Finally sharing

I read the articles often. They have been really helpful. I guess I just finally decided to share a little as I’m on the uphill road again.

I was diagnosed in 2012 after being tested for MS for the third time, as well as a multitude of other disorders including mental illness to no avail. I actually have lesions but they are small and my neurologist said they were migraine lesions.

I’m 51 and believe I’ve had some form of migraine all my life. I didn’t have the headaches often mostly just aura type stuff and IBS diagnosis and dizziness for years. It started getting worse about ten / fifteen years ago. When the headaches started 5 or 6 years ago, I didn’t recognize them as headaches. I guess I should share my diagnosis – Chronic complicated vestibular migraine with aura and neuropathy, Phew – a mouth full. My doc says she thinks I have multiple forms of Migraine. After getting told 14/15 years ago I was crazy by a neurologist after a miriad of tests with no results. He got mad at me because I cried. He couldn’t understand why I was wanting something to be wrong – he had just given me the ‘best news ever’ that I had nothing wrong. I was crying because once again I had no answers for my unbelievable dizziness and neuropathy. I swore I’d never see a neurologist again. A few years later I had no choice. My dizziness turned into major head / ear pain. It never stopped. I had hearing that was off the charts. I would sit in the middle of my house at night when it should have been quiet and listen to every clock in the house even with ear plugs on. Each tick was like lightening. I would go to church and continue to hear the music after it stopped. I stayed away from some people because there voices made me sick. I couldn’t listen to any music especially if it had vibration like an organ. The radio was banned from my car and my husband learned to watch TV with super low volume. You can’t imagine how much TV uses music to set a scene. I finally went to another neurologist after several referrals from other physicians. She said I had such terrible migraines they were piggy backing each other and you couldn’t tell when they ended and when they began. I wore ear plugs and suffered with that for 4 months straight. Believe it or not I functioned pretty normal during this time only my husband and a few very close friends not even family knew. Their idea of being sick is to buck up and don’t pitty yourself so I just didn’t share.

I’m an annoying optimist – some friends call me Glenda the Good Witch. I worked in a busy accounting office during tax season without missing a day. I worked in a cubical in the middle of the office where every time someone walked by I felt like I was on a trampoline. Even with earplugs in, I could hear multiple conversations as if they were right next to my ear. I managed to be pleasant and smiling the whole time. I cried in private. Only my amazing, patient, supportive husband saw. So after knowing what this monster is, where I am now seems pretty good. I have dizziness almost everyday and have headaches pretty much daily but not debilitating like they used to be and aside from the trigeminal nerve pain occasionally, the rest of the neuropathy is minor and doable – the lightening and electricity is very minimal. I’ve gone to therapy to learn how to use my feet to keep my balance through the dizziness.

I’ve recently started having ocular migraines. I had one day where my right eye was blind for 2 hours. Again – I did this with only a very few people knowing.

I’m on 600 mg of Lomotrigine (Lamictal), spironolactone ( for the dizziness), one adult asprin to make sure I don’t stroke out, Butalbitol, Excedrin, and alieve as abortives. I just keep getting more triggers and my diet is very limited. I can’t eat big meals etc… You know the drill. On a positive note I’m only 20 lbs over weight but that’s now shrinking. Pretty much I look at other people and can’t even imagine that they aren’t experiencing headaches as well.

I’m not looking forward to the next visit to the neurologist as I’m afraid of more tests that won’t show anything more. I’m functioning better now and am getting used to the dizziness daily- I can use yoga and breathing to control it. Sometimes I can get the headaches down to 3 a week and the neuropathy very minimal. I just get very fatigued after even just the smallest attack. My biggest complaint is that my neck often kills me during headaches and my head feels like a bobble head.

I look at the stories on this and think “my story isn’t that bad”. I guess it’s pretty pathetic. It all sounds horrible in print but I’m so used to it’s just part of my life. Maybe one day I can get it more under control. Meanwhile I’ll just keep gleaning ideas for coping and feeling the support from this forum.

Thank you! Shelly

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