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Showing content with the highest reputation on 03/12/2018 in all areas

  1. I believe it's inflammation of the trigeminal nerve (the source, at least partly, of our pain) with branches exactly as you report (it's huge). When hit hard even my hair hurt.....which is hard because I'm bald. Actually, it was one of the few things I could say to "civilians" that they actually got: "gee, it must be bad if even your hair hurts!" Try some ice or a bag of frozen peas or a cold shower.... Have you had an MRI or CT scan to rule out "other" issues? I don't know the details but you can be tested for MS.....I had some other neurological issues (unrelated to CH) that mimicked MS .... and went through a series of tests. Do you have a Neuro? Best Jon
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  2. Naturally, you should have an MRI. Everyone with CH-like symptoms gets, or should get, an MRI. If you're not going to have an MRI, then you might as well treat it as CH and see what happens. I didn't want to say this in response to your first post for fear of scaring you, but for many people with CH, the first attacks and cycles can be more mild than what they experience later. So you need to learn about managing it. Sumatriptan tablets almost never help CH, because the attacks ramp up too fast for the tablets to take effect. If your attacks are predictable, you could try taking a tablet or two a couple of hours before you expect it, but you really want to try the nasal spray. 80 mg/day of verapamil is a very, very low dose, also not likely to have much effect. Maybe your doctor is proceeding cautiously, and will steadily increase that dose. It also takes a while for verapamil to get into your system, which is why some doctors give a steroid (prednisone) taper to reduce the pain while the verap has a chance to take effect. For your next attacks, try some of the things I listed, probably starting with the energy shot.
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  3. Bilal, how much verapamil; what form of sumatriptan (pill, inhaler, injector)? Oxygen is the best way to abort attacks. It is the #1 medically recommended abortive, but many doctors don't prescribe it. You need to push for that. An optimized system stops most attacks for most people in ~10 minutes, give or take a few. Many people believe that sumatriptan makes attacks worse and cluster periods longer. It sucks to have CH, but you are lucky to have had it diagnosed so quickly. The average time to a diagnosis is close to five years, and people undergo a lot of misery during those years. As a long-term preventive, you should seriously consider the vitamin D3 regimen, which is described in the ClusterBuster Files section of this board. There's quite a bit over in those files that you should become familiar with, include "busting," which is described in the numbered files, and also recognizing possible triggers, which you can read about in one of the files. You should probably also read "Bob's Big Guide" over there. This is a good discussion of pharmaceutical strategies: https://americanheadachesociety.org/wp-content/uploads/2016/07/Peter_Goadsby_-_Treatment_of_Cluster_headache.pdf There are some promising clinical trials going on right now of things that might help. Here's a list of possible abortive/preventive strategies from another post: Energy shots (5-Hour Energy) at first sign of attack (they don't keep most people up at night); melatonin at bedtime (start with about 10mg, maybe, and go up or down as appropriate); feet in very hot bathtub to at least slow down an attack; sip ice water through a straw aimed at the roof of your mouth, with the objective of creating "brain freeze" (or try holding something cold, such as frozen juice concentrate, against the roof of your mouth with your tongue) Stay hydrated -- lots and lots of water. You could try Benadryl (25 mg every 4 hours and 50 mg at night -- but not if you are also taking melatonin at night); there's a theory that allergies/histamines make CH attacks worse, and Benadryl will help.
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