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Sounds consistent with cluster headaches more than most other things. The only real inconsistency is when you are getting hit. Classic attacks often awake one from a sleep with the time being fairly consistent. Non steroidal like ibuprofen usually don’t do squat so the relief you perceive might be coincidental. Just because oxygen is difficult to get doesn’t mean its not worth aggressively trying. The exception would be government provided insurance (Medicaid/Medicare) where you are certainly out of luck. It’s worth pursuing welding O2 otherwise. If you can abort a headache with O2 that sort of cinches the diagnosis, very rarely other headache conditions respond to oxygen. In cluster headache folks it is very reliable. In the end you must be the master of your treatment. Research options and partner with your neuro to direct your own care. You bear the burden of this godless condition so taking as much charge as you can is important. Topamax is a very plus minus drug in my experience. Personally the side effects were too much for me to bear. It seems a rare soul who gets enough relief to accept taking it especially if there are other more palatable treatments out there. CHFather is right on in directing you to summary info of what the collective has learned over time. Personally the most frequent abortive are Oxygen, O2, oxygen followed by chug a lug energy drinks and high dose steroids (60-100mg a day for a couple of weeks). Imitrex works but there is a price to pay: rebound headaches and extended cycle. Prevention is a mixed bag. The reports on D3 are encouraging and there is little downside. Quercetin has been recently brought up up very little data, but , little downside. Most of the pharma solutions for prevention verapamil, topamax, depakote etc are more minus than plus, individual responses are not reliable. THe CGRP inhibitors show promise (at correct dose) but for me the jury is still out. Busting seems to work and has a long track record in this community. This is a personal choice and I would advise careful scrutiny before deciding its worth trying. Mushrooms have saved many lives. I am not sure how much additional work up you need. Since you have had this condition a couple of decades the chance of a scan being helpful approaches zero. Clusters are a diagnosis of exclusion and time has excluded most other diagnosis. The cost of an MRI buys a lot of oxygen. Welcome and stay in charge of your life.

https://youtu.be/AbOhVahPNl0

Hi Tony it's Nithin from India I just saw ur post on ayurveda having a cure for cluster headache did it work for you plz let me no I live in India

Acupuncture is almost always ineffective. I think a few people have benefited from it. WHY do neurologists keep finding reasons not to prescribe O2. It might be difficult to get it approved by insurance, but with most private insurance companies that battle can be won, and sometimes there isn't even a battle. Medicare and Medicaid won't cover oxygen. Also, having a prescription allows you to pay the O2 provider out of pocket if that's a necessary way to go. If you read the post I linked you to, you'll see the answer to this question (which is yes, by using welding oxygen). Be sure you do the whole regimen, which is more than just high doses of D3. Yes (see the post I linked you to). Cold air can help. If it's cold outside, that's one way. Others inhale from an air conditioner or open freezer. If that helped you, O2 will be great for you.

Hey @Phantom99 welcome to the forum. It sounds like what you’re describing as clusters. Migraines don’t usually disappear for a few years and come back out of no where. Unless you make some sort of drastic change, moving, completely new diet etc. it’s good that you have already recognized some patterns so you can act appropriately. The mild pain you are having after an attack is a shadow. I would go buy fresh ginger and grate it, throw it in a blender with some honey and Apple cider vinegar and take a shot every day! Ginger is good for shadows. I also have ginger capsules you can get at the grocery store (not as affective as fresh though), AND it’s good for you :). I would automatically find a new neurologist. Prescribing topamax when he even said what you have are clusters is not a good line of treatment. It’s not a good drug. I was on it for a long time and the side affects were brutal. They didn’t help my headaches either. I would put all of my energy into getting some oxygen. It may take a while, but if you are persistent you will get it! The D3 regimen is something you can start right away without a script. There is a link for it on here if you just search for d3. No script needed, and the vitamins can only help you over all. I would ask my doctor about verapamil instead of topamax. It’s a way better medication when it comes to treating clusters, and I can’t imagine the side effects long term are anything like with topamax. Hang in there kat

The location of the pain along with the signs and symptoms you feel during are classic cluster signs. Yes they can change in timing, length, frequency, go from episodic to chronic or vice versa, as several say here, the moment you think you know your cluster, it changes. O2 is a go to suggestion, 15-25 litre per minute in a good non-rebreather mask. 100% oxygen. If your dr knows what clusters are you are ahead of the game, so few do. I would get the other tests, as a precaution. Topamax aka topiramate has some unpleasant side effects, and is not always the first go-to drug. Generally any abortive meds, such as triptans and such for clusters are rarely used orally, since it takes a while to work, nasal triptans or injections work far faster, but triptans can cause rebounds if over-used. If advil is working for you, you are very lucky most pain meds up to and including opiates and such tend to do nothing for a cluster. I would go through the diagnostic criteria with your neuro, get the tests to rule out other causes and maybe ask/talk about a prednisone taper, verapamil combo before going with the Topamax. Others will have more suggestions and ideas, you may also want to have a look/search for the vitamin d3 regimen here, many have had great success with it.

Thanks! Hoping with my blood dosorder diagnosis they are gone forever. Apparently polycythemia vera can aggravate CH and the phlebotomy can relieve it according to my oncologist and neurologist. So at this point I am a bit thankful for my head l, it probably saved my life.