I have been suffering from episodic CH for about 5 years now. I have tried 02, imitrex, maxalt, and lithium. I have not responded to any of these. This episode that I am gonig through now seems different. I ususally have 2-3 clusters a day and maybe 30 minutes tops. This episode I have been going 4-5 times a day and at least one lasting over an hour. They wake me in the middle of the night at least twice a night. And the pain has been worst then ever. Any ideas on what else I can try that may be helpful? Has anyone else had changes like longer durations of the headache? I litterally thought about breaking my finger the other day just to try to take the pain off my head. I really need something to get me out of this cycle I am in.

Are you seeing a headache specialist? Using any preentive meds?

Working with knowledge and experience is crucial.

Hey there Jackf,

Wondering if you've tried the "new improved" Hi LPM/non-rebreather approach for administering O2 as outlined here:?

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I'm hoping you haven't, as this would be something else to try.

And with the imitrex, I suppose you've been using the most effective injection form?

So after exhausting those options, if it was me, I'd turn to mother nature and get some Rivea Corymbosa seeds faster than pronto.

These have been used for centuries by indigenous peoples, and have shown remarkable effectiveness for CH for some people, often with zero side effects (they are a potential hallucinogen, but are taken in a sub hallucinogenic dose).

There's a lot more info about hallucinogens and CH (which are now being taken very seriously for CH by prominent researchers, Harvard medical for instance), but might as well see whether you have an interest in them before blabbing on any further.  8-)

In any case, let's hold out hope that there is still something that'll enable to you to treat this CH beast to a knockout punch or two.  :)

I have had the duration of CH hits change BTW, with some very unwelcome intense hits lasting several hours. My feeling with those was that they had been "pent up", suppressed by drugs, and once breaking through they were kinda making up for lost time.  :o

I saw my neurologist again this morning after I posted this, and he is going to try Verapamil as a preventative and midrin at the onset of a CH. My CH has always been painful probably a K-6 to a K-7, but this episode has been giving me regular K-9 borderline K-10. Hopefully the Verapamil will get me out of the cycle...It is something new at least. Has anyone ever heard of using this Midrin? I may call to my neuro doc and ask about the O2 with a non rebreather mask. I used my O2 with the nostril plugs.

Hi Jackh,
Midrin is actually 3 compounds.  you've got some Acetaminophen which should dull the pain; Dichloralphenazone which is sort of a 'body relaxer' and Isometheptene which is used to shrink the dilated blood vessels of the head.  All standard anti-migraine stuff!
The only thing I know is that if you're on it a while and then your doctor wants you to come off it, it should be a slow reduction of dose as you may, possibly get the shakes - withdrawal stuff.  It's not like a Morphine addiction or anything like that so don't worry, give it a go!
The Verapamil is a standard abortive.  My own consultant has tried it with me. She tried an increasing dose (up to 960mg per day, way above that used in cardiac situations), by using a low dose for two weeks, then ECG and as it was ok I went to 240mg a day for two weeks, another ECG and so on.
For me it didn't work.  But like a lot of CCH people, we're all different and what works for you might not work for me and vice versa. 
I've also noticed increased duration of spikes from the shadows and maybe it's just how we are sometimes. Cluster, either Episodic or Chronic seems to manifest in many different subtle symptoms for each of us in addition to standard 'base line' symptoms, like stuffy nose, droopy eyelid, pain on one side, incredible levels of pain etc.
I guess the bottom line is good luck, give it a try and maybe you'll be successful.  Never give in or give up, there's always tomorrow, which may be a better day.

Midrin was the first abortive the mil docs tried on me. Take 2, one per hour up to a total of 5 pills per 24 hours.

My CH usually last 3-4 hours untreated. Midrin almost always worked for me within 2-4 hours.

I wouldn't have much hope with a pill that takes 30-45 minutes to work to abort a headache that lasts 30-60 minutes.

High flow O2 (25LPM for me) or Imitrex Statdose can abort in 5 minutes.

I have some 12 year old Midrin you can have.  ;)

Hey, I haven't been on for awhile and probably do to remission.  I will not let that happen again, as I shouldn't just use this site or you guys, when I get my cluster episodes.  Because this is an awesome place to be for us who suffer this hell.    That being said, I have had these clusters for 17 yrs. and my last episode over a year ago, I finally had a doc prescribe oxygen.  Wow, what an amazing thing.  I think you need to get the nonrebreather mask and lpm regulator that everyone talks about.  You said you used the nasal tubes?  That is probably why you didn't get any relief.  It was a godsend for me. 

jack when you tried o2 how many LPMs did your regulator go up to? and how did you use it?

Like others have said, your previous O2 approach was basically useless. You MUST use at least 15lpm and a good nonrebreather mask for it to work. Do it right and it works great!! It will make all the difference in your life!

I am going to speak with my doctor again this week, and maybe ask him if he can prescribe the oxygen. My wife is a nurse and she I used the oxygen before I ever knew her, and she said with the nostril tubes I was getting maybe 30% O2. There is a place on here to buy the mask I saw. Should any O2 tank come with adjustable LPM's? I have seen O2 has worked for most people, so I am excited to try again. I will let you all know of the result once I try with the non rebreather mask.

   By all means, go for the newer non-rebreather mask (the one with the green 3-litre bag)

  If you were using the nasal cannula, you probably had an 8 lpm regulator . . . NOT enough.  You need at least a 15 lpm regulator.  If your insurance won't cover it, you can find on ebay for about $30 (most likely much cheaper than your local med supply house)

  If used at the first sign of attack, I can abort most attacks within minutes . . . can't take triptans like Imitrex (some artery blockage and high cholesterol), so 02 is my only abortive.  Last couple of weeks he's been making regular daily/nightly visits, more severe than usual . . . have gone through many E tanks . . .  but haven't had to dance for most of them

  Keep reading, keep asking.

    Be Safe,  PFDANs

       Richard

Regulators can be purchased on e-bay. Masks can be purchased here at the ch.com store (on the left in YELLOW). The right lpm (at least 15 and better 25) with the RIGHT mask works wonders for most of us.

Also you might try a Red Bull (or another energy drink with at least 1000 mg of taurine in it) at the onset of CH. Chug it - it works for some of us.

I use melatonin at night (12-15mg) to help get thru the night hits. Very seldom get hit at night.

My "miracle" drug is topamax, but I take the whole dose at night (100mg) to avoid the side effects. Been taking it for 10+ years (I'm chronic) without side effects except a little memory loss (but I'm old and that's goes with the territory).

Like someone said, it's all trial and error - ya just gotta find what's right for YOU.

Let us know how you're coming along...

Hugs BD :-*