CHfather

Hemicrania continua is a "headache" condition that often seems to be confused with CH. https://www.migrainetrust.org/about-migraine/types-of-migraine/other-headache-disorders/hemicrania-continua/ (HC is effectively treated with a drug called indomethacin, which doesn't help with CH.) Migraine: >>Migraines often begin in the evening or during sleep.. . . In typical cases, the pain is on one side of the head, often beginning around the eye and temple before spreading to the back of the head.<< http://www.health.harvard.edu/pain/headache-when-to-worry-what-to-do Are you able to sit or lay still when you have an attack? People with CH generally can't -- they're too agitated. People with migraine can. Some people take a lot more melatonin -- up to 25/30 mg. Have you tried an energy drink yet? For most people, even if they drink it at 2:30am to reduce or abort an attack, they don't have problems getting back to sleep. Have you tried the feet-in-hot-water thing? These are all less appropriate/effective than oxygen for CH or Imitrex for CH or migraine, but that seems to be where you're at for now. Again, I'm surprised that you had an ONB but not some other more conventional first-line things, but I'm no doctor.

The like-clockwork regularity of your attacks definitely does support your neurologist's hunch. The one-sidedness could be a bunch of things. But put that regularity together with one-sidedness and it does make it very reasonable to treat it as CH and see what happens. I don't think prednisone is usually used for migraine or other one-sided "headaches," so maybe its effectiveness will be a test. Oxygen would be the best test, I think. Are you taking melatonin at night?

You were diagnosed by a neurologist as having CH (as you say in your first post) without having any symptoms except severe pain behind your eye? Since I'm not a neurologist or any kind of doctor at all, I can't really comment on that, except to say that it seems a little odd to me. I would think a doctor would be inclined to go first to migraine or sinus headache. But I really really really don't know, and your question is a good one. You might have noticed by now that this is a pretty small community. Used to be a lot bigger, but now people are often using Facebook groups. Since you sometimes ask general questions, you will probably get more responses from a bigger group. I'm not trying to get rid of you, and in general I think the folks here can be more substantively helpful than those FB groups, but you might consider also joining a FB group. The group called "Cluster headaches" is a good one. You have to ask to join. If I try to link you to it, I just get a "Page Not Found" message, but it shouldn't be hard for you to find.

Doggone attaching-images (or documents) function is a mystery to me, and it doesn't seem like it worked for you. But what you have sounds right to me. Since Batch is the expert, and he's amazingly generous with his time, you might jump on a D3 thread over at www.clusterheadaches.com and post any questions there as you proceed. Also many others over there have developed D3-regimen expertise.

Yes, lots of people are told that about D3. As far as I know, as long as you take the full regimen as specified (and regularly check your D levels), you're not in danger. Here's what the experts say about lithium (from Goadsby, "Treatment of Cluster Headache"): >>> Lithium carbonate is mainly used in chronic CH because of its side effects, although it is sometimes employed in the episodic variety. The usual dose of lithium is 600 mg to 900 mg per day in divided doses. Lithium levels should be obtained within the first week and periodically thereafter with target serum levels of 0.4 to 0.8 mEq/L. Neurotoxic effects include tremor, lethargy, slurred speech, blurred vision, confusion, nystagmus, ataxia, extrapyramidal signs, and seizures. Concomitant use of sodium-depleting diuretics should be avoided, as they may result in high lithium levels and neurotoxicity. Long-term effects such as hypothyroidism and renal complications must be monitored in patients who use lithium for extended periods of time. Polymorphonuclear leukocytosis is a common reaction to lithium and is often mistaken for occult infection. Concomitant use with indomethacin can increase the lithium level.<<

I think verapamil is pretty affordable. It's a preventive, not an abortive, but it might be better than nothing. There are programs available at many/most pharmacies to reduce the price of sumatriptan injections and sprays. Still very expensive, but less. http://www.goodrx.com/sumatriptan?form=nasal-spray&dosage=6-unit-doses-of-20mg&quantity=&days_supply=&label_override=sumatriptan

There's no message there beyond the word "I."

