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Originally posted by Roxxo
I've had them for 9 years. I have the chronic variety so no remission period. They come in high cycles and low cycles for me. In the low cycle I get 2 or 3 a week and they're not as bad. During the high cycle I get them daily, or even multiple times daily. I also have regular "run of the mill" migraines as well, but in comparison those aren't too bad aside from the hour or so of partial blindness I get before I have one. The cluster headaches have no warning for me. I'll just be walking along and bang it suddenly feels like someone stuck a lance through my eye.
ETA: I know we're not supposed to talk about drugs on here but the only thing that has really worked for me was a certain 3 letter substance that makes you see strange things. One dose and I didn't have a single headache for two months.
ETA2: I can usually keep myself in the low cycle with daily vigorous exercise. It apparently works on the same principle as using oxygen. When you really exert yourself it can increase the amount of oxygen in the blood which can in turn help with the headaches.edit on 19-5-2013 by Roxxo because: (no reason given)
Originally posted by veritaslibertas
Unfortunately I know exactly what you are going through. I struggled with the "suicide headaches" for about 10 years. They first began at the age of 18, until that point I had not had any type of headache my entire life. To this day I have never had what most refer to as a traditional headache, only the clusters have come and only on the left side of my head. What you say about them is very true, it really makes one question the limits of pain that a human can endure and for me made me question a lot of things about existence and why it was happening to me. Sweating, shaking, vomiting, loss of vision, and yes strong urge to just make it end all come with the territory. It has been over 5 years since I have had one, after doing many things I still get nerve pain on my left side but have learned to control it.
Its different for everyone but I'll write about a few things that really helped me along the way. One doctor I saw who was immensely helpful said it is all about breaking the cycle or breaking patterns. (My first attack at 18 I got one every single day for an entire summer, it was miserable) As you said traditional painkillers really have no effect. I was given every form of immitrex/maxalt pill, nasal spray and ultimately injectable. However, it would not always work and the side effects from that medication make one feel very strange and even worse at least for me. What finally seemed to help was a calcium channel blocker medication and making changes with my diet. I've found that any increase of inflammation in the body tends to aggravate the nerves. Mine were also particularly disturbing because they would last a very long time unlike most cluster headaches. 8-10 hours was not uncommon, sometimes I would pass out and wake up with the headache still there. Definitely a nightmare. They are also much more common in men and young men. I also had my wisdom teeth removed and a root canal done where the nerve was literally touching a filling. That is the tough thing about these headaches, there can be so many factors. However, the dietary changes for me were a very massive improvement.
I removed dairy and meat from my diet, I found that there are foods which cause inflammation and foods which can reduce it. Balancing pH in the body seems to be important, as is staying hydrated and keeping a semi regular sleep schedule if at all possible. I was also introduced to biofeedback and trigger point massage which I found to help alleviate the tension in the nerves and trying to avoid stress or think positively. I had one spell where I was so afraid to get another headache that I would pretty much bring one on just by thinking about it. I should also add that there are herbals that can't be discussed here which have been known to help. One other poster mentioned one and the other is more common, less intense and green.
I also found this site to be very helpful. It is a worldwide support group for sufferers. There are many shared experiences and remedies and is a great place to help ease the suffering a bit.
I really wish you the best man, no one deserves the kind of pain that these things bring, no matter what. Sorry to hear you are entering another cycle. Stay strong man, maybe ask your doctor about the calcium channel blocker if you have not, I know at the time I found it many doctors didn't know or didn't believe it would help. I think it is traditionally a blood pressure medication.edit on 19-5-2013 by veritaslibertas because: (no reason given)edit on 19-5-2013 by veritaslibertas because: (no reason given)
Originally posted by ccseagull
I could never quite explain this pain to anyone in a way that they could comprehend. Then the other day as I was drinking an ice drink I had a tortuous never-ending moment of brain freeze. THAT is what the pain is like except amplified to an extent that one can't imagine and it goes on and on and on. On top of the knife plunging into the back of your eye over and over. Thanks for the suggestions on here - going to try the melatonin. Daughter has just started in same eye and same scenario as me.