---ROBERT WIRTZ firstname.lastname@example.org
Diagnosis: CLUSTER HEADACHE
37 years old. 6'1" 180lbs. White Male. Headaches Started at about
20. Ex-Smoker 25 / day. Smoke-free 90 days+. Ex-Drinker, Dry 3
Years + Somewhat type A personality, learning to slow down a bit.
No history of major physical trauma, or head injury. 20-20 Vision.
General good health
Family history: Father, infrequent severe migraines. Brother, at least one migraine. Mother, later-in-life diabetic.
They started when I was about 20. I didn't know what they were. I had heard of migraines, so I talked to some people that either had, or knew something about migraines. After hearing about auras, both of sight and smell, all day pain, and then bed rest to ease the pain, I knew it wasn't migraines. What then, I wondered? after a few more bouts, I came to the conclusion. What I had was a impacted wisdom tooth or molar that has been acting up sporadically. I wanted to get some help, so off to the dentist for x-rays to find out which tooth needed his attention. I tried to describe the location- I had plenty of time to try to pinpoint it: upper jawbone, right side, under the cheek bone and way up high, deep. really deep. so deep the pain comes back out the ear, temple, and the side of the eye. Obviously a bad infection or something. Results of his exam? Nothing. Nada. Zero. Zilch. I walk out of his office I became a bit upset about the quackery I assumed he's practicing. I make another appointment with a new dentist, then in the meantime, the attracks of pain subside and vanish, and so I cancel the appointment. I thought to myself, whatever it was, it ran its course.
A couple of years later my vanishing toothache is back. I thought, Now that is strange! Cavity check proves nothing. So I make an appointment with an MD. In the meantime, now I'm getting very worried about a brain tumor or hemorrhaging. This was really hurting me badly. Each attack, my right eye waters and swells up, my nose both runs and clogs, so I'm blowing my nose. Each time I expected to see much blood, and maybe the culprit, a hideous multiple-legged parasite that has been making a meal out of my brains left in the tissue. Like a horror movie. No such luck though. I make it to my appointment date with the MD. Turns out this guy is talking major headache talk. He tells me of "clusters” and reads straight from a book. The symptoms match up. Cause? according to that particular book, unsure, but probably something having to do with alcohol. Hmmm... I know I had been drinking plenty recently. The doctor prescribes "Midrin” by Glaxo. Didn't seem to help. Then the headaches again subsided and vanished without reason. The following is my observations derived from my cluster headache experience of 17 years.
After that, every two years they come back, then they vanish. This is my cycle. I've come to expect them every two years around late summer or fall. I've noted a possible connection with cooler temperatures at night, and also diminishing daylight, until this year when they hit me in the late spring. I might yet try light therapy, as for S.A.D. sufferers.
4-6 WEEK LENGTH OF CYCLE
They start, finish, and sometimes even stir in their sleep with a metallic "thumbprint” sensation in the temple. I just know when they're coming back. But it is not a classic aura. In general, within the cycle, they get progressively worse: More painful and more frequent until they peak with sometimes up to about 5 or 6 each "#10s” a night, (A #10 is pain to the point of vomiting, shaking, and total dysfunction-suicidal pain.) they then reverse, subside, and disappear.
30 MINUTE INDIVIDUAL ATTACKS
If there is a blessing with my attacks, it is that I can clock them. They last about 30 minutes. It really gives me a viable fragment of hope to know, say in 20 minutes, it'll be over.
NIGHT TIME ATTACKS
95% happen at night. mostly at bedtime, but anywhere from just before sundown to just after sunrise. If I've been sleeping, they will jolt me awake. those are the really severe ones, you know, pacing, crawling, head-pounding. From this pattern, I sometimes dislike and fear going to sleep.
MEDICINES, AND SUPPLEMENTS I'VE TRIED
Aspirin, Tylenol, Motrin. Oh you can give me an oceanful, honestly they don't touch them. Midrin. I ate three bottles worth. I think I would have had as good of luck with Skittles. Calcium plus Magnesium, B and other vitamins Massive doses. Well, It was worth a try anyway. Ergotomine, 2mg sublingual. I had a bit of luck here. Knocked them out cold about one out of three or four times. just as if someone threw the switch. Amazing when they worked, absolutely nothing when they didn't. My neurologist thought she could do better. Hydrocodone, You all know about pain killers, it still hurts, but you don't care or remember. Verapamil 240 mg: I felt strange and they aggravated the headache. Indomethacin, 50 mg: big rebound on both sides of my head.
Reflexology or Acupressure. No luck. Ended up just hurting my foot and hand. Chiropractor. No luck.
Prednisone 20mg.: 9 day steroids. with Sansert 2 mg., (Methysyrgide) and Lithium 300 mg., with Trazodone @ bedtime. I don't know about all of these. maybe they're taking the edge off a little bit. The steroids threw some of the headaches from nighttime to daytime, then after their 9-day treatment was over, Wham! severe batch of them for two nights. After my cycle and medicine ended this year, my tongue and mouth swelled up badly with ulcers. Could have been all that medicine, or could have been a coincidence.
