| Clusterhead since 1990 |
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What is Cluster headache? Cluster headache is also known as Horton syndrome and histamine headache. Cluster Headache is quite often mixed up with migraine. The main differences between migraine and cluster headache are that cluster headaches come in periods and the pain is centered at a specific point at all times. Often there is one-sided "sobbiness" (both the eye and nostril). You can find people who have a mixture of the two headache types. The ones who suffer of both often say that a cluster headache is more terrible. Even childbirth is concidered by many as a piece of cake compared to an attack. I never got a fair chance to compare because I had had an unplanned c-section, but that 70% of childbirth I experienced was a picnic compared to an attack. Read more about the facts for exampel in Wikipedia. My story I have suffered from Cluster headache since I was ten. So now in 2011 it is 21 years since I felt the knife cut through my head for the first time. Since I'm a young woman it took time to get the right diagnosis. Doctors thought I had a bad migraine. Luckily I found a good doctor who could help me. Cluster headache clusters endure most commonly from some weeks to some months. For me they have often lasted for a month or so. One lasted seven months though! My final exams in high school were on the doorstep and I felt quite out of energy.... For me the clusters don't come always at the same time of year but the winter is usually a hard time with little or none sun light and cold windy weather. And what helps? I could be very cynical here and say that nothing... It hurts, it hurts more, it hurts so much that you cannot endure it and yes, this is called the suicide headache. But hang on! Here I will now list some hints and tips for you, fellow clusterhead! There are many different long time medications. My favourite mix is Prednison (that is cortisone pills), Diapam (helps to relax the muscles, and against the anxiety, benzodiazepine) , Lito (lithium) and Melatonin (no prescription needed). I have also a very bright lamp on a timer to imitate sun rays at breakfast. For some reason it is very important to get up early to keep the "inner clock" right during the dark seasons. Injections, local anesthesia, into some specific points in the neck also help sometimes but the problem is that many doctors are too scared to do that procedure. I've actually thought if it might be a good idea to tattoo the points because they are always the same. Maybe the doctors would feel more secure then and do as I say. In Sweden I once got a "general" cortisone injection in the butt (!) because the doctor was too afraid to do what was necessary. And he was the local specialist in Cluster headache! My ass I tell you, litterally... Damn those doctors who do everything by the book! After that I flew to Finland and got what I needed. Expensive but what can you do... To stop an attack I've taken Imigran (sumatriptan injection). I can really recommend that. When I was a bit thinner (and vegetarian) my body did not tolerate them but nowadays they work really well. Just take an injection as soon you feel the attack coming. Don't wait one second! You get tired and shiver, but it is 100% worth it. During a cluster in autumn 2002 I took no drugs to stop the attacks, only the long time medications. It worked okay that time but this time I was too tired and depressed. The attacks were so hard that I ended up at hospital this time and got a speciel infusion (called Färkkilän tippa in Finland after a local neurologist). So each night after that I have asked my (now) husband for help in preparing the Imigran injection. (Due to my very confused condition in the middle of the night I've had problems doing that properly.) You can try oxygen as well. Ask for example Linde Healthcare (Aga) for help if you live in Finland. They supply the apparatus if your neurologist writes a paper saying you need it for medical use. I've tried this both at the hospital and at home, but the problem for me seems to be that the attack "comes back". You get a little pause, but then it's there again! When I breastfed my son I tried to eat long term medication Verapamil, avoid Imigran for attacks and sit by the oxygen apparatus, but I really don't recommend that. Here's why: For me that attack period resulted in a very bad state with a pulse of 40, no sleep, nights at the hospital (one week old son home with dad) and psychological problems with fatigue later on. Luckily there has been a great long period of time after that without Horton. My son is now 2 years and 4 months, when I'm writing this. What has kept Horton away for this long time? Well, the thing is that it did try to come back the usual time. But I fought it off with my own "mixture". I can't recommend it because there is no proof it works for anyone else - or bloody hell, why not. When I felt the first attack of a period approaching (I felt a bit dry in the mouth, a bit stiff on the right shoulder and side of face, and my tongue glued up inside my mouth) I took strong medicine against summer allergy (prescription needed in Finland) - a pill that melts in the mouth. I walked over to the store close and bought an energy drink, took a strong normal painkiller with that. And then I took a great amount of cortisone pills at home - the amount you'd start with if you got it from a doctor. And a half of a Diapam pill (like maximum of 1 milligram). After that then, for a couple of days, I kept using a little Diapam when needed, and took every day a little less of cortisone (in say four-five days I was already down to none). I haven't had one single attack this autumn/winter - and every day I'm happy lika a lottery winner! I carry the kit with me to be able to start my mixture anew whenever needed, but so far I have only used the allergy medicin once or twice, a little Diapam a couple times more often and energy drinks maybe once a week. In the morning I enjoy breakfast by my sunshine lamp and every evenening I take Melatonin (1 mg). But these two routines I've had for like five years already. The only things you need to try out this weird cure is some old (not dated, though) medicins and some guts to try it without the supervision of a doctor. But as we literally hit our heads in the wall, a little risk is for us no risk at all. I have not talked to a neurologist about the mix lately and he did not raise the what!-brow. So I guess this is pretty safe. Or maybe my Horton has stopped. This autumn I heard at a Cluster headache lecture that people actually can experience that. "Or then I just don't get contacted by the same customers anymore." the neurologist said. One possibility is naturally that they have committed suicide. On the Horton meetings during my active years (from 1996 onwards) I've seldom met the same people twice. I hope the rest just get cured. I only hope they told their neurologists about it so other sufferers would get some hope into their lives. Enough about drugs During the years I have tried acupuncture, physiotherapy, lymfa treatment, meditation and streching. I have found streching to be the best method to prevent my neck from braking totally apart. Soft amateur message gives also some relief sometimes between the attacks. Small things that make a cluster more tolerable: eye cream (cold, yet not too cold), coffee (a cup is enough, the smell is lovely), shower (max 10 min so it does not get too damp in the bathroom), lots of plain water, tiny neck-movements when you wake up just to tell your body that it is time to wake up, Frank Sinatra or other melodic mostly "mono" music during the day (prevents you from sleeping and getting an attack when you rest - and when you hear the same things from both speakers it gives a sence of balance), salty food. Don't hesitate to talk to somebody objective about the pain. It can be someone who suffers from some other terrible thing or a totally healthy person. But do not in any case tell about your condition to those pain-in-the-ass men and women who see an absolutely wonderful opportunity to complain about their flu/tooth ache/etc. When you have a cluster, you are the king/queen and should not have to tolerate anything like that. You might be the most wanted and warm person between clusters but this cluster time is your own time when you have to decide what is important. You think about things like is there a god, why is this happening to me, will my kids get this as well, what is this drug doing to my brains, who are my real friends and - what do I want from life. When you have survived a cluster, you do not have the answers, but you are a bit wiser again. And you know who did not really give a shit. You know who talks about tooth ache, to put it nicely. You who are suffering from this syndrome: hang on. There will be days without ache. Remember to do only things that feel good. Keep yourself in harmony during a cluster. Leave the stress and worries behind and concentrate on healing yourself. And don't be afraid to ask your family and friends for help in for example finding a good doctor or canceling appointments! We clusterheads often try to do everything ourselves because we have so much energy when we are alive again. But a cluster is a cluster is a cluster. Take it for what it is and - hang on! When you are alive 'n' kicking again, you're gonna kick ass and enjoy life more than ever! - Johanna Blåfield - |
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