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.