Posted by Tracey Chen (205.149.2.126) on June 04, 2001 at 18:45:40:
In Reply to: Chronic Paroxysmal Hemicrania [CPH] posted by John Bown on October 12, 1999 at 21:31:14:
To all fellow CPH sufferers:
I don’t know if anyone is still out there (I just found the messages you posted back in 1998), but I’m posting this message any way, in case you are, because I’d like to share my story, and I hope some doctors will read it too. I’d be happy to hear from any of you. (Note: this is at least 6 pages long when the font is 10 point Palatino and the margins are 1.25 inches left and right 1.00 inches top and bottom—over 4,200 words—so I don’t know if it will all come through. Please feel free to email me if you can’t read it all but would like to; I will send it to you as an attachment to an email.) In addition, if you interested in seeing a list of all the other chronic health problems I’m now struggling with to see whether you also have some of them, I’d be glad to send a list. Maybe by joining together and sharing as much about ourselves as possible we can find something other than the headaches that we all have in common, something that might help doctors determine the cause of these headaches.
My headaches began when I was 19. I’m 38 now and still have them, and I am amazed I haven’t killed myself yet. For the time being, indomethacin is helping me, but I suffered for many years before anyone even offered me this drug, and when I first tried it, I didn’t stay on it for long (because I was still having the headaches and I had severe itching that I believed was a side effect because it stopped when I stopped the drug). Now, years later, I’m taking it again and it seems to be helping. I take it only when I have a headache, rather than all the time to prevent them, because I worry about the risk of developing a tolerance to its effect (i.e., that my body will become so used to the drug that it won’t work against the headache anymore) and about the risks of using such a toxic substance long-term (i.e., that if I take more of it than I absolutely need this early in my life, I will hasten the development of damage to my system that will prevent me from taking it in the future). This of course means that I do still have to suffer the headaches until the drug takes effect, but—because I need this drug to survive—that is better than increasing the risk of not being able to take it in the future. If for any reason I cannot take indomethacin in the future (and I worry that as I get older this possibility will become more likely), I will have to kill myself.
But let me back up to describe my headaches. I was quite amused to find that others are using the term "ice-pick" to describe what it feels like because that is exactly how I described the pain to every doctor I saw between 1981 and sometime in the mid 1990s when I was finally offered indomethacin, but none of the doctors I saw before the one who gave me indomethacin seemed to have heard of any such headache pain (or they acted like I was exaggerating or imagining it). It feels like someone is repeatedly stabbing one spot on my scalp with an ice pick as hard as they possibly can. It also feels like someone is taking a pair of needle-nose pliers and jamming it into that spot, clamping down and twisting with all of their might. It also feels like some sort of very intense electrical shock or current is running a very short distance over and over again in the nerves in my scalp in this spot. It is stabbing, pinching, and incredibly sharp. Each stab lasts only a fraction of a second, is followed by no pain for only a fraction of a second, and then is repeated again and again.
The series of stabs can go on for minutes or for hours; it can last for a few minutes, be interrupted by a few minutes of no pain, and then resume for a few minutes, and go on like that for hours on end, or it can be one series of stabs that stops for no apparent reason after only 15 minutes and then resumes hours later in the day. They can come every day for months, for a month, or for only a week. After having them every day for months, I can go for months experiencing only a single stab (rather than a series) every few days, or the series of stabs can come back again within a week. There is no rhyme or reason, no pattern; there are no triggers; their occurrence is totally random. They have occasionally woken me from deep sleep, but more often they occur when I’m awake.
As one of you mentioned in one of the messages I read, the pain "is either there or it isn’t"; the intensity of the pain does not vary from mild to moderate or severe, and it doesn’t build gradually or taper off— it is on-and-off bursts of excruciating torture. However, over the years, the intensity of the stabs has ranged within the excruciating range (from "kill me now, God, please!" to "Oh God, not today, I still have so much to do and was so looking forward to having some fun today—I can’t XXXXing believe this is happening again; how long will it last this time?"). Once when I was driving on a crowded freeway I nearly killed myself and took a number of people along with me when one of these headaches hit with such intensity that it the pain literally knocked the breath out of me (as though I’d been kicked in the gut by a mule—I couldn’t inhale for a while, and since I was on the freeway it made me panic, which made it worse because that made my eyes overflow with tears, so then I couldn’t see or breathe).
