Brand Spanking New Migraineur!

I was recently diagnosed with optical neuritis, lost vision in my left eye that has not returned and ta da I now suffer with chronic migraines (about 7 months now.) I am not dealing with it very well. Until two weeks ago when I was diagnosed as bipolar and given Topamax, I just dealt with it, maybe an occasional trip to the ER for pain medication.

I do not have health insurance which is why I just dealt with the pain because my hospitalization landed me with over $36k in debt and no solution. I guess not having MS for the time being is a plus. I cry. I have to lie down in dark silence. I feel like a freak and that no one understands just how severe the pain is or that they think that I am over reacting. I do not want to live the rest of my life like this. I cannot. I’m in incredible pain as I write this now. And no way to stop it. I do not see hope.

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Comments

View Comments (7)
  • Pete
    5 years ago

    Jessica- as soon as you can, get the advice of a migraine specialist. There are many top-rated doctors on multiple sites. Whatever you do, do NOT delay, as you could end up with chronic daily headaches, like me. Join many forums; subscribe to the BBC, DocGuide.com, US government sites, too- not just “medical sites”. Most of the newer research is taking place in Europe- we are catching up, but lost many years under Bush. A fellow migraneur was recently told that she was bi-polar, and had chronic fatigue. She continued to push, and these diagnoses were abandoned (Nancy, this by Ohio State!). There are many types of migraine, and clusters are a whole new world. Currently, I have a “status” migraine, 12 years running, with 8 “waves” of additional migraine/cluster headaches every day. I also get the “suicide “clusters.
    The point is- be as aggressive as possible about your treatment; don’t hesitate to change doctors, clinics, etc. if you are not a ‘match’. YOU will need to stay on top of current trends- there is simply no way a practicing physician could handle the mountain of new information. As a single example, the Brits view migraines, seizure disorders, epilepsy, Parkinsons and Alzheimers as part of the same condition, on a scale (relates to white matter tangles in the brain, etc- you will need to read it to understand it). There are many new treatments from specific surgery, to new experiments with stem cell. Try alternatives as well- I am a Reiki ‘master’, and the only way I get to sleep at night is through self-hypnosis; otherwise, I’ve been pretty much everywhere and tried everything, until a few years ago. KEEP AT IT and BELIEVE IN YOURSELF and your own understanding of your condition. Most doctors won’t know as much about your condition as you do; work with them, ask them questions, do not simply nod and say “yes”- the “rules” of medicine are particularly inadequate when it comes to several conditions, including migraine. Continue to reach out- there are a lot of people who have good info to share. Best of luck,
    Pete Myer
    former injury attorney
    former EMT-B (vol.)

  • Jessica Bennett author
    5 years ago

    AWESOME Pete! AWESOME! Thank you so much!

  • Nancy Harris Bonk moderator
    5 years ago

    Thank you for sharing your story with us Jessica. There are many of us who understand how debilitating migraine can be.

    I’m sorry to hear about your vision loss. Typically it returns after a migraine attack resolves itself. You mentioned not having MS (thankfully)but I wonder if you’ve been fully tested for it? The reason I mention this is because optic neuritis may be one of the first symptoms of MS. We have information on our sister site, MultipleSclerosis.net; http://multiplesclerosis.net/.

    I can share information with you on basilar-type migraine which has been renamed migraine with brain stem aura according to the International Headache Society’s International Classification of Headache Disorders -III, beta version or ICHD-III beta version. You can read more about it in this link; http://migraine.com/migraine-types/basilar-migraine/.

    I hope this is helpful,
    Nancy

  • Jessica Bennett author
    5 years ago

    Hi Nancy,

    Thank you for reaching out to me. Yes, optic neuritis is first symptom of MS. I was given an MRI at the hospital when first hospitalized. Should I have other exams? Do you know what those entail? I will definitely look at the information you provided me and I appreciate it!

  • John Roebuck
    5 years ago

    I also, have losing vision in left eye. I also have a basil type migraine. Severe pain around left socket. Topamax is drug the nuero has tried me on.
    I now wear ear plugs 24/7 and never go out in the sun, for bright light causes extreme discomfort.
    You are not alone in this, my quality of life is 90% less than I had 2 years ago.

  • caradrouin
    5 years ago

    Thirty six thousand dollars in debt because of a disability. Our country is shameful. You will have insurance soon. I hope the Topamax helps your migraine.

    Now you are with us and we understand how bad the pain is. I have a bipolar son and I can see how the up and down stress of this would add to the frequency and duration of migraines.

    I cannot offer you any solutions, only hope that you get insurance soon and help with your debt. Hospitals should offer hope to those who need them and not prey on disabled people without insurance.

  • Jessica Bennett author
    5 years ago

    Thank you. And it is shameful. Reason I do not seek help right now but I know I will have insurance soon.

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