Find A Headache Neurologist – “My-graine” Action Plan Step 7

N.B. This post was created by piecing together a number of articles I’ve written over time on this topic.

Until I started blogging, and reading books on migraine, I had no idea there were general neurologists and neurologists that specialized in a certain field. Did you know that there are Headache Neurologists? I wish I knew this earlier on. Especially when my migraines became chronic.

For the last 13 years I have seen: neurologists; ear, nose and throat specialists; chiropractors; an iridologist; naturalists; internists; nutritionists; physiotherapists and so on and so on.

I have had MRI’s, Angiograms, CAT Scans, blood tests and so on.

After a while, I felt like most physicians looked at me and heard “cha-ching”. I didn’t feel they were listening to me and responding to me as an individual. I felt like I was on an assembly line of migraine patients with doctors that said, “Hmm headache patient with no tumours, here try this pill and see me in 4 weeks. Oh that didn’t work, take this pill and see me in another 4 weeks. That didn’t work try this one … try this one … try this one …”

No one (to this day and moment), has been able to break my headache cycle. The severity would lessen, but the headache would remain. Even drips and injections in the emergency room at hospitals wouldn’t break the cycle.

At that point, my husband and I didn’t realize that I had chronic migraine, so we went to doctors telling them, we don’t want any medication. We want you to run tests and figure out why my headaches literally never stop. The minute they ignored that request and started writing a prescription we were like, “NEXT!” We were just tired of the conveyor belt. We were tired of:

Doctor: “Oh you have migraine here’s a list of foods to avoid.”

Us: “Yeah we did that for a year with no success.”

Doctor: “Okay we need you to do that again but I’ll also prescribe…”

Us: “Oh I’ve taken that. And that. And that. Yes I’m sure I’ve also used that.”

Doctor: “Wow! Well this one is new on the market, let’s start you on this and I’ll see you in …weeks to see how you’ve responded.”

No one seemed to hear us, so we stopped going to doctors. During that time, I had to stop working so we lost our health insurance. We were discouraged, fed up and broke.

One afternoon, I was at my parents house with a #1million migraine; not 10, #1million. It was so bad, I vomited about 6 times in one hour. My mother was terrified. She immediately got on the phone to the Cleveland Clinic in Florida, made an appointment and she and my dad financed the whole trip for my husband and me. That visit was a break through.

The neurologist we saw there, did a thorough exam, diagnostic tests and all, and after all the tests came back normal (as usual), she said (and I paraphrase), “All of your headaches are the result of migraine. Your migraine doesn’t stop. We must break the cycle.” For us that was an ahhh…haaa… moment; we finally felt there was progress. However, that neurologist lives in a different country and we just couldn’t afford to continue seeing her. On top of that, we can’t afford health insurance on just one salary so we just stopped going to neurologists and that’s where we are now.

I recently went to my GP for depression and migraine. She gave me Cymbalta, Relpax and Avamigran – the Avamigran was my rescue med. None of them worked. After the prescription ran out, I went back to my own treatment.

This however, must stop. I need the proper help. Until we’re able to begin seeing Neuros. again (I think we’re just gonna “bite the bullet” and pay out of pocket ugh!!!), I’m carrying out my 8 step plan, hoping that along the way I’ll get some relief.

– Skylar

 

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3 thoughts on “Find A Headache Neurologist – “My-graine” Action Plan Step 7

  1. It is so sad that it all comes down to money, isn´t it? People with chronic pain should get help no matter what their financial situation. I really hope you will find a decent neurologist one day.

  2. Pingback: “My-graine” Action Plan | MigrainePuzzlePieces

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