50 Years of Migraines and then Success

My story is like most of yours. Migraines started for me when I was 3. My family doctor came to our house and gave me a barbiturate shot. When we moved away from our small town, that option went away. Probably a good thing.

I am now 60.

I never register on these sites – I just scope things out for new information. But I was so touched by many of your stories, I decided to make an exception. After writing a very long story, I mistakenly deleted it–aahh! Probably a good thing, too–i’ll make it shorter this time!

My history is like many of yours. I have taken every medication known and every combination of medications. I tried multiple diets and supplements, multiple religions, and every combination of non-traditionals and medications. By my 20s, I took handfulls of meds, including narcotics, and had chronic (2-3 a week) migraines that lasted 2-3 days (so, let’s see, how many days left a week for normal life?), sometimes more. Weekends and holidays were a given–“let-down” responses always produced a severe migraine. My family was skeptical. I experienced every symptom except aura. Post-headache, I needed 1-2 ‘recovery’ days since I had ‘syncope’ or ‘near-syncope’ (fainting) every time I stood up. I went to the ER 1-2 times a month for injections (if insurance had allowed it, I would have gone more often). Identifying “triggers” was a joke – I had so many headaches, who could say what the “trigger” was? Life itself? My neurologist described it as sitting on top of a fence post – anything in life, physiological or otherwise, that caused a slight wobble inside your body, caused a migraine.

In my early 30s, I convinced my neurologist I was capable of giving myself (I wasn’t, but I learned fast!) injections of DHE. They helped me mitigate the headache, but not always, and of course, they did not not prevent migraines.

My losses are also like many of yours. Where do I start? My migraines cost me early school success, degrees, friends, relationships, jobs, careers, even my 20-year marriage. Too much absenteeism, too much neediness. In those days, migraines were not recognized as anything “real”. That’s a little better now, but stigma and disbelief is still very common.

Mostly, migraines cost me my sense of self. I was muddling through life, dull-headed, and in constant fear of the next one.

My first pregnancy at age 32 gave me a clue–only a few migraines. But they came back after, full force. The worst of it–I could barely care for my toddler child. My migraines were completely debilitating. He had to take care of me! No child should have to do that.

By my next pregnancy at age 41, I had heard about the upcoming release of triptans. I took myself off everything, of course, in order to get pregnant, so after I was done with breastfeeding, I kept to that until triptans arrived. It was a hard time.

Triptans were indeed a godsend. But I discovered that they can be abused too (I thought that applied only to pain-killers)–I eventually found myself taking 10-12 doses a week (multiple triptans), with constant ‘rebound’ headaches. A week-long bout in the hospital cleared me of those levels, and sent me home with 1 triptan plus many of the old standby medications. Headaches were down to 2-3 week, usually but not always managed once they occurred with the triptan, but then I got dull-headed again, suffered peripheral arterial disease (from Sansert), fell asleep while driving (yes, seriously), and little ability to think on my feet, which my job required–on and on. You get the picture. Nothing really made a measurable difference. I took a 3-year hiatus from work to try to figure it out.

Then, about 6 years ago, I came across BHRT–Bioidentical Hormone Replacement Therapy–as a treatment for migraines. It took a few years to find the right doctor and the right regimen, but there is no doubt in my mind that BHRT is extremely helpful. (And, it improved the rest of my life immeasurably!)

To make a long story short, I now take Evamist (bioidentical estrogen), progesterone, testosterone, Relpax/Naproxen 6-9 times a month (not a week!), and Sumadose, if Relpax doesn’t work.

A couple of years ago, I was diagnosed with Confusional Migraines. These occurred 2-3 weeks, lasted about 90 minutes, and caused havoc in my job, since I stand up and talk for a living. No pain, just something that looked like mini-strokes. At first, the diagnosis was Transient Ischemic Attacks, but after multiple MRIs, heart studies, etc., very little occlusion was found. So my neurologist decided to try treating for this, even though most of the literature said that Confusional Migraines occur primarily in young children. He gave me Amitriptyline–old, well-known, cheap. I now take 40 mgs at night–and the results are still astounding! I never wake up with those 4 a.m. migraines (I stopped taking it for a few days, just to check), and the confusional migraine episodes virtually vanished!! Gone!

I still have migraines. None of this is really a cure, no matter what internet sites might proclaim. But they are fewer (I never need more than my 9-pack of Relpax a month). They are far less intense. All the other symptoms–nausea, vomiting, light/sound/smell/touch intolerance, aphasia, inability to walk–are mostly gone.

They are manageable. I can treat them, usually successfully. I can live my life. I no longer live in fear of the next attack.

Besides the medications listed above, I have found the following helpful:
Botox and Trigeminal Nerve Blocks
– Minimizing nitrates, nitrates, preservatives (but don’t get militant about it)
Biofeedback – to learn how to breath slowly on demand
– Meditation – to continue breathing deeply and slowly, and to clear your mind
Acupuncture and body work – limited, though, because I can’t do it often enough to be effective over the long term

Massage therapy is great, but it doesn’t last. Chiropractors caused only more pain.

