Johnd1983 Posted August 16, 2019 Share Posted August 16, 2019 Hi everyone... I hope everyone is as good as can be! I've been dealing with CH for around 12-13 years now, normally occurring for me between June and September every years. For the past 3 years, I have used Verapamil with amazing success, at a super low, consistent dose. They have ALWAYS worked fine for me, as they did this year but after around 5-6 weeks, I felt a sensation that I haven't felt before. Imagine a CH but without any sensation of pain (I know it sounds strange!), still with all of the pressure build-up - This is what I am experiencing around twice a day now. My right eye reddens and waters slightly and my right nasal passage becomes completely blocked, just as they would during an actual CH. Whilst it's nowhere near anything like a CH, pain-wise, it's strange and uncomfortable! It is like a 'phantom' CH!? Has anyone else experienced this at all? Thanks! Quote Link to comment Share on other sites More sharing options...
jon019 Posted August 16, 2019 Share Posted August 16, 2019 (edited) ….check that they didn't switch your script to ER....usually don't work.... ...and yes, but so rarely it made me laugh when it did.... Edited August 16, 2019 by jon019 Quote Link to comment Share on other sites More sharing options...
Freud Posted August 17, 2019 Share Posted August 17, 2019 I some times wake up before they really hit and I have that funny sensations like I say is this a CH? Or did I have to pee or something. I’ve learned I’m never wrong, if I have a feeling like it’s going to happen it does... so I abort those w oxygen real fast 2-3 min. Stay on for 10min. Have you tried using oxygen on them. I’d try increasing your verapamil dose by 80mg to see if you’re kind of just at a threshold dose and that finishes it off. Otherwise if you were busting I’d say you’re close to beating the beast... Quote Link to comment Share on other sites More sharing options...
Sub Posted June 4 Share Posted June 4 I know this is thread is old but this is my #1 question — I always forget to ask my neurologist. She recommended this community so I searched for it here! I sometimes develop ‘phantom’ headaches that are dead on my CH spot. The pain is always very subtle, but it appears and disappears just as a CH does. I find mine are triggered by illness (eg Covid) and classic seasonal timing (which is when my real clusters appear). It always generates anxiety that I have an upcoming episode, but I don’t think that’s true for me. I’m curious if anyone else has noticed this! Perhaps I’ll repost in a new thread in case anyone has insight; I just joined and will search around some more. Quote Link to comment Share on other sites More sharing options...
devonrex Posted June 4 Share Posted June 4 Might be shadows, times when there is some mild pain or sensation in the same area as cluster, much like the Beast is prowling around letting you know it is there, sometimes shadows foretell an attack, sometimes they linger after. I am not sure if this is what you are experiencing, but if it is it is very common. Quote Link to comment Share on other sites More sharing options...
Sub Posted June 4 Share Posted June 4 45 minutes ago, devonrex said: Might be shadows, times when there is some mild pain or sensation in the same area as cluster This is pretty accurate to my experience. How common are these [discussed]? I only ever heard shadows in reference to migraines, but I’m very new to CH literature. Mine can persist for many hours. Very low level pain. They haven’t preceded any actual CHs. Quote Link to comment Share on other sites More sharing options...
devonrex Posted June 5 Share Posted June 5 (edited) 4 hours ago, Sub said: This is pretty accurate to my experience. How common are these [discussed]? I only ever heard shadows in reference to migraines, but I’m very new to CH literature. Mine can persist for many hours. Very low level pain. They haven’t preceded any actual CHs. They are mentioned all over this board and are a pretty universal experience, though not hear my neuros really discuss them. In reference to migraines I tend to hear them discussed as 'auras' which can include the phantom pain kind but also visual 'halos' around lights, auditory auras and such. The skittering pain and just kind of a 'noticing something where my clusters are' be it pressure or the fleeting pain seems about the closest thing to auras clusters tend to have in my experience. Edited June 5 by devonrex 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted June 5 Share Posted June 5 @Sub There's a discussion of shadows toward the end of this document: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Ginger is often very effective. In addition to the ginger items discussed there, some people take ginger capsules. @Shaun brearley wrote recently: "I take 2 ginger capsules every day even out of cycle, Organic root ginger 1100mg each capsule, can order them on amazon." (Since you mention that you're new to CH literature, other sections in the link above might have some helpful info for you.) You can look for other posts about shadows (as devonrex says, there are lots of them) by putting the word into the search bar that is at the top of each page. Quote Link to comment Share on other sites More sharing options...
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