I suffered migraine without aura when I was a teen. The headaches disappeared through my 20s and 30s and then gradually returned and worsened after a bad case of the flu and later the same year a surgery to repair a retinal detachment – about 3 years ago. The eye surgery seems to have been the biggest factor in the return of my migraines.
About 50% or better of my migraines are silent. For the last three years I’ve dealt with a GP who insisted my ongoing digestive issues were just IBS, and that I was just an anxiety sufferer. He tried me on all kinds of anxiety meds…of course nothing worked. Then one night I suffered an incident of paralysis, lasted about 5 minutes but I absolutely could not move my legs during that time. It has never happened since. My GP finally started paying attention and referred me to a neurologist. I was screened for MS, stoke, seizure and about every autoimmune disease known. My neurologist finally decided I likely had two problems, 1) Migraine with aura, and 2) thoracic osteoarthritis. Some of the symptoms have resolved since I started seeing a NUCCA chiropractor on a regular basis, the other symptoms/auras remain.
Triggers seem to be wine and alcohol (pretty much any aged food), weather changes or changes in altitude, menstrual cycle, and the eye surgery left me with retinal migraines, of which 90% are silent and the other 10% produce a mild to moderate left sided headache – no clue what triggers the strictly retinal migraines, theory is that it is eye strain or perhaps my ongoing problems with dry eye. Visual disturbances range from mirage like hallucinations, to brief flashes of light in my central vision (eye surgeon says they are not connected to retinal tear or detachment), blurred vision, scotoma, halos etc. Weather related migraines seem to set of a different chain of events, usually the left side of my face goes numb, I drool a little and get this awful metallic taste in my mouth, usually followed by a sledgehammer headache (I call this particular one the Stroke)…but not always. Wine…well…food triggers just seem to skip the aura and go right for the sledgehammer headache. That leaves the worst of the triggers, my menstrual cycle. These auras are never consistent and range from feeling shaky and dizzy, to nauseated, to feeling like my legs are suddenly half their normal length, ear pain, jaw pain, visual auras, noise sensitivity, sensitivity to various odors, and sometimes sensitivity to touch, confusion, digestive issues (my GP continues to blames these on IBS), sudden irritability and mood swings.
If learning to deal with scary neurological issues isn’t enough, I’m finding I have to deal with ignorant migraine free co-workers and family members who all think migraine isn’t a migraine without the headache. They think I’m faking it or slacking. HA!!! I wish they could all experience what I do when an aura hits, sometimes the end phase of the migraine cycle is worse for me than the headache when it does decide to make an appearance, (lethargy/fatigue almost feeling like I’m recovering from the flu is only solved by going to sleep for a few hours). I’d love just once for my co-workers and bosses to have to try to communicate effectively during an episode or to just walk from point A to point B when they’re legs feel like they’re half their normal length. Family members don’t understand how I can feel bad so often and not have a headache. I get pushed into activities I don’t feel up to doing by family members. I get pushed into driving elderly family members who can’t drive when I probably shouldn’t be behind the wheel myself.
I’ve made it a policy to cut those out of my life who are not supportive because I simply don’t have the energy to deal with them anymore. That has helped some. Little harder to do this with elderly family members but I’m learning to say no more effectively and pushing them to public transportation options. That leaves my co-workers and boss. I work for a law firm, which means episodes that impair my ability to communicate effectively are really starting to affect my job, not to mention my attendance record is not so good at this point either. I worry daily about getting fired. I eat regularly during the day now, which includes not skipping breakfast like I used to. I take magnesium supplements regularly. All of which helps some but none of that solves ignorance I keep running into. “You look healthy. You can’t feel that bad!”, “How can you feel bad so often?”, “If you didn’t want to go just say so, don’t make things up about having a migraine you obviously don’t have.” etc etc etc.
How to you keep going on the job when you have to work and live with people who don’t understand and brush you off when you try to explain that migraine is more than just a headache and that migraine can be just as individual as the person suffering them? I’ve been looking for a new job, something a little less stressful and a little more flexible, but am running into the “you’re overqualified for this position” and “I don’t think you understand exactly what job you’ve applied for”. Its frustrating. and I’m beginning to think 1) I’m going to have to go back to school and train for a different career at this point and 2) move to Alaska to gain some relief from the demands of my relatives.