Let's get started!
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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.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        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.
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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.
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Thre sites which are worth your attention: medical literature, films, plus the expected information
about CH.

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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Search under "cluster headache"
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  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
         Because of your nursing background you will able to benefit from much of this material (in the last site listed).
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You need a coherent treatment program vs. starting, stopping, adjusting doses, etc. Spedcialist is best, if at all possible. Even Neuros have meager training in headache so, who ever you are considering, confirm--by direct asking--their experience/training.
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Drop pain meds: useless for Cluster. The standard staring protocol is:
    1, Prednisone, ranging from 40 to 100mg; decresing step wise every 2-3 days. If you have the right dose, this will kill attacks within hours but,
    2. AT THE SAME TIME you start a preventive, Verapamil
being the most widely used, with dosing running as high as 900mg/day. Only experience guides the dosing. (If you get into highest dosing, regular EKG are suggested--but don't get shy yet.)
          So, Pred breaks attacks while Verap is building up. Verap is the long term preventive. Some folks may use it continuosly if they have very short breaks between cycles.
   3. Finally, an abortive to kill attacks which sneak thru. Common, most effecive, is Imitrex injection.
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You wrote somthing about "cointinuous mild ones": referring to what you regard as a Cluster attack or some residual pain?  If the former, be very clear in reporting this to any headache doc you see. IF his major pain almost never stops, you may be dealing with something other than Cluster.
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Print the PDF file, below both for your info and as a tool to discuss options with any doc you see.
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    You're at the tough early stages but take our experience as a comfort: vast majority of us, once we get a good treatment program, live good lives. The % of disablying Cluster cases is small.

Would strongly encourage finding a headache specialist! You are bouncing around re. meds. Makes it impossible to stabilize him because you don't know what may be effective.
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NO pain meds! Try ice packs or, for some, heat on the tender spots. It's a quite secondary technique but, over the years, many of us have found one or the other useful.

Re. the several abortives you mentioned. Don't mix them; use one at a time! Lidocaine is 2-3rd choice; Imitrex spray is 2nd degree and reuires careful technique; Imitrex IM is first choice--but essential that it be used at the first sign of an attack. Waiting until the attack develops will reduce effectiveness to zero.

ER stuff is usually gives stuff they use for migraine--waste. Such a low % of Cluster in the population that they don't get training re. treatmen, even Dx.

Use the PDF file as an excellent guide until you can locate a specialist.

Pred. taper should take effect within a few hours; if not witin a day, stop, take a break, start a new cycle with a higher dose AND start the Verapamil at the same time.
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Referring you to the following, not to scare, but to reinforce the need for a specialist to make the Dx and control treatment.

Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
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Re. smoking. Modest amount of medical literature but without clear resoluts. At this point of his stress, I'd leave the issue alone; he has enough to stress him without trying to stop.
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IF $ is a barrier to Imitrex, your doc or phar. can guide you to programs to reduce the price.
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AND copy following and put aside to try if Imitrex not going to be possible. (Don't use it with other abortives!)
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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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He doesnt take pain meds. Just Fioricet and ibuprofen. He is going back on Prednisone 60mg daily and tapering. I have found 3 specialists about 2.5 hrs away that seem legit and 2 were on the national headache foundation site(thanks). We are stopping Indocin. Im sorry from my rambling it seems like we have been chasing meds but we really havent until last month or so. He was ok till we tapered off the steriods(he was on prednisone daily for 3-4months got all the way from 20mg to 5mg daily with no real occurrence) and then it hit hard and then even the 20mg of prednisone daily that had worked before wouldnt so we increased to 40mg and nothing so we decided to give Indocin a try because we were hoping he had CPH instead and most patients respond completely to that. No such luck however.
  I have been browsing through this forum and i see several people talk about Vit D and magnesium. Do you know of any websites or literature that bases and science on this helping?   I know most people dont like to give advice regarding medical conditions but i am just wanting any and all info i can to educate myself and my husband. I am not one to beleive that western medicine fixes everything and would like any info on CH.
I will review all sites and links you have mentioned. Thank you for your help today BOB!

Hi CH Wife,

Sorry to hear what both of you are going through. I'm also the wife of a man who has been suffering for four years.

About smoking -
Quote:
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Anecdotally, my husband quit smoking 2.5 years ago, but it hasn't helped the CH.

When you say that your husband has tried oxygen, do you mean that he tried high flow (at least 15 lpm) with a non-rebreather mask at the very beginning of the attack, and following the correct breathing technique as described below?
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It would be good to re-try this if not. It has been a lifesaver for my husband.

Regarding the supplement regime that has helped so many, you can read all about it here:
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CH Wife wrote on Jul 30^th, 2014 at 10:38am:
Is he drinking Dr Pepper with artificial sweetener? That could cause headaches and other symptoms:
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Has he tried carbonated water? Has he tried replacing Dr Pepper with a "natural" soda that has real sugar and no artificial flavours or preservatives? (Look at a Whole Foods or some kind of "gourmet" or "health food" store). Although Dr Pepper can't cause CH, it would be worthwhile to find out if it's a trigger.

Hope that helps and best wishes to you.

thank you for caring!

they are right to try oxygen again, just in case the way you take it matters, which it did for me.

100% from tank, not generator, get the non-rebreather mask on this site, at a minimum of 15-25 lpm

oxygen removes my icepick in 6-7 minutes flat.

if he hasn't had one he might need an MRI / CT for the head injury, many head injuries have headaches afterwards, and want to verify no chronic major inflammation.

i lived somewhere with bad water couldn't stand it. acidity of water could cause heartburn. try lemon juice drops in filtered water or lemonade, more alkaline and tasty. hydration and oxygen is #1 priority.

good luck, hang in there!

