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I just want my life back!

About 3 weeks ago got my first migraine. My vision changed, hand went numb, and got confused. Also got a killer headache. I went right to the doctors and have been in the ER 3 times due to my symptoms being so extreme and stroke like. All the tests are negative like mri and cat scan. I feel like I am having a stroke each day. I have a migraine which they diagnosed me with.

I cannot function some days or take care of my 9 month old daughter when my wife is at work. I have been missing work not being able to function. It is horrible and I just want my life back and be able to function especially watching my daughter. It kills me inside feeling I can be a parent due to this affliction. I am finishing up the depakote and will be starting topamax soon. I also have rescue meds isotherm.

Any advice for me on how to cope and if this will get better. I would not wish what I have on my worse enemy it’s horrible. Thank you in advance

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  • R.D.Hayes
    3 years ago

    I forgot to mention that you should start paying attention to the way your body feels right before you have one. It took me years to do this, but now I can buy myself a few minutes before one fully takes over. This gives me enough time to get my meds, ice packs, sunglasses, anything else I need, and it allows me enough time to tell someone close so that they can make sure that we all get back home or contact my husband for me. My is usually a dizzy feeling three to five minutes before one hits.

  • R.D.Hayes
    3 years ago

    I have had migraines since I was four and I’m in my early thirties now. I have four beautiful children and I know how hard it is to watch your children grow up while you are laying in bed. Just the other day I took the kids to the grocery store and had a migraine, then a few days later I went to Wal-mart and had another one, and one more trip to the lake and had another. I usually have three minutes from the first moment that I can feel my migraine before it really takes a hold. I go numb from my left foot all the way to my left side of my head. My throat, face, and limbs go completely numb. I can’t talk, walk, or function. I can no longer hold down a regular job so I turned to writing online for pay. I use to only have them once in a blue moon, then it was once or twice a month, and now it is every few days. What you are going to need is a strong support system and some really strong medications. People will laugh at you and tell you that you are faking, don’t take this to heart. No one can understand what it feels like to have migraines unless they have had a sledge hammer driven into the back of their head. Migraines are just now becoming a real topic of conversation amongst co-workers. It can be scary at times and it is really hard to tell you what to do to help other than the basics; dark room, earplugs, bucket to throw up in, ice packs (ones that you actually put ice in so they last longer), fan, and sunglasses.

  • cindyd
    3 years ago

    Might as well try to learn to take one day at a time. I have had problems my whole life. Started with abdominal migraines as a kid. I am 54 now and have mograines more often than not. Have been tried on many treatments and have many triggers. Mine are right sided with eye pain, blurred vision, runny nose, ear pain and arm and hand numbness most of the time. Also, it brings its nasty friends of aphasia, cognition problems, dizziness and forgetfulness followed by a postdrome worse than a hangover. Try not to be too hard on yourself and hang in there. There are a lot of us out here and we are here for you. This is a great site for information and support. I wish you all the best.

  • Maria Walheer
    3 years ago

    I also had a negative experience with topamax aka dope-amax. Please be sure to be open and honest with your supportive community.

    Something that was extremely helpful for me was be ok with inpatient pysch. It was a “safe space” because all the trial and error with medication after medication after medication after medication…It can be really energy wise on the mind, body and spirit. has helped keep me sane so stay connected.

    I would also really look into a diet that matches your blood type. I was educated on that way too late into life and that could have saved a lot of painful days.

    I also spent 8 days in Guatemala with the real Patch Adams and …there is so much power behind a red nose for me. So find something that gives you purpose and do not be afraid to ask for help. Patch taught me it was that simple to see better days. He said it was a chioce and maybe it was the humanitarian work I did with him that makes the choice easier…but it is the simple…make the choice to make today a better day!

  • Cynthia Cortis
    3 years ago

    I started out like you.. It is called Hemaplegigic Migraines. If you ed up in the hospital after they do the the stroke protocol, have them give you a shot combo of toradol, reglin and ativan. toradol you can get your Dr to write for sprix 1 spray if you catch it early enough can slow the progression. Reglin is for the nausea you Dr can write you scripts for that liquid and atavian it is a pill for stress. That is rescue for that kind of heaches that has worked sort of… my neuro also has me on varapimal, gabepetin, clozapane, and hydrocodine.. I have a referral to U of M pain clinic wait is 1 1/2 yrs out they will call me when it is 6 months out.. other than that heavy sunglasses, hats, etc.. I had real bad reaction with topomax so be careful.. it increased my hemapleagics.. Dr wrote me scrip for toradol in pill tried it once and tore up my kidney…

  • Joanna Bodner moderator
    3 years ago

    Dear tdzilla76,

    Thank you greatly for taking the time to reach out and share you story with our community. I am terribly sorry that you recently just started to experience migraines. As it sounds you are enduring a tremendous amount of debilitating pain and feeling overwhelmed. Please know we are ALWAYS here to listen and support you! Managing pain, relationships, work, taking care of your child and simply your ANY part of your daily routine can all become nearly impossible!! I would ask that you not lose hope!!! There are over a 100+ treatment combinations that may be considered. Here is a great article with may provide you with some positive thoughts: and another piece which discusses the importance of having the support you need:

    Also, if you have not already, I would encourage you to consider finding an expert who specializes in migraine and headache disorders. These doctors are different from general neurologists (who may claim to be a headache expert but truly aren’t) because they are board certified in headache medicine. Neurologists may be fine doctors but have a hard time being experts in one area because they treat so many different conditions. Migraine and headache experts treat one disease all day, every day…migraine and headache. Here is information on how these doctors are so different and how to find one:

    Lastly, here is some information and tips from our community members on ways they have found that help to manage and ease the pain of migraine:

    Again, thank you for taking the time to share your story with us. We are happy to have you part of our community!

    Please be sure to check back in and let us know how things are going.

    Joanna ( Team)

  • tdzilla76 author
    3 years ago

    Thank you for taking the time to reply and give me hope.

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