fella1234

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 won't go into more detail there beyond saying that triptans are known to cause rebound headaches and possible increased frequency in some folks. Sometimes, an ignorant doctor isn't necessarily a bad thing... especially if they'll prescribe oxygen in the requisite 15lpm/ non rebreather mask amounts. If you haven't explored them yet, the ClusterBuster Files are an excellent storehouse of CH related information. And if you have any other questions, fire away. Good luck.

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.

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, the Imitrex I mentioned earlier is an abortive. You take it when you feel a headache coming on and that's it. From reading your diary, and with the big caveat that I'm not a neurologist, your headaches do not meet the criteria for cluster headaches. The headaches themselves are too long, too spaced apart, and the pain you describe is widespread. CHs don't last more than three hours at a spell, happen at least every couple days until a cycle is over, and the pain is localized, usually behind one eye. As such, I wouldn't expect to find any relief from standard cluster aborts like oxygen or Imitrex. I'm not an expert on any other headaches, but if they started when you hit menopause, they might be hormone related, or vitamin/ nutrient related. Not a bad idea to have your thyroid checked if you haven't lately. I wish you the best of luck in finding the cause and treating the headaches. -C

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 hours, the pain will vanish. When I sat vanish, I mean it goes away in seconds, with no residual effects beyond the feeling like I've just run a marathon, or some very minor pressure changes. It's like a light switch got turned off. No matter what position I'm in (usually laying down in the shower), I can stand up, and go about my business like it never happened. For a normal attack, that usually means going back to sleep, because that's what I was doing when it started. the actual detail of the pain is as if a white hot poker was jabbed directly into my eye and is twisting back and forth (everybody has their own creative way to describe the pain; you've got a lot of thinking time when an attack is happening.....). The pain is localized, not spread out, and I could point it out to you with perfect accuracy every time. It never changes type of pain or location. During a headache cycle, when I'm not having an attack, I have no pain. I might have flashes of pressure on occasion, or the sensation of a headache (folks call these "shadows"), but a cluster headache attack is a very discrete event you could block on a schedule to the minute, if you were inclined to do so (e.g. "Attack started at 12:14AM, resolved at 2:42AM"). A cycle usually lasts for two months, and seems to just go away eventually (before I started Busting, but that's a whole different story). While in a cycle, attacks are at least once a day, sometimes more. Everything I just described is fairly textbook CHs. Now, many folks' CHs are different, so it's not chiseled in stone, but those are all big signs. the best advice I can offer you is to keep a detailed headache diary. Your memory is not a reliable tool in perfect circumstances, much less so when you're having regular headaches. This diary should note time of headache onset, when it went away, what you did to make it go away, whether what you did worked and should keep track of what foods and drinks you have consumed throughout the day (and meds, if applicable). A doctor can use this information to give you a more accurate diagnosis and, in a worst case scenario, you can use the information to sleuth out what's going on yourself. As CHFather said, traditional painkillers, both OTC and high-strength prescription opioid, are useless for a cluster attack. I don't want to speculate on what type of headaches you might have because I'm not a doctor, and I don't know a lot about how they present for you, but headaches can have many underlying causes and their treatment changes based on what causes them. What works for a cluster headache is very different than what works for, for example, a brain tumor, which is different from migraine, which is different from severe sinus pain. All four of those can cause severe headache pain, and all four have very different treatment protocol. The headache diary will help you zoom out and get perspective on what's going down. in the meantime! Some treatments/ lifestyle changes that certainly won't harm you: drink lots of water. If you feel a headache coming on, try aborting it by sucking ice water to the back of your throat on the headache side. CHFather mentioned caffeine. Vitamin D as described by Batch. Massage tendons on your neck and head (my best one for CH attacks is right under where my ear lobe meets my head; press hard [it hurts] and hold for a slow count of 30. You might find better ones for you). Get regular sleep. That means go to bed at the same time every night, wake up at the same time every morning. Don't sleep in. No devices at least 1 hour before bed (this interferes with your R.E.M. cycle and, by extension, your circadian rhythm). Be conscious of potential allergens (for example, I'm not "allergic" to cats, but when I'm in a headache cycle, I have less attacks if I sleep in our basement, where our cat can't go and leave hair/dander/etc.). Avoid alcohol. Some folks on here swear by melatonin and Benadryl. I have not explored this and am not comfortable expounding on it. I hope all of these help, but more than anything, keep that diary! Good luck.

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 but in order to treat yourself, you need to know exactly what you're dealing with first. As far as relief goes, Imitrex is the standard abortive medicine for both migraines and clusters. The generic form is called Sumatriptan. You can get it as an injectable (which is a necessity for most folks with CHs) or in nasal spray or pill form. I have it but only use it as an emergency because I have found it causes me to have rebound headaches. But for stopping a headache, it is miraculously effective. I gave my wife one (a pill) for a severe migraine she was having last week and she was absolutely blown away by how fast and how well it worked. The Vitamin D regimen was developed by a fella with CH who goes by the handle "Batch". Standard doses of Vit D on Batch's regime are 10,000 ius/ day. I personally take 20,000/ day. This is substantially more than even a heavy load recommended by doctors for, for example, multiple sclerosis. When you are taking Vitamin D in such large doses, you need to take magnesium and calcium supplements to help you absorb the vitamin D and to counteract any deficiencies arising from its use. Furthermore, you need to take it with food, preferably a large meal. Batch's Vitamin D3 write-up in the ClusterBuster Files can give you more detail; I'm giving the broad strokes here. Batch is insistent that you get a blood test to monitor your Vitamin D blood levels (details in the file) to insure you have reached the therapeutic level. After you've been diagnosed with CHs, standard medical procedure is to put you on Verapamil and steroids. Many folks find this helps them. Many folks don't. YMMV. when you say you've done oxygen: people with cluster headaches need at least 15lpm through a nonrebreather mask for effective aborts. And you need to be huffing on it pretty hard. It's a specific process. I hope this helps you and I'm sorry about your headaches.

