A living nightmare

By tattoogurl

2 min read

I'm a 44 yr old woman and if you can believe it, I've had migraines as far back as when I was 5 years old. My paternal grandmother suffered severe migraines and living in a multigenerational family, it was often her who stayed up all night with me, crying because my head felt like it was going to explode. She held my hair back while I threw up on a very regular basis and respected the dark room, no noise, no smell, no movement environment I needed.

I was never migraine free. I had a migraine every day of my life, and it really wasn't much of a life. I did what I could though to make the best of the lousy hand I was dealt. There wasn't treatment at that time...no triptans...just aspirin (which tore up my stomach) or Tylenol. They were somewhat bearable until I got to my mid 20's. Minimum pain scale 5/10 every day...and that was a good day. I tried seeking medical assistance only to be put on antidepressants---I will admit it is pretty depressing to feel that bad all the time. I lost friends and relationships because of it. I never felt well enough to go do anything.

I kept a migraine diary, knew all my triggers, tried alternate therapies...to no avail. A neurologist tried me on Topamax which I could not tolerate. Then I was prescribed Verapamil. It was so-so. These migraines scared the living out of me because they became an extremely neurological process, meaning I would weaken on the left side of my whole body. I wouldn't be able to see out of my left eye, my speech was slurred, and I really couldn't walk because my left leg didn't understand I wanted it to move. I FINALLY, just within the last few years got so fed up, I demanded my doctor help me. I did not care what I had to do, the pain was so bad. ER visits weekly and living in a vicodin haze.

Being a Social Security Disability examiner, I actually qualified for disability benefits. I think that would have already sent my depressed state down the toilet. I was referred to another neurologist who had great success with Botox, but of course my insurance wouldn't pay for that. So a potential treatment was just out of my reach and I was frustrated. I was also sent for a lumbar puncture and was diagnosed with pseudotumor cerebri. I was begging to get LP's for the short lived pain relief. Try telling people who already think "it's all in your head" that you have a "fake brain tumor". I just got stupid stares. Then word from my neurologist came that the Botox would be covered. I got my hopes up way higher than I should have, but considering I have chronic intractable migraines, I needed that hope. Amazingly, they worked!! Now I'm not 100% migraine free, but 2-3 a month is a heck of a lot better than every day.

Treatment options are a personal decision, so I would never push Botox on anyone. My experience was favorable and I'm finally able to live a much happier life.

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Katie M. Golden Moderator
Dee, I'm so happy for you that Botox works! It's amazing to see how drugs and treatments have evolved over the years. Too bad it wasn't available years ago. I'm sure a lot of us would have appreciated less headache days 10-15 years ago. I've been doing Botox for about 3 years. I wanted to mention that it's possible for the effects to wear off or not last the full 3 months until you get the next round. I certainly hope this never becomes the case with you. I bring it up so that you continue to manage your triggers and take care of your body. That should help the effects of the Botox to last longer. Thanks for sharing your story! -Katie
1. tattoogurl Member
 Katie, Thank you for your comments!! My neurologist did warn me that for the first few rounds of injections, I may not get the full benefit. So far, I've not really had that problem and he's increased the dosage appropriately. I also didn't realize how bad the pain in the lower part of the left side of my head in the back, as well into my neck had been until the first round had done so well. So he has started injecting my neck too. I started with my first round in November 2013. The first time I had a really bad migraine on the Botox, I called the nurse really freaking out! I couldn't understand why I would have that bad of a migraine. Since my expectations had been exceeded from day one, I did not think for one second that I would have one that bad. (and my perspective also changed...going from daily misery to pain free for the first time in almost 40 years, I wasn't prepared to experience any pain at all, so when it did hit me I was down! It seemed to be the worst ever, but I wasn't comparing it to my regular pain, but of being pain free.) I was really worried about spring time. I love the beautiful weather, flowers blooming, trees starting to fill back up, but it has always been my worst migraine time. I love cuddling with my dogs on a rainy Saturday and watch old movies , but the weather is one of my biggest triggers. I was a bit worried how well the Botox would work during my worst migraine time of the year. So far, I've done well. I've had a few more incidences of migraines, but NOTHING like they have always been. I'm really over the moon!