I have been having cluster headaches for 5 years and they have  slowly getting progressively more frequent. I found that low level headaches can be stopped with O2 with a rebreather mask. Medium level can be stopped with nasal sumatriptan and two naproxen sodium. But when I have a terrible beast headache, I found the only thing that seems to stop it is grinding hydrocodine in a mortise and pestel and mixing it with water. This makes it faster and go away quicker.  I then pace around in the kitchen in circles around the kitchen island until it goes away. Is there anything else I could try for the terrible headache?

Also, when I am in cycle my sense of smell is enhanced and I crave watery fruits like ripe plums and watermelon. Anybody else get cravings when you have a headache?

With oxygen you'll find that it will work a lot better if you use a non-rebreather mask. I and many others have found that this can kill off any CH, especially when used with a high flow rate, 15lpm or higher, with the higher the flow rate normally the quicker the abort.

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I'd skip the naproxen as this is just a non-steroidal anti inflammatory and as a pain killer it'll make not a dent against a CH.

Similarly for using narcotic pain killers like hydrocodine, these just aren't really effective against CH and they result in issues like medication rebound headaches, needing increasing dosages and then dependence / addiction issues.

You are much better using either oxygen or sumatriptan nasal spray or injections.

Also are you using any preventive to cut down how many CHs you get? Something like verapamil, lithium or topomax? Preventing a CH is a whole lot less painful than having to kill one off.

Also look at how many of us are using vitamin D3 as an effective preventive. I've been CH pain free over 2.5 years using it.

You should be on a prevenive full time when in an active Cluster period.

Suma nasal works for some but the injection form will give you faster, consistent relief.

Print the PDF file, below, and use it to discuss options with your doc.

---

1) side effects - do varapamil, topomax and lithium have physical or mental side effects when you take them long term? The only medicine I've been able to take long term is stomach acid medicine. Anything that changes my state on mind I seem to eventually reject.

2) alchohol- as a note, I used to drink two bourbons at dinner and 3 or 4 at cocktail parties and when the cluster headaches came on I realized that the bourbon was triggering the beast almost every time. I have given up all alchohol (6 months now) and am afraid of it now. This was a life changer and I hate cocktail parties now because talking to drunk people is annoying. This has been my preventative- abstention. I still have not figured out how to fit in socially without alchohol but I am becoming more tolerant of buzzed people at barbecues. I now get level 3 to 5 headaches but no terrible, pace the kitchen floor and moan for hours beast headaches. After 4 bourbon and ginger ales at a cocktail party I was woken up once at 2 in the next morning and had a head ache so terrible I was staring at my fingers and deciding that I would take a deal with the devil to cut off a finger if I never had another cluster headache again. I did decide on my wedding finger for some reason.

3) Codine-  I have injected the sumatriptan a number of times and it stopped the headache that night but twice I woke up the next morning with level 5 headache. But everytime I have used the ground hydrocodeine I sleep hard and wake up with no headache or shadow. The feeling of no shadow after days of it is really ephemeral. The codine does work for me but I do fear addiction. My rule is that unless I write level 5 or greater into my headache diary I do not take it.

4) Crunchy Foods- these things are different for everyone. For instance, even in the thaws of a terrible level 9 headache beast if I chew crunchy food the pain goes away completely for just a few moments. So I sometimes eat watermelon continuously, and popcorn and salads. I feel very lucky to have this bazaar "out" and am glad I do not have uninterruptible headaches like most others on this site. It I is funny that I envision my headache like a flickering lightbulb in a dingy basement. When it comes on, it flickers once with me going " hey, is that a headache" then it flickers on and I think "shit, this is going to suck" also, when it goes away, it flickers away, goes back on for a few seconds, then is gone, like a bulb flicker out. With the crunchy  food it actually turns off for a few seconds while my mind is processing the crunch sensation just like it goes away momentarily with a glass of cold water.

