Migraines
As all the people who have been part of my life know, I get migraines. I have chosen not to write much about them on the blog, because it’s just boring as hell to talk about, but I’ve decided to do this one post now and then shut up about it unless there is a big change. If the subject disgusts or bores you, skip this post.
I’ve been getting migraines since I was twenty. My mother had them. Her mother had them. I think my great-grandmother also had them and called them “sick headaches.” Rich people who had them in the 19th Century were said to have “neurasthenia.” These headaches come on one side of the head or the other: throbbing, piercing, brain-lacerating pain. Sometimes I get very strange visual disturbances when my eyes are closed (rather like Escher drawings). I always get extreme sensitivity to light and sound, and there is the nausea. Made worse by exertion or exercise of any kind. Until I was about forty, I’d get one on one side of my head before my period and one on the other side after, and maybe one sometime in the middle of the month. Unpleasant, but I could take over-the-counter drugs, cafergot, or prescription pain pills and pretty much deal with it. Since I was about forty, however, the migraines have increased in number and intensity. They are worse since I came to Portland than they have ever been.
Now I get from five to eight a month, and sometimes they last three days, so that means I am constantly either having a migraine or recovering from one. It’s hard to count how long each one lasts, because it depends on what I do about it. If I take a triptan drug every twelve to twenty-four hours till the migraine goes away, it will dim out or go away entirely for six to ten hours at a time, but it will keep coming back again and again (after the requisite hours of being able to function) for three to five days. If I don’t take any drugs at all, I can’t function: I have to go to bed in the dark, live in agony, and avoid movement, smells of any kind, light, and noise. In that case they’ll last for about three days. I seldom handle them that way, because it’s living hell. What I most often do is try triptans for a day or two (during which I can function and appear to be “normal” in most ways for most of each day, although sound and light are still very painful) and then go to bed and take heavy-duty pain killers for another day or two.
Before I left Houston, I heard about a nationwide study of the relation of migraines to PFOs (patent foramen ovale, or tiny holes in the septum of the heart). The link here includes a talking-head video of a doctor with wild white hair who talks rather encouragingly about all this. This is the most interesting breakthrough in migraine treatment I’ve heard of. It is still being studied–but on volunteer patients–and isn’t actually “approved” for migraine treatment yet. There was a study center in Houston, and I applied to be part of the study, however it took nearly two years for that study to get under way, and I ended up moving to Portland before it ever started. There’s also a study center in Seattle, which is about three and a half hours from Portland by train, and I’m so worn out from these damn things that I’ve applied there, and I’ve tentatively been accepted. Sometime in the next week or so I’ll go to Seattle and have tests done to see if I have PFO. If so, then I’ll get the procedure done to insert something into my heart to close the hole. Over time, this thing should dissolve, and my own tissue should grow to fill in the former hole. About 55% of the people who have this done have a complete cessation of migraines. Another 14% have a significant reduction in number and severity of migraines. So I’m going for it.
Let me add that I have, over the past 40+ years, tried just about every damn thing anybody in the world ever suggested might cure these migraines. For the sake of covering this topic thoroughly, I’m about to list everything I have tried, and I hope anybody who reads this will get a laugh from it. Some of these remedies helped a little, or helped for a while, and then didn’t help any more. Some of them have made enormous beneficial changes to my whole life (that would be yoga, meditation, and psychotherapy), but they didn’t get rid of the migraines. I’ve probably spent about as much of my lifetime income on migraine treatment as I have spent on shelter, and I’ve made just about every “lifestyle” adaptation that was ever recommended. I’ve deprived myself of the pleasures (and costs) of alcohol, coffee, and sweets for the past twenty-five or so years. And still these damn things rule my life. I have tried to see what the benefits could possibly be, and I can see a few: I’ve taken care of my mind and body with perhaps more assiduity than most people; I have avoided alcoholism, obesity, and a great many other horrors I might have inflicted on myself; and I have become acutely aware of what is going on in my body (especially in my head) just about all of the time. But on the whole, I think I might have gained these benefits in some other way, and I’d be really very pleased to say goodbye to migraines forever.
This is what I have done to cure the migraines:
Drugs: aspirin, Tylenol, ibuprofen, naproxen sodium, darvon, cafergot, Tylenol 3, Fioraset, Darvoset, IV demerrol, Midrin, triptans (Imitrex, Amerge, Axert, Zomig, Maxalt, Frova, Relpax), Inderal, anti-depressants (Zoloft, Cymbalta), Depakote (valproic acid), Verapamil, Vicodin, Migracin.