MY OWN SOLUTIONS FOR RELIEF
Hot Washcloth. as backwards as this seems, it helps a bit. after trying a cold pack and having them aggravated by it, I tried the opposite. During the attack, as hot as I can stand a sink full of water to dip and dab the washcloth to my eye area. Also a hot shower to the face and head - the tactile water pressure beating on the skin and scalp helps a little. Thumping. the back of head with ball of hand. At about 240 beats per minute.
Visualizations. During an attack, I've tried imaging a 10-toggle-switch pain panel-board, and manually "turning off” these toggles. If nothing else, by trying to build strong images in my mind's eye, it keeps my concentration somewhere else. It helps. Establishing and Maintaining Hope. The true killer of my spirit is when I've lost hope. Knowing the length of the attacks, like I mentioned above, helps. Also, prayer. During an attack it doesn't help me much, but when I'm effective at building my daily life with God, it's harder to be drained of hope. No matter what.
MOST RECENT THOUGHTS (I've been considering my body's natural reactions.)
On the first onset of an attack, when my body is "idled-down" in bed, I feel I got to move around physically. I get busy. I'll pace. I will increase my body's "idle speed." Sometimes I feel it might even limit their severity.
Then, during the waning period of my 30 minute attack, I'll let my body "idle-up." To get comfortable, I get my body cool. I cant stand clothes. I'll strip down and lay face down someplace cool.
But, strangely, on the other hand, My head likes it hot. i.e.: hot washcloth, hot shower. My thought: Body slows, blood cools, need warmer blood to head?
I've also heard of a cluster treatment using a hot pepper (capsian [sp?]) ointment to the temple to increase the skin temperature. It all might be possibly Heat/ Body temperature activated. I also recall one year my cycle was seemingly triggered earlier-than-normal by over-heating, maybe a possible heat stroke. All possible connections I'm considering. Any thoughts out there?
Like your other readers, I've seen far too many doctors who don't have many effective solutions. I've tried exercising, keeping my weight down, reducing stress, avoiding red wines (actually alcohol in general), reduced red meats, few cheeses, limited chocolate and coffee. I feel best on tea, Medications have included Midrin, Fiorinal, Propanadol, Amitriptyline, Vicodin, Propoxyph, beta-blockers, vitamins B6 and B12, oil of Evening primrose, Feverfew, etc. Imitrex and Fiorinal are the only ones that have really helped, and they vary greatly in effectiveness.
In recent years, I have gained weight and major life stresses have increased, but I had migraines when these conditions were not the same.
The change in hormones with monthly periods has had the greatest effect on having migraines, increasing in frequency and severity over the last 10 years. Like others, I did not have migraines when I was pregnant. After having three children, I noticed the shift from stress and foods triggering migraines, to menstrual cycles. In the last year, I've had 3 or 4 migraines in a row around the time of my period, more often then not, a few days before the period. They are definitely ruining my life.
Convinced the primary trigger is the hormonal shift of estrogen and ther hormones associated with menstruation, I submitted to a test in which I have been given shots of Depot Lupron to put me into a medically induced state of menopause for three months. Most others I know who suffer from migraines have shown significant improvement after menopause. So, I've had my three shots and have fully been in "menopause" for a month. Over the past three months, the frequency of the headaches has gradually decreased and the severity has been reduced with almost all headaches responding to Imitrex. On the basis of this trial, I have scheduled a hysterectomy for September. I can live with occasional migraines, especially ones that will respond to Imitrex. From what I have read, Glaxo Wellcome is coming out with a new pill form that will be faster acting, and Merck is coming out with a new sumitriptan substance as well. I trust that with the primary change in my hormones and the existing and pending new drugs, my migraines will be a thing of the past.
Depot Lupron shots are extremely expensive (about $350 each) and their use is not recommended long term, but if more people apply for this treatment, I believe they will find relief and researchers discover a treatment based on the change in hormones and various neuro-transmitters. I'll keep you posted.
I get one or two terrible migraines a month with many less intense headaches several times a week. These less intense headaches can still be very distruptive to my work, etc. and they must be treated with drugs. Due to this I take Esgic-Plus (it is like Fioricet) several times a week and for the headaches that do not go away with this drug, I take Imitrex tablets.
Here are my concerns. I have taken Esgic Plus for many years and worry about its addictiveness. How does one know when one is addicted? Can withdrawal symptoms be mistaken for a headaches (for which I then just pop another pill) or are these headaches more likely to be rebound headaches? What are withdrawal symptoms?
I am especially concerned about this since I do find myself frightened about the possibility of not having access to my medications and bring them everywhere. This feeling of dependency increases as I think more and more about having a baby and the fact that I will not feel comfortable about taking any medication once I become pregnant.
I have found all of the case histories on this website informative and extremely comforting. I would love to hear from people especially with responses to the following questions:
1. How does one know if one is addicted to Esgic? It is so easy to take the pill for fear of the pain that will follow that how can I be sure I've not become too dependent.
2. What is withdrawal from a drug like Esgic or Fioricet like?
3. What have pregnant migraine sufferers done to deal with pain during pregnancy. I know they say that migraines decrease for many women when they are pregnant but I'd love to hear from those for whom the migraines continued throughout pregnancy?
4. What exactly is a rebound headache?
These questions have been weighing on my mind for quite some time and although I was planning to discuss them with my neurologist when I next see him in the fall, I would prefer to hear from my fellow migraine sufferers first.
Many thanks. My email address is: CCANCELLARO@RANDOMHOUSE.COM