Sometimes I hit myself in the head with hard objects to counteract the pain (even though the area affected is already tender). Another thing I do is to cause pain elsewhere in an effort to distract my nerves from the pain in my head—mainly by digging my fingernails into the stiff part of my ear as hard as I can. Once when I was stuck in a meeting that I couldn’t just get up and leave, I was digging my fingernails into my ear as usual, and the woman next to me happened to glance over at me. She jumped a bit, aghast that blood was pouring down the side of my neck (which I hadn’t even felt): I had dug my nails in a little too deeply.
When people witnessed my behavior during a prolonged or particularly intense series of stabs they treated me like I was insane. If I talked to anybody about my headaches, people treated me as though I were some kind of wimp who couldn’t handle a thing as minor as a headache, which was infuriating because over the course of my life I’ve had all the "normal" types of headaches (tension, hangover, caffeine-withdrawal, and even classic migraines with visual disturbances that were intense enough to keep me in bed the rest of the day sick to my stomach an unable to have the lights on), and none of them comes close to what you have to endure when you have CPH (yet I’ve known many people who can’t even handle a caffeine-withdrawal headache without complaining—it hurts to have your pain dismissed as an exaggeration by people who just have no idea what you are experiencing). Even the classic migraines are easier to take—because there are all kinds of things you can do to relieve and lessen them and just get through them. Whereas even simple things like rest, massage, heat and cold can reduce the severity of the other headaches, and all of those types of headaches can be prevented, nothing prevents or decreases CPH (except indomethacin, a toxic drug that I doubt we’ll still be able to take when we are 85 years old—I dread the thought of living past the point at which I can still take that drug because I know it will be nothing but misery).
Part of what makes CPH so hard to bear is that it is chronic—it happens so frequently (these are not just once-a-month headaches)—and it we have to live with it forever (or commit suicide). Before I go on though (this is a long letter), I want to return to the topic of the severity of the headaches. Although I would never call this type of pain anything less than severe (because the jabs are extremely sharp—imagine the moment you get an ice pick jabbed into you: it is an acute, sharp, intense sensation, even though it lasts only a second, the problem with these headaches is that you keep getting stabbed repeatedly), I should make it clear that sometimes the flashes are almost a shadow of what they usually are—they are still intensely sharp, but are not quite as strong. When they are like this, you can, if you are in a good place emotionally and physically, focus on the pain and "accept" it in a type of meditation (this of course means though that you can’t really be focusing on doing anything else at the same time)—but that is the ONLY time you can "manage" it that way, and even then it’s hard to do because the jabs are so erratic—you think they’ve stopped and you go on with your activities and then a few minutes later, wham, they’re back. The great majority of the time the pain is so incredibly intense there is just no way to "ride it out" without suffering other physical and emotional consequences. It is utterly exhausting and eventually depressing.
I spent years going from doctor to doctor, throwing money and time away not only on them but also on chiropractors and acupuncture and anything under the sun that I thought might bring me relief. I tried every drug any doctor gave me, from beta-blockers to antidepressants, and every NSAID ever made. Once a headache hit me exactly at the moment that a new doctor I had not been to before walked in to examine me. A minute later when it subsided enough for me to talk to him/look him in the face, he—without spending three minutes with me and having no prior knowledge of me—was prescribing me lithium! I walked out of there furious. The years of excruciating pain (which drains you of all energy and takes away any joy in life) together with the other physical problems I have developed over the years and the soul-sapping anger I felt about having wasted energy trying to find relief only to be told by the doctors I paying and waiting hours to see that my physical problems were simply "in my head" and that counseling (which I could not afford anyway) would help or that my problem was "too much stress" (and that I should "reduce the stress in my life") left me depressed at times.
I’m sure others of you who have suffered this know that subsequently the doctors claim then that it’s your depression (or stress) that is causing all your other problems. They refuse to acknowledge that our frustration at their inability to help us is a factor in our emotional health. According to them, all of our frustration and physical troubles are the result of our depression or stress (the exact opposite of the truth). In fact, they actually think they ARE helping us by giving us the benefit of their learned opinion on the matter. And from what I’ve gathered over the years from most of the doctors I’ve been to, their knowledge amounts to the following: if they can’t fix it with an antibiotic or aspirin or an edict to "reduce stress, eat right and exercise" or they can’t find a cause when they perform certain tests, then you are some sort of hypochondriac exaggerating your symptoms. If only a couple of thousand doctors would start getting this headache so that the medical community would have a reason to focus on finding a safe and effective treatment for it (and believe it is ruining people’s health and subsequently their lives). I’d also like to know just HOW they expect normal people (who don’t make hundreds of dollars an hour) to "reduce stress." Are we supposed to sell our children, quit our jobs, and have a slave shop, cook, and clean for us so we can go for long walks on the beach? Where are we going to find a genie in the bottle to fit the bill? Besides, you all know that THAT would NOT stop our headaches (even when you are enjoying a lovely vacation at the beach, the headache can attack and ruin it). Life IS stress, and I find it disrespectful when a doctor basically blames stress for my pain (which they are completely wrong about)—and ultimately me for my pain (their edict to reduce stress implies that it is something I am doing wrong that makes me have too much stress in the first place—and they don’t even take into account that I already do all the things recommended to keep my overall stress levels low, and going to doctors who don’t help becomes one of your biggest stresses). It’s just one more lame excuse they offer to cover up the fact that they have no idea why we have this pain and they have no idea what to do about it. They may even believe their stupid proclamations, which as far as I’m concerned is sheer arrogance—they’d rather delude themselves that stress (or a mental/emotional disorder/defect on our part) causes these headaches than believe that we really are suffering this pain (and other physical problems) and that they simply don’t know why.