It despairs me to hear of others who live in misery nearly every day. So, here is what has helped me me most over the last 57 years. To be sure, every person is different, but for me, these are the “bottom-lines”:

1. Take charge of your own life. Learn everything you can about migraines. Take notes. Take the research in to your doctor, and then tell him/her what you want. No doctor, even the best, will be as invested in your life as you are. Then keep trying alternatives until something actually works.

2. Find a good neurologist–one that has “migraine” splashed all over their website. Many neurologists consider migraineurs the bane of their existence. They would much rather be challenged by more esoteric conditions. If they don’t ask you lots of questions, and then spend the time to really listen to you and consider your ideas, find someone else. If they treat you like a child, a complainer, a neurotic, or one of those hysterical women, walk out. If they aren’t willing to do some additional research on your behalf, go elsewhere. Many of these doctors have their own “methodology” and are stuck in their own thinking. Find someone who will search for the right treatment for you. Find someone whose office returns your phone calls the same day, and if it’s an emergency (an unrelenting headache), within the hour.

Once you find the right neurologist, and right treatment, you can go back to your GP (a good one), and he/she can continue the treatment. Then you need to go back to your neurologist only once a year, or if new issues emerge.

3. If you are a woman, consider BHRT. Don’t listen to the FDA on this issue. If you are wary because of the research that came out linking increased breast cancer with HRT, do some more research. Remember, that extensive study did not use bioidentical HRT, they use a pharmaceutical based on horse urine, chemically different from bioidentical–big difference. If you are still concerned, or if you have a family history, as I do, of breast cancer, then go to a breast specialist, and get every test available–breast duct fluid extraction, genetic, etc. I did, and my results showed a risk level below that of most women. My breast specialist signed off on BHRT with no qualms.

4. Become a Buddhist – or whatever it takes to help you live one day at a time, without fear, and without judgment of others (it’s wasteful). There is no past, there is no future, just this moment, this day. Although I’ve slipped on meditating every day, the daily effort to be conscious and aware in the moment has helped so much.

5. Finally, be happy. I’m serious. I am blessed to have been born with a propensity to be positive; not everyone is so lucky. So read up on “happiness”, find a good therapist who will help you create a roadmap and guide you along the way, and resolve every day to be happy, and to give happiness to someone else. Listen to music every day. Experience nature every day. Don’t let yourself get isolated. Be kind to other strangers – it will make you feel good.

Find a good friend who loves you as you are – but then, make the effort to not talk about your headaches all the time. Then be a good friend to her/him.

Be happy inside yourself. Read “The Power of Now”.

If you are a news/political junky like me, make yourself turn it off one day a week. Don’t let yourself get roped in to other people’s problem – be compassionate. That’s different than becoming enmeshed.

Happiness didn’t reduce my headaches, at least not a lot – medications did. But not until I vowed to be happy again, like when I was a child, did my life turn around. Twelve years ago I married a man who is extraordinarily empathetic. He and I created a business that gives me the flexibility I need sometimes. I love my work. We moved to a mountain community, and the crisp high altitude air seems to have reduced my headaches even further. Who know why, I just take it in. Find what makes you happy and then find ways to live it.

You can create what you want your life to be. Once you get your thinking turned around, it’s not so hard. You can do this.

Best to everyone.

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 (12)
  • Jeri
    5 years ago

    Thank you for sharing your story! Many similarities to the journey that I have faced. At 47, I am finally seeing a little relief, just starting BHRT and it is still being tweaked. I am clinging to the new hope that I have found, but cautious at the same time. Thank you for reminding me to be “happy” with the progress that has been made and to reflect hope in my attitude!

  • migrainenana
    5 years ago

    Thank you so much for sharing all of this-it couldn’t have come at a better time for me. I recently made an appointment with a BHRT specialist for the end of this month and am now even more excited to be going down this road. I’ve been suffering with chronic migraine for about 7 years, but mostly have an atypical form that is characterized by vertigo, dizziness, imbalance, ear fullness, photophobia, and nausea more than crushing head pain. A series of back-to-back vertigo attacks resulted in a profound hearing loss in my left ear. Needless to say, I’m searching for any and all advice relating to migraine relief and you have provided us with so much food for thought-may God bless you for taking the time to share your knowledge with us.

  • B. Morebello
    5 years ago

    Thank you for your story and advice.. it’s just helpful to read encouragement from someone who knows how difficult it is some days and to keep trying because something out there will work for each of us.

    Thank you.

  • Janet
    5 years ago

    Your story is most inspiring. However, while everyone has some sort of cocktail mix that works for them, the “cocktails” are so very very varied.

    I’ve suffered from migraine since I was 10 years old. I am now 57.

    Pregnancy did the opposite for me. They brought migraines.

