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No apology needed Angela. Working up the amount of Verap is common. Some go very high if they don't have side effects and it takes that much to keep the CH at bay. If you can, make sure that you are getting the 'short acting' version, not the 'extended release' type. For some reason, it works better for us. If your script says take twice a day, it is likely long acting. Also, keep an eye on your blood pressure as Verap will lower it. I hope that they gave you a non-rebreather mask. That is the kind with a bag attached and no outside air gets in, just pure O2. The D3 regimen is great!! It has helped many people actually become Pain Free. Just follow the directions and I suggest you do a loading dose for starters. It can provide relief in a couple of weeks if not sooner. And it is all good for you. Are you aware that 'Chronic' means that you do not have more than 2-4 weeks headache free in a year? Has it been that long for you? Have you tried caffeine at the first sign of a hit? It can abort one if taken at the very start. And it is great to drink one really fast on the way to your O2.Did you get any instructions on how to use your O2? That is really important. Welcome and we hope to see you pain free ASAP!!!!!

This is an interesting description of CH. My CH always started in the same ways as described above. I'd get struck during the night. My first thoughts would be "No - no way! "This can't be happening out of the blue like this... again". And then I'd have to come out of denial and deal with the attack. My attacks always began with an uncomfortable feeling behind my right eye that I just felt I needed to get rid of. But I could do nothing to stop and and it would rapidly get worse. Normally, within ten minutes the attack would be excruciating. Back before I knew what my headaches were, I'd neck some pain killers and ride it out. They'd normally be at their worst for 30-60 minutes but they wouldn't end suddenly, as some people would describe. They'd begin to ease and gradually fade away over the space of say 30 mins. During my first few bouts I don't remember having any pain between attacks but I would get shadows and I'd often wake with a nagging ache behind my eye that'd make me jump out of bed. Like Fella says, I'd avoid lie-ins and I'd try to sleep quite propped up. Nobody's ever explained to me why it hurts more to lie flat when you're in cycle? My bouts of episodic CH would last 2-3 weeks, except my bout in '99 that lasted about 6 weeks. My remissions began to lengthen too. My bouts are different now and I question whether i still even have CH. I began to have bouts of shadows about 18 years ago. These would be episodes where I'd have shadows and constant pains and sensations in the CH part of my head. I was convinced my attacks were coming but they mostly didn't. Only on one occasion during these bouts of shadows has a real CH attack broken through, and that was after a heavy night of partying. It was also 14 years ago now. In 2002 and 2003, bouts of "normal" CH began in the "normal" way, i.e. a sudden attack during the night without warning. These went away fairly quickly, possibly because I used verapamil but my "real" bouts were always short. Since my last full CH attack, I've had bouts of shadows in 2004, 2006. 2010 and the current one that has been ongoing since June 2017 (yes - I had a blissful 7+ years of full remission). Shadow bouts vary in length. The shortest was a few days. The longest was over a year (they called me Chronic, in spite of me not having full attacks). The interesting thing as far as Peggy is concerned is that I am in almost constant pain. Today, for example, I have a burning, piercing pain in my nose and eye that feels like a hot screwdriver is being pushed up my nose. Some days this is more of an electric buzzing feeling. Other days is is a burning/piercing or a squeezing and twisting feeling. My right nostril also blocks repeatedly throughout the day and can become severely painful. I also get "shadow attacks" that begin to build like a real CH attack but they then level off at about a 2 -4 and can sit there for 4+ hours. I wake in the night with a piercing feeling in my eye but no CH attack. I woke this morning with the old nagging ache that used to be a warning that an attack might come, but it didn't. I generally sleep well and get pain free nights. In November I had a good 2-week period after a holiday where it felt like I might be back in remission but it didn't last. So, over the past 6 1/2 months I have had virtually no pain-free days whatsoever. I have a supply of O2 that I have tried just once. I have several Sumartriptan injections and nasal sprays to hand that remain untouched and I've very recently started verapamil to see if it'll knock this out. Sorry - it's a long post but the detail might help Peggy and I'm always on the look out for somebody that might recognise my symptoms. My current neuro seems pretty confused!

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 and welcome! Sorry you need to be here...glad you found us..... To add to spiny's excellent comments: generally reported sweet spot for verapamil dosage is 480 mg/dy...divided doses...try timing doses just prior to expected hit times. Some folks...like me.... had to go to over 1000 mg/dy....a regular MD will freak at that number...an EXPERIENCED headache specialist will NOT. Typically a prednisone or methylprednisolone IV or tablet taper is undertaken when starting verapamil...frequently (but not always) will break a cycle and give the verapamil time to kick in (10 dys to 2 weeks typically). Clusterheads tend to call Topamax: Dopey Max ....as the side effects are life altering and unpleasant...... Look for the cheapest energy drinks that contain at least 100 mg caffeine and 1000 mg taurine...they are synergistic. Red Bull is the most famous but is WAY expensive and lower in these components than you need. Drink as cold and as fast as possible as soon as a hit seems imminent...carbonated versions seem to work better as absorption time is decreased..... Tell us about how you intend to use O2...the proper way will leave you in tears of joy and disbelief! Best Jon

Nothing significant to add to fella's superb response. If phenergan, an anti-histamine, worked for you, it's possible that Benadryl will, too. Recommended dosage is 25mg every 4 hours, and 50mg at night, with the usual warnings about drowsiness. I share fella's doubts about whether you have CH. When you say "Lately they have been lasting about three weeks," do you mean that you have an ongoing severe headache for three weeks, or that you have attacks frequently during a three-week period and then they go away? If you do have CH, strong pain-killers (such as Toradol) are not going to help. The strongest analgesics/opiods don't work. As fella says, oxygen, verapamil, and sumatriptan are the first-line treatments, and maybe some prednisone to perhaps create some painfree time. If you do have CH, it's possible that caffeine will help you (there's some of that, but not enough in Excedrine Migraine). You might try drinking an energy shot, such as 5-Hour Energy, when an attack begins.

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.

G'day mate. My girlfriend got the powdered MM's from a friend up the valley from here, and she put them into capsules. If i feel a shadow i take M.P.65 Magnesium phosphate 3 of 65mg or a double shot black coffee. My next MM session is Thursday and I'll increase the dose to 2 grams, and keep you posted. Peace Mac