Cjmoe Posted June 14 Share Posted June 14 My doctor thinks I am suffering from cluster headaches. This is relatively new to me. I admittedly am a bit scared as I am going for a brain scan to make sure it’s nothing more serious. I'm scouring info online and trying to find anyone with similar symptoms to what I’m going through. 7 or 8 weeks ago, I started with daily headaches. Oddly enough every ten days or so I got these weird attacks. I woke up with a pink eyeball. Only one. It was really runny, like full of tears. Then this stabbing pain in my eye started. It was excruciating. I could t handle light in it. It lasted for a few hours and then went away. This has happened 4 times in the past two months. The red and tear filled eye lasts two days and disappears on its own. I’m still left with daily headaches. Sometimes on one side like a normal migraine, sometimes a headache over most my head. Ive started vitamin D and migraine pills, which seem to help Anyone have this? Quote Link to comment Share on other sites More sharing options...
Oaks Posted June 14 Share Posted June 14 Hi CJ, This sounds familiar and very much like CH. A couple questions. Is the pain only on one side of your head/face? How long did it last? And, What migraine pills did they give you? a lot of medication prescribed to CH is counter productive. just want to make sure you get relief and answers. 2 Quote Link to comment Share on other sites More sharing options...
Cjmoe Posted June 14 Author Share Posted June 14 Yes, the severe pain is always on the left side/left eye so far. I do get a runny nose as well during that episode. The episodes of severe pain last 1-3 hours. my doctor put me on high doses of vitamin D, oxygen for the attack, and sumatriptan until I get the oxygen and when I don’t have access to it. I think what’s worrying me is I hear so many people say the get this attack, many times a day, or days in a row. I seem to have a headache of sorts each day. It’s not too bad, I don’t even take medication for it, it almost feels like a migraine that’s looming, but never comes on. That pain can be my whole head though, or my whole forehead, or random twinges of pain all over. I’ve had migraines some days, again on the left side, but no pink eye with the unbearable stabbing pain. can it just be in presents differently? I feel like I’ve had a headache every single day for 6-8 weeks to varying degrees, and then throw in these attacks and migraines. Im hoping this makes sense. Quote Link to comment Share on other sites More sharing options...
Oaks Posted June 14 Share Posted June 14 It really does sound like CH. The lingering headache is what we call 'shadows'. Make sure the oxygen prescribed includes a high flow regulator, otherwise it won't be effective. The sumatriptan is always helpful, but if the CH gets more frequent you will have trouble getting enough imitrex, or taking it to much. Lots of other strategies to learn from others can help make life a little less painful. All CH presents a little differently. Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted June 14 Share Posted June 14 7 hours ago, Cjmoe said: my doctor put me on high doses of vitamin D, oxygen for the attack, Hi @Cjmoe, Sounds like your Dr. is a keeper! Unfortunately what you describe with regard to the stabbing pain in the eye on one side, tearing and nasal congestion is pretty indicative of CH. The part where you mention daily headaches that feel like a looming migraine sounds like what is often referred to as shadows. Shadows can be daily for some of us and more of a pre-attack warning for others. I'm glad you started getting your D3 levels elevated and urge you to read about the D3 regimen on here as it includes various other supplements taken in conjunction with the D3 to prevent the cluster bunny from attacking and it's important to incorporate them to reach cecassion. Lots of good stuff on this site. Happy you found this place but sorry you had to... 1 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted June 15 Share Posted June 15 10 hours ago, Cjmoe said: my doctor put me on high doses of vitamin D 2 hours ago, BoscoPiko said: Sounds like your Dr. is a keeper! What @BoscoPiko (and @Oaks) said! If you got the injection form of sumatriptan, you'll want to know about this: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted June 15 Share Posted June 15 Since you're new to it, this overview might be helpful: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/. At the end of that post you can read the basics about busting, which is why this site was originally created. How much D3 are you taking, and are you taking any other supplements with it (calcium, for example)? 10 hours ago, Cjmoe said: I think what’s worrying me is I hear so many people say the get this attack, many times a day, or days in a row. Yes, that's how it works for most people. That's one very good reason to optimize the resources you do have (D3, oxygen, triptan) and be sure you know what else is available to you. 1 Quote Link to comment Share on other sites More sharing options...
xBoss Posted June 15 Share Posted June 15 Any headache condition is terrible. I hope you can get to the bottom of it. You had me thinking of my first experiences with cluster headache back in 1998ish. I had no idea what was going on and I went through it with no doctors thinking I was finally feeling a headache like people always complain about since I never had any type of headaches before that. Either way it will be OK though, just something to deal with. You got this. 2 Quote Link to comment Share on other sites More sharing options...
