Severe neck muscle tension. Botox?
July 1, 2007 11:19 AM Subscribe
I have intense, constant muscle tension on the right side of my neck. I think Botox will help, but my neurologists think it won't. Either convince me they're right or convince me I'm wrong. Oh, and is the anticholinergic drug I took three days ago making this problem worse? If so, what do I do about it?
Background: I have a laundry list of health problems, most of them apparently stemming from fibromyalgia/chronic fatigue syndrome. For various reasons, I've recently been focusing on the following issue...
On the right side of my neck, there's a muscle (probably the
sterno-cleido-mastoideus or SCM ) that is at all times contracted, tense, taut, concrete-like, clenched, as if there's
an orangutan on crack yanking on it. If you've ever been extremely stressed and felt tension in your shoulders or neck, it's like that, except about forty times worse. It is intensely aggravating, preventing me from relaxing or sleeping soundly, among other activities. It causes tension in the surrounding muscles and, at times, it generates neck pain and severe headaches. I've tried dozens of treatments: nothing has worked. All stimulants and dopamine enhancers make it worse: caffeine, Ritalin, Sinemet, etc. They cause the orangutan to pull twice as hard.
I can relax the left side of my neck, but then my head turns violently to the right, yanked by the misbehaving muscle. During these movements, my mental functioning is not impaired (well, no more so than normal) and no doctor I've seen has thought this was epilepsy. During these movements, an intensely unpleasant, squirmy, restless sensation travels down my spine. Sometimes my legs and arms will start jerking as well.
I've recently seen two different neurologists regarding this problem. I thought they'd diagnose dystonia, (a class of "movement disorders in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures") but neither did, one of them citing the fact that the aforementioned SCM was not hypertrophied (presumably a diagnostic criteria). And unfortunately, they didn't really come up with any other diagnoses either. One seemed to think there was an outside chance it could be a motor tic. However both did point out that my right shoulder is elevated (something I'd never noticed before) and one of them noted that the back-right side of my neck was hard and tense to the touch.
Dystonia is usually treated with injections of Botox, a toxin that partially paralyzes the problem muscle. At least one of the neurologists is willing to try this treatment, but neither of them
think it's going to work. I'll most likely have to wait at least two or three months for the shot and then, of course, there's the risk of side effects. Oh, and if the first try isn't successfulI'm right, how did both of these guys come to the wrong conclusion? What did they miss?
And oh yeah, if my problem isn't dystonia what the heck else could it be? Are there other conditions in which muscles remain in a permanent state of contraction? Or is such a state the very
definition of dystonia?
Part of me worries that during my exams I spent too much time describing the involuntary movements (from where I sit, a very small part of the problem) and not enough explaining the intense muscle tension/spasm (from where I sit, an enormous problem). Perhaps they just never heard me tell them about the orangutan in there, tugging away. I'm prone to give fifty word answers when five words would do fine, ask lots of questions, etc. After listening to me babble for twenty or thirty minutes, it's possible the forest got buried in the trees. Or maybe I explained the muscle tension just fine and they simply didn't believe me. Wouldn't be the first time. I'd talk to them about all of this but I have evidence that they already regard me as a bit of a pain in the ass, a patient who diagnosed himself based on shit he read on the internet and doesn't want to hear anything different. (Certainly I can understand why a doctor would find that annoying). I can't afford to piss these guys off any further, otherwise I'll have to start over with yet another neuro. So before I start asking questions that make it sound like I want to pick a fight, I'd appreciate some advice.
Question #2.
One of the docs prescribed an anticholinergic (a drug that reduces levels of acetylcholine) called Artane (Trihexyphenidyl) . He thought it was worth a try. I took one MG about three days ago. For the first few hours, I thought it might be helping the muscle tension just a wee bit . But then the muscle tension got a lot worse and has remained so ever since. I've read up on the drug, but I'm having a difficult time parsing some of the info. What I need to know is... do anticholinergics ever have a rebound effect? That is, can they trigger an upsurge in acetylcholine on their way out the door? And if they do, how would one deal with such a thing? I know, I know... I should tell my doctor. But I'm ninety percent sure they'll just tell me that this couldn't be a side effect of the drug and make a mental note that I'm even crazier than they originally thought.
Alright, that's everything. I'm happy to provide more details and answer questions and if you have any advice, please feel free to dispense. Also, if you think it's warranted, you're welcome to email me privately. My address is in my profile.
Background: I have a laundry list of health problems, most of them apparently stemming from fibromyalgia/chronic fatigue syndrome. For various reasons, I've recently been focusing on the following issue...