Hi Weum,
Mike and Bob have each provided the best advice you could possibly receive. 

Please consider re-reading what they wrote and talk with your doctor about their suggestions.

-Gregg in Las Vegas

All medication can have side effects and not all people get all side effects. You'll find the standard side effects for most drugs list things down from quite common to very, very rare. Just imagine the "side effects" for driving a car or flying, the vast majority of people do them without any issues at all.

Just Google each medication plus the words "side effects" and you'll see all the possible issues for each, but also compare the risk to the benefit that is can bring too. And discuss them with your doctor.

Alcohol is a trigger for most people with CH, apart from a lucky few. Just avoid it when in cycle. It can also be used for the beer test, so when you think you've finished a cycle, try a beer or similar, if its gone, enjoy it, otherwise grab your favourite abortive and wait a bit longer...

Codeine, well as per my earlier post, I don't think this is a great idea as it doesn't work effectively and the addiction issues are all too real and so easy to fall into even with very light use. I was given codeine before I was diagnosed with CH and after just a few weeks (2 or 3) I went through the fun of withdrawal after following the doctors instructions to the letter. Just because twice you got another headache doesn't mean that you'd have not got them if you'd not used sumatriptan.

Of the preventives, Verap. has no side effects until you have a pre-exissting heart conditon. Top. is often rejected by folks here because it often leave a foggy brain syndrome. Lithium is 3 choice but worth trying if all else fails.

Alcohol is a univeral trigger for an attack when you are in an active cycle. White wine has been reported as an exception.

Any abortive-Suma, etc: take at the first sign of an attack. Don't delay to see if the real thing is developing.

READ:

These sites which are worth your attention: medical literature, films, plus the expected information
about CH.

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------

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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.

Bob Johnson wrote on Oct 6^th, 2014 at 10:16am:

Alcohol is a univeral trigger for an attack when you are in an active cycle. White wine has been reported as an exception.

It isn't quite universal as a trigger, there are a small number of people here including Aussie Brian and myself who can still enjoy alcohol without it triggering a CH.

But for the majority of people it is a strong trigger for CH.

For a while beer (a couple of sips) would bring on a hum dinger CH so I quit drinking beer for about 12 years - then one night had one and NOTHING.. so you never know about it. But better lay off it if there's a doubt.

Check the O2 tab on the left and make sure you're doing it right.

D3 regimen is working for a lot of us (I've been chronic since 97 and since going on it have gone almost a year without getting hit - I do the happy dance for it).

And I'm with the other guys on the narcs.. if taken too regularly they will cause rebounds (even too much Excedrin ES can cause rebounds but I did take three of these with a cup of coffee at the first sign of a hit and they worked - just had to be careful NOT to take them regularly).

But read the information on the left and take this to your doctor. There's things that do work to help us. But most of us are very dead set against narcs in any form.

Keep us informed. We're here to help. :-*

Ok, so it's a year later and this is what has happened since I last posted. My cluster attacks have slowly increased in frequency and are constant, from 3 days a week up to all 7. 20 milligram nasal sumatriptan works for me if if take it early. I have tried injection and pill sumatriptan and they both slow but do not stop the headache like nasal. I even tried dermal sumatriptan but it was even less effective. I found a compounding company that made me a concoction that gives 5 Miligram per shot so I can use less doe and start earlier.
I have tried oxygen which works maybe a quarter of the time, I am low t and started testosterone and it help a lot of other things but unfortunately not my headaches.
Taurine. Melatonin. Vitamin d, magnesium, all seem ineffective. If a headache takes hold, trammadol, and if it keeps going then hydro codons. These don't stop the pain but I fall asleep hard and wake up with no headache. I call it abort through coma.
Am even starting one now, it's flickering on and off.