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 significant role in how effective it is. Please read up or ask questions (or both!) before trying this method. Furthermore, I take the Vitamin D regimen per Batch's instructions as a preventative. The only difference is that I take a regular dose of 20,000 ius of Vitamin D a day (double Batch's recommendation). I'm about six and a half feet tall, so I need the extra boost to be on par with my size. I have an O2 tank I'm going to send back to the oxygen company soon, since my headaches have stopped. I also have oral and subcutaneous (shots) Imitrex. Imitrex works wonders on a headache when used properly, but I must caution you: I get rebound headaches when I use it and others have reported the same. I will only take Imitrex if it is a true emergency or if, for example, I'm in the middle of commuting home and can't pull over or last until I get home. I have also used the ice water/ 5 hour energy method referenced by CHFather. It's not a guarantee, but it has worked before. Finally, I'm big on keeping a headache diary. The collected data helps to figure out what works, what doesn't, and to keep a cool head (pun unintended) when things are at their worst. I'm sorry this is happening to you; it sucks. But there are people here to talk to, and many different strategies for dealing with this thing. Good luck!

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 with one or both. Pain free wishes!

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 aren't worth a damn for a cluster attack and you could get addicted (also, constipated). I can't tell you how many doctors whipped out the script pad and asked me if I wanted narcotics for my pain. If your mom is someone you can rely on, tell her "mom, this is kicking my ass and I need your help. I need you to: 1) help me schedule a doctor's appointment, preferably with a neurologist or neurology PA 2) help me when I have an attack to do things I need doing (like watching the baby) 3) understand that I can't control when this happens" And if your mom can't help, don't despair! Everyone here will always respond and help you. You can always improve your situation, and there are always things you can try.

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 one with a headache specialty. The ClusterBusters and ClusterHeadaches.com maintain a list of medical providers that are familiar with CH. In the meantime, we have some techniques we use around here that may help you with the pain: 1) keep a large glass of ice water on you at all times with a straw and buy some 5 hour energy drinks. When you feel a headache coming on, IMMEDIATELY, drink one 5 hour energy in one go, then suck the ice water into the back of your throat on the roof of your mouth on the same side as the headache. This can sometimes abort a cluster headache attack (but it is not a guarantee). Keep sucking on that water until the headache feeling passes. If it comes back, keep sucking on it. Watch your caffeine intake when using this method 2) there is a tendon under your ear lobe on your neck. Sometimes you can ease the pain by pressing on this tendon on the CH side hard (it will hurt), and holding the pressure for a slow count of 30. 3) my go-to in a CH attack is to run an extremely hot shower. I sit in the shower, in the dark, and run the piping hot water right on my face. This sometimes eases the pain for 45 seconds at a time. It's not a solution, but can help weather the storm. For a long attack, it gets old though. Some folks around here prefer ice. There are many other treatment options available: if you have cluster headaches, the standard medical practice is to use: 1) Imitrex to abort acute attacks. 2) Verapamil long term to disrupt your cycle. 3) Steroids short-term to give your body a jolt and hopefully shake up the cycle. A doctor can tell you more about them if you like. More than anything else, the use of oxygen to abort attacks is indicated by the medical literature. You can find more information about oxygen in the ClusterBuster Files section of the forum. While you are there, read up on the Vitamin D method as well. Last, there is the ClusterBuster method, which involves taking certain psychedelic substances to stop a cluster headache cycle and prevent future ones. There are many knowledgeable people around here who can answer your questions about that should you choose it. finally, start keeping a diary of your headaches. What time are they? How bad are they? Where are they on your head? How long did they last? What made them feel better? This is important to help you plan what to do about them. again, I'm sorry this is happening to you, and I hope you find some relief soon. People here will answer your questions and you have many treatment options available. Stay positive !!!!

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 the real deal. They could also be cut with something, diluting their medicinal effect. If you did prepare them or can verify authenticity, you may need a stronger dose, as THMH indicated. I have noticed that mild stoning doses were not enough for me to achieve a medicinal effect. I needed full-on tripping (visual patterns/ changes and strong physical effects) to break up my cycle. Good luck!

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 me during clusters from time to time. This cycle, I was reading another post on these boards that identified a muscle between your jaw and ear that is taut during an attack and to push on this muscle until it releases. I have done this a couple times for attacks and shadows; it has helped quite a bit. I have even ended an attack early using this technique. Since my busts have shown success, I've continued to use it for shadows.

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

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 system ^_^) so I'm guessing I'll need more than the usual 10k ius anyway. I appreciate the feedback, I'm dancing around my house waiting for this O2 tank. I've never used it as an abortive before, but have heard such great things about it from everybody.

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.