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Maria I

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  1. I'd also like to add that SUNCT can cause extreme pain probably very close to that of Clusters; however, sometimes the pain is not nearly as intense. I've had attacks where i've been screaming, rocking back and forth, crying, shaking etc. which appears to be what cluster sufferers endure. There are the nicer attacks though, which can cause the tearing and a bit of a jolt but they can still be managed.
  2. Hello, I was also recently diagnosed with SUNCT. I'm an 18 year old female and was diagnosed about 1 year ago. I can say that I haven't found anything that works 100 percent, but I've found that at the beginning of an attack if I drink about a bottle or two of water within a short time period, it can reduce the pain. Unfortunately most medications don't seem to have much effect in treating SUNCT from steroids, to anti-seizure medications and high dose NSAID treatments, nothing has done me much good. I usually just get sick of the side effects and go off medication. The single attacks are much easier to handle compared to the saw-tooth attack pattern. My advice is to try to stay positive and enjoy the times where you aren't suffering the pain; try drinking water, move around when you get the headaches, lying down generally makes it more painful, and depending on the severity - if you are able to control your breathing try to do so it has a calming effect so you focus on the pain less. I'm sorry that I can't offer better advice, I'm still working on trying to figure this out for myself as well.
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