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krisd71

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  1. 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.
  2. krisd71

    New & Desperate

    @Clusterfukked I appreciate all your encouragement and support. I still not sure of all the terms just yet. But I think I get the jest. At this time, I am unsure if I even have health insurance anymore. I knew I was going to have a different insurance plan as of September 1st. At that time, I was not sure if he would be in my network. I don't even know if I am on personal leave, FMLA, or short term disability. There is a huge lack of communication. I should find something out tomorrow.
  3. krisd71

    New & Desperate

    @CHfather As usual, I left out some info. I have taken several different forms of summitripans. Now I have the Zomig injections. But you are correct the side effects suck. I have severe anxiety to begin with & that obviously don't help. The injection makes me feel so bad & then knocks me out. And I normally, wake up with the same way. I live in Texas. Before they got this bad I was calling around for the O2. Only one place in my area had them available but didn't take my insurance. My father lives in another state. I will look into the D3. My pain orginally just my eye. Now I have pain in my eye, my ear, temple, & above my brow. I know that I getting tension headaches because of being so tense all the time. I eat exerdrin like candy. Thank you, Kris
  4. krisd71

    New & Desperate

    @spiny @ClusterHeadSurvivor I want to thank both of you for your quick response. Your empathy made me cry. Dr. wrote a script for oxygen & mask. Í was unable to find any place that would fill it for one reason or another. I saw the post on getting it from a welding supply. I went to ER when one time & yes it did abort it. It started again as soon as I walked out the door. Then there is an issue of my boyfriend's son. He has quite a few serious behavioral issues including setting fires. Which is a concern. I had gotten approval to keep at work. I work in a prison so I cannot keep in my office. He put me on Veramil. I was so dizzy & lethargic that could not stand. I relucantly agreed to try Topamax because of cognitive issues. I already have cognitive problems. Granted, nothing major but surely don't need to make them worse. Today, I am suppose to be at 100mg. But at 75, I was having problems with word recall. And the side effect of numbing hands & feet. It knocks me out and when I wake up I have no idea where I am at. I have my 1st CH about 730am. So, when I take the Topamax, I am not awake before it hits. The CH wakes me up & I am trying to figure out where I am. He did the nerve block about a month ago with lidocaine/cortisone. As soon as he mentioned nerve block my PTSD kicked in full force. That was an emotional upheaval for absolutely nothing. It didn't work. They continued to get worse. That's when he ordered the MRA & MRI. I called on the last week of the month asking if he had any "Hail Mary's" bc I was going to be employed by new contractor @ midnight on Sept. 1st. He said, a large dose of steroids. The last 2x, I have not faired so well. Both for pnuemonia. Last one was less than 6 months ago and I ended up in the ER. I take melatonin and multi vitamin. I have tried high doses of D & it made me miserable. This was prior to DX. I have not read the D3 thread, yet. Until recently, I have never had them in the middle of the night. I have 2 CH in the AM. Normally, after 1pm, I am somewhat better, with a few intermittent in the afternoon that most of the time are not as severe. And then, I have another big one about 9pm. I have become concerned bc everything I have read mentions others being pf. My eye seems to never stop hurting. Not same pain as the CH. But when I try to look in certain directions it causes immense pain that will trigger CH. I can not bear any direct bright lights (sunlight after 12pm or florescent). It is a excuraiating. I got upset when I was registering as CH patient & trying to find criteria. I gave up because I saw all the other classifications. I have a tendency to irrationally overreact to health issues due to before mentioned PTSD due to childhood cancer. I will read more boards. All I have is my phone to access Internet and reading can become difficult sometimes. What are shadows? I read omnious feeling. Can someone elaborate a little more. Thanks so much for all yall do. It is amazing this community exist and is so well organized. I am truly amazed. I don't know why I didn't reach out sooner. My Dad found y'all & was insisting I contact yall. I can be a little hard headed, lol. Kris
  5. krisd71