Twice I have had the odd experience of having a terrible headache that is building. I use nasal sumatriptan and then if I am watching a sad movie and start crying suddenly I feel sorry for myself and the terrible headache and their impacts and I cannot stop crying. For 10 minutes I sob, knowing it is chemical and headache created but I can't stop. It's fucked up. I'll pull myself out by visualizing myself from a ceiling camera angle and I think of how silly I look and then I stop. Really weird.

Anyway, I have no solution. The headaches are increasing in intensity and frequency. I have gotten real good at abortive techniques cycling through water guzzling, oxygen, coffee,meaning watermelon or tangerines. But nasal sumatriptan is God given key solution that is 80 percent and if that don't work then I condine myself into coma. I only use the hydrocodine during bad headaches and am lucky that I don't like the buzz and now associate it with the headache!

I need to work on preventatives now and am looking for recamendations.

Hey Weum,

We know what you're going through... and the good news is it doesn't need to be that way... There are many options...

You said you tried oxygen but at what flow rate? You need an oxygen flow rate of 15 to 25 liters/minute coupled with hyperventilating with air for 30 seconds to push your system into respiratory alkalosis... 

If used properly, this method of oxygen therapy is better than 90% effective in aborting a CH across pain levels 3 though 9 in an average of 7 minutes.

I'll dig up the post I made that explains all this in detail...  Try to get another Rx for oxygen therapy... 

In the mean time, check your PM Inbox at the top left corner of this page.  I've sent some additional information for you.

Take care and please keep us posted.

V/R, Batch

look at reply number one from Mike on New Zealand and consider what he wrote as gospel. also consider lortab (Hydrocodone) will do nothing for your cluster headaches as a preventive, nor as an effective abort despite your odd coma comment.

Due to some unfortunate accidents requiring surgeries, I have been prescribed and personally swallowed thousands of them and not once for cluster headache over the past 35 years I've danced with this beast.

so I personally do understand the addiction, dependence and withdrawal of what you consider a remedy. continue this narcotic routine you are on and I guarantee you will have addiction. as well as serious withdrawal symptoms. And if you think you cry during a movie yow, LOL, you have no idea what hell you will be going through because of lortab withdrawals.

this website has everything you need in terms of helpful advice from expert patients and caring people who understand your pain and suffering. stop poisoning your liver.

-Gregg in Las Vegas

Hello Weum, After a two year break my old friend came back last week and it arrived with absolutely no warning and within two days I had five ch night. My O2 tank still had 500 psi left but was in the garage, knocked over a good lamp as I staggered in the dark heading for garage, woke up the Little Lady with the crash, scared the crap out the dog and destroyed the shade. That morning she says-- they're back aren't they. Yup.  Started back on the D3 vitamin regime that brought pretty fair success two years ago and so far only get hit at night with only shadows during the day but I'm keeping a tank in my car at work just in case. The reason I'm responding is because it wasn't clear ( at least to me) what dosage of oral sumatriptan you were taking so I thought I'd pass on my experience. From reading posts over the years it's obvious Imitrex doesn't work for a lot of people,but it worked for years for me. A 100 mg pill cut in half taken just before going to bed buys me 7 hours of sleep, I almost always wake up from a morning Ch which I kill with O2 taken hard and fast.  (I'm not sure I'd still be around if it weren't for O2). Exercising to the point of major heavy breathing used to be my go to cure but I'm getting too old for that crap and don't need to anyway with O2 available. Oh yeah, alcohol, one drink when I'm in cycle will buy me a major Ch 45 minutes later, guaranteed, when I'm not in cycle I can drink like fish. I'm 19 years into this fun now and my first 5 or 6 cycles were pure hell as I'm sure everybody here's were too. Even now that I have an escape routes I still find myself being afraid to go to sleep. I hope you can find something that works soon. Good Luck    Sean

For years I took Topamax as a prevent, but a few years ago my neuro switched me to zonagran (I think that's how it's spelled). He said it was about the same as Topamax without the side effects.