On the right side of my neck, there's a muscle (probably the
sterno-cleido-mastoideus or SCM ) that is at all times contracted, tense, taut, concrete-like, clenched, as if there's
an orangutan on crack yanking on it. If you've ever been extremely stressed and felt tension in your shoulders or neck, it's like that, except about forty times worse. It is intensely aggravating, preventing me from relaxing or sleeping soundly, among other activities. It causes tension in the surrounding muscles and, at times, it generates neck pain and severe headaches. I've tried dozens of treatments: nothing has worked. All stimulants and dopamine enhancers make it worse: caffeine, Ritalin, Sinemet, etc. They cause the orangutan to pull twice as hard.
I can relax the left side of my neck, but then my head turns violently to the right, yanked by the misbehaving muscle. During these movements, my mental functioning is not impaired (well, no more so than normal) and no doctor I've seen has thought this was epilepsy. During these movements, an intensely unpleasant, squirmy, restless sensation travels down my spine. Sometimes my legs and arms will start jerking as well.
I've recently seen two different neurologists regarding this problem. I thought they'd diagnose dystonia, (a class of "movement disorders in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures") but neither did, one of them citing the fact that the aforementioned SCM was not hypertrophied (presumably a diagnostic criteria). And unfortunately, they didn't really come up with any other diagnoses either. One seemed to think there was an outside chance it could be a motor tic. However both did point out that my right shoulder is elevated (something I'd never noticed before) and one of them noted that the back-right side of my neck was hard and tense to the touch.
Dystonia is usually treated with injections of Botox, a toxin that partially paralyzes the problem muscle. At least one of the neurologists is willing to try this treatment, but neither of them
think it's going to work. I'll most likely have to wait at least two or three months for the shot and then, of course, there's the risk of side effects. Oh, and if the first try isn't successful
And oh yeah, if my problem isn't dystonia what the heck else could it be? Are there other conditions in which muscles remain in a permanent state of contraction? Or is such a state the very
definition of dystonia?
Part of me worries that during my exams I spent too much time describing the involuntary movements (from where I sit, a very small part of the problem) and not enough explaining the intense muscle tension/spasm (from where I sit, an enormous problem). Perhaps they just never heard me tell them about the orangutan in there, tugging away. I'm prone to give fifty word answers when five words would do fine, ask lots of questions, etc. After listening to me babble for twenty or thirty minutes, it's possible the forest got buried in the trees. Or maybe I explained the muscle tension just fine and they simply didn't believe me. Wouldn't be the first time. I'd talk to them about all of this but I have evidence that they already regard me as a bit of a pain in the ass, a patient who diagnosed himself based on shit he read on the internet and doesn't want to hear anything different. (Certainly I can understand why a doctor would find that annoying). I can't afford to piss these guys off any further, otherwise I'll have to start over with yet another neuro. So before I start asking questions that make it sound like I want to pick a fight, I'd appreciate some advice.
Question #2.
One of the docs prescribed an anticholinergic (a drug that reduces levels of acetylcholine) called Artane (Trihexyphenidyl) . He thought it was worth a try. I took one MG about three days ago. For the first few hours, I thought it might be helping the muscle tension just a wee bit . But then the muscle tension got a lot worse and has remained so ever since. I've read up on the drug, but I'm having a difficult time parsing some of the info. What I need to know is... do anticholinergics ever have a rebound effect? That is, can they trigger an upsurge in acetylcholine on their way out the door? And if they do, how would one deal with such a thing? I know, I know... I should tell my doctor. But I'm ninety percent sure they'll just tell me that this couldn't be a side effect of the drug and make a mental note that I'm even crazier than they originally thought.
Alright, that's everything. I'm happy to provide more details and answer questions and if you have any advice, please feel free to dispense. Also, if you think it's warranted, you're welcome to email me privately. My address is in my profile.
This Google Scholar search might be of help with the question on withdrawal from anticholinergics. I know little about the condition you describe, but just naively looking at this, it seems unlikely that taking an anticholinergic once would produce withdrawal symptoms. But then again, I don't have all the details.
More generally, it sounds like you've got a condition that either requires an expert and/or a lot of research and experimentation to work on. Don't argue with your neurologist; if you can, find a better one. Go on Google Scholar/Pubmed, do a search for the keywords associated with your health condition, and look at the most commonly listed authors. Some of these people will be clinicians; maybe you can go see them.