Whether or not I had problems with depression that were separate and apart from my headaches, I KNOW the pain is what was causing the both the stress and the depression—not vice versa as some doctors tried to tell me. I have had these headaches for 19 years now and they come no matter what is going on in your life, whether it’s good times or bad, whether it’s high stress or low, whether you are drinking and smoking or not, whether you are exercising or not, and whether you are depressed for other reasons or not—none of that matters: these headaches just come whenever they please, and when they do the pain is life-altering, when they stick around for months on end, stress and depression are only some of the bad effects they have on your whole life. I have no friends and am not at all close with my family—I simply do not have the energy that it takes to develop and maintain any relationship outside my marriage (and I’m barely able to do that). In addition to the headaches, I have, over the years, developed many other chronic health problems, most of which are as yet unexplained.
I drank heavily even while I was putting myself through college, working (and paying almost all my wages to daycare; this was before the government gave credits), and raising my son by myself (I only remarried recently). I also chain smoked; smoking was the only way my system could find momentary calmness. I was not what I consider a good mother back then; I was too exhausted, stressed, and depressed, and I yelled when I shouldn’t have. The thought of having to live with the headaches was unbearable; I felt trapped and utterly miserable.
Eventually, I found a doctor who specialized in headaches. He diagnosed mine as chronic paroxysmal hemicrania and prescribed me indomethacin. Unfortunately, though, I had horrible intense itchiness as a side effect (or so it seemed) and stopped taking it (also, I don’t recall that it stopped the headaches back then either). Then he had me try a number of other drugs, but I’m sure as you all know, it’s hard to tell whether a new drug is working or if the headaches are subsiding —which they do for a little while, only to return with a vengeance not long afterwards. I tried drug after drug, each time wondering if the drug was working or if the headaches were in one of their natural temporary remissions. With all of the drugs, the headache would eventually come back. At one point after I hadn’t seen that headache doctor for years, my life was so messed up that I was seeing a psychiatrist who, within a few months, had me taking 18 pills a day. Here are some of what I was taking each day:
o lorazepam (took 2 when I got home each evening) as needed up to 6 pills/day
o Paxil 20 mg 2 at bedtime 40 mg total (this one really seemed to help me feel better about everything in general, but I felt best on the combination of Paxil and neurontin)
o neurontin 300 mg two 3x/day, 1,800 total
o trazadone 1 pill at bedtime (this was added later; I think to help me stay asleep)
o hydroxyine hcl 10mg (for nervous itch as needed; seemed to work only when taking with an extra lorazepam at the same time)
o hyoscyamine S04 ext-rel 0.375 (for severe intestinal cramping—another problem I have—as needed; I hardly ever used it: it didn’t seem to do anything most of the time anyway, and if I recall correctly, this one might have been one that left me really groggy the next day)
Don’t get me wrong, this psychiatrist was wonderful, and the drugs radically improved my life (some members of my family liked me even less while I was on them, but I felt so well once I was on both Paxil and neurontin that I wrote the doctor to tell him I felt great. I even had enough energy to start exercising regularly, and my fiancée, who had been with me for seven years, had never heard me say that I felt great before then), but my problems were still physical. He said I had nothing wrong with me mentally/emotionally that would cause me to manifest the physical problems that I’ve been plagued by all these years and that I just had to keep trying to find a physician who could help me. I saw him regularly for more than a year, but I didn’t want to keep paying just to have someone to talk to about how I wasn’t finding any help from physicians and didn’t want to take drugs to cope anymore. Eventually, I got so sick of going from one physician to the next for my physical problems that I just gave up and decide to go "doctor-free" and "drug-free," but of course my physical problems did not go away. Oh, and like one of you who also was taking neurontin noticed, those drugs had side effects. I went from 125 pounds to 150 pounds while on them; all of which must have been water weight because it came off within a couple of weeks when I stopped all the medicines cold turkey (talk about experiences—you’re supposed to taper off those medicines, now I know why).