I'm on the D3 regimen seriously (and have been for almost two years without a hit), but I still take the zonagran (just in case - I mean after all the years of being chronic I don't figure it can hurt).

I also take 20mg of Melatonin at night and don't have night hits (been doing that for years and years and it stopped the night hits almost completely.) BUT it took a while to get in my system and stop them... One time don't do it... ya gotta stick with it for several weeks before you say it doesn't work..

In fact most of the remedies we recommend you MUST stick with for a while before you pronounce them useless.

Most of us here have been right where you are -- feeling the world is against us and nobody understands.. (and we have the t-shirts - trust me). But the Vit D3 regimen has worked for me for almost two years (no hits at all) and I've enjoyed every minute of being pain free.

But I will go back to what everyone else is telling you about the narcs.. they only bring on rebounds, cause additions and do NOT stop the CH. A LOT of doctors don't realize this, but it's a fact. A can of Red Bull will do you more good than a hydrocodone.

One time my primary doctor thought he could help me by giving me a shot of some kind of strong narc and he gave it to me. I passed out, but the CH came thru. I was so drunk that I got out of bed and "crawled" to the bathroom to get my vasoconstrictor to stop the pain. But when I crawled back to bed I couldn't get back in it. A friend found me on the floor the next morning. He got really upset and went to the doctors office and brought him to my house to show him what he'd done. That was the last time the doc even thought about giving me any narcs for these things. After that he "listened" to me when I told him they didn't work. We found a "good" neuro shortly after I sobered up.

So I guess what I'm trying to say to you is that we've all been right where you are and have felt that nothing will work, but there is something that will work for you, but you have to give things a fair shot.

Do you have a good neuro? One that will listen to you and knows something about CH? If not -- well, that's the first step in getting help.

Get a NON-breather mask for the O2 and crank it up to 15-25 lpm and do it like Batch tells you (he had to yell at me several times till I did it right).

And you are NOT alone -- we're here and we DO know what you're going thru..  :-*

If Hydrocodine works in getting rid of your headaches,
maybe take the cluster quiz, the link is to your left on
this page.

Hoppy.

So I am starting to get a grip on my flavor of cluster headache. Headaches are still increasing to one or two a day.

1) I Had a local doctor try topomax and it had no effect on the headaches and terrible effects on my brain. I was constantly reaching for words and could not talk at a cocktail party.

2) Flew from VA to New England regional headache center and this was my first encounter with doctors who knew and understood cluster headaches. Got on varapamil and nasal zomax instead of nasal sumatriptan.

3) I maxed out my insurance to the zomax as it was about 1,000 a month to stop the headaches and my insurance company maxed me out at 3k. Found a compounder who mixed nasal decongestant with sumatriptan (flutic/sumatriptan) and I get a three month supply for 300 dollars. Cost problem solved.

4) found local ( an hour away) doctor at riverside pain and headache center in Williamsburg and this doctor said my prodrone or symptoms before the headache were way too strong (I has nasal dainage, chest heating and insane cravings for fruit) that he thought my headaches were more seizure like than normal cluster. He put me on Lamotrigine 200 mg twice a day. This has reduced the prodrone by 80 percent. Then .05 Clonazepam to reduce stress, another trigger, it's a light dose of Valium. As an aside it stop night time rumination actions, when you think of the same thing over and over again. And singular to reduce histamines, another trigger.

5) frequency  is still one or even three times a day, so this is still gradually increasing, but the lamtrigene is a drug enhancer, and now 3 Advil will often stop a beginning cluster. This was unheard of before. I was taking hydracodine before and it did nothing to stop the headache but it did sinificantly cut the pain.

6) still get beasts that cut through the Advil and I take a shot of the compounders sumatriptan and it goes away in about a half hour.

7) Anyway, no solution, no reductions in frequency, but a great lessening in pain as I can kill them almost always before they reach a level 3 or 4.

Weum,

I don't see any mention of O2 in there at all ??????????

