I've been dealing with clusters for years now and have always had the same pattern.  Once a year for a few weeks I would get a CH once a day like clockwork.  I went two years though with no attacks, then a few weeks ago they started again.  At first it was the same old pattern, but now instead of going away they have ramped up to 3 times a day.  I'm so tired of wondering if I have enough Imitrex to make it to then end of the cycle, or now I wonder if it will even come.  The doc just gave me a script for narco, but I fear that will just make things worse in the long run.  There has got to be more to life then this.

Let's get off to a good grounding:

Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you

You can add your location by editing your profile. CP Member --> profile
BUT, Please!, don't post your messages at this location. They won't get the attention you want: use the appropriate sections which follow.
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UNLESS there is some compelling medical reason, the routine use of narcotics/pain meds for Cluster suggests a doc who is lacking in basic knowledge/skills re. Cluster.

If you wish to make a change, our experience strongly favors using a headache specialist.

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.


2. 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.

3.  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.

4. 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.

5. 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.

6. 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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Stanrdard practice calls for an abortive to kill attacks along with a preventive med to reduce intensity/frequency of attacks.

See the PDF file, below for the latest evaluaion of commonlyl used meds. (Often useful to print this one out and use as a discussion tool with any doc you're seeing.)

If you have not had the opportunity to do some basic learning about Cluster, explore the buttons, left, starting with the OUCH site. Also,
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Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
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Overall, the picture for successful treatment of Cluster has improved many fold over compared to 30+ years ago. Having a grounded doc plus your own knowledge are major routes to success.

Stay in touch!

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I've been working with a neurologist that I'm comfortable with.  She just happened to be out of town when this cycle went double time on me.  I think the norco 5/325 is just stop gap to get me to Monday when she is back in town.  The problem I called her with was that I'm up against my limit of three injections a day and I'm terrified of aditional episodes.  That and UHC only covers 8 injections a month and I'm pretty low on a supply.  When I was in her office a couple weeks ago she suggested O2, but I declined because the Imitrex seemed so effective.  I'm sure she will put me on it this time around.

BTW - I orginally posted just to say hey.  I forgot to say I'm in Houston, 43 male.  I'm just having one of those Why-Me days.

It really is nice to see other talking about this and to know
I'm not alone.

I'll update my profile ASAP...;)

get the O2.  It will help tremendously

I sure hope they back off. No not alone in the least. It seems a relentless cycle, however dont be discouraged, relief is out there and we are here. Sounds like you are proceeding well...another vote for the 02. Anxiety and fatigue are both triggers for me. Hope you fare better in that regard....
all the best
the bb

Hiya!

I'm sorry to hear you are in cycle ... me too ...

Please don't just stop to say Hi ... stay awhile ... read!  I have learned SO MUCH from less than a week being here! 

Do your homework ... you'll find some really great people on here who are here to share their knowlege with us ... and we are NOT alone! 

So I was reading up on the vitimines...went out and got some D3, Omega 3 Fish Oil, and melatomin.  Took a handful of pills.  We'll see what happens.  While at the store I remembered I have a friend that deals in gas (helium, c02 etc.)  He is dropping off a couple tanks and a mask for me tomorrow.  I'm exceited to give it a try.  The numbers and amount of drugs I have been taking this last week can't be good.  I'll try to remember to post findings.  I have 1-2 hours before the next attack and I can feel it brewing. 

God bless you all! 

Good luck with that! I pray the O2 does for you what it has done for me...saved my life. Please read the link at the left and try to follow the directions. O2 can work OK and it can be great. A lot depends on the equipment, flow rate and how you use it. If you have any questions, just ask. Blessings. lance

Had a pretty rough night.  Not sure if the norco helped at all.  Out of fear, I ended up taking an old zomig as things were coming on.  Pain only reached a 4 before petering off.  Maybe the norco helped some, but probably not much.  The side effects far outway whatever help it brought.  I did not sleep a wink and was up all night itching.

I have my O2 tank sitting here with me now.  I've read through the O2 section and I think I'm good to go in that respect.  The regulator I have goes to 15 liters per minute, so I hope that is enough.

