When my SOM symptoms began:
Early 1980s When diagnosed:
2000 Type of doctor:
Ophthamologist, who referred me to pediatric neurological ophthmologist SOM eye - Right or Left:
Right
My symptoms:
Began as seasonal (twice a year, Spring and Fall) transient, irritating movements. Increased over the following decades, to become a difficult problem in mid 1990s. Greatly increased by 2000 and has steadily increased even more since then. Movement and disturbance all day, every day. Symptom triggers, if any:
Strobing light (especially in winter months, sunlight through bare tree branches). Not bothered by stress, caffiene or illness. Wear glasses? What type/kind:
Reading glasses, but will soon need them for driving.
Is SOM eye weaker or stronger than "good" eye?:
Vision is better in my good/left eye.
Treatments for SOM: Prescription meds: Yes or No:
Yes. Tried each of them several times over the past seven years.Med name, dosage, how long, results 1.
Tegretol, 1000mg max dose, on and off for several years.
Med name, dosage, how long, results 2.
Zonegran, maximum dose, a few months.Med name, dosage, how long, results 3.
Neurontin, maximum dose, two months.Med name, dosage, how long, results 4.
Herbs. Legal only. List all:
NoHerbs. How much, how long, results:
Herbs. Where obtained:
Accupuncture. Type: No
Accupuncture. How long, results:
Massage. Type: No, but I would love to be able to afford it.
Massage. How long, results:
Chiropractic. Method/type: No. Insurance does not cover it.
Chiropractic. How long, results:
Surgery. Type: Orbitotomy and severing of SOM muscle.
Surgery. Results: Still in recovery
Other conditions I have:
Symptoms. How long. 1. Arthritis, usual symptoms, 40 years.
Symptoms. How long. 2. Asthama, usual symptoms, 20 years
Symptoms. How long. 3. Depression, probably related to being unable to see well.
Symptoms. How long. 4.
Symptoms. How long. 5.
Symptoms. How long. 6.
Possible connection(s) to SOM: Only the depression.
Current SOM status: Recovering from surgery. The coming year will be the determinant of how, or if, my movements return. I have been an excellent patient and am hoping for the best results. I will be able to try prism lenses sometime in the next month or so, which should resolve my diplopia. If not, further surgeries will have to be considered.
Current age: 60
Gender: Female
Additional thoughts: SOM has made it necessary to quit jobs, limit my driving, suffer some serious falls and other accidents, and has caused all manner of problems in my personal relationships. It has also made me a stronger person, who is more understanding and has greater empathy for other people, whether or not they have disabilities. Would I choose to not have SOM? I would have said a resounding YES in the past, but now I'm not so sure. I would not be where I am in my life without it. Would I have wanted, in the past, to be smarter and more assertive about my medical care, well, of course I would have wanted that. I will settle for being the wise and wizzend old babe that I am today. I am hoping that my recent surgery will continue to keep me SOMTomatic for a very long time. I twitch, therefore I am.
How I found this support group: Created it.
Have you shared this group/site with your doctor/doctors?: Yes. I encourage everyone to do the same.