    New & Desperate

    @spiny @ClusterHeadSurvivor I want to thank both of you for your quick response. Your empathy made me cry. Dr. wrote a script for oxygen & mask. Í was unable to find any place that would fill it for one reason or another. I saw the post on getting it from a welding supply. I went to ER when one time & yes it did abort it. It started again as soon as I walked out the door. Then there is an issue of my boyfriend's son. He has quite a few serious behavioral issues including setting fires. Which is a concern. I had gotten approval to keep at work. I work in a prison so I cannot keep in my office. He put me on Veramil. I was so dizzy & lethargic that could not stand. I relucantly agreed to try Topamax because of cognitive issues. I already have cognitive problems. Granted, nothing major but surely don't need to make them worse. Today, I am suppose to be at 100mg. But at 75, I was having problems with word recall. And the side effect of numbing hands & feet. It knocks me out and when I wake up I have no idea where I am at. I have my 1st CH about 730am. So, when I take the Topamax, I am not awake before it hits. The CH wakes me up & I am trying to figure out where I am. He did the nerve block about a month ago with lidocaine/cortisone. As soon as he mentioned nerve block my PTSD kicked in full force. That was an emotional upheaval for absolutely nothing. It didn't work. They continued to get worse. That's when he ordered the MRA & MRI. I called on the last week of the month asking if he had any "Hail Mary's" bc I was going to be employed by new contractor @ midnight on Sept. 1st. He said, a large dose of steroids. The last 2x, I have not faired so well. Both for pnuemonia. Last one was less than 6 months ago and I ended up in the ER. I take melatonin and multi vitamin. I have tried high doses of D & it made me miserable. This was prior to DX. I have not read the D3 thread, yet. Until recently, I have never had them in the middle of the night. I have 2 CH in the AM. Normally, after 1pm, I am somewhat better, with a few intermittent in the afternoon that most of the time are not as severe. And then, I have another big one about 9pm. I have become concerned bc everything I have read mentions others being pf. My eye seems to never stop hurting. Not same pain as the CH. But when I try to look in certain directions it causes immense pain that will trigger CH. I can not bear any direct bright lights (sunlight after 12pm or florescent). It is a excuraiating. I got upset when I was registering as CH patient & trying to find criteria. I gave up because I saw all the other classifications. I have a tendency to irrationally overreact to health issues due to before mentioned PTSD due to childhood cancer. I will read more boards. All I have is my phone to access Internet and reading can become difficult sometimes. What are shadows? I read omnious feeling. Can someone elaborate a little more. Thanks so much for all yall do. It is amazing this community exist and is so well organized. I am truly amazed. I don't know why I didn't reach out sooner. My Dad found y'all & was insisting I contact yall. I can be a little hard headed, lol. Kris
  6. krisd71

    New & Desperate

    I was DX in July w/ CH. Started approximately 18-24 months ago periodically. The month of August I worked a total of four days. Last day, I was able to work was August 15th. It is difficult for me to write this post & to read other post. Please forgive, I skip words or try to put in simplest terms I can. I feel as my whole identify has become a cluster headache (f*#$). I have Horner's Syndrome due to childhood cancer 40 years ago in my left eye. My CH affect my right eye. I am legally blind in my R. eye. When I have CH & my eye completely swells shut I am blind. That doesn't include the pain. I have tried almost everything. I am not able to tolerate most the meds. I had a nerve block with no relief at all. I started becoming suspicious that CH may not be the primary headache recently. I had a MRI & MRA with & without contrast. Report was normal. I wanted to introduce myself & had some questions. I think I will wait on the questions. After reading some other posts, I have become frustrated. I don't want to have a pity party. I am running out of time to resolve this issue. Thank you, Kris
  7. krisd71

    Anyone else find this to be true?

    I have always had severe allergies. I have noticed since I have been DX I have had no allergy problems.
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