Lifetime Migraines, Horrible Loss and Mental Illness

I never thought I would write this in public-but you all have made me want to. I started getting daily headaches in 4th grade. My Grandma (also a migraine sufferer) gave me Excedrin. Beginning as a child, I learned how to cycle OTC meds- aspirin would work for a few months, then tylenol, and cycle back. this was before naproxen was OTC (I’m 46). I don’t even remember using Advil until high school. But, even though I didn’t know any info or have a special doctor, I knew triggers! I’ve been “living my life around my head” since forever. Sun. Snow. Food. Weather. But I never even realized I “had” migraines until I was pregnant at 23 and had one that knocked me down for almost a week. Then I was diagnosed. Until then, they had been “daily headaches” (I still have those) and the stomach migraines. I was a teenage mom, graduated HS early, had three daughters by 23, got a College degree (Chemistry), and supported us all as a chemist until I lost my middle daughter in 2005. Accident. My head went insane. Stress. I finally saw a neurologist and got on Topamax, which kept me alive, I was literally always in some stage of migraine – but I couldn’t beat the daily headaches. Constant battle. Depression. Night terrors. Ptsd. Anxiety. Effexor is good and helps me a lot. I’ve been on tons of med for the head. In 2011, I lost my eldest daughter. Illness. I finally caved in late 2011 and applied for disability, got it in late 2013, mental illness. (still fighting, very hard) but my head is almost impossible to control. My migraines are manageable with Topamax- like maybe 5-6 month? But they have moved to always aura, crazy stuff, hallucinations (mild), horrible visual stuff, eye twitching like mad, ataxia, and the daily headaches are a source of HELL- the only thing that works on those is vicodin- not oxy, not anything stronger, only vicodin. And, now it’s like doctors, even headache doctors/ neurologists are against narcotics. What do you do? I moved state to state – and haven’t had any narcotics in like 3 months? So- I’ve had a daily headache for 3 months, which leads to more migraines, more stress, and more issues w anxiety, and more issues w my mental health.

It took me 8 YEARS to find the med combo that finally worked! I hadn’t been in an ER in 2 years- and then I moved, and UGH. Everything is all messed up because narcotics were in my mix. It makes you want to give up. No, it’s REALLY not a rebound headache, LOL I haven’t had a narcotic in months, and I actually know my various different “kinds” of headaches… plane ride headache and/or migraine, low pressure weather headache, OMG there “WAS” MSG in that Chinese, headache, and my favorite, in the ER–> OMG! I told you NOT to give me Benedryl! headache! LOL Thanks so much for letting me share the frustration of not having “REAL” diseases.

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 (6)
  • Rema
    4 years ago

    Hello my fellow migrainer. I too was moved by your story as many of us are when we learn we’re not alone and someone else is experiencing what we are. Take heart in knowing you’re not alone and the times you feel well enough keep on searching for those solutions. Eventually something comes along that makes the suffering a little easier to cope with. We’re here with you
    Rema

  • Leynal
    4 years ago

    Thanks for your courage to share your story. Your life story clearly struck a chord for many of us, and I really hope you feel connected to this community and feel a sense of support with each day especially when you are in pain, as I know you might often be.

    Sending you lots of love,
    Leyna

  • Sandy
    4 years ago

    vd1234 I am so glad you shared you story. I hope you find healing. we chronic migraine-rs are so difficult to treat. I have often been treated like a drug addict just for going to the urgent care or emergency room bc the pain is so bad. i am so often surprised and grateful when i find a compassionate person bc it isn’t the norm where i live re: going to ER with a migraine. so awesome that you all jules2dl have a clinic that seems to treat the whole person. maybe there is hope for us. i love my doctors. they do the best they can but each one has their own clinic and treats their own piece of the pie. they do not c me as a whole person. does not see how my migraine affects the rest of my body. it is up to me to figure that out and what i need to do about it. God bless this website. when i am feeling judged or discouraged i come here.

  • Katie M. Golden moderator
    4 years ago

    Vd1234,
    I’m so glad you felt you could share your struggles with us. You are truly an amazing person! The trauma alone from your losses must be unbearable at times and then to add Migraines on top of that…I’m in awe of you.

    Stress can do awful things to our body. If you haven’t already I encourage you to seek out a therapist to help you through some of these issues, including losing part of your life to illness.

    Narcotics and Opioids are such a hot topic right now. Clearly, they shouldn’t be abused and doctors need to be careful to weed out the addicts, but that makes access much harder for those who truly need it.

    What kind of doctor are you seeing in your new town? If you can find one, a Headache Specialist is the best type of doctor to help with the intense Migraines you have. This is a neurologist with specific training in the over 300 Headache disorders. Here’s more info on Headache Specialists:
    http://migraine.com/blog/how-are-migraine-specialists-different/

    I wish you well!
    -Katie
    Migraine.com Moderator

  • Paco
    4 years ago

    Vd1234,
    I am moved by your lifelong struggles an will keep you in my thoughts. It took such strength and bravery to tell your story. I take multiple meds for preventive action and when it hits. I’m fortuneate it took less time to find the closest combo to at least head off some of the migraine headaches. I’ll tg to keep this brief. I have co?lications from physical problems which over lap the migraine symtoms, since the migraines originate from two closed injury accidents. The second one also causing brain damage.
    Any way, this is about you. Sorry, I wandered. You are a brave person of unique stamina. You have my greatest respect.

  • Jules2dl
    4 years ago

    Dear vd1234;
    Your story moved me to tears. You truly are an inspiration as you continue to fight the good fight against the demons in your life.
    I recently went to the Jefferson Headache Clinic in Philadelphia and they were able to break a chronic daily migraine I’d had for almost 3 years. They weaned me off of Topamax, which wasn’t helping me anyway, and I was surprised to find that the “optical migraines” I’d recently begun getting disappeared completely. Also the dizziness, vertigo and crippling brain fog I was experiencing on a daily basis disappeared as well. Every patient gets a complete psychiatric evaluation and MMPI test, as the docs at Jefferson believe in treating the whole person. Finding a doctor who is able to treat both the migraines and my own mental health issues was such a blessing!
    We are in the midst of great financial difficulties, and the trip to Jefferson was quite a hardship for us to manage, but it was well worth it. There is a thread about Jefferson in the forums under the General Questions category if you’d like to hear what others are saying about it. I spent many years as a patient at the famous Diamond Headache Clinic in Chicago, and they weren’t able to do in 12 years what Jefferson accomplished in 8 days.
    I will keep you in my prayers for healing and comfort.
    Sincerely,
    Julie

  • Poll