But perhaps the best thing is for you to try learning about this yourself. It sounds like you're in school; could you take classes or do research in this field? It sounds like you already know some of the basic science; the more you have, the faster you'll be able to figure this out. Perhaps you've acquired your knowledge by reading through stuff on Google; this will help to a certain extent, but you'll go much farther if you learn your neuroanatomy, physiology, and pharmacology in a systematic way, and then go tackle the problem. (Again, I'm speaking without knowledge of exactly how much you know.) I think a lot of these medical mysteries can be solved with enough experimentation, thought, and research. It just requires a doctor who knows their stuff and actually cares about making you better, and an informed and proactive patient.
I wish you good luck in returning to health.
posted by wireless at 12:00 PM on July 1, 2007
More generally, it sounds like you've got a condition that either requires an expert and/or a lot of research and experimentation to work on. Don't argue with your neurologist; if you can, find a better one. Go on Google Scholar/Pubmed, do a search for the keywords associated with your health condition, and look at the most commonly listed authors. Some of these people will be clinicians; maybe you can go see them.
But perhaps the best thing is for you to try learning about this yourself. It sounds like you're in school; could you take classes or do research in this field? It sounds like you already know some of the basic science; the more you have, the faster you'll be able to figure this out. Perhaps you've acquired your knowledge by reading through stuff on Google; this will help to a certain extent, but you'll go much farther if you learn your neuroanatomy, physiology, and pharmacology in a systematic way, and then go tackle the problem. (Again, I'm speaking without knowledge of exactly how much you know.) I think a lot of these medical mysteries can be solved with enough experimentation, thought, and research. It just requires a doctor who knows their stuff and actually cares about making you better, and an informed and proactive patient.
I wish you good luck in returning to health.
posted by wireless at 12:00 PM on July 1, 2007
Also, there should be forums on the internet where people discuss this specific health condition. Those could be a very useful resource.
posted by wireless at 12:01 PM on July 1, 2007
posted by wireless at 12:01 PM on July 1, 2007
i wonder if the chronic tension in your neck isn't pulling your spine a wee bit out of alignment. the jerking when your head turns suddenly might be because your spine is shifting a little and irritating your nerve roots.
i don't know if botox would help you, but i would definitely see a physiatrist or an orthopedist, and see if physical therapy might help.
posted by thinkingwoman at 1:36 PM on July 1, 2007
i don't know if botox would help you, but i would definitely see a physiatrist or an orthopedist, and see if physical therapy might help.
posted by thinkingwoman at 1:36 PM on July 1, 2007
On the basis of what happened to you when you took the Artane, I would say you SHOULD NOT have Botox treatments.
Acetylcholine receptors are divided into two types, muscarinic and nicotinic. Artane blocks the muscarinic type. But the somatic muscles, such as the SCM muscle in spasm in your neck, do not have muscarinic receptors, they have the nicotinic type (all this if I'm reading your links correctly).
Therefore, the Artane should have had little direct impact on the tension in that muscle. Instead, it made it much worse.
To me, that implies that the spasm in your SCM muscle is your body's attempt to compensate for a failure or under performance of a muscle or group of muscles with muscarinic receptors.
If you take Botox, that compensation will be lost at least for months, and who knows what will happen then.
Also, you should on no account withhold information about your response to medication from your doctor.
posted by jamjam at 2:17 PM on July 1, 2007
Acetylcholine receptors are divided into two types, muscarinic and nicotinic. Artane blocks the muscarinic type. But the somatic muscles, such as the SCM muscle in spasm in your neck, do not have muscarinic receptors, they have the nicotinic type (all this if I'm reading your links correctly).
Therefore, the Artane should have had little direct impact on the tension in that muscle. Instead, it made it much worse.
To me, that implies that the spasm in your SCM muscle is your body's attempt to compensate for a failure or under performance of a muscle or group of muscles with muscarinic receptors.
If you take Botox, that compensation will be lost at least for months, and who knows what will happen then.
Also, you should on no account withhold information about your response to medication from your doctor.
posted by jamjam at 2:17 PM on July 1, 2007
Response by poster: Thanks very much to everyone who has posted. Several interesting comments to which I'm hoping to respond.
