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Questions...we have questions!
Please see Page 2 of SOM Q & A
Additional questions will be added as they are presented.
| What is superior oblique myokymia?
Superior oblique myokymia (SOM) is a neurologic disorder that affects vision. It is a problem concerning the fourth cranial nerve and its relationship to the superior oblique muscle.
Superior oblique myokymia is a condition that presents as repeated, brief episodes of movement, shimmering or shaking of the vision of one eye, a feeling of the eye trembling, or vertical/tilted double vision. It can present as one or more of these symptoms. Diagnosis is most often made by the elimination of other conditions, disorders or diseases. | | What causes SOM? Can it be cured?
Of course, your doctor is your best resource, and the rest of this answer is information culled from our members' experiences.
No one knows for sure, but there are a few theories that we’ve heard from our doctors.
One is that it can be caused by some kind of head or neck trauma. However, no one seems to know how serious that trauma needs to be to cause SOM. Besides, try to name one person who you know who hasn’t had some degree of upper body trauma at some moment in their life. Come back when that list is complete and try to explain why you’re the only person on that list who manifests the symptoms of SOM.
Another theory is that there is a compression at the juncture of the fourth cranial nerve and the superior oblique muscle. It is believed that surgery to correct that compression will resolve the symptoms of SOM. There are many doctors who believe that simply touching or moving around in the location of that juncture can affect a resolution of SOM symptoms, and that the actual surgery is an unnecessary addition to possible treatment. Since no one is actually doing any research or practical application of the two parts of this theory, it’s kind of a moot point, isn’t it?
The most commonly expressed theory is that there is no known etiology (cause or reason for a condition or disease) for SOM. As sad as that is, it is true for a gazillion other conditions, disorders and diseases, most of which do not have even the small resource that is this group. Frankly, if you find yourself wallowing in sorrow for too long about having this truly disgusting disorder, you can go a long way to putting your life’s travails in perspective by spending an evening noodling around on the myriad of medical forum sites. There you will find legions of poor souls who are searching for help, without benefit of support, much less a diagnosis. The saddest postings that you will find are those of parents who are looking for help for their children.
There simply are not enough of us SOMers to interest anyone in testing or research of any kind. Unless someone takes a personal interest in SOM, we are unlikely to know what the cause(s) of SOM are, or what the cure might be. | | What are the symptoms of SOM?
Each person with SOM will experience it in their own way.
Some common symptoms are that one’s eye feels like it is moving all over the place. It may feel like it is jerking around, moving up and down or pulling to the side.
It has been described as shimmering, twitching, bouncing, jerking, and similar actions.
One of the best descriptions is that it is tilted, moving, double vision. A good way to describe it to someone is to extend your arm, in front of you, parallel to the floor. Make a fist of your hand. Then rotate your fist at the wrist, with lots of starts and stops and jerking movement.
Some people experience the symptoms without discomfort, but many members report that they have discomfort or pain of varying degrees, at various times in their SOM life. Most people manage without pain medications, but some others need the relief that simple analgesics can provide.
Remember that your doctor is your best resource, and that you should never attempt any treatment without consulting your own doctor. | How is SOM diagnosed?
Only a trained medical professional, your doctor, is able to make a diagnosis of SOM, or any other condition, for that matter. These notes are culled from our members' experiences.
The process to receive a proper diagnosis is a combination of the elimination of other, more serious medical issues, and having your doctor actually see your eye move. Seeing the movement of your SOM eye is most easily accomplished using a slit lamp microscope. Fortunately, this a common piece of equipment in most ophthalmologist offices. Unfortunately, your eye has to be having an SOM spasm at the exact moment when your doctor is looking at your eye during your appointment.
Because more doctors are learning about SOM, the likelihood that you will receive a diagnosis is increasing all the time.
One of the best tools for the elimination of other medical issues is to have an MRI (magnetic resonance imaging test). There are some people, and doctors, who believe that they can confirm a diagnosis of nerve compression by using a particular MRI. | | What kind of doctor should I see for a diagnosis and treatment?
That varies, because our members report that they have been diagnosed and/or successfully treated by their optometrist, some by their ophthalmologist, and a few by their general practitioner.
Many of us have experienced that a pediatric neurologic ophthalmologist can offer the best opportunity for diagnosis and treatment. The reason that this type of doctor can be the best option is that she/he will most likely have had experience with eye disorders and diseases that are most similar to superior oblique myokymia.
Depending on where you live in the world, your community resources, and (for most people) their insurance coverage, you may have to make allowances for other kinds of doctors.