A few pointers or guidlines I did not find would be helpful.  At what point do I start the O2 and when do I give up and take a shot.  I'm assuming once I'm sure the attack is starting, then slap the mask on and crank it up.  If after 10 minutes there is no relief, do I change to the meds?  10 minutes into an attack can get pretty hairy for me - with no meds that can easily be a 6.  I've really never gone longer then that so I do not know exactly how bad they can get.

Start the O2 AS SOON as you feel a HA coming.  Keep on it until until you feel the HA is gone and then stay on it for a few more minutes.  Some stay on it for the same amount of time that it takes to abort the HA.  It's important to get on the O2 as soon as possible. 10 to 15 minutes will probably tell you if it is working or not.  Don't wait until you are sure, get on the O2 ASAP even if you are not sure it's a CH.

Once you are on the O2 make sure you are expanding your lungs to full capacity.  Expand your chest first then your belly.  Then exhale by collapsing your belly then your chest.  This way will make sure you are getting as much O2 as possible.

I hope this helps and wishing you the best.

John

Never mix triptans. If you take zomig wait 24 hours at least before injecting sumatritan. Indiana John got your 02 question. Breathing technique is variable and you will find what works best for you. Just get as much pure 02 in you as fast as you can. Your head will spin and your ears will ring, you will want to yawn, then it's taking effect. By then you should feel the pain begin to go away. If it doesn't work in 15 to 20 min...then it's time for a bigger hammer.Here's the poop right from the source.START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Happy Huffin ;)

Just tried out the O2...but I cannot tell if I was actually starting or not.  From your description, I probably need to go back on it...no yawning yet, but I feel a bit better.  Let me give it another 10 minutes.  My sinues and mouth are pretty dry...any tips for that?

I count my breaths till the pain is gone. it seeems somewhere around 30-40 breaths of the pure 02 it tends to hold and not get worse, then i start my reverse countdown. about another 20 and its gone. and then i finsh out till i reach zero and that will get me back to sleep without rebounds. all in all the pain is gone in about 5-8 mins and my total time on the 02 rounds out at 15-20 mins.

Throw hard...
Coach Bill

quickest best is have a drink handy to sip. I hooked a bubbler to mine, however there is maintenance involved then. We are all slightly different so reactions to therapy may vary. Best way to tell is pain level decrease. 02 usually will work fairly quickly unless you wait too long to start.
Mix a little caffiene in there and you have a non pharmacutical abortive...hooorah. some reading for you.START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Hi Coach!
the bb

So far so good.  I'm pretty tired.  My nose stopped running, still a little HA, but nothing more then I have been dealing with all day.  A couple motrin would probably kill it if I wanted.  Still a bit of tightness in my neck so I'm not sure where I am at.  I have another 6 hours before it will be 24 hours since the zomig.  I'll keep trying the O2 and only go for the Imitrex later if absolutly needed.  I'm a little scared to go to sleep though, that is almost always a sure way to get these things into gear.  I'm exhasted though after last nights head games.

Thanks for the help guys.  For some reason the idea of trying the O2 scared me a bit until I read about all you doing it.

So what is the issue with mixing triptans?  I was not warned of that one.  I did take that first zomig 8 hours after an Imitrex dose.  That has been pretty common for me in the past when I get low on Imitrex.  You know how it is when the pain gets up over a 6-7 though...rational thought pretty much goes out the window.  At those levels, I'm not sure I would be able to stop myself from mixing if I did not have a choice.

Different triptans counterindicate each other. You can die. When the CH returns slam some caffiene, hit the 02 till the pain goes away, stay on the 02 for another five minutes then go to bed with your bottle handy. You may just get to sleep. Relax, you have abortives.
Dont fool around you have to really put out on the breathing. 15lpm minimum all of it. Sometimes you can knock out a shadow with less....sometimes usually daytime.
Rooting for you Mark.
the bb
Edit: dont fall asleep with that mask on, you will have a sore throat.

Mark,

Man i remember those day's. and i feel for ya.

did u try the vitamen D3? That with the magnesium works pretty good for me.

Also u may want to look at this site, It gave me my life back quick. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

WHAT UP BB...... Just lovein mt PF time
Coach Bill

wrote on Feb 2^nd, 2012 at 9:56pm:

Edit: dont fall asleep with that mask on, you will have a sore throat.

With a non-rebreather mask, if you fall asleep with the mask fastened to your face (i.e. not held on by hand) then if the tank runs out of oxygen then you can suffocate.

