Virginia's story

By daisygin

1 min read

I have had migraine off and on from 9 years old. In 1997 after a car accident they became chronic. I have auras, nausea, vomiting, photophobia, sound sensitivity and smell sensitivity, dizziness, idiopathic syncope, fatigue and a slew of other symptoms.

Last April my doctors told me no more working, so I applied for disability benefits. I am still waiting. I think one of the hardest things to deal with is the isolation. I live in my 'cave,' mainly in the dark. Rarely do my friends stop by or visit. And, to be fair I don't call them as talking on the phone intensifies the pain. I miss them.

I have 24/7 migraines with no start and stop. Four years ago my neurologist told me there was nothing that they could do for me anymore. Botox was not an option due to having acinic cell carcinoma, nor would I qualify in the future. So I straightened my spine and got through day to day living. Except this is not living a quality life. I have a new Doctor, who is referring me to a migraine specialist, so that part is looking up.

I think that living with chronic migraines is the hardest work I have ever done, it's not for the faint of heart. As I am new to this forum and I'm reading your stories, I want to thank you for the insights that everyone is sharing. It is a big help.

Thank you

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Joanna Bodner Community Admin
Hi Virginia, Thank you greatly for taking the time to share your chronic migraine story with us. I am so sorry to hear how much this condition has altered your life AND for SO many years! You express sentiments in your story that so many in our community can certainly relate to regarding the isolation, ineffective doctors & treatments, and debilitating symptoms...please know that you are never alone here in the <a href='http://migraine.com' target='_blank'>migraine.com</a> community! We are always here to support you. While you are likely already well aware of this information regarding some of the topics you addressed, however, on the chance they do provide you with further insight, I thought I would share a few articles with you. The first is regarding being on disability: <a href='https://migraine.com/blog/disability-means-not-mean/' target='_blank'>https://migraine.com/blog/disability-means-not-mean/</a> and <a href='https://migraine.com/blog/disability-income-preparation-guide/' target='_blank'>https://migraine.com/blog/disability-income-preparation-guide/</a>. Additionally, you mention your Neurologist saying that there is nothing further they can do, I thought this article "may" provide you with a bit of hope: <a href='https://migraine.com/blog/tried-them-all/' target='_blank'>https://migraine.com/blog/tried-them-all/</a>. It's wonderful to hear that you will be meeting with a true migraine specialist. We will be thinking of you and are too are hoping that things will be looking up for you after your appointment. Here is an article that may better help you to prepare for this visit: <a href='https://migraine.com/getting-help/prepare-docto-visit/' target='_blank'>https://migraine.com/getting-help/prepare-docto-visit/</a> and some information on your daily/constant migraine: <a href='https://migraine.com/blog/headache-that-never-ends/' target='_blank'>https://migraine.com/blog/headache-that-never-ends/</a>. Lastly, here is an article which may provide you with some tips that you may not have considered for management: <a href='https://migraine.com/blog/a-list-call-for-creature-comforts/' target='_blank'>https://migraine.com/blog/a-list-call-for-creature-comforts/</a> and <a href='https://migraine.com/blog/community-responses-what-are-your-go-to-techniques-that-bring-you-comfort/' target='_blank'>https://migraine.com/blog/community-responses-what-are-your-go-to-techniques-that-bring-you-comfort/</a>. Again, we are grateful you shared your migraine story with us and are so happy that you are part of our community. Take care, Joanna (Migraine.com Team)
cal2 Member
Virginia, I hope this place helps you feel less alone. It's the first place I found that made me cry reading stories because it made me feel better. Until here, I felt totally alone and "isolation" was the word I used. This is where I come for information and when I need to see and read understanding. I hope you find it a comforting place to be.
felix16 Member
Virginia I'm so sorry. I know exactly how you feel. I have had 20 years of migraine, gave up work 18 years and live in my dark world also. It is lonely, painful and the hardest thing I've ever been through too. I'm so sorry to hear that you can't have Botox. I've just had 3 whole migraine free weeks, but four days ago they came back, I had forgotten how hard it is to daily climb that mountain. Botox doesn't always work for me, just for a few weeks a year, I hope something is found that gives you some relief. I just want you to know that you are one of the bravest, most amazing people, just to live through the pain and survive every day. Thank you for sharing your story with us, I hope this forum helps you, you really are not alone here.
tujyn7 Member
Virginia I am so sorry for your suffering. I, too, have chronic migraine that started in October 2013. I was forced to quit my job last year because of it. Botox and numerous medications have not worked. I live in the dark with the never ending migraine that worsens each afternoon. I try to limit myself to ten minutes of screen time as any more than that seems to worsen the pain. I rarely drive because the pain can intensify while driving or riding in a car. It is very frustrating as I wait for this drug or that drug to work. We are still looking for the right combination. Talking on the phone hurts, sunlight hurts, I fall down all of the time from the vertigo. My social life has become non-existent because of it. Please hang in there as we all need to stick together. Hopefully something will be found soon that will work for all of us.
1. daisygin Member
 Thank you for your kind words. I haven't been allowed to drive from last December. When I use my computer I wrap the screen in layers of green plastic wrap. It takes a lot of the glare off and I wear sunglasses in my home most of the time. Just some suggestions that might help.
daisygin Member
Up Date: I heard back from the Migraine specialist. He deigned my visit. My doctor called him back and asked him please to she me ask least once. He said that their was really nothing he could do for me that we have not already tried. But hat he would see me for one visit only.

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