Living Nightmare

It came out of nowhere. I literally had no headaches one day, and it started the next. While I type this, it’s Oct 2nd, and I remember the date it started to be Oct 3rd (2003), because I had gone out of town to meet a good friend I met over the internet. I started popping Tylenol for the mild headaches, but they came every day. By the time my wedding anniversary came, I was taking dangerous doses to combat the pain. I remember going to my GP and telling her I’d taken 9 Tylenol in under 6 hours. She referred me to a neurologist who sent me for an MRI, which came back normal. I was started on Amitriptyline, which I responded well to. However, my husband lost his job and we lost the insurance, so I lost my medication, too. I was on my own again.

For a long time, I was back to fighting the daily headaches with OTC meds, but Medicaid eventually changed things so that I could get into the Cleveland Clinic.

What a miracle that was! I had been given the name of a wonderful doctor there by my husband’s best friend’s new wife, and was referred into the IMATCH program. For 3 weeks I spent the full day learning about new medications, relaxation techniques, physical therapy, biofeedback, and other means of fighting migraines. The first week alone was spent with IV medications meant to filter the OTC meds out of me and replace them with ones that would keep me comfortable while a proper RX plan was put in place. I’d never felt so good! By the time I was through the program I was a new person! And for anyone who can get into this program, I recommend it, BIG TIME! The people involved are caring, dedicated, and SO helpful!

I went through this program while living in the Cleveland, Ohio area. However, only 2 months later, I moved to Pensacola, Florida…and have since declined massively. I’m in more pain than ever, and my migraines are becoming worse with every passing month. Once again, my husband’s looking for another new job, we’re now living with my parents, too…and money is a huge issue. Stress is a daily problem, and the more stressed I become, the worse my headaches are. The less sleep I get, the worse I feel, but the more pain I have, the less I can sleep. Hormones play a definite role in my migraine ups and downs… Every month, the week before my period, my head becomes unbearable. Usually, as soon as things start, my head eases. Tea is a constant companion for me now, being about the only thing I can drink when I feel my worst. It’s simply a comfort thing for me.

I do have a good doctor, but the medications I’m on now don’t seem to be helping, no matter what we do with the doses. I’m currently on Topamax, with Amitriptyline to help me sleep (as that’s been a LONG time issue of mine). I’m also on iron, because I have a chronic problem with anemia, too. I’ve had numerous CT scans, even a spinal tap (which was clearly not needed, as the ER dr was looking for meningitis because I said my neck was stiff…it was due to the severity of the migraine I had and I told him that when I came in, I’d been in hopes he’d look for other problems when he did it, which was why I consented after the CT). I’ve not had an MRI since the one back in March 2004…which confuses me. I would think another should be done by now, with my decline.

My daughters, both pre-teens, have seen me deal with this for so long that they probably can’t remember a time when I was healthy and normal. I’ve been slave to this, planning my entire life around how I feel, having to wait to see how well I am as to whether or not I can leave the house. I’ve become so light sensitive from the constant pressure in my eyes that even the darkest sunglasses don’t help me, and the result is more pain. The same goes for sound sensitivity…not so great for someone who loves music, concerts, and karaoke.

The worst? My youngest daughter is now in the beginnings of her own fight with headaches. It breaks my heart.
The best… Is finding websites with communities like this one where I can see that I’m far from being alone. Where I can see there ARE people like me out there. I would never wish this on anyone, but if we must fight this, at least we know we’re not the only ones. And we can find places with answers, and maybe even some hope.
I’ve dealt with this for 8 years now, feeling alone, isolated, completely misunderstood, brushed off, feeling as if no one really heard anything I’ve said…and that no one could possibly know how I feel, or know what I mean when I try and put into words what’s happening in my head. It’s hard to describe unless you’ve been there, but if you’ve been there, you don’t WANT to put it into words and make it real.

I can’t even remember what things were like before all this started…

I’d like to get to a place in life where I can say that…because the migraines aren’t there anymore.

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 (7)
  • Nacole Goodman-Lee
    7 years ago

    I can really relate. Mine have been around only about 2 years now but I’ve always had headaches. Now I have a headache almost everyday and the migraines last anywhere from 3 days to 10 or so. I’m locked up in my house with doctors that won’t prescribe pain meds because they’re “addictive” and “a band-aid.” It’a rough.

  • Deborah Van Der Harst
    7 years ago

    Why can’t you go back on the meds you were on at the Cleveland Clinic?

  • Janice Worden Lamb Clemens
    7 years ago

    I have been dealin gwith migraines since I was 16 and I am now 47. It has just been in the last year and a half that I have the non-stop daily headache. I have been to my pcp and 2 neurologists with no relief.Mri and CT of the brain were both normal. I have been on so many different medications and the doctors have adjusted my doses so many times and I still have the headache, everyday. I have to deal with this and go to work, which increases my stress which in turn increases my headache. I cannot stop working as financially we could not make it on what my husband makes, as he has only been working part-time due to starting treatment for Hep C, which we didn’t even know he had until last year. He had a blood transfuson in ’74 while in the service, and the chemo treatment is not being easy on him. So my stress increased again, and my headaches increase from the stress.
    I stopped going to the doctor, I stopped all the meds axcept for my blood pressure medicaitona and my thyroid medication. I live on tylenol, advil and gooddy’s powder which really do absolutely nothing but I cannot afford to keep going to the doctor , my copays keep going up, the cost of the meds keep going up andwith our limited income I can’t afford it.
    I just take it one day at a time and pray the headaches will go away. sorry for venting…thanks Janice Worden Lamb Clemens.

  • Deborah Van Der Harst
    7 years ago

    Why can’t you go back on the same meds you were on at the Cleveland Clinic?

  • Brenda Gordon
    7 years ago

    What meds were used at the clinic to flush your system!

  • Cindy Gilbert
    7 years ago

    I have dealt with migraines for 23 yrs and see no end in sight. We are now trying Botox and that is a out the last resort for me. When mine get so severe I end up going to the dr to get a shot to just knock me out for a while and when I wake up it’s usually back to something I can handle.

  • Tracy L Thomas
    7 years ago

    Migraines and headaches are a part of my life! I can’t stand them!

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