You have to be logged in to see that section. If you're posting as a guest without having registered/logged in, you won't be able to get there. It's here: https://clusterbusters.org/forums/forum/6-clusterbuster-files/

bd, very very sorry you have to be here. Attacks returning after a prednisone taper is not unusual. Basically, you're just back in your cycle, so how long it will last is anyone's guess, particularly since this is your first cycle. Hopefully, not too much longer. It's a little hard to tell what you're asking. If you're asking whether it's possible that after this cycle ends you'll never have another one, I suppose it could be possible. There wouldn't be many reports about that -- Who would know? Who would report it? Who would they report it to? Some people do have long remission periods, of several years or more. That's more common nowadays, I imagine, because of treatments that have been developed by the CH community, like the vitamin D3 regimen and busting. "Chronic" CH is when you have had attacks every day for a year, with only a one-week break (or something like that). "Episodic" CH is when you have cycles that last some period of weeks or months, with periods of remission in between. You shouldn't be worrying about being chronic right now, and, realistically, you also shouldn't be hoping that you'll never have another cycle after this one ends. So you should be very active in finding things that work for you. CH is definitely not a great thing to have, but you can get to where you can manage it quite well. You should very seriously consider starting the D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/ You MUST get a prescription for oxygen from one of those fine Buffalo doctors: https://clusterbusters.org/oxygen-information/ This is the most important thing for you to do. You can try melatonin at night, starting at 6-9mg and working up. You should try drinking an energy drink, such as 5-Hour Energy, at the first sign of an attack. Your doctor should probably prescribe a preventive, such as verapamil, and an abortive, preferably injectable sumatriptan or at least a nasal sumatriptan spray. Not sumatriptan pills, which are pretty much useless. You should learn about busting, which has restored many a CHer's quality of life. You can read about that in the numbered files in the ClusterBuster files section of this board. And you should stick around here and learn from the good and knowledgeable people who have been around this block. You are not condemned to a life of chronic or episodic misery, if you take responsibility for your treatment.

Remember what spiny said up above about trying some form of ginger product to reduce your ongoing headache. 5-Hour Energy is sold at grocery stores and drugstores. A lot of places have it right at the counter where you check out. It's caffeine mixed with other things. Since it has quite a bit of caffeine, you don't want to take too many of them. You would only take it when you feel an attack coming on.

Zomig is often effective. I'm glad it helps you! Injections (Imitrex) are even more effective. You do have to be careful how much you use of the Zomig or the Imitrex, but you should get enough to use it once or twice a day. Insurance companies are very stingy about those drugs, and they are expensive. Please try really hard to get oxygen from your doctor on Monday, and please try the vitamin D3 regimen. Those can make a very big difference. I'm sorry to say that there is no pill you can take every day to prevent CH from coming back. But many people do take Verapamil every day, and for some people it can be a very effective preventive, at least for a time. Like any drug, it has side effects that need to be monitored, and long-term use is surely not good for you. The Vitamin D3 approach seems to be more effective as a preventive, with probably a lot less side effects (if any). It's a lot of pills to take every day, but they're pills that are good for you. The things that people have to endure with CH are horrible. Two small kids, trying to keep a job . . . we can all understand how incredibly difficult that is for you. The pain itself is bad enough. Don't blame you for taking whatever you could get to try to knock yourself out. But stick with this, stick with us. We'll help you get to a better place. Fingers crossed along with you. Do you have some 5-Hour Energy drinks on hand? They can be quite helpful to abort an attack or make it less severe.

The energy drinks do not work preventively (if that's why you had one at lunch).

Good for you for persevering while you look for the right help! 5-Hour Energy actually has more caffeine than a RedBull, and the caffeine is the principal factor in effectiveness. I doubt that you'll see any effect from the D3 regimen at 4000 IU/day -- but maybe you are seeing something (so darn hard to tell with CH), which would of course be great. And it's considered important that you do the whole thing, all the supplements, not just D3.

