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  3. 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.
  4. Last week
  5. 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.
  6. 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!
  7. 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.
  8. He put me on 5000 for a month and said to lower it to 2500 after that.
  9. 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.
  10. 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.
  11. 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/
  12. 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...
  13. 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.
  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.
  15. Find someone who will listen and not hold anything against you. Someone who knows your just venting to feel better. Remember that it could always be worse ( Not sure what that would be like). I am in the same boat as you are, chronic, tried just about everything on this site and it only "just helps a little". Kind of sucks but keep at it. something may kick in and get you a week off from the hell. I tend to go off the reservation with the 5 day rule and the blocker rules when things are bad. I do whatever I think will help even if its just a little. Keep at it and keep lookin forward you will cone out of it eventually and be just fine.
  16. 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.
  17. 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?
  18. Hey @devonrex, Sorry your feeling down. Sure is an easy thing to get sucked into when you have to deal with CH. The ptsd is a hard one for me as well, I remember asking on here "how often a cluster head thought about attacks" because I think of them embarrassingly often. I started meditating to for 10-15 minutes a day and just concentrating on trying to block out my worries. I'm not all that good at it, but when you are concentrating on something other than the fear of an attack, it gives less time for your mind to drift back to it. Nowadays they even have apps that walk you through the breathing and what not. For the anxt, I remind myself (probably 20 times a day) that when it happens, I will get through it and that I always do. I think the depression is somewhat natural as it not only hurts beyond explaining but makes one sad to feel excluded from the world which is DEPRESSING so I try and catch myself at the first sign of the gloom and doom mode and do something (anything) other than let myself get trapped in the walls of my own thought jail. I like to write when I am starting to feel a bit depressed because for some reason the writing always seems to come out way better when on the edge of gloom jail. I also agree with @Oaksthat little things like forcing yourself to take a quick walk or sitting in the sun make a difference. Hang in there!!
  19. For me it's a daily battle to get outside and take a walk. some fresh air and talking to the neighbors is always positive. it sounds stupid, but little things help. stay positive, it will pass.
  20. A bit of an update 'Suicide headache' patient granted magic mushroom access after Health Canada U-turn After a federal judge’s scolding for its “unreasonable” and “unintelligible” handling of a Calgary man’s bid for legal access to psilocybin for excruciating headaches, Health Canada is backing down. The federal health agency has granted cluster headache patient Jody Lance emergency access to psilocybin, a psychedelic compound found in “magic mushrooms.” Lance’s win comes two weeks after Federal Court Judge Simon Fothergill ruled Health Canada wholly disregarded legal arguments that Lance has a Charter right to medical grade psilocybin. Health Canada’s initial refusal to grant Lance access to the drug under its Special Access Program also lacked the “requisite degree of justification, intelligibility and transparency,” Fothergill wrote. Health Canada’s assessors tried to argue that other modalities hadn’t been ruled out, drawing criticism from Lance’s legal team that it’s easier to qualify for euthanasia in Canada than it is to access novel therapies for headache relief. In order to be eligible for MAID — medical aid in dying — people don’t have to first exhaust all available treatments options. Health Canada’s reversal comes after Fothergill ordered a “redetermination” by a different decision-maker. Health Canada had 14 days to render a new decision, a deadline that expired last Friday.
  21. Quick history, chronic refractory, been having daily attacks, 2.5 hrs in length with up to an hour between some random longer breaks, most weeks I get about 5 or so 9+, most are in the 8 range, no other breaks. Med list including everything mentioned on this site does little to nothing. Sleep is usually with a mouthful of sleeping pills after being up over 24 hrs so I am out like a light coma patient to get through a night. How do ya'll deal with the depression, anxiety, panic, ptsd day to day? I am kinda at my wits end and anything that might give me ideas would be great. On anti depressants and such. Best I got is music cranked and try to lose myself in it. But any thoughts, suggestions or ideas would be amazing.
  22. The first successful application in Canada for a Cluster Headache Patient! Huge news! Big thanks to TheraPsil for their work behind the scenes on this! https://www.chathamdailynews.ca/news/suicide-headache-patient-granted-magic-mushroom-access
  23. Ok, I wasn't sure. I've read different things about how long to wait. I can't get approved for clinical trials because my sister was bipolar. I tried shrooms every weekend for 5 weeks and it wasn't helping this time so I got some Prednisone. They helped for the most part but not completely. I want to try to knock them the rest of the way out. Thank you for the quick response.
  24. I would say you should be safe after 7 days. Every clinical trial I have done required me to be off any steroid for at least 5 days prior to the start.
  25. argh..I'd love a drink, but stay away from any alcohol during an episode. red wine is worst trigger for me. Last night, after three months without a drop, I had two beers. An hour later the shadows crept in for a short stay. I'm enjoying a PF break, so it will probably be a dry summer for me. no need to stir up any demons.
  26. How long should I wait after I stopped taking Prednisone to take some shrooms?
  27. Earlier
  28. Join Clusterbusters, author Joanna Kempner, PhD and guests TONIGHT, Sunday, June 9 at 8pm EST! The 2nd of the 4 sessions will be June 16th as the Psychedelic Outlaws Virtual Book Club continues. For more information and to register: https://cbbookclub.planningpod.com/
  29. Clusterbusters 19th Annual U.S. Patient Conference will be held September 12-15, 2024. It will be an incredible opportunity to join with other clusterheads and learn from experts about how to manage this challenging condition. We hope you will join us for a long weekend of support, education, and family in Rosemont, IL. For more info and to register: https://cbrosemont2024.planningpod.com/
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