For the moment, though, I'd just like to answer BrotherCaine's question:
Torticollis is actually another name for cervical dystonia, which the neurologists are saying I don't have. But yeah, on first glance, it certainly sounds like a good match, doesn't it?
posted by Clay201 at 5:45 PM on July 1, 2007
For the moment, though, I'd just like to answer BrotherCaine's question:
Torticollis is actually another name for cervical dystonia, which the neurologists are saying I don't have. But yeah, on first glance, it certainly sounds like a good match, doesn't it?
posted by Clay201 at 5:45 PM on July 1, 2007
My advice is head to a teaching hospital. If you have to, show up in the emergency room and tell them you're there because your symptoms have worsened. Be patience and be prepared to wait. You will soon have several Neurology residents and/or fellows happily doing a complete workup. You'll also be sent home with a referral to their neurology clinic.
posted by TorontoSandy at 6:02 PM on July 1, 2007
posted by TorontoSandy at 6:02 PM on July 1, 2007
You'll probably head off a flood of well-meaning but unhelpful answers if you list the treatments you've already tried.
posted by flabdablet at 6:05 PM on July 1, 2007
posted by flabdablet at 6:05 PM on July 1, 2007
Teaching hospital is what I thought of immediately as well. However, my doctor friends all say to avoid checking yourself into a hospital or visiting an emergency room during July, as that is when the new residents come in, they know the least, and mistakes are most frequent. But, you also might get a more thorough/less pigeon-holed diagnosis. Just something to keep in mind. You just don't want them to mess up, the neck is a tricky area.
I have never tried accupuncture myself, but you may want to see a well-recommended accupuncture specialist, I've heard great things about what they can do for back muscle problems. I really hope you get some relief soon, I can't even imagine how hard it must be for you to get a good night's sleep.
posted by Eringatang at 7:34 PM on July 1, 2007
I have never tried accupuncture myself, but you may want to see a well-recommended accupuncture specialist, I've heard great things about what they can do for back muscle problems. I really hope you get some relief soon, I can't even imagine how hard it must be for you to get a good night's sleep.
posted by Eringatang at 7:34 PM on July 1, 2007
Clay 201, I feel bound to tell you that after I commented, I looked around for direct, unequivocal confirmation of my assertion that the SCM has nicotinic receptors and not muscarinic, but did not find it.
You mention you have chronic fatigue, and it occurred to me a fairly recent finding might conceivably bear on your situation. A doctor at Johns Hopkins, in a study published in the Journal of Pediatrics in 2002, reported that:
Sixty percent of the 60 children and teens they treated for chronic fatigue syndrome also had hypermobility in at least four of their joints. Only 20 percent of the general public has a single hyperflexible joint, such as being able to bend a pinkie 90 degrees backward, touch the thumb to the forearm, or bend at the waist and rest both hands flat on the ground.
If that hypermobility means these patients have more flexible collagen in general, which seems very probable, and if you have very flexible joints, the collagen in your spine may also be very flexible, which could mean your vertebrae are unusually subject to displacement and you compensate for this by chronic muscle spasm in order to stabilize your spine.
There's another possibility I'm a little reluctant to bring up because I 'm not sure how controversial it is, but I know many people with CFS think they have reduced blood flow to the brain because of some form of hyperviscosity of their blood.
Collagen surrounds your blood vessels, and very flexible collagen and hyperviscosity are a recipe for expanded arteries and capillaries as your blood pressure rises in order to pump more viscous blood. Swollen capillaries and arteries in turn would lead to a swollen brain, and that could account for many of the symptoms of CFS such as TMJ and feelings of pressure.
In your case, a swollen brain could press directly on the nerve serving the SCM, the accessory nerve, where it exits the skull, causing the muscle to go into spasm.
posted by jamjam at 12:04 PM on July 2, 2007
You mention you have chronic fatigue, and it occurred to me a fairly recent finding might conceivably bear on your situation. A doctor at Johns Hopkins, in a study published in the Journal of Pediatrics in 2002, reported that:
Sixty percent of the 60 children and teens they treated for chronic fatigue syndrome also had hypermobility in at least four of their joints. Only 20 percent of the general public has a single hyperflexible joint, such as being able to bend a pinkie 90 degrees backward, touch the thumb to the forearm, or bend at the waist and rest both hands flat on the ground.
If that hypermobility means these patients have more flexible collagen in general, which seems very probable, and if you have very flexible joints, the collagen in your spine may also be very flexible, which could mean your vertebrae are unusually subject to displacement and you compensate for this by chronic muscle spasm in order to stabilize your spine.
There's another possibility I'm a little reluctant to bring up because I 'm not sure how controversial it is, but I know many people with CFS think they have reduced blood flow to the brain because of some form of hyperviscosity of their blood.
