Posted by Laurence on August 27, 1998 at 16:11:04:
Hi everybody,
In passing on the other day what I hope was some useful advice on this message board, I said my comments were coming from an “old hand”. I thought afterwards that it was funny I should think of myself as an old hand as I only found this site about 3 months ago. The thought, however, made me reflect on what I have learned about clusters not only over the last 3 months in particular, but also on my experiences since I first encountered the demon back in 1991. As some of you might well relate to some of what follows, I felt that I should share it with you.
My first bout in the summer of 1991 was a little scary as I went through all the tests and scans to confirm I wasn’t suffering from something much worse. Although the pain hurt like hell, I remember I gained a lot of comfort at the time from having ruled out the lethal conditions. A neurologist also gave me a name for my condition - migrainous neuralgia - and tried me out on a course of Cafergot pills. At least now I had a name and a pill. Relief was surely at hand and so I relaxed a little.
Well, after a few weeks on the Cafergot, I was still having pretty awful headaches so I went back to the neurologist. My “regular” was on holiday at the time and a new guy prescribed Lithium for me which seemed to work brilliantly. In a day or two the headaches were gone and only the shadow remained for several months afterwards. (I can guess now that that cycle may have been coming to and end anyway – but who cares what the reasons, the pain was at end and it was a real relief at the time). As I was taking a drug that someone mentioned was prescribed for manic depression, I thought maybe I should find out more about it. I discovered from a book that what I had been telling people was migrainous neuralgia also had another name - Cluster Headaches. While the former sounded dreadful and provoked incomprehension and some sympathy, the latter name did not really do justice to the type of pain it inflicted.
The new neurologist had also cautioned that once this bout was over, I might suffer the headaches again later in life. But I promptly forgot about that warning and went on with life feeling very relieved indeed that I had put it all behind me.
To digress for just one moment, that 1991 book had only a few useful snippets of information about clusters but I simply couldn’t find anything else at the time. It also said quite clearly that Cluster Headaches was a condition suffered exclusively by men. The reason why I remember the comment is because when I was describing what I was suffering from to my mother (she was in her late 60’s at the time), she said that it sounded exactly like the dreadful headaches she had suffered from years earlier. As I “knew” from my book that my headache was a “man’s headache”, I said she must have had something else. What a putz I was. The awful thought though is, how many other doctors have read the same book and nothing else since? We can see from the messages posted on this board that many, many women suffer from this condition. The statistical evidence may suggest that the condition is more common in men but how old is that evidence? Is the condition over time now becoming more or just as common in women as in men? If the evidence is based on the diagnosed-condition records, how many countless thousands of women are being wrongly diagnosed, wrongly counted and worse still, wrongly treated?
Back to the story. The next bout struck in 1995 and I went to see my GP a lot sooner than I had done first time round. I was expecting to go on the Lithium and so hopefully stop the headaches before they really got a hold of me. My GP suffered from migraines and he suggested I try a new drug developed since my first bout – Immigran (Imitrex in the US). It didn’t have the same side-effect risks as Lithium and there would be no need for blood tests to check the levels of the drug in my blood. Well the Immigran tablets didn’t work for me (I can’t remember now whether the injection variety was on the market at the time) and as I was going through sheer hell with headaches every 4 to 6 hours, day and night, I went back on Lithium. Within a day or two relief was had as the headaches subsided and life began to get back to normal again – just me and my shadow (perhaps).
My 1995 book of information (one very small chapter in a booklet on migraines) mentioned clusters, said it was a neuro-chemical imbalance thing and gave information about some of the treatments including Lithium. The booklet said it hurt like hell, that some sufferers banged their heads in a desperate search for relief, that some people committed suicide and oh, that some women also suffered from it. (Obviously some progress on that front then.)
When the first tentative signs of my third bout started a few months ago, I almost immediately went to see my GP - a new one as we had moved house in between bouts. I explained what I had and what worked for me and then off I went with supreme confidence and a prescription for Lithium to the pharmacist. I got a very nasty surprise when after a week or so the Lithium didn’t seem to be working, or certainly not as well as it had done before. The headaches were increasing in frequency and the pain was moving fast up the scale to the screaming level.
My new 1998 booklet on headaches told me much the same thing as the 1995 version but also perhaps “helpfully” told me in so many words that it could all be my own fault as cluster headaches are normally only suffered by smokers or ex-smokers. I now had guilt, pain and fear at the same time. Fear because I knew how much it hurt. Fear because I realised that it could go on for weeks and months. And fear because I still really knew so little about the condition that was of any real use to me. I went in search of information.
What a relief then when I found this site: immensely detailed information about the condition, loads of information about different drug treatments, links to other sites; and most importantly of all perhaps, real people who were only too willing to share their experiences to help others. I got the information I needed on Oxygen from this site, as well as the almost immediate advice on the correct flow rates. I learned the difference between abortive and preventative medications. I tried out, almost on-line as it were, Prednisone. I also stuck my head in a freezer when I didn’t have any oxygen around. [My kids think that treatment is a real hoot]. My headaches have tailed off and so now it’s just me and my shadow again (with just a little help for the time being from a much reduced Lithium dosage).
One thing has certainly made a big difference to me. I don’t fear this anymore. Yes I may well get it again and even perhaps sooner than my past history of cycles would suggest. But now I’m cluster educated. If my doctors (and this is not a criticism of doctors as mine have always done their very best to help me) had only been able to give me even a small part of the information available here, at the same time as prescribing drugs for me, then I wouldn’t have experienced the fear. While I realise all doctors are extremely busy, and that as a general rule they are in the treating business not the educating business, it seems to me that clusters is one of those exceptionally painful conditions for which sufferers can be greatly helped by giving them information.
The trouble is of course that there is no easy-to-read, reliable information around. Even some of the medically supplied information here is hard to work through simply because it has been written by doctors for doctors. It is therefore naturally full of medical jargon making it at times almost incomprehensible to the layman.
What I think we need is a book or booklet written perhaps in the style of that series of Computers for Dummies books – previously, all such computer books were also almost completely incomprehensible except to the really determined reader. In short, I am suggesting the need for a “Clusters for Dummies” booklet.
The chapters of the booklet could perhaps flow from the detailed information here: 1) A basic explanation of clusters. 2) More detailed scientific stuff, perhaps about chemical imbalances and the like and references to what is emerging from the latest research. 3) All the drug therapy details both abortive and preventative with additional information about the most commonly encountered side effects. 4) Some home remedy treatments – vigorous physical exercise, head in the freezer trick, turning up the air-conditioning in the car or at home and so on. 5) Details of where further information and support can be found – most especially the pointer to our home on the web, clusterheadaches.com.
I realise that such a booklet could cost a great deal to put together and to publish. However, as there would necessarily be a lot of drug-related information in there, a pharmaceutical company might just be able to recognise that it could well be in its commercial interest to publish this. As Glaxo must be making a fortune out of the regular use of Imitrex by cluster folk, why not The Glaxo Clusters For Dummies booklet.
If information like this came in to the general public domain, there would certainly be far fewer instances of doctors failing to diagnose the condition. Our family, friends, relatives and employers could read about it if they wanted to. No one suffering from the condition would any longer think of himself or herself as a freak and just maybe, no one would be frightened any more.
One thing the booklet couldn’t do though, is give me the wonderful experience of seeing people help each other that I have witnessed here. It is inspiring. It is also immensely rewarding when I discover every now and then, that some of my words seem to be helping others. And even though I experience a sense of helplessness in the face of the immense suffering of those who endure a long-term chronic condition, I will continue to hope and pray that you too will eventually find something that works for you.
Bye for now
Laurence