:angry: :angry: :angry: OMG, this is so wrong on so many levels. It makes me want to scream and it makes me want to cry. It's fine for your doctor to say "I don't know anything about oxygen for headaches, and I'm not going to bother learning, so I won't prescribe it." That is the fact. The dependency and dangerous stuff is outrageous camouflage for that unknowing and unwillingness to learn. EVERY serious article about CH recommends O2, particularly because it has no adverse effects except in the kinds of extremely rare cases that Denny is talking about. The symptoms of trigeminal neuralgia are completely different from CH symptoms. I presume you've done your googling and know that for yourself. Yes, the diagnoses get mixed up by -- again -- unskilled and unmotivated doctors. And baclofen isn't a first-line treatment for TN in any event. You can also look that up. Anticonvulsants, not antispasmodics, are the first choice. Not to mention that baclofen is also used sometimes to treat CH. So, if it helps you, you are not ruling out CH or ruling in TN. You're just wasting time and probably suffering needlessly. Like I told you, instead of the ice cream and all that, please try an energy shot first. And speaking of hot showers, there have been one or maybe two people here who have treated their CH by filling a tub with water as hot as they can stand and then putting their feet in it. BUT, dammit, no one should need to do that kind of stuff when oxygen will treat it, and other practices, from the D3 regimen to pharma drugs, can help prevent it. Be sure to get your vitamin D level done as part of your blood test. It's pretty standard. Your D levels will be either low, or very low. I guarantee it.

Some people find that taking benadryl daily, 2-3 times a day, helps with allergy-related CH. This might not help much on its own, but it seems to be particularly effective for people who are using the vitamin D3 regimen, which is strongly recommended to everyone with CH: https://clusterbusters.org/forums/topic/1308-d3-regimen/ You can find basic pollen count information at a site like weather.com, under the right-hand tab that says "More forecasts."

'debs, I'm willing to bet that we have had at least 50 people here who have said that oxygen didn't work for them. In at least 90% of those cases, having the right oxygen setup and using it right changed everything. I would really strongly suggest that you read the file I linked you to before -- this one: https://clusterbusters.org/oxygen-information/-- to be sure you had the right setup and were using it right. You can dramatically change your relationship to CH when O2 works for you. I suggested some other things to you in my post above -- D3, energy shots . . . -- and I'd strongly urge you to try them. If you're at the start of a potentially long cycle like your last one, the D3 can help you a lot. I'm hoping the steroid taper will help. A week is a pretty short time for a CH taper. 10 days to three weeks is more common. If that doesn't resolve your CH, verapamil is the most commonly prescribed preventive.

I don't think you'll find many fans of Allerplex-type supplements for treating CH -- BUT you wouldn't have found many who believed the D3 regimen would treat it, and now it's pretty rare to find an informed person with CH who doesn't do that regimen. It does seem that allergies can fire up CH, for sure (histamines are related to CH). The licorice root protocol helped several people, but it has kind of fallen out of favor -- not because it hasn't worked, but mostly because other things seemed easier and maybe better or more reliable. https://clusterbusters.org/forums/topic/941-licorice-root-summary/ The percentage of smokers among people with CH is very high (and quitting doesn't alleviate it, at least for 90-plus percent of people with CH). There are a whole bunch of triggers, and alcohol is definitely at the top of the list, but it's very rare to find a person whose CH is triggered by smoking.

There's a recommended doctor list by state (and province) here: https://clusterbusters.org/cluster-resources/

Adam, I can only give you a quick reply now. It is completely common -- the norm, actually, for people with CH to be misdiagnosed and mistreated for years and years. Maybe you can look at my reply just now to Deb's post to get a sense of some of the options (https://clusterbusters.org/forums/topic/4398-feel-like-going-crazy-with-these-headaches/#entry47630).%C2'> The duration of your attacks is not classic CH (your longer ones are longer than typical CH attacks), but let's discuss this more. Nothing is really "typical" of CH symptoms and treatment.

