My never ending migraine story

For most of my life I would occasionally experience unexplained nausea, dizziness and flu like symptoms. Around mid May of ’09 I started experiencing these symptoms on a more regular basis. My symptoms lasted most of the day and sometimes included headaches and light and sound sensitivity.

In mid June of ‘09 I started taking Nexium, My doctor believed that acid reflux could be the cause of my nausea and dizziness. My doctor also ordered an MRI due to my daily mild headaches and family history of strokes. The MRI came back normal.

In mid August ’09 I stopped taking Nexium since it wasn’t helping with my symptoms. Three days later while taking a warm bath, I turned my head to the right and suddenly experienced extreme nausea, dizziness and vertigo followed by vomiting. I also began experiencing extreme fatigue and diarrhea, my symptoms never subsided. After many months and visits to multiple doctors, I still had no clear diagnosis.

Over the past 3 years since my migraines be came constant, I tried 17 different medications and went to 13 different doctors including Mayo Clinic! I finally got a diagnosis of Migraine Associated Vertigo and Chronic Subjective Dizziness from Mayo Clinic.

Unfortunately none of the therapy or medications that were prescribed helped except Gabapentin which gave me about a 10% improvement and vitamin B2, Co Q10 and magnesium which also gave me a slight improvement. I’m also currently trying Petadolex but its to soon to know if it’s helping.

My symptoms are constant and their intensity can change without warning. For example, my symptoms may be at a low level but 30 minutes later they can be high enough where I’m experiencing a full blown attack and need to lay down in a dark quiet room to recover or sleep it off for 12 hours or so. Due to the severity of my symptoms I am homebound 90% of the time.

My symptoms are constant but variable throughout the day, they include…dizziness, headache, fatigue, flu like feeling, nausea, light/sound sensitivity, odor sensitivity, weakness, body pain, abdominal discomfort/bloating, occasional vertigo, blurred vision, confusion, head pressure, neck pain, tinnitus, brain fog, insomnia….the list goes on and on.

Some of my triggers are…
-Moving my head from side to side causes EXTREME dizziness and nausea and can trigger an attack.
– A long list of foods, I now read every ingredient of every food I eat to identify possible food triggers. Food triggers can wipe me our within an hour of eating them!
-Stress can greatly increase my symptoms.
-Changes in atmospheric conditions are a major trigger especially drops in barometric pressure.
-Concentrating on something for too long.
-Using a computer for more than 15-30 minutes.
-Being a passenger in a vehicle.
-Having an empty stomach.
-Bending down then standing up.
-Large open environments or excessive activity around me.
-Not enough sleep or a bad night sleep.
-Any constant activity that must be maintained such as conversing with people for extended periods and attending social gatherings.
-Good stress can actually lessen my symptoms by a few points but only temporarily. Once the “good stress” is gone my symptoms return and are usually much worse.

These are some of the tests I had done:

  • MRI – results normal
  • Multiple blood and stool tests – results normal
  • Lyme Disease – negative
  • Possible gastric disorder- negative
  • Possible psychological disorder – negative
  • 18 sessions of vestibular therapy, which made things worse – no help
  • Endoscopy – normal
  • Colonoscopy- normal
  • Gastric emptying test – normal
  • Ultrasound of liver – normal
  • Upper and lower CT scans – normal
  • Abdominal MRI – normal
  • Audiometric Evaluation – normal
  • CT Brain w/o contrast – normal
  • Full spectrum eye exam- normal
  • 36 sessions with a chiropractor performing spine & neck realignment 3 days per week – No help
  • EEG- normal
  • ABR – normal
  • Otoacoustic emissions – results negative
  • Vestibular evoked myogenic potentials – results negative
  • Electrocochleography – results negative
  • Computerized dynamic posturography – results negative
  • Full blood workup – all tests normal
  • Mayo Clinic ran a battery of tests all came back normal
  • On a “pain/symptom scale” ranging from 1-10, my daily symptoms are usually around a 5, 6 and 7. I get spikes of 8, 9 and an excruciating 10 about 4 to 12 times a month.

Needless to say some friends and family are confused and don’t understand my disease. Some don’t even try to understand and some take my illness very seriously. The ones that don’t understand never see me when I’m at my worse. They say to me “you look fine”. I tell them “that’s because my pain/symptom levels are below 7 so I’m just able to function today.” They just don’t understand that I planned for this day! I rested for days prior to the get-together and avoided any possible trigger so I could be with them that day. I’ve also allotted at lease 2 days afterwords in case visiting with them causes my symptoms to spike. When I want to attend any social gathering I must rest for 2 days before the event and allow 2 days after in case my symptoms spike. I need to do this even if its getting together with a couple of friends.

Migraine is an invisible illness. Sometimes I wish I could just transfer all my symptoms to someone who doesn’t understand so they can truly feel what I’m going though.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (4)
  • kmripple
    5 years ago

    Hi! Came to read your story after reading the forum discussion you started yesterday (I think yesterday). I am so sorry you have had it so tough for so long. I hope you find something that controls this better and allows you to feel better more of the time.

    I really identified with your story. How symptoms can be low-level and then suddenly escalate and you need to go lie down. But at the same time how you can feel something pretty much all the time even if you are functioning at a pretty high level. Cars do a number on me, sometimes more and sometimes less. I don’t drive too much anymore and as a passenger I am also not too good. How you say that concentrating for long periods of time or during a conversation can make you feel dizzy. How you have symptoms of confusion, head pain, tinnitus, neck pain, blurred vision.

    I’m sorry I don’t have a solution for you. And I hope you don’t mind I wrote this. But you made me feel less alone today and I really needed that. I am at work trying to work while fighting feeling unreal and many of the symptoms you described, and I am pretty sure I’ll crash tonight or tomorrow after trying to keep up with all that needs to be done. Be well.

  • Ron author
    6 years ago

    Thanks for the kind words. I posted my story in hopes that others will benefit from my experiences over the past 4 years. It’s been a tough time but I’m grateful that my illness is only life changing, not life threatening! Margaret is correct, there’s always someone worse off than you. Even though my life has changes and I’m sick everyday I’m still grateful that I don’t have to worry about the illness taking my life.

  • AmyBabee
    6 years ago

    Please hang in there. “who feels it, knows it”. I feel it and I know what you are going through is real. My now ex used to roll his eyes at me whenever I get migraines and he never lifted a finger to help, talkless of understanding what I’m going through. Do you wonder why he’s an ‘EX’ now!I wished then he could get just one migraine attack and know what it felt like. Keep on keeping on! Don’t give up, we are all in it together cheering each other on. Have a blessed day.

  • margaret
    6 years ago

    I read your story and my heart goes out to you. It really allowed me to put things in perspective; that no matter how bad you are there is always someone who is worse. I can’t even begin to imagine how you are feeling. I applaud you for not giving up and still managing to lead a normal life. I too have suffered from chronic migraines and have tried endless treatments but I am finally on the road to recovery. 3 months ago I found the Ontario Migraine Clinic in Ontario, Canada and have found the answer to all my prayers. I’m still in treatment but my migraines have gone from 15 a month to 1 or 2. By the time I’m done I hope to be migraine free. For the hundreds of patients that he sees every week, I know that my day will come. Good luck with everything and I hope that you too will be pain and migraine free one day!!

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