Peter.

I feel compelled to chime in....

Weum, you have been given very good advice, but I wonder if you have even heard it.

I spent 14+ years in incredible agony as a chronic sufferer with 1-6 hits per day, everyday. Looking back, it is pitiful that I suffered so long and so deeply simply because I did not REALLY followup on the suggestions found here.

I just kept searching for some magic pharmaceutical concoction to cure me. It's truly sad to realize that the answers were right in front of me.......

Marc

Im not a doctor.. i am a Engineer of informatic system.
When i have a problem in my work.. i beguin to eliminate possible ORIGINS of the problem.. one by one.
I will give you one direction.. u decide to go or not.
Focus in all the facts that are not CH.

Do you drink ? Do you eat fruit or pre-processed food, or sugar, or medicaments with etanol alcohol, sorbitol etc ?
Some people can absorb alcohols.. some people can not and have an excess of acetaldehyde.
Do you have problems in your neck.. back.. nasal.. that can result of a oxygen lack to the brain ?
Some people wins headaches after go to physioterapist (massage) or wins APNEA..or have sinussitis.
Do you smoke ?
Smoke produces ethanol.
Do you have changes in your work-session ( you work night 1 week you work day 1 week )
Brain is a complex system.. need more oxygen at night, also when make diggestion, o in "siesta" time..

I´m going to give you some things to you.. you decide the incredible risk of do this.

- Center your mind in cure anything bad you have, except CH
- Eat, at least, during 2 weeks.. only : soja milk, white and blue fish, red vegetables, 4 eggs a week, garlics with everything.. bread with no pumps up artificial.. breasts of chicken only for meal.... erradicate sugar, eliminate yeast, fermented food, and any clase of sugar .. EAT LIKE A PRO.
-Try to smoke less.. if you smoke.. smoke 5-6 a day.. i know is very dificult to win.. but when 5-6 a day.. is good
-Not drink alcohol.. 0% include desserts whit alcohol
-Try L-cysteine read about it.. if its natural and no damage.. eat one pill a day.. BUT BEFORE ASK your doctor ( i know is natural, but i asked my doctor too )
-Go to doctor.. for anything you have bad in your body.. now you are going to ch .. yo usually go to any other symptont ??
- Try to sleep in a regular way.
- For ending.. listen to your doctor.

thanks for reading..

Weum,
There are lots of us here that are Pain Free (PF) thanks to Batch's D3 regimen,
When on the regimen, no need to max out insurance or dig deep in your pockets, it costs only a few cents/day and, for me and up to 80% of people that take it, it is the most efficient way to not feel any pain from CH. You can read about Batch's D3 regimen on the threads "123 days pain free and I think I know why" and "Anti Inflamatory vitamin D3 regimen and survey".
The regimen does not involve taking drugs with terrible side effects and has stacks of benefits on top of getting rid of the terrible pains we all know too well.
Finding this site and coming accross Batch and the regimen are the best thing that have happened for my health
+ the suport and knowledge here from other sufferers is second to none.
You do not have to take all the drugs that can be prescribed by doctors or neuro's when taking the D3 regimen, i do not have medical insurance.
The replies to your posts posted above are invaluable.
All the best

I also recomend d3 vitamin regimen. i have not started yet.. but because i think.. there is a relationship betwenn all..

prostagladins are the substance that cause inflamation.. i attack direct the cause of my prostagladins attack... sugars.. sugars alcohols.. and metaldehyde.. and candida..
The focus is to know.. what cause prostagladins "attack" on you.. !!we are sooo diferent !!

im trying "lexatin" to regulate my sleep regime
Im on the way of the "eat like a pro" regime.. only eating green few vegetables (asparagus , broccoli , artichokes)  white fish , frigate tuna ,  no sugar , no fruit , only lemons and helped him with a natural supplement l- cysteine.
Mi focus is to kill candida in natural way, and.. in other way.. not introducing too much acetaldehyde in my body.
i try to smoke only 4-5 a day.. but its difficult.