The O2 definately works!  It finally hit me and woke me up at 1:30am.  The O2 knocked it back in no time and I was back asleep to be woken up again at 2:30.  Same thing, the O2 knocked it back and I was back asleep in no time.  Then again at 3:30am.  This time the O2 was not working the same and after a bit I gave myself an Imitrex shot.  But I feel rested and good today. 

The first two times I used it, it took the HA back to what I think you all are calling a shadow.  Not gone, but pretty much pain free.  I could still feel it lurking there.  The thrid time I may not have been patient enough.  It only made it to a 2 before I used the shot.  I did get up in the middle of it and went into the kitchen and drank 1/2 a red bull.  That s**t is nasty!  Maybe it would be better cold.  Then the dogs started stiring, and if I did not quiet down soon, I was going to be up for the night.  So I gave myself the shot.

Laying down definatly makes things worse for me.  I have little doubt that during the day I'll have great success with the O2.  Nightime use may take some more practice.

I started with the D3 (I'm taking 5000 iu several times a day) and the Omega 3 Fish Oil.  I also picked up the melatonin and took 20mg before bed.  Introducing so many things at one time though will make it harder to pinpoint what is really working.  Whatever it is, I have not felt this good in weeks.

Thanks everyone!
Mark

Yayy! Now that you know the O2 is going to work, start searching for a higher flow regulator. I found great relief at 15lpm, but it wasn't until I went up 25lpm+ that I found O2 to be its most effective. During the day, I slam a Monster energy drink (taurine + caffeine) and I often find it is enough, with the O2, to beat back the beast for several hours giving much wanted relief. You're on a good track, stay with it. BTW, like you, I abort REM hits 3 times, but on the 3rd go round, take either imitrex or migranal so I can be assured of sleeping the rest of the night. Had to do that again last night. Beats the unbeatable beast from pre-O2 days. Blessings. lance

That's great news Mark. I drink a Red Bull while I abort with oxygen. It seems to speed the abort for me and kicks the come backer attack farther down the road. Although for the night time hits, that does make it a little tough to get back to sleep. Some have found sleeping in a more upright position results in less nocturnal attacks. Didn't work for me but certainly worth a shot.

And I'll Repeat the suffocation warning!!

When using a Non Rebreather Mask, especially at night, cut off the strap. Then if you fall asleep while using it, and the tank runs dry, the mask will fall away and you don't risk suffocating yourself.

Joe

warning heeded...strap is off!   ::)

I just got done with another redbull + O2 treatment.  HA gone!  much better then last night.  I noticed I was getting a lot of (room) air seeping in, plus my exhale was going into the bag.  Cheap non-rebreather I guess.  So I was holding it tight during inhale and removing it while I exhaled and plugging the hole so the bag would reinflate.  I'll have to get a better regulator and mask, but doing it this way the headache had broke withing two minutes.  And this time it actually seems to be gone, not just sitting in the background.  My eyes feel funny though (like they are cold or dry) and I'm tired.  Scared to take a nap though.

That's great news, I LOVE 02 success stories. here's a link to order the optimask kit. I use a demand valve but people who use the flow valves swear this is the cadillac of masks and less then $30.

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

Joe

Happy dance , Happy dance  :D [smiley=applause.gif] [smiley=bigguns.gif] [smiley=bigguns.gif] [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=bunnybash.gif] [smiley=headbanger.gif] [smiley=headbanger.gif]
Ya baby Ya!
the bb 8-)

Mark!  I'm so happy for you! 

I can't wait until my O2 tank gets approved so I can have a story like yours! 

I hope you get some real rest soon and you can get back to feeling great every day! 

Thanks everyone for the support!!!  I'm calling this cycle done.  I'm getting a few small/shadows daily, but nothing I need to medicate.  I'm sleeping through the nights again and generally feel good.  Even lost about 10 pounds from lack of interst in food.  Thanks again - you all are awesome!

This site has just made one man's life better. Thanks to all who helped him. You guys rock.

Just in case you need it here's a good way to check your mask's seal.

With the mask hooked up and the O2 turned off, inhale until the bag is flat. If you have a good seal no outside air will be coming in. Makes it easy to identfy leaks.

Welcome to CH.com,   Don