The oxygen file is here: https://clusterbusters.org/oxygen-information/ Oxygen is by far the most important thing for you to have for aborting your attacks. A doctor can and should prescribe this. The first two documents here will give you a sense of what's available for pharmaceutical treatments: https://clusterbusters.org/medical-research-reports-studies-case-reports-links/ Typically, the most effective pharma treatments are verapamil for prevention, a steroid taper to end a cycle, and injected Imitrex as a backup abortive to the oxygen. Seriously consider starting this right away: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Try an energy shot (5-Hour Energy, for example) at the first sign of an attack. Most people here find "busting" to be highly effective. Read about that in the numbered files in the ClusterBuster Files section. Much, much more . . . Please follow Sierra's advice -- tell us more and stick around!

This video demonstrates a good breathing strategy for the mask, starting at about 8:00. After showing it with the mask, he also demonstrates with just the mouthpiece. I would only observe, particularly regarding the mouthpiece, that it's okay to remove the mouthpiece when you breathe out, as long as you don't breathe in any room air. Same is true for the mask, in my opinion. Here's another one, using just the mouthpiece. The breathing instruction begins at about 5:30. A well-known CH doctor recommends looking toward your feet as you use the O2. Some people find that that seems to help. Like spiny says, stay on the O2 for another 5 minutes or so after you've aborted the attack.

There's no lpm flow rate gauge on the Harbor Freight regulator (or on any welding regulator). You just fiddle with it until you get the flow you want. That takes a very small bit of getting used to, but it quickly becomes second nature. You probably realize this already, but you're looking for the flow rate that allows you to use an effective breathing strategy without having to wait for the bag on the mask to fill.

Chris', just to follow up on what Denny said, you want to go to the Airgas welding retail store, or whatever they're calling it, not to an Airgas medical oxygen store. There's no reason why they wouldn't want to sell you a tank for welding. Also, don't ask for medical sizes (E, M, H, etc.) -- welding tanks don't have those designations, only medical tanks. Typically at Airgas they go by cubic feet. You might want to get two 60 cu ft tanks. That adds up to roughly the size of an M tank. You can go bigger or smaller, remembering that you have to bring them in when they need "refilling" (they don't refill them, they exchange them for full ones) and they can get pretty heavy and unwieldy at larger sizes. As Denny says, get the Harbor Freight regulator. Do not buy a regulator at the welding supply store.

Hmmm. I guess you might look into hemicrania continua, which is not treated by the drugs that didn't work for you but by a very strong anti-inflammatory, indomethacin. Here's some information about HC: https://www.migrainetrust.org/about-migraine/types-of-migraine/other-headache-disorders/hemicrania-continua/

Anthony, I would say (others might correct me) that it is not uncommon to have that lingering headache and the other symptoms you mention. The lingering headache is sometimes called a "shadow." Some people find that ginger tea can reduce the shadows. Also, an energy beverage might help (see below). Terror is not a completely inappropriate response -- but many people have made CH a whole lot less terrifying and a whole lot more manageable with techniques that are used here. If the neurologist gives you a CH diagnosis, insist on oxygen. You can read about that here: https://clusterbusters.org/oxygen-information/ Even neurologists are very bad at prescribing oxygen, so go prepared to insist. Once you get the prescription, you might want to upgrade your system to be even more effective . . . but for now, one step at a time. You might want to consider starting the vitamin D3 regimen that is described here: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Since it's basically good for you and not very expensive, you don't have much to lose. Pharmaceutically, the standard correct prescription for CH (unless it's contraindicated in some way) is verapamil as a preventive, and oxygen and imitrex as abortives. Injectable imitrex works best, but the nasal spray can also help. Imitrex pills are pretty much worthless. Sometimes a steroid (prednisone) taper is used to try to stop the cycle. Many folks here use other, non-pharmaceutical, methods. You can read about the "busting" approach in the numbered files in the ClusterBuster Files area. Two other things you might try: Drink down an energy shot (such as 5-Hour Energy) or another "energy" beverage at the first sign of an attack, and take melatonin at night (start at 6-9 mg and working up to find a dose that works for you).