Ok first off this is my first post and seemingly first "cycle", although, its been 8 months, and so im still a bit skeptical about it being cluster headache, even though I seem to respond to regular abortives and i get the classic, intense, skull crushing pain, partially because of the events leading up to getting these headaches (knocked out with concussion and whiplash 2 years ago) and because I have a few other painful symptoms that I havent been able to find any info on and I was wondering if anyone can testify as to whether this is just unrelated, or is a good sign that i do or dont have cluster headaches would be greatly appreciated. Sorry for the long intro, but anyways, I get this pain in my nostril of the same side as I get my headaches and it makes it very painful to wiggle my nose or breath in through my nose even. Any information would be greatly appreciated, if not, another thing, what pain do you guys get that you think isn't a common symptom of cluster headaches? Also ive tried searching the forum for any info on this and I couldnt find any so im sorry in advance if theres already anither thread on this

Click on this link, scroll about halfway down, you'll see a picture of the trigeminal nerve. It's HUGE, with branches along your teeth....which is why many people have dental work including teeth pulled to try to eliminate the pain....behind the eyes...many think glasses will stop the pain.....and along the sinuses and nose! Many think it's sinus infections.....anyway when you see the branches that run along the nose itself you can see why many get the "nose pain" thing in addition to the stabbing headaches.

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As Brian mentioned, we have a constant worry here about "diagnosing" people or helping people to "self diagnose" as there are rare but potentially life threatening situations that can mimic some of the CH symptoms. When it's possible, your best bet is always a headache speicalist neurologist, to eliminate the more sinsister possibilities, arrive at an accurate diagnosis, and develop an effective treatment regimen.

Wishing you some pain free time soon.

Joe

LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

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        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

Glad to hear you're working with a specialist....makes me feel more secure in offering these ideas:

Follow this link to the medications section of this board and read the post 

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It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 30 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

So all that follows will be worthless I hope……….but still…

1: You need a good prevent med. A med you take daily, while on cycle, to reduce the number and intensity of your attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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This link will show you how to get set up with welding oxygen:

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.


For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Woops, sorry about the crazy late repost, but anyways thanks for everyone showing me all these awesome threads with great information. Ill check them out in a little once I get the time but im a little busy.

O2, as described in the link, along with chugging an energy drink is a powerful and consistent abortive. Go with it! blessings. lance