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fella1234 last won the day on January 23 2018

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  1. Howdy Barcode, I'm sorry you have to be here, but welcome. To answer your questions directly: I've had my cluster attack times change before. It can be unnerving because you can become dependent on their predictability but it does happen, and can happen from meds or lifestyle changes. I've also had both eyes go red, though not tearing in both before. Regarding Vitamin D: make sure you're chowing 10,000 ius a day at least and see if your docs will give you a 25 OH blood test (basically your Vit D blood concentration). You've obviously done your homework on various med options so I
  2. Yes, though I don't know if it was actually sinus pain. My guess was it was slapback pain. Mine always happens after coming down off the Vit L, not during. During I might get some weird pressure sensations, but that's about it. I have also had persistent sinus infections trigger a cycle.
  3. Hi Peggy, I buy my Vitamin D from Costco and it comes in 5,000 iu doses. Batch's vitamin D regimen is for daily use. The principle is that having a high concentration of Vit D in your blood cuts down on inflammation, which is presumably responsible for cluster attacks. I must emphasize, there are other vitamins and supplements to take with the regimen. For example, my neurologist insisted I take calcium and magnesium if I wanted to take such high doses of the Vit D. If you're going to take big doses of D, you need to read Batch's guide. If your headaches are migraine or cluster,
  4. Hi Peggy, You're welcome! I have what most would describe as very typical episodic cluster headaches so maybe it would help you to hear what happens to me: when a cycle starts, I am usually hit with a major attack during the night. A "major" attack is, as aforementioned, a serious pain situation, during which I will screw my face up in pain, pace, yell, talk to myself (e.g. "Whywhywhywhywhywhywhy"), kick things, stomp my foot, my nose will profusely run on one side of my head and my eye will tear up or redden on the same side. These are all signs of a cluster headache. Within two
  5. Hi Peggy, Firstly, I would get thee to a neurologist (with a headache specialty) if you haven't been yet. What you describe could be cluster headaches, though I can tell you I've never been able to put on an ice pack and go to sleep when I'm having an attack. Normally, attacks are far too severe for that to work and necessitate rocking back and forth or pacing to cope with the pain. Bad attacks usually involve me intentionally scalding myself in the shower or banging my head on a wall/ doorknob. Thankfully, my condition has improved enough that that doesn't happen very often anymore
  6. Hi Richard, as CHFather said, there's no way to tell if it gets worse or better in its own; it's different for everyone. The good news is, you have a diagnosis which means you are on the path to proper treatment! CHFather summed up all the various approaches perfectly. You ask what works for us, so, for myself, I have successfully "Busted" a normal 6 - 8 week headache cycle in three weeks. That means I took psychedelic substances using the ClusterBuster methods and my headaches went away. It is not like popping a Tylenol; there are specific rules to follow that play a signi
  7. Hi Littlecush, welcome, and yes, I am sorry you need to be here. we all feel your frustration regarding trying to explain to people... there's just no way to communicate the level of pain, and even the most well-meaning supporter can't grasp it. My best friends will often say things like "how's the head?" And I know they mean well, but such a casual comment comes across as totally inadequate for what we go through. Jon has awesome advice above for oxygen. I would also add: have you researched Busting and the Vitamin D regimen? Many people here have experienced long term relief w
  8. I agree with Denny; definitely sounds like clusters and definitely need to see a doctor with information about CH as soon as possible. High flow oxygen will help you abort attacks and control your pain and then you can start worrying about what to do long term. I understand how you feel with your mom. I used to tell people I'd jab a syringe full of heroin in my eye if I thought it would help. That brings up an important point: opiates do not help cluster headaches. Many well-meaning doctors and people will offer them to you but I would advise you to turn them down. They ar
  9. Hi Melissa, I'm sorry this is happening to you. are your headaches spread out over your head? Or are they concentrated in one area? Where are they? what does the pain feel like, specifically? Does your nose run or your eye tear up on the side of the pain? Do your headaches tend to happen at the same time of day? We are not doctors and cannot diagnose you with cluster headaches; however, there are some tell-tale signs to look for, which is why I asked you those questions. To get a diagnosis of cluster headaches, you will need to see a neurologist. Preferably on
  10. Douglas, I wrote the below before reading your second post: I'm so sorry to hear your story. I share your reticence for prescription meds. I have found ginger and caffeine to be helpful for shadows and would just second what I said below about you likely needing a larger (and verified psilocybin/ lysergic acid diethylmide) dosing regimen. *********** To add to the above: did you prepare these pills yourself? In the States, powdered in pills is not a typical manner of selling MM on the market, so unless you had noticeable tripping effects, I'd be skeptical you got th
  11. Before I knew I had CH (when I thought I just had a curse), I used massage extensively for treatment. The massage therapist I saw at the time was pretty physiologically knowledgeable and said there's a muscle group that runs from behind your shoulder blade, up the side of your neck and across most of your face on the corresponding side and mine was tight as a drum on my right (cluster) side . He told me to lay on my back and roll a lacrosse or tennis ball under my back until it hit just between my spine and shoulder blade and lay the muscle on it then give a slow count of 30. It has helped
  12. Thank you, Merry Christmas and a happy new year to all of you. I've said it a couple times but important things bear repeating: these forums and the people in them have been a godsend this cycle. Thank you, all, for the advice and support. It means so much. -Chris
  13. I appreciate the go ahead! I am ECH as well, I have never used 02 before, but I'm currently awaiting delivery of my first tank in the next 15 minutes. My current treatment is taking vitamin L in 4 day increments, due to Christmas coming up, and I have been on the vitamin D regimen for about a week and a half. I have not been taking Vitamin K with it, because I had to order it (wasn't at Costco or grocery) but have taken everything else. So far, no change, but I'm going to up my dose soon here. I'm 6' 4" and about 230 lbs ( or 190 cm and 105 kg for those of us on the correct sys
  14. As someone who hasn't aborted with oxygen yet, this kinda terrifies me. My cycles *used* to be 4 - 8 / day but this cycle has been a so-far very manageable 1/day - 1/every other day. The idea that I could make it more frequent is just.... I know it's so hard for us to determine causality or even correlations here, since we all try and do so many different solutions, but this thought re: o2 gives me serious pause about using it.
  15. ^^^^^^^ this. For me, it's like there's been a heavy blanket on my brain that's gone when the cycle is over.
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