    I fear any type of hormone replacement as I had seen a doctor in 2005 who supposedly treated me with BHRT and literally he almost killed me. It took an awesome gynecologist and endocrinologist two years to rid my body of goodness knows what. I am sad we moved 2300 air miles from these amazing doctors to be near family ..our son, his wife, and our first grandchild in Atlanta. Since Emory university hospital is only an hour away..I know I will need to muster up the courage to find help once again. I know I can’t close my eyes and pretend things will go away.

    My new found faith in God in 2005 and His mercy and grace has saved me from 6 suicide attempts ….

    And meds….like many..I’ve had more than I’d like to remember. Frova is my new best friend for a year…but 9 pills I get don’t get me through a month….

    God Bless you for sharing your story.

    I admire those who have the energy and the desire to share their stories. I learn something from all of them.

    Blessings
    Janet

  • 5 years ago

    Just wanted to add to the thank you’s for your post, and also say I’m another woman who gratefully uses BHRT as an essential part of my migraine prevention regime after a lifetime of migraines.

    I also had NO migraines during my only pregnancy at age 32 and spent years trying to find a doctor who would even be willing try hormones to treat my migraines. Finally found one at age 47. Yes, even then it took a while to find the right combination and balance and that has had to change several times as I’ve moved through menopause, but the hard work has been worth it.

    My regime today includes: Cymbalta (SNRI), Climara (bio-identical transdermal estradiol), Endometrin (bio-identical progesterone suppository), over the counter DHEA (dehydroepiandrosterone, a precursor hormone), Migraine Defense, CoQ10, Magnesium, Calcium, B-6 & B-12

    I also use Relpax and Frova oral Triptans about 2-4 times a month with a reserve of Sumavel injection should I need it.

    Every migraineur is different, and it requires being willing to take on the responsibility for improving your health yourself before you can identify and partner with a good doctor. You need to do your own research and educate yourself about your health conditions and listen to your body and record diligently how it responds to what you take and do.

  • Trisha Gilroy Bomar
    5 years ago

    Thank you for sharing your story with us. I am working with my three Doctors trying to find something new. I have had migraines for 20 years, I am 43. I am now taking Topamax every night, Maxalt, Vicodin. I have tried many other things, Botox etc. My OBGYN and I have been trying different meds. I am going to ask her about the BHRT and come with information in hand. Mine are hormonal, everyone agrees. I had zero migraines when pregnant. You have also reminded me that I need to stay positive. I have two small children and I work. I push through my 2-3 week migraines. It is a hard life. I have a wonderful husband, thank God. When life is good it is GOOD!!! Your story made me cry and reminded me that this is my life. I only get one. I am just going to have to make the best of it. Thank you.

  • Kimberly McClive-Reed
    5 years ago

    Thank you so much for sharing this! I’m so sorry about your past difficulties, but so very inspired by how you turned them around (and never gave up). I know what you’ve written will have a positive effect on many of us, so again, thank you for the effort you made to share it.
    I’m completely in agreement with you about BHRT. I was diagnosed with chronic migraine in my 40s, and in a search for a preventive that would actually work (having been through the usual long list during 20 years of migraine), I did research into BHRT. I learned (as you did) that the “scare” studies were all based on non-human forms of estrogen rather than bioidentical estradiol. Very important difference!
    At her request, I brought my primary care doc copies of articles supporting use of HRT to suppress menstrually-related migraine. I also found a great review of several studies on the relative safety of bioidentical hormones (compared to the more common synthetics), authored by Kenneth Holtorf in 2009. I’ve been using estradiol patches (balanced by progesterone since I’m not menopausal) for over two years. It’s not a cure-all, but it’s significantly reduced migraine frequency and more important–length.

  • Nancy Harris Bonk moderator
    5 years ago

    Thank you for sharing your story with us, it’s very uplifting.

    I don’t mean to be nit picky, but ‘confusional migraine’ is not an actual diagnosis rather may be a more descriptive term. Migraine with aura, and I’m not saying you have this, may be a better direction to go. The reason I mention this is The International Headache Society has what’s called the International Headache Classification of Headache Disorders-III,beta version (ICHD-III beta version)which is the gold standard for diagnosing migraine and headache disorders. And confusional migraine is not a recognized diagnosis.

    At any rate, you’ve done amazing things to manage your migraines rather than let them manage you. For that I congratulate you!!

    Nancy

  • Bonnie Troop
    5 years ago

    I especially like this part: “But not until I vowed to be happy again, like when I was a child, did my life turn around.” I also like your references of being in the now, in present time. At age 54 sometimes I think of what it will be like as I grow older to live with migraine, so your article gives me more hope because of your positive attitude.

  • Michael
    5 years ago

    Thank you, thank you, thank you! Except for the female part of your experience, it seems as if you were writing my story. Also, I have only had five years of chronic migraine. I am male, 55 years old and migraine onset occurred at age 50. Your post and this web site have been a God send.

  • sandramhill
    5 years ago

    Thank you so much for taking the time to share your story. God bless you. I have found that 200mg. of CO Q 10 helps my migraines. Best of luck to you. Sandy

  • kate
    5 years ago

    Wow. Congratulations on finding answers. Your story is an inspiration.

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