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Tina’s Story: How Migraine Has Changed My Life

I have been suffering from migraines since July of 2017. When they started they just kept getting worse along with Vertigo. My MRI showed the smaller vessels of my brain are diseased so I been seeing a neurologist since. We have tried medications now we are trying the b2 vitamin and oxygen therapy when when hits. I have a very hard time cognitively and physically functioning. I try my hardest to deal with this problem but it is hard.

I have migraines start up daily and once I put the oxygen on it does help but this is t how I want to live my life. I can’t go very many places because I am always am in a dark room. Once I get a bad attack that is pretty much it for me I suffer for the next 2 to 3 days. I get a two day break and boom I am hit with one again. It’s hard for me cause I don’t think very many people understand how I feel or how this has effected my life. It’s not like I can take a few aspirin or Tylenol and a few hours later I am better. My head feels as though I been in a car accident over and over again. Right now I am highly thinking I should do the injections. My dr told me I will never rid this only maybe by 50%. It’s like a nightmare and I wish people around me would understand how this has changed my life.

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Comments

  • cissy2018 author
    6 months ago

    Hi thank you so much for replying. I do think I need to try a different neologist. In fact I seen the nurse practitioner a month ago and she was more understanding and compassionate then he was. I am suffering I get maybe a two day break. I have new symptoms my face heats up tthen boom a migraine. I been having rapid eye movements well I am awake. One side of my head on the back has inflammation according to my regular doctor I seen a few days ago. She wants to no what the Nurse Practitioner has to say about the swelling. Today I have the rapid eye movements and some pain but not as bad yet. So I put the oxygen on to help prevent a bad one from coming on. It is nice to have people to talk with that understand my situation. Most think it’s juat a headache it will go away if you stop thinking about it. It isn’t that easy. Today is thanksgiving day I want so much to enjoy the day without getting sick. Thank you so much for responding to my story. Have a wonderful blessed Thanksgiving Day

  • Cappucinno
    6 months ago

    Yours is a hard story to read. One, because of all the suffering that you are doing and two, because it brings back horrid memories of how I lived for years before my pain got slowly better and better, over about 30 years (I have been suffering a total of about 45 years total). You have my sincere sympathy for all you are going through. If I were you, I would definitely try every possible drug there is, as I did. There are many many drugs that are used in different ways. I am blessed that I have a wonderful Neurologist for over 20 years now and she is always upbeat and compassionate and supportive and would NEVER tell me something will not or might not help me before it is tried. I don’t know, but do you think you should try a different neurologist? My thoughts are with you and I hope that today, Thanksgiving is a good day for you.

  • Holly Baddour moderator
    6 months ago

    Hi Tina- I’m so glad you shared your story here because you are NOT alone and here you’ve found a community of thousands who completely understand the way migraine is capable of changing a life. In reality there are millions of us. 36 million in the U.S alone who are navigating migraine right along with you. Many of whom, just like you, have some form of chronic migraine and are in pain more often than not. It does impact just about every aspect of life; social, professional, and family.

    Just as you said, it impacts our ability to think clearly and navigate the world as we wish we could. Migraine is the 7th leading cause of disability, so, many of us do spend our days in controlled darkened environments- just as you describe, to avoid triggers causing or worsening the pain.

    Migraine is isolating by its very nature, so we have to push against that dynamic to get the support and compassion we need and deserve.

    There are community members here who have just started experiencing migraine and others who’ve been living with the disease for 60+ years. The perspective, lessons, and support that we share with one another priceless. We also share the frustration you mention- that people in our real lives don’t fully comprehend what we’re up against. It’s tough stuff and therefore becomes more important to find ways to get the support we need- whether or not that’s through online communities or support groups, counseling, or with one or two unique friends who seem more likely to be supportive. Perhaps with them, you might spend some time in an attempt to increase their awareness about the disease- sending them articles about the fact that it’s a complex neurological disease and not just a headache- forward to them anything that resonates with you to help increase their understanding/compassion about migraine.

    Please know you are a part of a community here of many who are thinking of you and are glad you are among us. If you do decide to try the CGRP, and you are lucky enough to experience a 50% decrease in frequency, that would still be a significant improvement, given you have them chronically. I hope you’ll check back in and let us know how you are.

  • cissy2018 author
    6 months ago

    Holly thank you so much for responding to my story. It’s been A very rough road for me and I continue to suffer daily. I am lucky to have two days with no migraines. I am pretty wore down mentally and physically. My body doesn’t know if is coming or going.

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