Posted by Paul Kwo (134.68.89.85) on August 08, 1999 at 11:24:44:
I thought I would give an update as to how I live with these cluster headaches . In November (11 -- 11 -- 98), I posted a message that related cluster headaches to candida infections (a yeast that lives in our body). I have now been without clusters for two and 1/2 years though several times I have felt them coming on, I have been able to stop all of the cycles thus far using the following regimen: I stay on a maintenance of nystatin tablets, a non-absorbable and virtually non-toxic anti-fungal agent 500,000-1,000000 units before meals and bedtime. In addition, I have virtually cut sugar out of my diet (to as much as is realistically possible).
However, this has not kept them away the whole time. I am convinced that there are multiple triggers for this disorder in those who are genetically susceptible. The recent article describing changes in the hypothalamus may be evidence that supports this. One reliable trigger for me is any kind of viral infection or infection requiring antibiotics. I had a case of the flu this year that seemed to start to trigger a cycle. When I feel a cycle coming on, first thing I notice is that I am awakened at 2-3 AM with pressure in the back of my neck on the left side. It is difficult for me to get back to sleep and I am tired during the day. However, the next night is usually a bit worse and I'm convinced that this vicious cycle continues with fatigue, inability to sleep and an eventual cluster cycle. I have stopped this from happening using a low dose of an old antidepressant medicine of called amitriptyline at a dose of 10 -- 25 milligrams each evening. I usually have to stay on it for one -- two weeks but it makes me sleep through the night without being awakened and this seems to eventually stop cluster cycle from taking off into a full-blown cycle. In addition, I have found that taking echinacea , an herb that probably stimulates the immune system is helpful as well . Also taking an anti-fungal agent such as Diflucan for a few weeks has always helped me. Especially if you take a course of antibiotics, which leads to candida over-growth, I believe that this stops cluster cycles if candida is playing a role.
Is Canada the cause of clusters in everyone? I doubt it. In people who are genetically susceptible , there are probably hundreds of triggers, some environmental such as smells or odors or temperature changes, some are seasonal changes, and likely some are related to infections. I believe as the cluster cycle gets worse, virtually anything can trigger a cluster (and I have been in this situation several times) and this contributes greatly to the frustration of trying to deal with these headaches. I still use verapamil on occasion and it has always been the most effective drug for me for preventing headaches but it is important to try to taper off the medicine once the cycle ends or it seems to lose its effectiveness. In addition, Sansert has proven to be quite effective for me though I do not like the side effects. If you are in the midst of a cycle, I still believe that getting sleep at night is key to breaking out of the cycle of clusters. When you get a cluster, Imitrex injections have worked every time for me but they are expensive and unpleasant. Oxygen at six -- eight liters per minute with a face mask is also helpful as it reverses the cerebral blood vessel dilation in the scalp that likely is causing the pain. A few times, steroids seem to help as well. The bottom line is you have to keep trying new things. I'm sure all of you have experienced the frustration of discovering something to stop the clusters during one cycle but not having it work the next cycle, as if the headaches had undergone a mutation to become resistant to that therapy. Even if it does not work for one cycle, don't be afraid to try it again later, it may still work.
I hope this posting is helpful . I have lived with these for 14 years and like most people have been affected quite significantly by them. I keep fighting simply because I believe there's a genetic component to this and that my children may when they have to face this awful disorder. This WebSite is to be commended for helping everyone deal with this disorder. Lastly, find a physician who has knowledge of cluster headaches. This will likely be a neurologist at a major tertiary medical center. However, this is a frustrating disorder but with the explosion of migraine headaches, much research is being done in this area. Most abortive therapies for migraine headaches (and clusters are definitely not a variant of migraine headaches) seem to work for clusters as well and with time, I hope everyone's quality of life improves.
Paul Kwo