after a while. Then, in March, the twitches started. First my lips - the left upper, then the right (never both at once). Then the occasional crawly feeling in my calves. Occasional numb spot on my right big toe. Occasional numb feelings in my thumbs when I bent them. Weird, and of course I thought of the BIG TWO scary diseases, but the fear didn't totally kick in until the tingling and twitching in my calves became fairly constant. Then I hit google, and unleased the devil, as another poster so aptly stated.
Okay, so where am I now, besides wanting to cut out the parts of my body that are freaking me out? I saw a lovely urgent care doctor the morning after I thought about taking a knife to my calves. He didn't see any weakness in my hands or my feet & calves. He actually called a neuro right then, and ordered up a bunch of blood tests, and the neuro told him (over the phone) that it didn't sound like I needed an MRI. The problem is getting an appointment with the neuro - we are in a small city with few specialists, so I am cooling my heels until May 25th, and in the meantime, trying to figure out a way to answer my original questions - why me, why now, and what the hell is happening to me? I went to the gym this morning and had a normal workout. Being in constant motion is soothing to me because I absolutely do not twitch while exercising. I do have some weakness (and it may be a sensation rather than real weakness) in my right forearm, and as I type this, my right hand is getting tired, and I am SO TIRED of thinking about this and I need to get a grip on reality.
As for the drug - as soon as I decided to see a doctor about the twitches, I stopped taking the pills. I saw the study doctor yesterday and reported the problem - he said to keep him posted, but he didn't think my symptoms were related to the drug. If I did in fact stop the drug back in November, and have been on a placebo all this time, then why is this manifesting itself now, six months later?
If anyone has any thoughts, words of encouragement, information about the drug I was taking, I would love to hear it. I am walking a fine line here between having a good attitude and wanting to jump off a cliff. I really appreciate this board and it feels like a lifeline right now!
--Keri