Hello all,
My name is Lacie and my husband Brian has been suffering from CH or type of CH for 4 years now. The only reason we know what we do is because of me diving online to figure out what was happening to him. I am also a nurse so that helps. However we have only recently figured this out as the last 6 months have been extremely brutal for him. First 3 years he only had maybe 10 episodes in a 6 mo period(spring/summer). This last year it has really kicked it up. We live in surrounding Tulsa,OK area and he is needing to find a neurologist or any reputable doctor that deals with these in our area.

He is a smoker but does not drink alcohol ever. He knows he needs to quit smoking but it's hard for him too with No end in sight. We have tried prednisone, indomethacin, oxygen, antihistamines, and he is on verapamil 240mg twice daily for heart rate also. Prednisone helped it seemed at higher dose 20-40mg daily but he would have to stay on that and not taper off. (And who is to say he wasn't in a remission period during that time)He ended up with torn calf muscle so we have tried to back off of the steroids but it's almost like we have just pissed this mother off and now it's just hitting him like anywhere from 2-10 times a day (steroids not helping now) and in most cases like a few hours ago he had extreme ones literally back to back for last 3 hrs and I gave him fioricet Benadryl indomethacin and he finally dozed for maybe 30 mins and now he is back up with constant mild moderate one.   He is getting so frustrated because they just won't stop. He mentions all the time about swallowing a bullet during a bout. I know pain can make people do things they normally wouldn't so I take what he says to heart. 

We need someone that understands what he is going through and can offer advice on methods of relieving them. I haven't tried the nasal sprays so that's my next phone call today with his dr.
Thanks for reading,
Lacie

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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.

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Thank you for all the info. I know all too well about drs who play drs. That's why I haven't gone out of our town yet because I have pretty much just been reading up and then telling his IM dr what I found and we try it. I know it's not the best method but it's something till I can find a good neurologist or headache specialist. I will use that last reference site you listed to find someone closer than the one I found in Austin Texas who specialized only in cluster HA (Too far).
So for in the meantime since the CH attacks are occurring very frequently should we stop indomethicin(on150mg ER daily for last 4 days with no relief, thought he might have CPH) and go back to prednisone at say 60-80mg and taper? I also called his dr and asked her to call in some ergotamine and lidocaine nasal spray that I read on here for acute attacks and I guess ask for imitrex inj.
We were in Er the other night and he got 126mg solumedrol(corticosteroid),30mg toradol, and 25mg Benadryl all IV.  Next day he had another milder one.
The continuous pain I spoke of last for hours but will go away. He has all the CH symptoms left side behind eye pain, nose stuffs up,eye tears and gets red and swollen, says it feels like someone has an icepick shoved through his temple and they are trying to pry his eye out. His bad attacks last usually a constant 3-4 hrs and then I've shoved everything I can pill wise at him and it finally seems to abate he will wipe out. Just to start over again the next day.

Question? I read on here about water helping.  Brian lives on dr pepper only. Water gives him heart burn.(I know sounds crazy but it does this to his whole family I guess). Also all this started when he turned 34 and quit smoking briefly. Have you heard of this triggering CH? He also had a small head injury around the same time frame.(came up under a pipe at work and split his scalp open about 4 inches from forehead. 

He has been on verapamil 240mg twice a day so 480/daily for almost a year so I will talk to dr about increasing. (We have fu appt next week)
As far as maintenance drug I don't think it's working and I'm really scared to out him on lithium because of side effects but I guess that's better then him hurting himself.
I want to find the root and manage that more than use steroids unless that's what we have too. Everything that I have read that could be the cause is him. Bad back,bad allergies-sinus,works nights and days(hypothalamus), extremely stressed/depressive character.
I know I'm rambling and you were very informative in your reply. I just want to get him functioning and living a normal life again and give him as much info As I can to educate him.( nothing worse then feeling like your dying and no rhythm or reason as to why this is happening, as I'm sure you know) We have 2 small kids and he is starting to shut down and let this rule his life and not even leave the house in fear of having attack.

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.
================
AND copy following and put aside to try if Imitrex not going to be possible. (Don't use it with other abortives!)
--
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

--------------------------------------------------------------------------------

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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hmmm, never heard of Olanzapine...good to know.