Within a few months my family convinced me to go to one more doctor, and though I’m seeing her now with the hope that she will help me find some relief from some of my other chronic physical problems (I’m still in the process of undergoing tests and trying some things with her, but haven’t seen any major changes yet), my headaches haven’t disappeared and this doctor doesn’t prescribe drugs like indomethacin. So I had to go back to the one headache doctor (my savior) just to get the prescription for indomethacin.
I want to backtrack a second and tell you that the best thing about having been on all those psychiatric drugs was that while on them I couldn’t drink alcohol, yet they calmed me down enough to manage with out drinking. They took the edge of off life that would drive me to drink before. I had quit smoking (again with the help of a drug—Zyban, which nearly killed me, but that’s another long story) just a year before I saw this psychiatrist, so after I had been seeing him for a year, I had been free of cigarettes for more than two years and free of alcohol for a year. I would not have been able to quit drinking without the cushion of a year’s worth of drugs that kept me calm. I shared that just in case any of you struggle with drinking or smoking because of years of trying to "self-medicate" or distract yourself from the stress of these headaches—get a psychiatrist to medicate you for a year and you will be able to quit them forever. It won’t cure your headaches, but you’ll have those other monkeys off your back and then you can get indomethacin and then maybe we can crusade for more research into these headaches, to find both their cause and better long-term treatments for them. HA! I wish! Like the medical community would listen to anything other than billions of dollars! That’s the problem with having a rare subset of a rare form of anything—they’re aren’t enough of us to constitute an attractive market for pharmaceutical companies, so nobody is interested in even looking for better treatments. I always wonder though if there really are many more people suffering this headache who just haven’t been recognized by the medical community because most doctors dismiss their pain as somehow imaginary, exaggerated, or stress-based. How many others have been misdiagnosed as manic-depressive and put on lithium? How many others have been labeled hypochondriacs and ignored? How many have drunk themselves into living in the streets? How many have just killed themselves? All because doctors are undereducated and quick to blame the patient’s mental condition for anything they do not understand.
I want to let you know one other thing about my headaches: for most of the many years that I have had these headaches, they would often be preceded by an earache in the ear on the same side of my head that I get the headaches, and sometimes I’d lose the ability to hear in that ear for a short time while I had the headache. Sometimes the earache would be there for a few days before a really bad long series of the headache would start, but it took me a while to figure out the connection: I went to the clinic a number of times thinking I had a bad ear infection, but they’d find nothing; then a day later the headache would start. Eventually, I realized that the earaches were only a warning that I was about to suffer with the headache for a few weeks or months, and I stopped going to the clinic when I had earaches. (That of course led to my having a very bad infection of the inner and middle ear once—because I figured it was just another warning earache and I didn’t go to the clinic until it was so bad that even my cheek bone was infected.) I haven’t had the warning earache in the last few years though. Do any of you also get them? When I did the internet search on CPH that brought me to the messages you posted, I also saw a link to an article that I was interested in reading, but the link did not work. It was "CPH presenting with otalgia with a sensation of external acoustic meatus obstruction." Have any of you read that?
If any of you has read this far, thank you for listening. If you interested in seeing a list of all the other chronic health problems I’m struggling with to see whether you also have some of them, I’d be glad to send a list. Maybe by joining together and sharing as much about ourselves as possible we can find something other than the headaches that we all have in common, something that might help doctors determine the cause of these headaches. I noted that one of you mentioned you are a gymnast; I loved gymnastics as a child, but if any sort of damage to our spines from something that happened early on has anything to do with our headaches, I’d be more inclined to think it was the following (let me know if any of you were as stupid, trusting, and naïve as I was as a young child and also suffered this): when I was probably 8 years old or so (and very strong and flexible and healthy), my sister’s friend held my right arm firmly in both of her hands then told me to close my eyes and totally relax my whole body; I obeyed (and was very good at relaxing myself so I really was relaxed); then she yanked my arm down as hard as she could with all of her body weight. The resulting pain lasted days, and nobody did anything for it. If anyone did that too me today, I’d probably land up in the hospital. Chronic pain in my upper right back is one of the problems I have today. My neck and upper back have attacked me (making it impossible to turn my head at all and sometimes impossible to move anything above my waist making breathing painful) on a number of occasions even though my workstation is ergonomically correct (I had a chiropractor measure everything).
I hope you all are headache-free, at least for today.
Tracey Chen