mike99 Posted August 30, 2016 Share Posted August 30, 2016 New here. Last December I experienced some extreme headaches that would hit suddenly and last for a few hours to half a day. They came back each day stronger for a few days until I ended up in the ER with the right side of my face/head going numb. The pain was focused above my right eye and caused a lot of vomiting from the pain. The hospital did a CT Scan and said they think it is related to my sinuses. While there my heart rated started dropping below 30 bpm so they also did an EKG which turned up normal. Since then I've had 2 more "episodes." The latest started yesterday. The pain usually goes away after experiencing a popping sensation where the pain is focused. I had a cold last week so I still have reason to believe it is related to sinuses but I've also had a nurse and doctor tell me they think it sounds like cluster headaches. I'm setting up an appointment with an ENT but I was wondering if this correlation sounds familiar to anyone else. Do people with cluster headaches often have sinus issues or find that the clusters start around the same time as a cold? Sorry for the long read...ended up typing more than I intended. Thanks for any help. Quote Link to comment Share on other sites More sharing options...
CHfather Posted August 30, 2016 Share Posted August 30, 2016 CH is often misdiagnosed as sinus headache. More than a few people with CH have had sinus surgery because that was thought to be their problem when it wasn't. Evidence is growing that pollen/allergies have an effect on CH, and I would imagine also on sinus headaches, so there could be a false correlation there. Do not fully rely on what an ENT says -- they can see things that aren't there. I'm not saying you don't have sinus headaches or some other kind of headache or CH -- only to be careful about that diagnosis. Try to get to a headache center if you can (most neurologists are pretty useless). Your symptoms are not all classic CH symptoms -- your attacks are a little or a lot too long to fit the "standard" definition, though some people do get long attacks; it's rare for a sequence of attacks to go on for only a few days; people do vomit from the pain but it's not common. The pain around your eye is classic CH. I don't think the numbness is a typical CH symptom, either, and I just don't know bout the popping. Others might have something to say about that. Needless to say, these are some serious effects (including that heart rate drop), and I'm sure you'll look into them vigorously. Did you get anything at the ER that seemed to help? 1 Quote Link to comment Share on other sites More sharing options...
mike99 Posted November 14, 2016 Author Share Posted November 14, 2016 Thanks for the feedback. I've had one more moderate episode this my last post. I finally went to an ENT today and he doesn't seem to think it is a sinus issue. Although some of my signs seem to really point to sinuses he said my CT scans didn't look correspondent to the type of pain I had experienced. He said a lot of head pain gets misdiagnosed as a sinus problem...like was mentioned in this post. He looked up my nose with a camera (not fun) and said although I have a deviated septum it shouldn't cause this. Although he said it isn't his speciality he also suspects cluster headaches. For my next step I'll try to find a headache center. The ENT recommended I see a neurologist but this post already recommended I don't start there. I need to do some more research, but do cluster headaches ever become chronic? For the past few weeks I've developed the same pain but now it is constant and mild...like maybe a level 2 pain. It comes and goes a little bit but is pretty constant. Quote Link to comment Share on other sites More sharing options...
CHfather Posted November 15, 2016 Share Posted November 15, 2016 I'm glad you've kept at this. A headache center is your best bet. Keep a diary in which you track your pain levels and the duration of your noticeable increases in pain. Maybe also track sleep patterns and other possible factors, such as situations that might be triggering attacks (stress, climate changes, certain foods . . .). Your consistent relatively-low-grade pain might be what folks here call "shadows," but it could be something else. The more information you have, the better your chance of getting a good diagnosis. If you feel a severe attack coming on, you might try quickly drinking an energy shot, such a 5-Hour Energy. It might help. Many people prefer them cold. Quote Link to comment Share on other sites More sharing options...
mike99 Posted November 15, 2016 Author Share Posted November 15, 2016 Thanks again for the help. I'll look into a headache center. I also just read about how flying tends to trigger episodes for some people - I got back from some long international flights just before the pain started again. There's good info on this site. I'm not happy to read about other people suffering, but it's somewhat reassuring to know others can empathize. 1 Quote Link to comment Share on other sites More sharing options...
mit12 Posted November 15, 2016 Share Posted November 15, 2016 Mike99 For me a sinus infection will cause me to have hits. I believe it is because of the sleep pattern interuptions. Then again gitting sick will cause me to get hits also. 1 Quote Link to comment Share on other sites More sharing options...
Jarhead Posted November 19, 2016 Share Posted November 19, 2016 Hi Mike, I'm new her,e but was misdiagnosed for over 13 years. Even had surgery to repair my deviated septum and collapsed sinus cavities.. Headache specialist is the best bet, I think finding this site is a great step on your path. These people on here are top notch and really do care. Good luck and if I can provide any other info to help please let me know. Quote Link to comment Share on other sites More sharing options...
mike99 Posted November 23, 2016 Author Share Posted November 23, 2016 Thanks guys. I'm getting in contact with a headache specialist. I'm still wondering if maybe I don't have cluster headaches since the mild pain above my eye has been pretty constant for the last while. Then today woke up with the eye being quite red. Likely unrelated but who knows. Quote Link to comment Share on other sites More sharing options...
AbinKY Posted November 25, 2016 Share Posted November 25, 2016 Mike 99, Two days before my first episode, my right eye was red for no reason. Plus the eyelid was droopy. I'm pretty sure I've read somewhere that a red eye is a symptom of cluster headaches. Quote Link to comment Share on other sites More sharing options...
Terry123 Posted November 8, 2019 Share Posted November 8, 2019 I have been in the hospital multiple times in the last 10 years with Cluster Headaches and had injections for nerve pain giving to me in my face. I also had sinus issues going on so I had Turbinate surgery, after surger I started having cluster headaches again so i asked to have a Scan done and found that I a mucus retention cyst in my sinus. I was told that it doesn't cause headach but I insist to have it removed and I never had an episode since. Please insist to have your ENT or Neurologist do a CT scan and if there is any mucus retention cyst let them remove it. Hope this helps! Quote Link to comment Share on other sites More sharing options...
Pebblesthecorgi Posted November 9, 2019 Share Posted November 9, 2019 I am glad you are no longer having pain. Though it is unlikely a mucus retention cyst was causing cluster headaches anything is possible. One could develop theories on why cyst removal may be helpful. Another possible consideration is you may be enjoying a “side effect” of the anesthetic agent used for surgery. You might want to get a copy of the anesthesia record to see if propofol, steroids or ketamine were used. Any combination of these agents has the potential to offer relief for cluster headaches. 1 Quote Link to comment Share on other sites More sharing options...
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