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!

sorry, double post

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:

About 65% of persons with CH are, or have been, tobacco smokers.[1] Stopping smoking does not lead to improvement of the condition and CH also occurs in those who have never smoked (e.g. children);[1] it is thought unlikely that smoking is a cause.[1] People with CH may be predisposed to certain traits, including smoking or other lifestyle habits.[20]

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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:

I read on here about water helping.  Brian lives on dr pepper only. Water gives him heart burn.(I know sounds crazy but it does this to his whole family I guess).

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.

You mention your husband tried oxygen without relief.
I have to ask how did he use it? Non-rebreather mask? 15 lpm?, 25 lpm might be better. There is a yellow button on the left side of your screen that fully explains oxygen use.
For the attacks 'that just won't go away' has he tried energy drinks like Red Bull or 5 Hour Energy?
You ask about the D3 treatment....

Quote:

Do you know of any websites or literature that bases and science on this helping?

I have to say to heck with science or doctor opinions about this treatment. The treatment has worked for 80% of the Clusterheads that tried it. There is nothing dangerous about any of the ingredients of the treatment. It's easy and inexpensive.
Thank you so very much for being such a strong supporter to your husband and the rest of us. We love you a bunch.

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!

:)

Hi,

A little confused as to who I am replying to...hazard of age.......but:

re Dr Pepper...I doubt is and of itself a trigger....but if it's the caffeine containing version...might
be an issue. My belief and experience that caffeine at the wrong time (IOW outside a hit when in cycle) is a trigger. Caffeine is a rather powerful substance...very vasoactive.....

Best

Jon

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  :o.
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.

You're doing great Lucie. My husband hates that he needs my support right now, but he really does. He can barely pull off functioning enough to go to work.


CH Wife wrote on Jul 31^st, 2014 at 12:53am:

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.

It's truly awful, I know :(


CH Wife wrote on Jul 31^st, 2014 at 12:53am:

The smoking not really affecting CH one way or the other I might keep to myself  :o.

I can understand that, but now might not be the time to tackle that particular issue. I would wait until the CH situation is under control, personally.


CH Wife wrote on Jul 31^st, 2014 at 12:53am:

We didn't try oxygen correctly as described to me so we are going to give it another go.

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 :)


CH Wife wrote on Jul 31^st, 2014 at 12:53am:

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.

Melatonin does seem to help many CH sufferers. My dh is a terrible sleeper too and it seems to help him to use 10 mg/night. Even more might be better in my dh's case.

Stress? I don't know about that. My dh's stress is in the stratosphere and has been for 2 years (for good reason). I think for many men (sorry to generalize here), seeing a counselor would make them more stressed...unless it was their idea (in that snowball in a hot place kind of scenario). Dealing with stress is a personal choice. Sometimes people drive themselves into the ground but they either can't or won't make changes.

I guess the things WE can do are 1. give them the info then BACK OFF (hard for me sometimes) 2. try not to nurse/mother/nag them (hard for me sometimes) 3. role model stress management ourselves (hard for me most of the time) 4. make sure there are oases of conversation and sharing where CH is NOT discussed at all.

I've found it helpful to try to tackle one goal at a time. First I got oxygen. Then I sourced and bought all the supplements and got a pill organizer and set up the first week's regimen so it was all ready to put on the dinner table every night. Then I ordered a D3 test. Then I ordered our own regulator and the recommended non-rebreather mask. My next goal will be to get dh back to the family doctor to get a referral to a headache doc (that will be hard).

Try to prioritize your efforts...My personal opinion is that trying to overhaul your dh's lifestyle might be counterproductive right now (stress). It would be a good time to observe what is happening - get your dh to start a headache diary and keep notes to look for patterns and triggers. Some learn a lot that way.

Hang in there.

[/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.

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.
[/quote]

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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only a doctor can diagnose, but night shift work is a key factor to tell the doc because CH may have something to do with the body clock, and recent studies show long term consequences of night work.

i changed my tv and computer to be orange tinted and on the darkest brightness possible, and try to limit light exposure - particularly blue light - before bed.

melatonin helps me.

having the same time bedtime and waking up same time could help stabilize biological clocks. Also eating at the same time has a synergetic affect on the body's clocks.