Psychotherapy (five times, for a total of about 12 years).
Semi-medical solutions: Rolfing, chiropractic, cranio-sacral therapy, hormone therapy (patches, pills, several kinds of HRT).
Diet: no chocolate, alcohol, caffeine, sugar, Aspertame, MSG, citrus, or cheese; black tea, green tea, herbal tea; tried avoiding wheat and dairy for a year (no change); tried Dr. Sheldon’s “Food Combining Diet” for several years (not much change in the headache patterns, though I felt terrific in other ways).
“Other”: yoga, meditation, acupuncture, ginger tea, ginger baths, moxibustion, homeopathy, crystals, more frequent sex, less frequent sex, feverfew and tincture of feverfew, butterburr, willow, flower remedies, esoteric healing and Healing Touch, massage, Chayavanprash (Indian tonic), Ayurvedic medicine (daily self-massage with sesame oil, not using microwave, dietary changes), Noni juice, fish oil, B2, B1, B12, mega-B, acupressure, boiled milk with nutmeg, aromatherapy (especially bergamot and lavender), orange-tinted glasses, ice packs, hot baths, hot stones, African traditional healers and their medicines, psychic healers, hypnosis, Chinese herbs (including a foul-smelling, horrible-tasting black herbal mixture I drank twice a day for six months), co-enzyme injections, Qi-gong, Tai Chi, and basically every “healing modality”–scientific or flaky, spiritual or quack, holistic or fragmented, widely marketed or secretly shared, known to my generation. And probably a few more I have forgotten.
So that’s all I’m going to say about this for now. If it turns out that I have a PFO and I get the “device” that closes it, I’ll let you know what happens after it’s over.
Tags: migraine, migraineur, What does it mean?
Kendall
When I had the worst headache of my life following the stroke that paralyzed my left side, you sat by my hospital bed day after day and supported and comforted me. I wish I could do something for you, but I can only offer my compassion, and at least a little understanding of the pain you must often endure. I hope your trip to Seattle offers you hope of healing.
Tomorrow is the 19th anniversary of my stroke. Thank you once again for being there for me.
Margaret
Nineteen springs. Nineteen years to tell and hear stories, to love all we could love, to be grateful for what we have and to forgive ourselves and those who can’t forgive us. Nineteen years you’ve dealt with wheel chairs and physical therapy. Nineteen years you’ve continued writing and I’ve continued adventuring. We are still saying thanks to each other and to the wide world nineteen years after that May Day.
apologies for occasional totally unhelpful interjections and ‘advice’, which you must have heard a thousand times before and made you yell with irritation and indignation ….
I suffer from migraines, too, but definitely not to the degree you do. Mine usually come once a month, usually on Monday afternoons. I get that aura so I know they are coming. The pain is right over my left eye. It hurts so much, I cry, sometimes scream. But I get in the shower and I blast first hot, then cold water over myself–for about 15 minutes. That “shock” helps a little. Then I just sleep it off, pillow pressed hard over my head. I’m usually OK the next morning. Do you experience that sense of clarity after a migraine (kind of like you waged a major battle and now you are the victor)? I do, but no amount of clarity is worth that piercing, head-in-a-vice pain. I am praying that if you have the PFO procedure, you will win the battle forever.
Oh, Dave, I’m so sorry! I love all we have in common, but I wouldn’t wish this on anybody for any reason. Can’t say I’ve experienced the clarity. Could it be that after the fog of the headache, normal perception feels exceptional? That’s my take on it anyway. May we both overcome this crap!
I can only wish that you (both–and all sufferers from migraine) find some kind of relief. It sounds truly dreadful; almost unbearable–literally.
It challenges my classifications of “good things” and “bad things” to hope that you do have PFO–[which seems, on the surface, a “bad thing”] but, if it means that this new treatment can help, well, I guess that makes it a “good thing” indeed. All best wishes for success!
Thank you for this post, Kendall. I have a sister-in-law who has suffered from them for years (with little relief) and this helps me to understand better what it must be like. If I may, I’d like to forward this post to her so that she can read about your experience. I don’t know if she has heard about the PFO procedure and I hope that it proves to be an eventual place of relief for you from the migraines. No one should have to live with that kind of pain!
Definitely! This is an open blog, and I’m happy for anyone who wants to read it, especially if the info can be helpful. Thanks very much to both Tigers. In fact I have a migraine today, so I can’t say more–the blinking screen hurts.