Thanks everyone for your words of encouragement. It has really helped today.After telling my husband everything I have been told and read I think he sees a light at the end of the tunnel. Nothing worse than seeing a grown macho man begging to die to just make the pain go away and I just feel so helpless as a wife and nurse.
He lives on regular DR pepper. So I don't know where to start on that but I am going to have him start drinking carbonated water as suggested. The smoking not really affecting CH one way or the other I might keep to myself  .
We didn't try oxygen correctly as described to me so we are going to give it another go. I also just read that calcium will make verapamil lose it's effectiveness and he has taken a multivitamin with calcium this whole time. So we are stopping that for the time being and also having his vit D25 level drawn with his other labs next week.(any other labs to have done besides VD?magnesium level?). I have also found 3 neurologists that do treat CHers and will have our pcp referring us to one.
I mentioned the energy drinks to him but I think we will wait on that for now as he has tachycardia(why he was on verapamil to begin with) and I don't think we need to fuel that fire unless we have to but your right BOBG we are keeping every avenue open to keep the devil at bay.
I had him go to the chiropractor today just to help maybe relieve some tension(he has back issues and used to go but stop sometime ago) and chiro does treat PTs with cluster ha I guess from what my husband said. Talked about 3 nerves in the head that play a part with CH and feeling around on them he said one nerve was knotted up bad.(I haven't ever felt a nerve in my 11yrs of nursing but whatever helps)

Anyone have any advice on just lifestyle changes. A few have mentioned trying to avoid preservatives and artificial sweeteners but what about tips with dealing with stress(huge problem for him, he will never see a counselor unless I drugged him and he didn't realize where he was lol) and also he has rough sleep habits. Almost 20yrs at one job working 12 hr shifts of alternating 3mo days then 3 mo nights with his work week being 2days on 3 days off 3 days on and 2 days off.
I thought about trying the melatonin but wondered if I should wait.   
Well I guess I better get off here. Thanks everyone for your help and we will try to stay positive.

[/quote]Good! Once night dh had the most scary attack that lasted for 90 minutes. I was googling in the middle of the night and decided that he HAD to try oxygen the NEXT DAY. That morning I begged our family doc to see us in the morning, convinced him to prescribe O2 with the latest study printed out to show him, then got my dh to take the 45 min drive to pick up the O2 from the supplier warehouse, and got the right kind of mask from a firefighter friend. He had 02 that night, and aborted an attack for the first time! It's really worth making this a huge priority IMO and as a nurse I know you'll figure it out ]
Yeah here lately it's been 3-4 hrs straight in the middle if the night with no relief.  What brand and where did you buy your own regulator? I used a medical dme before and their regulators sucked. He used it twice each bottle and I refilled it 3times. It leaked every time and they had different regulators every time. His dr and I know each other from me working at our local hospital so that really helps. She is very understanding and all I usually have to do is call and ask for something and I get it done. I just can't Believe that cluster headaches are so under the radar on medical research considering how devastating they are to sufferers but I'm sure it's because of limited numbers and no money in it.

Lucie, to start off with it's easiest to just get the home oxygen supplier to rent you the tanks and the regulators, and to sell you the mask.

I don't know what to say about leaky tanks and regulators. That is really dangerous! I would use a different supplier if you have the option.

We bought an E tank regulator from an ebay seller:
Seller: lonlon2       
HCS8715M Medline 1 EA/EA REGULATOR 0-15 LPM 870 CGA CONNECTION Medline

We are still renting the M tank regulator.

Seriously, please read this entire page...it has everything you need to get started with O2:
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Im am so sorry to hear about your husband,I totally understand how he is feeling,my story is eerily similar to his,from the slow onset over a few years,to the total desperation,right down to my wife is also a nurse. If it were mine to do over again I would make the D3 reg the number one priority. I know it seems like an unlikely candidate,but for 20 bucks and ten minutes at wal mart you may bring him relief in as little as a few days. I too was able to diagnose myself online and this wonderful community took me straight under wing as they have you. I was able to find a competent   
neurologist but I couldnt get into him for over a month. By this point I was suffering multiple attacks daily and was very far out on the ledge. Though I doubted a bunch of vitamins could possibly help I had nothing else besides coffee and ice packs. For the first week of my D3 I was taking double dosages(20,000IU daily) with all of the cofactors plus some extra. In 3 days I began to feel relief,in a week the attacks had stopped. Please dont wait for vit D level testing,go as soon as you wake up and read this,the stuff really truly works,you have plenty of time to read all about it later,please go now. All of the cofactors,yes the calcium with verapamil,you can read later why it is fine,get your keys,your purse.

And shoot has a point about starting the anti-inflammatory regimen ASAP. Half of people who start it have a favourable response by the end of five days, and 70% by the end of the second week. Some respond in the first 24 h (survey done by Batch).

If you have a Costco near you, it's a snap:
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More info on regulators:

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Oh Lacie, gosh that is a lot going on.

I really encourage you to watch this video about the relationship between D3 and many other conditions (including cardiac). It's long but it will really help you to understand the big picture of how the LOW D3 may be affecting overall health, not just CH:

Dr. Stasha Gominak Discusses Sleep and Vitamin D:
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If you do the D3 supplementation, please follow Batch's entire regimen with all the cofactors (not just D3 by itself).

Obviously 37 is super low when we are aiming for 60+.

I don't understand why your dh doesn't have O2 yet? I would just get whatever equipment you can rent to start with. It's a safe way of aborting the attacks that doesn't create medication interactions to worry about with your dh's multiple conditions.

Hope you get this all sorted out. Hang in there.