Great job finding multiple docs, better chance of getting oxygen quickly. And on breathing, i sometimes have to make sure I am breathing, because i forget I'm holding my breath from the pain. In case it seems like it isn't working. Just make sure he's breathing.

Water. Oxygen. MRI. Sleep test for sleep apnea. Jaw clenching, TMJ.

hang in there. next time he gets a break from the pain, no matter how small the window, do something nice for yourselves, just enjoy life however it is you like to enjoy it, and remember there is a life in between. And you are giving yourselves the tools and support to get through this, so you've already made a great step.

You can do it, we believe in you!

:)

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.

icepicksundae wrote on Jul 31^st, 2014 at 3:01am:

only a doctor can diagnose, but night shift work is a key factor to tell the doc because CH may have something to do with the body clock, and recent studies show long term consequences of night work.

Such a good point.

Cluster headache: evidence for a disorder of circadian rhythm and hypothalamic function.
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Melatonin would make sense for circadian issues. Also, religiously keeping sleep/wake hours and ensuring abundant natural light during the day.

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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Thanks fiesty and icepicksundae and shoot! We started high dose pred taper yesterday and so far so good. I am going to get everything for vit regime today. Thanks for all the links and info I have a lot of reading to do. I'm calling around to all dmes in our town to make sure they have right regulator. I will update our progress. Thank you all!!!

More info on regulators:

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Hello all,    Just figured I would update. We started the vit d regimen for the first 4 days and then I pulled him off of it because he started complaining of his heart pounding and it was the only new thing we had started. However he was only off the vitd regimen for 3 days when we seen his pcp. Got labs and guess what vit d level was 37. So I imagine it was a lot lower initially considering the massive amount he had gotten just prior to getting it drawn.   We added elavil(for sleep and depression) and it seems to have helped with his sleep. He is currently on prednisone taper which we hit 20mg daily and the CHs hit again but not as bad. But he is holding at 20daily until we see neuro next week. MRI is this Friday. O2 waiting on regulator from amazon for 25 lpm. I'm think cardiologist might be in his near future with his genetics/fam hx and tachycardia/bp issues arising. He was told by a friend that cardiologist told them that low vit d can cause MI. So now I'm dealing with that stressor on him. We are making it but still a struggle. my fingers are crossed that the neurologist will be receptive of all info and actually have experience with CH.

Lacie

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.

hi ch wife
   sounds like your doing all the right things, getting him to a proper headache specialist and getting an m.r.i
listen, testing at 37 for vit d is deficient
the only thing i'll add is, there's nothing about water and vit d, magnesium, fishoil that is bad for the heart !
short of him getting it checked out properly, which may be a good thing.
but, can I tell you about doctor pepper ! there's nothing good in them ! if he's consuming quite a bit of them thru the day, and they are of the caffiene type, then I suggest his heart maybe racing because of them. 49 mg of caffeine in them per serving ! there's absolutely no nutritional value in there make up at all, just sugar and flavourings,  get him off them !
the combination of caffeine and taurine in red bull can be used to kill off a cluster hit,  but water and all the vitamins shouldn't make his heart beat at all, unless he's washing them down with doctor pepper !
I know if I have more than 3 cups of coffee a day, im flying !   for every can of doctor pepper, that's one coffee !
I had a friend that lived on the stuff, 5 or 6 cans a day plus ! he worked night shift so he said it was his "pick me up"  well, picked him up it sure did,   he had bad blood pressure and the dock peppers were making it worse !
caffeine alone can trigger ch's so have a close look at how many and what type he's drinking.
and I might also add, well done for being there and helping your husband get a handle on this dreadfull disease !
supporters are a prized bunch of people, and those of us that suffer, love you guys to bits !
good luck and keep us posted on his development.
regards
col

Yes, I'd kick the Dr Pepper before kicking the D3 regimen  :-/ . The caffeine and chemicals are unlikely to be helping anything.

But the thing is, it's tough when the supporter is doing all the research and pushing solutions onto a reluctant CH sufferer. My dh should probably be re-examining some lifestyle issues as well, but he is still so burned out with coping with the CH that he isn't really prepared to become more proactive at this point.

CH Wife, I think where we can help is focusing on supporting our sufferers with implementing specific treatment goals. That might mean taking things one thing at a time. In my case it was O2 first, then the D3 regimen, then getting dh to tweak his O2 technique, etc. Without high motivation, a sufferer may not be able to handle more than one goal at a time.