I am chronic for 10 years.. only 4 days without crisis is my record.
at this moment.. im 8 days free of Cluster headache.

I dont know if what i wrote is stupid.. my english is very bad.. i dont know if i use the correct words..
I think too all the post here, got mutch mutch information for you..

Thanks for this great forum.. its begining to change my entire life.

Hey MDB,

Your English is fine... Talk with your PCP about the lab test of your 25(OH)D serum concentration then get started on the anti-inflammatory regimen as soon as possible. 

Check your pm InBox.  I've sent you some additional information.

Take care and please keep us posted.

V/R, Batch

Hi MDB,
here is the list you were asking about
it contains links to biovea spain for the kirkland mature multi and the magnesium, as per Batch' s D3 regimen.

Hoppy' s info about buying from biovea was great, I'll use it myself from now on.

From Biovea

Kirkland mature multi - 1/day

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Magnesium Malate - 3/day

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From iherb.com

Vitamin D3 - 1/day or more when taking loading dose

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Life extension Super k - 1/day

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Fish oil - 2/day

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When ordering from iherb, it is important to choose the postage option called: Airmail premium, or another one called Airmail (slower)
If you choose the other options it is a lot more likely that the packet will be intercepted by customs and you would then end up paying extra in import taxes, and we all know how much we like paying more taxes hey!  ;)

If you'd like more info as how to get your supplements as cheap as possible, just ask.

As regards how to take the regimen and doing a loading schedule, you're in good hands with Batch, the master himself.

All the best

Thierry wrote, When ordering from iherb, it is important to choose the postage option called: Airmail premium, or another one called Airmail (slower)
If you choose the other options it is a lot more likely that the packet will be intercepted by customs and you would then end up paying extra in import taxes, and we all know how much we like paying more taxes hey!

Yes! My parcel of vitamins was intercepted by customs once! When I ordered from iherb which delayed delivery, but their was no extra cost to me, just the inconvenience of it all. I order all my vitamins from Biovea  because they have offices located in most countries around the world including here down under therefor no need to come direct from the US and have to go through customs.

Cheers Hoppy

Hey Hoppy, Indeed I discovered Biovea thanks to your post and will be ordering some of my supplements from there from now on.
However, I couldn't find any high potency D3 and super k on Biovea and the fish oil is a good bit more expensive than on iherb so i'll now be ordering from both Biovea and iherb as per above post

All the best

Hi thierry,
I get the Biovea vitamin D 5000iu because that's all I take/day, so I wasn't a-where you couldn't get a higher potency, sorry to mislead you, as for Life Extension  Super K 200mcg, I also couldn't find that either so I bought mine direct from Life Extension, but then when I logged in on here the next day, Biovea was advertising Life Extension Super K 100mcg on my sidebar  [smiley=lolk.gif]

Hoppy

ok Hoppy,
just checked biovea ireland, unfortunately d3 in 5000iu and super K are not available there.
There doesn't seem to be any Life Extension products on the irish biovea.

All the best

Interesting.. there is a biovea site in spain.. with free of charge for send .. if purchase is over 25$

You can confirm.. that all the products in the d3 regime al available from biovea ??
I ask this.. because sometimes.. the name of the product is more important than the active element of the product.
Thanks in advance

Hi MDB,
It seems that not all the ingredients of the regimen are available from Biovea, check the posts on 1st page of this thread and find my post with the links to the different components of the  regimen.
Also i'm not sure that there is a spanish biovea site, or an irish biovea site, it's more likely that there is a european one.

all the best

MDB, I get all my regimen from Biovea except for Life Extension Super K which I get online from the Life Extension website. If you are having trouble finding a Biovea website in Europe then go to their US site like I did, until I found out they were here in Australia  :)

Good Luck Hoppy