Hello, as my profile suggests I live in the Baltimore metropolitan area: thankfully, access to top doctors is easy, and there are an abundance of them at that. I have been diagnosed with cluster headaches, acute, and the doc suspects chronic, now at 11 months without a break for more than 5 days (going insane). The doctor is a board certified neurologist, head of stroke unit, and affiliated with Hopkins, he specializes in headaches as well: the fact he knew what a cluster headache consisted of, was a good start, hell his office had pamphlets on it.

The medications prescribed are the norm, Depakote ER 1000mg, Verapamil ER 360mg (cannot go higher, my blood pressure is already getting low from that dosage, I am a skinny guy 5'10" 150 soaking wet). To abort, I use Alsuma 6mg injections ( luckily my insurance authorized 10 a month) I also have Imitrex nasal, but am not fond of them, my time window is limited less than 10 minutes; however, they are nice to carry around in case of an attack while at school or on the road. I am aware of the interaction between those and Alsuma, another reason I try to avoid using them unless necessary. Also, for health reason, I stopped the usage of Lithium and Tegretol, after 10 years being stable it was time to stop those crazy meds, Lithium is not recommend for a long duration, according to my docs. I am scheduled for Botox injections, seems absurd,but at this point I will try anything.

Alternative treatments seem useless; yet, I take magnesium, a B complex, amino acid complex, melatonin, and multivitamin/mineral.

Limitations are hidden, I have had to many disabilities to knock me down: including two spinal fusions, one the lower spine, L4-S5-L1 , the other C3-C7 neck. To deal with pain I just take  injections, sometimes daily, if I run out use the nasals. As far as symptoms, the clusters are usually in my left eye, tearing and nasal congestion always prevalent, sometimes this shifts to my right eye. The pain can shift to the temple, and or jaw--flushing/sweating is not uncommon: the duration is usually less than hour, the ones that wake me up are a b!@#$ usually four hours, pure hell. If any limitation, my sleep cycle is destroyed, which I do realize complicates the problem, I am sure my neighbors think I am night owl, not uncommon for me to be awake at 5 am or be up for two days straight.

Last, I have a good understanding of these, a family member has episodic clusters, thus, when I received the diagnosis, my exact thought was oh sh@% I am in for a long ride.  The support network is there, that does help. Figured I would join to gather more insight into this, my expertise is not in the medical professions, in case it matters I am a finance, Econ, and Accounting major, (I have no life, serious).

Funny you mention the O2, it seems like it is hassle to get this, the reason I am unsure of. I asked my doc about this, and it seems the answer is always diverted. If not mistaken the injections can have some nasty side affects through time; I will not take Prednisone, for I actually know someone whose vision is terrible after a long-term taper, not for cluster headaches. It is bizarre, you would think any doc would want to take the safest approach, it is just oxygen. The only advantage to the injections that I have is convenience, I am seldom home, a non re breath mask and big tank would not work carrying around. As far as injections, in case anyone is wondering the Alsuma is powerful, I can be in the middle of an attack and it will abort it; however, expect nasty flushing, spasms, and other uncomfortable effects after the injection, even a burning sensation through body. As far as efficacy, it might last half a day.

Regarding vitamin D, thank you for the input, I take a liquid version (forgot to mention) but not at that IU. It seems a trip to a holistic doc would not hurt. I do notice a difference in severity, less severe attacks, when my body is in an alkaline state, the problem is ph strips are not the best method to determine this. Why I prefer a voodoo doc to order the lab work, and determine what is needed from there, I have heard when you are deficient in one vitamin or mineral you are likely to be deficient in several. The logic, according to local health food store is when the body is in acidic state you are exposed to inflammation, overload of toxins, thus problems occur: for all I know it could be a sales method to sell 21st century snake oil.

I mention this med, acknowledging, that you can't use it if, in fact, you turn out to have Chronic CH. But it's a remarkably effective abortive if you don't have multiple daily attacks and, as you see in the abstract, for a few people it totally stopped their Cluster attacks.

So, might ask your doc if he would consider a trial. Within 1-3 uses, you'll know whether it works for you.

I started using it when it first hit the medical literature as an trial item. My response was so positive that I was bouncing off the ceiling with joy: no side effects; total relief in 20-minutes; never a recurrence or redevelopment of an attack; and, cheap compared to the sumatriptan.
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Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.


Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

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Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]

Actually, just answered that question, how stupid I feel: called a manager of supply house I know well, it all gets filled in same bulk, the difference is in the tank itself. Welding tanks should be free of oil and impurities due to risks of explosion, etc; however it can be difficult to judge, tanks are usually beat up in a trade off program. Think I figured out the solution, buy my own tank and just get it filled at the supply house, if I have to trade it in, I know with my nitro tanks I used to spray the tank, and write my name all over the tanks, and demanded them back, seldom had problems with that. The regulators we used are slightly different to be safe I am going to order one off Amazon once I have some extra cash. The other reason I would recommend demanding your own tank, if you could have access to this is simple: people tend to fudge the valves, ding the tanks, allow them to get rusty...nothing was worse then being on a job sight humping an 80lb tank of Nitro up a 20' latter just to get on the roof and find the valve is f#$$%