Fiesty and Blacklab:   I have all the cofactors for the vit d regimen and had him taking exactly what was posted until he complained of the heart palpitations. I'm thinking it could be the verapamil causing rhythm issues or just major anxiety. He took atenolol originally for tachycardia and pre hypertension and we switched to verapamil when I found that it's used for CH. However it doesn't work as well for his heart issues.
Got the O2 regulator today so will get it on O2 bottle and have on standby. (I was told by Dr that anything less than 10lpm with a non rebreather mask is not advisable because he could retain to much CO2 ) but we are set now. 
Dr pepper   He has lived on it his whole life.  His mom and brother do mt dew and cigs and he has his dr pepper and cigs. most of everything anymore unless organic is bad.when he is ready to quit then I will help but he isn't ready and I'm not about to push for it lol!
MRI tomorrow so gotta get him past that and neuro in a week. 
Thanks for all the advice will update again after neuro and I will definently watch video!
Lacie

CH Wife wrote on Aug 14^th, 2014 at 11:44pm:

...he complained of the heart palpitations. I'm thinking it could be the verapamil causing rhythm issues

Verapamil can impact the PR interval, which is part of the ECG trace, which could be the issue.

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When taking verapamil it is advised to have ECGs done every few months. This might be worth following up.

Also, I have experienced major heart pounding due to anxiety. It can actually be very unsettling. I don't have any heart problems that I know of. And I can certainly imagine anxiety coming along with CH! :(

Glad you're getting it all checked out.

If your hubby is taking a calcium supplement noted in the
D3 regime you can discard it, or have at least a 7hr gap
before taking Verapamil.

Hoppy.

Well his dr called about MRI and reported he has a normal brain in a normal skull lol! So I think that has eased his anxiety a some. Now it's neurologist on Thursday. The only calcium is in his multivitamin and that only has 210mg. But he takes verapamil 240mg twice daily so there really is no spacing the calcium so we stopped multivitamin for now. Again thanks for all input!
Lacie

So it's been awhile but I have an update. My DH has had and MRI with negative results and now a CT angiogram and we are currently waiting on those results to rule out aneurysm.  The neurologist was ok but pretty cocky which my DH doesn't handle very well.  The dr is not all the way certain that my DH had ch but only due to the irregularity that the headaches strike. Which I don't really get because in my book they happen from  noon to 4am and they do wake him up but not all the time. it could be the middle of the day.  This dr seems to think we should be able to pin point a certain time and know when it's going to strike.   I just think with my husband and his job and stress he had different factors that affect his ch differently.  But the neuro does believe has a something related to the ch family of headaches.  that I have read through and we have weeded out several.  He wants us to try the oxygen and see if it helps and he said that will also help in his diagnosing my DH. DH is now on amitriptylline which according to the resident at our PCP is also used to help with CH. So far he hasn't had anymore ch since last time I posted but that's also because he has been on prednisone this entire time.  I have finally convinced him to wean off and he should be off in 2 days. So we shall see what happens.  We are starting the vit d regimen minus the vit k today. Neurologist said no to vitamin k2 but ok to everything else.  I mentioned the vit d research and he actually laughed at us and said that there was nothing to lead him to believe there was any standing in that data.  But he was ok with DH taking supplements(with a smirk) I think he thought I was gullible but then towards end of visit he realized I worked in the medical field he started acting better.  He wants to start my DH on tegretol(not a fan) after we see him again and CTA looks ok.  My fingers are crossed that I can make him eat crow on the vit d and we don't have to deal with crazy meds.

Thanks all for reading

Sounds like the neuro has read the classical description of CH, i.e. exact times for CHs, but doesn't understand that there is a full spectrum of symptoms, frequencies, etc.

It also sounds like his attitude isn't what it should be. Good job you have lots of background info on CH from what you've picked up here, imagine what its like for those who don't have this?

Amitriptylline is the first preventive I was put on and I found it worked reasonably well with no real side effects that I noticed, although I switched to verapamil after about 4 months as I was looking for something which worked even more effectively, which it did for me.

If he isn't convinced by D3, then he might change his mind when he sees the evidence of it working. I know its helping me for sure as I'm approaching 1000 days CH pain free with it.