Collagen surrounds your blood vessels, and very flexible collagen and hyperviscosity are a recipe for expanded arteries and capillaries as your blood pressure rises in order to pump more viscous blood. Swollen capillaries and arteries in turn would lead to a swollen brain, and that could account for many of the symptoms of CFS such as TMJ and feelings of pressure.
In your case, a swollen brain could press directly on the nerve serving the SCM, the accessory nerve, where it exits the skull, causing the muscle to go into spasm.
posted by jamjam at 12:04 PM on July 2, 2007
It sure sounds like dystonia from your description. Botox is not great for this problem, unfortunately, because there is a good deal of feedback to higher brain structures involved in dystonia. Let me explain. If you weaken the affected muscle by blocking synaptic transmission at the NMJ, ordinarily it would be weaker than it was before the injection.
But your brain notices that the muscle isn't pulling as hard as it was. It tells the muscle to pull harder, to recruit more motor units. The brain in essence 'corrects' for the presence of the treatment. You can't totally paralyze a muscle as big as the SCM with Botox injections, which is just as well because if you did your head would flop over to one side. However sometimes Botox can help. You will not know for sure until you try.
Dystonia's hard to treat. A mainstay of treatment in the patients I've taken care of has been learning techniques to deal with its effects.
jamjam, you're not in command of the principles you're trying to explain here, and you are kind of making a mess of things. The Artane's not meant to have an effect at the NMJ. It has its useful effects, if any, in the motor areas of the brain. All skeletal muscle receptors happen to be nicotinic in character, which is a nearly useless factoid from a pharmacologic point of view.
posted by ikkyu2 at 8:48 PM on July 3, 2007
But your brain notices that the muscle isn't pulling as hard as it was. It tells the muscle to pull harder, to recruit more motor units. The brain in essence 'corrects' for the presence of the treatment. You can't totally paralyze a muscle as big as the SCM with Botox injections, which is just as well because if you did your head would flop over to one side. However sometimes Botox can help. You will not know for sure until you try.
Dystonia's hard to treat. A mainstay of treatment in the patients I've taken care of has been learning techniques to deal with its effects.
jamjam, you're not in command of the principles you're trying to explain here, and you are kind of making a mess of things. The Artane's not meant to have an effect at the NMJ. It has its useful effects, if any, in the motor areas of the brain. All skeletal muscle receptors happen to be nicotinic in character, which is a nearly useless factoid from a pharmacologic point of view.
posted by ikkyu2 at 8:48 PM on July 3, 2007
jamjam, you're not in command of the principles you're trying to explain here, and you are kind of making a mess of things. The Artane's not meant to have an effect at the NMJ. It has its useful effects, if any, in the motor areas of the brain.
The defendant pleads guilty, ikkyu2. Would you care to explain the logic of the Artane?
posted by jamjam at 12:08 PM on July 4, 2007
The defendant pleads guilty, ikkyu2. Would you care to explain the logic of the Artane?
posted by jamjam at 12:08 PM on July 4, 2007
No. I've never felt like I understood why it was supposed to work.
posted by ikkyu2 at 11:59 PM on July 4, 2007
posted by ikkyu2 at 11:59 PM on July 4, 2007
Response by poster: ikkyu2 and jamjam;
Thanks for the discussion; I think it's going to end up being very helpful.
ikkyu2: Can you think of any possible explanation for the Artane making this problem worse? Is this as weird as I think it is? I'm going to pitch it to my neurologist next week, but I have a feeling that collecting other opinions could be useful on this particular issue.
Oh, and...
I've since tried some very tiny doses of Gabitril and it seems to take me back to baseline levels of muscle tension, though the effect is short lived. I'll probably take some more tonight.
posted by Clay201 at 3:35 PM on July 5, 2007
Thanks for the discussion; I think it's going to end up being very helpful.
ikkyu2: Can you think of any possible explanation for the Artane making this problem worse? Is this as weird as I think it is? I'm going to pitch it to my neurologist next week, but I have a feeling that collecting other opinions could be useful on this particular issue.
Oh, and...
I've since tried some very tiny doses of Gabitril and it seems to take me back to baseline levels of muscle tension, though the effect is short lived. I'll probably take some more tonight.
posted by Clay201 at 3:35 PM on July 5, 2007
This thread is closed to new comments.
If you'[re not interested in that I'd try a physical doctor (that's a speciality) as well as the neuro. They aren't surgeons and in my experience are just the person to see for this sort of thing as they focus on PT and are more whole body oriented.
posted by fshgrl at 11:47 AM on July 1, 2007