Cjmoe Posted June 15 Author Share Posted June 15 15 hours ago, CHfather said: Since you're new to it, this overview might be helpful: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/. At the end of that post you can read the basics about busting, which is why this site was originally created. How much D3 are you taking, and are you taking any other supplements with it (calcium, for example)? Yes, that's how it works for most people. That's one very good reason to optimize the resources you do have (D3, oxygen, triptan) and be sure you know what else is available to you. He put me on 5000 for a month and said to lower it to 2500 after that. Quote Link to comment Share on other sites More sharing options...
Cjmoe Posted June 15 Author Share Posted June 15 14 hours ago, xBoss said: Any headache condition is terrible. I hope you can get to the bottom of it. You had me thinking of my first experiences with cluster headache back in 1998ish. I had no idea what was going on and I went through it with no doctors thinking I was finally feeling a headache like people always complain about since I never had any type of headaches before that. Either way it will be OK though, just something to deal with. You got this. Thank you. I really appreciate it, so very much. This forum is helping me. I’ve had such high anxiety wondering how I can have headaches everyday and scared it’s a tumor. Quote Link to comment Share on other sites More sharing options...
Cjmoe Posted June 15 Author Share Posted June 15 18 hours ago, BoscoPiko said: Hi @Cjmoe, Sounds like your Dr. is a keeper! Unfortunately what you describe with regard to the stabbing pain in the eye on one side, tearing and nasal congestion is pretty indicative of CH. The part where you mention daily headaches that feel like a looming migraine sounds like what is often referred to as shadows. Shadows can be daily for some of us and more of a pre-attack warning for others. I'm glad you started getting your D3 levels elevated and urge you to read about the D3 regimen on here as it includes various other supplements taken in conjunction with the D3 to prevent the cluster bunny from attacking and it's important to incorporate them to reach cecassion. Lots of good stuff on this site. Happy you found this place but sorry you had to... I really appreciate this response and advice. I am going to take a look at what else I should be taking and how much. Sincere thank you! 1 Quote Link to comment Share on other sites More sharing options...
Cjmoe Posted June 15 Author Share Posted June 15 On 6/14/2024 at 9:30 AM, Oaks said: It really does sound like CH. The lingering headache is what we call 'shadows'. Make sure the oxygen prescribed includes a high flow regulator, otherwise it won't be effective. The sumatriptan is always helpful, but if the CH gets more frequent you will have trouble getting enough imitrex, or taking it to much. Lots of other strategies to learn from others can help make life a little less painful. All CH presents a little differently. Thank you so much! I am reading on shadowing now. So helpful, and a bit of a relief. I’ve been worried it’s a tumor. 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted June 16 Share Posted June 16 21 hours ago, Cjmoe said: He put me on 5000 for a month and said to lower it to 2500 after that. That won't be enough, probably, and it is strongly believed that the cofactors (calcium, zinc, etc.) are important. The post I linked you to in my original post has a link to details about the D3 regimen that is used here. Just FYI, you can look up many things here using the search bar at the top right of every page. For some things, such as D3, there might be so many entries that it's a bit overwhelming. Quote Link to comment Share on other sites More sharing options...
FunTimes Posted June 17 Share Posted June 17 When getting your oxygen fight for what you want (E and M size tanks) and take what they give you. You will most likely need to buy your own regulator and mask. After you start getting your delivery get to know your driver and work deals out with them. You will want to build up a nice little stash of extra tanks if you can. Here are a few links to regulators and the mask you will want to get. Mask: http://www.clusterheadaches.com/ccp8/ 540 Regulator for larger size tanks (M, M60):https://www.wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540 Standard size regulator for smaller tanks (E tank):https://www.wtfarley.com/Oxygen-Standard-Body-Click-Regulator You will want the BARB outlet type for your hose connection Quote Link to comment Share on other sites More sharing options...
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