Migraine Setbacks and Disappointments – I Will Survive

Fourteen years ago, my Migraines were definitely chronic Migraine. I was in bed with them all day five or six days a week. Then, I finally got to a real Migraine specialist, and we were able to make slow, but consistent progress. It took four and a half years, but eventually, we did more than make progress. We were able, as far as I was concerned, to come close to a miraculous treatment regimen. With that regimen, I often got four to six weeks between Migraines!

It was unbelievable, and it was definitely too long to last forever. Almost three years ago, other health issues caused me to have to discontinue one of my preventive medications and cut the dosage of another one by 50%.

My Migraine specialist suggested another medication. I tried it. Not only did it not work, but it caused significant cognitive side effects. There were days when the aphasia (Inability to use and comprehend words) was as bad as it often is for me during a Migraine.

In November, I had 25 days of Migraines and headaches, and my specialist suggested trying Botox injections. My third round of Botox was earlier this month. It’s working well, but I’m still not back to where I once was. I’m still having an average of eight Migraines a month, and that’s still too many. With my having advanced glaucoma, my ophthalmologist encourages me to prevent as many Migraines as possible because there’s a chance of Migraines making the glaucoma progress more. There’s also the issue of taking medications for other conditions that cause me pain. With two Migraines most weeks, that only leaves me one other day that I can take anything for the other pain without risking medication overuse headache.

So, we’re still working on better Migraine prevention. I will survive this, and I simply can’t allow myself to get too disappointed and frustrated. Negative expenditures of energy are never productive. While we’re working to improve the effectiveness of my treatment, I’m working hard to control triggers and to pay attention to my overall health since being less healthy make us more susceptible to our triggers. I’m working to:

  • stay well hydrated;
  • watch my sleeping patters – going to bed and getting up at the same time every day, not sleeping too late in the mornings, and trying to be relaxed when I go to sleep so I’ll sleep well;
  • eat healthfully; and
  • get more exercise.

Intellectually, I know that no treatment regimen is effective forever, but my emotions cry out, “Why not?” With the help of my Migraine specialist and more patience than I usually have, I will survive this too!

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)
  • Janet
    5 years ago

    Thank you for sharing your latest story.

    I haven’t gone more than 3 full days without a migraine in 13 yrs. actually it was last week that I made that 3 day mark. It’s becoming a faded memory. But it happened once in all these years…I’m praying for a repeat performance.

    Blessings
    Janet

  • 5 years ago

    I’m so sorry to know you’re in a bad time right now Teri and I’ll be thinking of you hoping it swings better very soon. I just had a very bad 5 year chronic period and am finally having some relief for the past 3-4 months and am hoping for a good period here for awhile (new neuro, retrying meds that didn’t work years ago, etc.). All the best.

  • Elaine Gross
    5 years ago

    You have been such an inspiration and a source of support for me in the past Teri, and I just want you to know how grateful I am to you, and how much I am praying for you and your “survival”. I know you will survive. You’re such a fearless advocate, and a sensitive, giving person.

    I too went from bedridden to now just a few migraines a month. A combination of Botox, Topomax (do not like the side effects, but it works), exercise (which makes me feel great! But I had to force myself to do it at first). Also, I have neck issues, and my neurologist prescribed physical therapy, and that made a big impact. I still do the exercises at home that physical therapist gave me to do, and it really does help. Also, when I feel a migraine coming, I fight lying down. That makes it worse for me. If I take a walk, or just walk around the house, it often passes. It’s funny, it seems counter-intuitive. If you lie down you feel worse, you stay upright and try to move around you feel better. Go figure!

    Elaine

  • stacysillen
    5 years ago

    Hi Teri, It’s good to read your story. Why do you seem sure that the Botox won’t “work forever”? In my case Botox took almost a year to work, and I get a nerve block in my neck right before it wears off to get me through til my insurance will cover the next shot. Life changing. I hope for the same for all of us. Forever! Why not?

  • 5 years ago

    Teri,

    I was pleased to read an update on your progress. I think of you often and say prayers for your improvement. You are such an inspiration and definitely one of my “migraine heroes”. I’m happy to hear that Botox is helping and hopeful that you will continue to improve.

    I’m at a similar place as well. Preventives have me down to about 8 a month, but with back problems, I’m still in pain most days, unable to use pain medicines out of concern for MOH.

    Stay strong!

  • Lisa
    5 years ago

    Hi Teri,
    I follow all your stories and truly respect your journey and wisdom. At age 40, I find myself at the point in the road of scheduling Botox. After trying all preventatives and acupuncture, but not yet at the point of needing Vicodin and such (I have a high tolerance for pain) and I live through the 3-5 day long headaches on the couch, with migraines at least 15-20 days a month (during “stormy seasons” November-June). I find myself in the off time, enjoying only 10 or so migraines a month with less chronic daily stress/tension headaches in a sort of bliss awakening right now. As I read all of the experiences on the forum regarding Botox I am very worried about making everything worse. I have always had neck issues, that is where most of my headaches begin and I am so worried the Botox will create more issues than it will help. I am on LTD and they are always pressuring me regarding my “so called self-reported symptoms” so I struggle with moving forward with the Botox (under a bit of pressure) or trying chiro/massage therapy and yoga which worked in the last for the blip I could afford it, even though it is frowned upon as a real therapy in the eyes of insurance….(not that migraine is a real disease, right? Grrr.)
    Bottom line….is Botox worth it? I’m so afraid of making things worse. I’m with a brand new neuro. Got approved in 4 weeks, they do procedures constantly. So scared. Thank you for any advice.

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