Another point that bears mentioning is that many of us have been mis-diagnosed at the beginning of our quest for answers, a diagnosis and treatment. Unfortunately, this is a common factor for persons with rare medical issues. It is called the IAIYH (It’s all in your head) Syndrome.
In recent times, we have seen that people are receiving their diagnosis soon after discussing their symptoms with their doctors. However, most of us experienced many years of searching for help; some members went more than 13-20 years without a diagnosis.
When we have a rare disorder, such as SOM, we are vulnerable in all sorts of ways. We can barely explain our symptoms or distress to ourselves, and having to do so to a doctor is even more difficult. When that doctor, a person we have been socially conditioned to believe and respect, tells us that we haven’t a thing wrong with us, and then dismisses us, it is only natural to be stunned, confused, embarrassed and to feel defeated. We are disheartened and discouraged at the time when we need to be our most confident and proactive.
If that has happened to you, just keep trying until you receive some kind of help or diagnosis. If you have SOM, come here and join the group. Moreover, whatever you do, do not give up.
While having SOM is a serious and troublesome issue, the symptoms of SOM are similar to many other, more serious medical issues, and the most important thing that you can do for yourself is to make sure that those other medical issues are eliminated through proper testing and assessment. | | What is the standard treatment for SOM?
This information is based on the reports of our members, but most patients with SOM find that their first treatments are experimentation with a variety of prescription medications. The four most typical categories of medications are anti-depression, anti-anxiety, beta-blockers and anti-seizure. Medication info HERE.....and HERE.
Most persons with SOM will need to experiment with a variety of these meds. Some members report that they receive the best results by experimenting with a combination of the meds. Many of the medications have side effects that can seem disabling. Part of the process is to be to be patient and allow the side effects to subside as your body becomes accustomed to a particular medication or combination of medications. It is often frustrating to have to wait through all of this experimentation, but it is what some people need to do to receive relief.
Some people find relief via lower tech options like patches or occluders.
Use of medications or devices should be thoroughly discussed with your doctor.
What other things can I do to help with my SOM vision?
Our members report that they have discussed this issue with their doctors, and they have shared that stress, lack of sleep or a too-busy schedule can affect how badly their SOM may manifest.
Moderating your stress, diet, rest or schedule might not help your SOM, but it cannot be denied that it can improve your general health. HERE are ideas and links that are supportive of healthy living.
Other than that, we cannot stress too strongly that there isn’t anything that you are likely to have done, or not done, in your life that caused or will worsen your SOM. Once you have SOM, the best that you can do is work toward an acceptable relationship with your twitchy eye, and to avoid self-recrimination. | Where can I find more information about SOM?
We have two pages of abstracts and articles. HERE.....and HERE | I have a problem/some questions and I need to contact a manager. How do I do that?
You can write to the e-mail address that was used to contact you when you applied to join our support group. If you no longer have access to that address, you can find that e-mail address in a file on our Document page titled Contact your managers. We do have an option (in your Member Tools) on our site for writing directly to the managers. Please be advised that this function rarely works. MSN knows that it is a problem, but there has never been a time where the function has reliably worked. If you use this function, do so with the understanding that the managers will probably never receive your message. | | Please see Page 2 of SOM Q & A | | More questions of a general nature will be added to these lists as they are presented to us. If you have such a question, just contact your managers at their Contact E-Mail, or post your query on the General Message Board. | | It bears repeating that we have struggled to keep this group together, and to maintain a viable support group site for over eight years. Two previous sites are lost to us, and we are doing everything that we can to prevent the loss of this support group site. If our methods, suggestions and requirements seem excessively stringent to you, please try to imagine what it would be like if you came to this site to post or read or just find a little peace and support, and you found that it was gone. Poof. Disappeared. Lost forever. That is what has happened to us old-timers...two, terrible times. We understand that you have a life apart from this site, and in addition to your SOM life, because that is true for all of us. We do not require that you post on a regular basis. You are never asked to 'check in' in order to remain a member. We don't require intimate information from you, and should anyone representing themselves as management of this site ask that you provide such information, refuse to do so. What we do ask, via all of our site/group requirements, is that you be honest about your SOM, and just practice safety on the Internet. If you ever have any questions or concerns, please feel free to post them on our General Message Board; or if you feel the need for more privacy, use our e-mail address to contact us. Don't be shy about asking anything. Our rare, orphan disorder needs all the interest and investigation and information gathering possible. Please be generous about all the mis-spellings and gramatical errors on this site. We may be SOMers, but we're still humans! |
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