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Other than the back thing @Amy123, your symptoms sure do sound classic, and very much like my experience, at least when I was "starting out". Yep, not just a neurologist, but a headache specialist neurologist is your ticket in the doctors dept. So many Ch'ers have been disappointed that a garden variety neurologist can be about as informed about CH as your GP is! You could consider seeking out a telemedicine appointment with an expert. You've probably seen that lot of CH'ers just scoot right around the roadblock of no access to medical O2 and get welding O2 (which is the same stuff) with no need for prescription. Maybe not as easy in a small town. That 6mg triptan you got (injection I presume) was actually 4mg too much. I've been shocked that I, like countless others, can routinely abort attacks (if caught at onset), with 2mg injections. Injections are the fastest, most effective way to abort with a triptan, and splitting doses into 2mg allotments sure helps con$erve supply and lessen side effect risk. I wouldn't recommend waiting until off of pred to start the D3 regimen, I think you should hop on it yesterday. If the D3 doesn't completely prevent your next cycle, busting very often can , and the combo of the two can pack a powerful anti-beast punch, but for best results you do wanna initiate the busting prior to when you expect the will beast pop back for a return visit.

Amy123, From my read of what you wrote, you are much more knowledgeable about CH than your doc. Great news, yet not so great. I'd throw it out there that you might want to find another doc that has experience with CH, but better would be to see a neurologist that's knowledgeable with CH. O2 script should be the first line of attack on the beast. You might get lucky, but most people on pred, our CH beast comes back toward the end of the pred taper. A few things of note: Check your diet. Remove anything that is high in Tyramine (aged meats, any natural cheeses, any fruits or vegetables not immediately fresh. Have you tried energy drinks for the attacks? Slam an energy drink at the first twinge of an attack (then get on the high flow O2). That should significantly help with the pain level and duration of attacks. Make sure when you get your O2 that you stay on it for approx 10 minutes after the attack stops. That'll usually help delay your next attack. My attacks restart very quickly if I don't stay on the O2 longer than just the attack. I'm sure some others will chime in here shortly with more and better info. J

You can down a V8 Energy Drink or regular coffee too. Both work for me thankfully as the Energy drinks ans shots are so revolting that my tummy says 'Oh hell no!' and immediately rejects them!

Hi Amy123, Just want to say that while I do not experience back pain, I often get a weird tingling pain of sorts in my left foot (opposite side of CH) when an attack is imminent. I was told before it wasn’t related but I know it is because it’s the only time I get the feeling and it usually hangs on for a bit once the episode is over………CH is just a little different in every one of us I guess

BoscoPiko, I'm no doc, but that amount of Verapamil sounds scary. If your heart rate is too low, it can cause other very serious medical conditions. I'm a huge proponent of busting. It gave me my life back and many others on here. As FunTimes mentioned take a look at the new users info at the top of the page and the ClusterBuster Files section. Energy drinks can really help the individual attacks. For my night hits I keep an energy drink on the coffee table 24/7. As soon as I wake with a night attack, I slam half the can and get on the O2. Make sure you stay on the O2 for 10 mins or so after the attack stops and it'll help delay the next attack. I've never had an issue falling asleep after the energy drink. Post hit exhaustion and I'm out like a light (till the next one anyway (2nd half of the energy drink is for the next attack). Oh, on Verapamil. I know most docs script it as a first thing to take but... Studies have shown it's maybe 5 to 10 % effective. If you're in a really bad place a prednisone taper is an option. Definitely don't recommend that route for more than one (short) round though. When you're about 2/3rds away through the taper, CH comes back. From memory, it'll give you about 2 weeks pain free time. It's not long, but sometimes is long enough to regroup on your avenue of crushing the beast. Definitely don't do more than one round of pred though. It'll wreck your body. Staying away from foods that are high in Tyramine should reduce your frequency of attacks. Tyramine is a natural inflamatory and is present at some level in nearly every food. It's a byproduct of fermentation and aged foods breaking down. No fermented cheese, preserved meats or old fruits and vegetables. J

