Refractory Chronic Daily Migraines. Is there no hope??

By michali

3 min read

So I'm one of the lucky few to have A) Chronic Daily migraines (for 18 years now) b) Refractory migraines C) Familial Hemiplegic migraines. I used to get migraines a couple times a year as a kid. Even in elementary school, looking back, I had Alice in Wonderland syndrome, though no actual migraine attack that followed. I thought everyone had unusual hallucinatory episodes like this from time to time. What did I know. I was 6.

Then at age 19 I got knocked out by a lady sledding down a hill on an inner tube. She hit me in the ankles coming around a blind bend, and according to those around me, I flew in the air, landed on my head and was knocked out. For a few seconds. Being a dumb college student I got up once the blurry vision, sunspots and dizziness passed and went on my way. Then I woke up in the middle of the night unable to move my neck with my head pounding. They put me in a neckbrace. That's it.

Half a year later I woke up one morning with this awful pain in my head, feeling weak and sick. A few days later my boyfriend found me unable to speak having what looked like a one-sided seizure. I went to a headache specialist. He said I'd probably suffered a minor stroke (we now know this was a hemiplegic aura) and put me on Depakote for migraines. Nothing changed. I was pretty much in bed for 3 straight months. Since then I've gotten better at coping, have two kids and manage to have a relatively active work, though with my children being quite small I have found it impossible to work, care for them and deal with my headaches. However, the headaches have become worse over the years, with symptoms, sensitivity and triggers all increasing. Being a passenger in a car at night is usually a sure way to get a headache, which is why I wear dark sunglasses. If sunlight hits something at just the right angle and then reflects back into my eyes, that's a certain aura to come. At Perfume, incense, various household cleaners, heavy aerobic activity, any alcohol at all (I haven't had a drink in 7 years), the smell of gasoline, working on computers too long, the wrong kind of lighting, music with a heavy base, any change in weather, too much heat, too much cold etc. are all likely triggers. This hasn't always been the case.

I have tried a million non traditional approached and been on more preventative medications than i can count. Methersergide worked for 8 months in 1997 then suddenly stopped one day, and Flexeril today gives me an occasional migraine-free day. Pain killer rarely work, and when they do, it's only for an hour or two. Unless a migraine is at it's highest level or hasn't let up for days on end even for an hour, I can function without most people suspecting anything is wrong. My mom, my husband and my kids bring me a tremendous amount of joy. I love to read, to travel and to horsebackride. I love movies and modern dance. But everything I love has this ugly grey film on it, and that kills me. I wrote a poem a couple years ago "My constant companion" that sounded like a love poem. Towards the end the reader discovers the lover is not good for me. Not till the last word does one find out the constant companion is PAIN.

Any words of support, advice would be appreciated. I don't feel sorry for myself often. I just want to be understood.

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hart Member
my dear. i hope you are getting along. i too have HM and the longest i have been without a migraine in the past 8 months is 36 hours. yet, even those 36 hours have some kind of pain. your trigger list sounds like mine too except that perfume doesn't both me so much. it takes a really unusual smell to incite the aura for me. anyway, wanted to pass along to you that you might consider 6500 kelvin full day light bulbs for your home (NOT full spectrum!) they MUST be 6500 kelvin. do some googling, see what you think. Secondly, google "precision tinted lenses". at first, this sounds like snake oil. but, there is some very good research here. i had been an academic and for a limited time, still have access to medical journals. also google the FL-41 tint and migraines. Again, it may sound like snake oil, but there is very good, sound research here. For me, I felt like these lenses weren't yet another drug in my long list of drugs that was going to make me sicker for 8 weeks only to find out it didn't work for me. so frustrating. if you are willing to really educate yourself about these lenses and want some help getting more info, do let me know. I haven't gotten my lenses yet but they have been mailed to me. I am hoping they make a huge difference in my world. Don't know for sure yet. I am cautiously optimistic. But, for my two cents, I was willing to try anything that wasn't another drug and had some viable scientific research behind it. Since you have some strong visual triggers, perhaps it may work for you as well. Best, Kerry
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Hi there. Like you, I've been cursed and besieged with headaches. I was about 7 or 8 when I started getting headaches. At the time, migraine was unheard of so whenever my mom would take me to different clinics, the doctors all suggested that I be taken to optometrists. As a result I ended up wearing glasses whose lenses kept changing as months and years went by. When I did have headaches, one or both sides of my head were affected, I was nauseous, my palms were cold and clammy, I perspired heavily and I would sometimes faint, and I could smell something that was difficult to describe. I called it the smell of the insides of my head or brain (I later realized that was my olfactory aura). I also noticed that my headaches would have schedules. For instance tomorrow I would have a headache at 8 AM till 4 PM. For 5 days, I would have headaches at the same time. Then when I was 15, I took a test to find out what headaches I had. The signs and symptoms pointed to either migraine or cluster headaches. I suffered from headaches for years without any medication. At 20, I tried an OTC med whose main ingredient was feverfew. The label says it could only be taken for up to 3 months. I was astonished that I finally felt relief from my headaches which I experienced every single day of my young life till 20 years old. I was migraine-free for 3 years (I only had occasional headaches). At 24, I got into 2 motor vehicle accidents. It was then that the exact same headaches I used to experience had come back but slightly worse. Feverfew wouldn't work anymore. Over the years I was prescribed different meds for migraine. Maxalt worked only for a short period of time. Then I was prescribed Imitrex which didn't work. My mom, who also suffers from migraine, gave me Zomig to try. It worked, but it made me feel exhausted and felt like I was floating in the air (but I couldn't feel my headache). I've been on Zomig (one of the triptans) ever since. It doesn't always work but at least it works sometimes. I'm 37 now, I still suffer from migraine, but my migraine no longer has a schedule; I just get it anytime, anywhere. It sucks.
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RachelZ This is the place for you then. 😀 Like you, as a small child I remember looking at my doll and her head shrank. It never occurred to me that was not normal. Like you I have also taken solace in poetry (however bad mine may be!) including one that sounds extremely similar to your own. I do not have a diagnosis of Hemiplegic Migraine, but often suffer stroke like symptoms with my Migraine attacks. Many others here suffer similarly. So yes, you are understood my friend...
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how fascinating....I slipped on ice while in college, and hit my head. Not too long after that, I began struggling with migraines....and I've never put two and two together until now.....