New user with similar headaches to Cluster (SUNCT) in General Board Posted November 4, 2017 On 5/15/2013 at 1:07 PM, Mattrf said: First, I would like to say thank you to everyone here for the dedication you have to this forum. I have truly been in awe. Thank you. I am so happy I ran across this thread. Since my dx, the more I was learning & reading, the more confused I became until now. I say that because I have experienced many different symptoms that have changed overtime. That said, when they changed, there would be one criteria & common experiences (even vice versa) that repeatedly made me question if it was the correct dx. I remember reading about SUNCT & thinking this sounds just like what I was experiencing during the first year of my attacks (prior to dx). I have Horner's syndrome in my left eye due to childhood cancer. There is a post here about Horner's & CH. So the right side has nothing to do with my CH. Due to Horner's I am legally blind in that eye. My CH is on the left. It started with my eye burning & watering, then runny nose, & highly agitated. Then the burn turns into a searing pain. I would describe it as ice pick or someone putting a cigarette out my eyeball. My eye eventually swelled shut & for the most part blind. It was excruciating to even touch it. But the searing pain would go away for short periods. I would put ice packs on it for 20 minutes at a time. It would take me about 3 days for me to recover. First time it occurred my PC insisted it was an eye infection. I knew it wasn't. It happened about once a month for 3 months. Then it became more frequent. I started doing some research on clogged tear ducts & on & on. I finally saw the CH. I discussed it with my NEW with my PC. She confirmed it. Neurologist confirmed it in August. However, they had changed to severe eye pain but no swelling shut but drooping eyelid with a bit of puffiness in the corner of my eye. I also became slightly dizzy & had some nausea. That was like clockwork every 2 weeks at the end of the week. Until it changed again. I started having attacks everyday but only in my eye. I was having several a day at random times that lasted no less than hour. About beginning of August, they found a regular time. One at 8 am & 10am lasting 2 hrs. Approximately 2-4 in afternoons that were much less intense & much shorter. And another one at 9pm. I would use the Zomig injection at night when I could no longer bear it. Which just made the next day worse. My one lil demon decided to invite some friends 2 weeks later. Times did not change. When I thought it could not get worse, it did. I had a demon stabbing me in the ear, one stabbing my eye, & the other one stabbing the top of my head. And these pushed 3 hours. I had the nerve block. They just kept getting worse. End of August, I have intense pressure behind my eye, it hurts to move my eye most of the time. I went back to neurologist and he acted like I was stupid because everything I have read says there is no constant pain. But he said it was the CH. My eyes became so sensitive to the sun that if I walked outside after noon without sunglasses it was like a hot poker being driven into my eye & would trigger on attack. Intense pain but shorter duration. I missed 3 months of work. Neuro did not explain to me what to expect from my dx. Just tx options. He prescribed me Veramil. I explained that I was just taken off all my BP meds in May because my BP was extremely low & I had finally stabilized. I don't think he believed me bc I was having an attack while I was there & my BP was 200/100. I was only able to take one dose. I could not hold my head up much less walk. We tried the Topamax until I started having difficulty having a conversation & friends were telling me I wasn't making any sense when I would text. I refused the steroids because the last 2x I was prescribed a high dose of steroids it was not good. It had not been 6 months since the last dose that ended in an ER trip. My 1st visit he did prescribe the oxygen but I was unable to get it filled. Then he refused because I had not quit smoking in the 2 weeks between visits. I dosed with vitamin M the 2nd week of October. I am still not PF but I am back at work. The day before I returned was the 1st day I was able to be in the sunlight without sunglasses. I don't want to share that experience here in this thread but it made a significant difference. After reading this thread, I think I understand that you can have SUNCT , CH, & SUNA concurrently. I had not heard about SUNA until today. I will try to find something about it which may help me understand this more. I apologise for the long post. I just have not discussed my whole experience because most post I read don't seem to share some of my symptoms & I start second guessing myself. Thank you for everyone who posted in this thread it was all good info & to know that I have not completely lost my mind (yet). I apologise if my post is hard to follow. I tried to be as precise & to the point as possible. I have a tendency to leave out words bc my brain thinks faster than my fingers.