Welcome to the site. Many things on here for you to try out but the first thing you should do if you have not already is click the New User link at the top of the page. This will give you a good overview of things on this site. You said you have oxygen so you have a good head start on this game. Make sure you have a good mask that does not let any outside air in when your using it and that you are never waitin for the bag to refill. You will need o\to work on different breathing techs until you find the one that works for you. Some like to breath fast and others take deep breaths and hold it, this will need to be tweaked until you find what works best for you. Another trick to the oxygen is to down a 5hr energy drink or very strong coffee to help the oxygen kick in a little faster for you. You will want to look into the Vitamin D3 regimen that one of our members has developed, his name is now XXX on this site and he will answer any questions you may have. Busting is another option you will end up running into here and you will have a lot of information to read up on for that also. Main thing is you are now in a good spot to fight this and people around here will help you along the way with things they may have tried. Poke around and ask questions!

Hey Bosco, sorry that you have joined our club but welcome! You seem like a cool cat, you will get along fine here. You got this, a great place to be. It's a mental game, stay strong, I'm on year 23 after they hit when I was 27.

Has anyone else found DMT helpful for migraines? I had a very mild experience with a DMT vapepen and haven't had a migraine since whereas usually I have at least 2 a week.

Thank you all for the replies! It's honestly helped so much, even just to give me the confidence and arm myself with all this info to go back to my doctor and get the right treatment plan going finally. I'll definitely check through my diet and eliminate some of those factors you mentioned, @ThatHurtsMyHead and be sure to pick up some of the 5 hr energy shots to try help abort the attacks. I'm going to have to just keep drilling my doctor about the O2 and how vital it will be to battling the beast. You're definitely right about the pred - I'm on the full dose day 4, some shadowing but no headaches until today. I have had two break through clusters so far. Defeating! I follow up with my GP closer to the end of the month. I start a new job on Monday, can't imagine how I'll do that with these going on as they are without the O2. Next cluster to come on later this evening or tomorrow, I might just go into emerge to try to convince that doctor for the O2 script sooner rather than later! And thanks @Ganuchi for the insight there, I'm gathering more and more that the trigeminal nerve affects so much more. I just read somewhere in my research, probably on this site it can swell 7 times the size during a cluster so its no kidding that it's so unbearably painful for us if that is truly the case. @Bejeeber and yes you're right about a specialist that i need! The emerge doc was shocked my GP hadn't sent me to another neurologist in 19 years. I've managed to find a couple headache clinics in Toronto that I am hoping I will be able to get a referral for. Notoriously long wait for specialists though so by the time I see them, it's likely I wont be in the episode but hopefully I am in the next cluster so they can help me! In the meantime, the wealth of information here will be so helpful! And that's great to know about the injection dose, I was able to get it in emergency room but I'm going to try to see if my doctor will switch the tablets I have for the vials of sumatriptan. The tablets, even the ones that go under the tongue, I think are pretty much useless for me. And I'll definitely start on the D3 regimen, got my vitamin grocery list ready here! and look more into busting. Funny - a couple weeks ago my friends were doing some recreationally but I felt so awful I didn't participate. Dang it, if I knew it could have helped!! I'll have to see if they still have some!

Glad to see you're getting such good advice on here Bosco. I'm going to agree with and comment further on a few of the recommendations: Yep, pred can indeed supply a couple weeks break, but one more thing to watch out for with it is that some of us find the CH can then come back with a vengeance. What looked like a D3 auto-response that you received may have actually been a personal response from the world's top expert on D3 regimen for clusters, if it came from "XXX". It is my impression that the CH'ers most successful at suppressing it, and often shutting it down for long periods of time - like years on end - have mostly abandoned the pharma for the very effective busting, etc. An energy shot will have that much less junk to consume in it than an energy drink. Topomax is pretty much universally reviled among those who have been on it, precisely for the cognitive hit you noted, not to mention its general ineffectiveness