Hi. I'm new to the site.  I'm 39 with a wife and 2 wonderful daughters. I was diagnosed in 06 with CH after ER trips and several doctor visits ,until  I was refered to a neuro. During this messed up voyage, the DR's decided that I needed an MRI and if the CH crap was not bad enough they found a tumor in the medial temproal lobe on the Right side. Funny thing is that the CH always present themselves on the Left. This means that the tumor was found by fluke and had nothing to do with the CH....Oh Joy..... Now the headaches took the back burner (if you can imagine that) and over the next several months I ended up at Lyola in Il,University of Madison WI and Mayo in Mn.
Long story short I decided against removal and instead have regularly sched MRI and neuro exams because it is either benign or not and the only way to find out is to remove the top of your skull and take it out along with other surrounding tissue.
Anyway....still dealing with the CH. Imatrix,pills, seem to always work but it is waiting for it to kick in that sucks. Especially for the night attacks because I dont wake up until they are already at the 8-9 on the kip. I cycle about 2 times a year, Spring and Fall and since the begining I guess I have been lucky because they were only once a day.The times would change... a week or so at night or a week or so in the late afternoon. The worst was when I quit smoking and had 5 seperate attacks in one day. I started back up and they then went back to normal.....
I'm really having issues lately which has caused me to research this much more. My cycles have changed to twice a day, late afternoon and again in the middle of the night. The day time ones are much worse than before, ramping up from 0 to 8-9 in less than 2 minutes. I have an appt with the neuro soon (regular quarterly w/mri) but I am calling tomorrow to see him asap. I am concerned about the change in cycles and change in the speed of ramp up. Is this common??? The oral abortive is taking waaaaaaay to long. Im printing out the O2 info to take to him. Also wondering about nasal form of imitrix vs the injectable. It would be much easier to do the nose spray at work rather than the injection.....the O2 tank is not an option. any expirence out there with this?  Im hoping to get the 02 right after seeing him and also changing type of imatrix. I hope he is up on this, he's been good so far. I have read alot of good advice but nothing is working so far other than the slow oral form of imatrix.... I'm really hoping the O2 is the answer for the night and a change in administration of imatrix will help the day ones and really just want some pf time. Im just getting worn down this time and really tired.

It is hard to imagine CH taking the back burner Jasper, you've had way more than your share of head curses. :(

Yep imitrex pills are a slowwww acting joke alright. The nasal works well for many of us including myself. The advantages to the injectible include the fact that you can stretch your doses as outlined in the imitrex tip to the left and avoid running out - or overdosing. Maybe not as much of an issue for you if you don't start getting rebounds and keep routinely having 2 attacks per day.

I could see you using both forms - nasal if necessary at work, and fastest acting injectible as a backup for the O2 for the night hits. It does tend to be important to get on the O2 very close to onset of an attack.

No offense to your doc who's been good so far, but prescribing imitrex pills for CH is a sign of a doc who is not as informed as a headache specialist would be - getting to an actual headache specialist would certainly be ideal.

There are a bunch of non prescription approaches that have really helped some CH'ers around here. A brief sampling:

The high dose vitamin D3 regimen START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Melatonin for prevention of night hits (between 9 -21 mg before bed)

The clusterbusters approach (which now includes mild - and legal - Rivea Corymbosa seeds). Here's a Newsweek article on the subject. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It's good to see that you're researching this much more - I think it's very important for you to know that it is here at this site and message board (and clusterbusters.com) that the rubber meets the road, and this is where your best prospects are for finding real, potentially very powerful ways to gain maximum relief.

Changes in cycles are so common BTW that changes are practically the norm.  :(

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
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Given the complexity of your situation I'd suggest that you use only Cluster treatments which are recognized/accepted by your docs--no home trials.

I'd like to see you working with a headache specialist. It's amazing how limited/poor is the training of many neurologists in headache. (And this is really a complex
area of medicine.)
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You don't mention being on a standard med to prevent/reduce Cluster attacks. See the PDF file for list and evaluation of common  Clusters meds.

This protocol is for the most widely used and understood preventive.

Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.
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Re. Imitrex. Pill form is too slow; nasal mid-way to the injection re. speed and effectiveness but requires learning good technique in using.
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O2  is effective but not quite at as a high a rate as Imitrex and there are the mechanical issues of using the gear.
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If you want to talk to your doc about an alternative abortive, the following has good rep. here and is becoming more widely accepted by M.D.s.

Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

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Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Personally, I love it for speed, cost, convenience.
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Re. changes in your experience (pain, location, etc.): very common for months, even years, before a stable pattern is established. But all the more reason to work with both the doc for your tumor and a headache specialist.
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For your learning:




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]

---

Thanks for the info both of you have given. I have done quite a bit of research but always on the lookout for new stuff...thats why I'm here. Well that and also because nobody really seems to truly understand. It is hard unless you have expirenced it first hand.
As I will explain later I am really limited to what I can take otc, or script. This is why the O2 seems so appealing.
BTW, I live in southern Wisconsin right on the WI/Il state line, not too far from Madison.
I had not gotten into more detail of the medical side because over the course of the past 5 years it seems to blend and confuse doctors and myself, so bear with me.
My CH were diagnosed immediately 5 years ago. They were always considered a seperate issue from the tumor but still intertwined enough to scare everyone.
I suffered with ch for almost 3 months before going in, and the one that finally broke me was when I finally went to the ER after doing the dance for 4 hours. This set off the chain of events that lead to the MRI and all the other issues. They treated each issue seperately but as I said the CH seemed to be on the back burner because of the tumor.
I was on the verapramil right off the bat and found no difference whatsoever, other than lowering my blood pressure too much and making me too lethargic, even after playing with the dosing.  I have been on the Imatrix oral 100 mg since the begining and it has always worked.
It is slow acting as I look back at it now, but it was a godsend then. After suffering with them for so long with out meds at all, I could not believe I could be pf after 30 min or so.
Until last fall it had always been a 50/50 chance of the tumor being maglignant. It has always been felt to be an Astrocytoma (malignant) or a DNET (Benign, being there since birth) The defining line between the 2 was the presence of seizures. After 4 other EEG's they finally caught proof. This has bumped up the chances of it being benign to about 90%.
I bet I was the only one in the history of the neuro dept to cheer for being diagnosed with epilepsy.
Yet again the diagnosis of the CH and the tumor are so intertwined for me it was the increase of the headaches at the time (when I quit smoking) that again started the tests that lead to the positive EEG test.
Since then I am now on 2 different epilepsy meds and I don't seem to tolerate much more other than the imatrix and still the combination of them, dealing with the 30 min of pain and sleep interuption of the night attacks when cycling is really taking its toll this time. It is the first full cycle since the intro of the anti epilectic meds.
I talked with the neuro today and got a maxxol disolveable prescribed right away. I also have my appt bumped up to next week. I am not going to be able to get the O2 until I see him and discuss this.
I do have an immediate issue though...... I am not supposed to take the maxxol until 24 hours after the last dose of imatrix.... I had to dose on the oral today before getting the script. I am due for an attack tonight around 12am or so. If I want to use the new script I am going to have to tough out tonights attack...... this really sucks..... the lesser of 2 evils......when do I want to choose to have the dance.....I would have to choose the night one so that my daughters are not seeing a full blown episode. It has been so long for a full episode for me I am really dreading tonight. The last full one I had was the one that sent me to the ER and lasted 4 hours.
So.....I have tried to explain better but still left alot out because look at how long this is already and how they blend together.
By the way...did add where Im from but forgot to do it until after my first post. I think its right.

I don't believe that any of us should be adivsing you on meds/dosing, etc. Put your question to the neurologist. The interaction potentials, given you neurological picture, should be driving you moves right now.

I agree with what Bob wrote, but I am curious about this:


Quote:

the O2 tank is not an option

Why is the tank not an option?  They come in different sizes, are easily transported, and if necessary, can remain in your car. You obviously believe (I think rightly) that O2 is appropriate for you at home, why not at work?  It may take some education but I can hardly see employers telling workers they cannot have their epipen, or antiseizure meds, or their cane and crutches. Just some thoughts. lance

I dont believe the tank is an option due to the type of work environment, not who I work for.  I do manintenance for a not for profit mental health residental program. We have 15 different sites and serve about 120 individuas. I do everything from roofing, siding,vehicle work, painting-inside as well as outside, plumbing, electrical, carpentry, plowing , and basicly if it breaks I fix it. I might be able to keep it in the company truck, but depending on where I am and what I am doing at the time (from what I have read),Im not sure I will get to it in time to interrupt the attack. Sometimes it may take me 15-20 minutes to get to the truck, sometimes it's right there. Im pretty sure that I have read that catching it early with the o2 is the key.... I still want a quicker abortive incase I could not get to the vehicle...... Thankfully I have only had a hand full of episodes at work. Work has been more than supportive throughout everything. I dont see them putting up too much of a stink about it other than making sure that it is secure from the clients and open flames. This is more than a reasonable accomodation and the truck would be the logical option. I may want to possibly consider a combination of the 02 when avalible and fast abortive for when the O2 is not close enough. I just was not really considering the option due to the logistics. It just seems easier to carry a couple of meds in a pill case. I am probably overthinking the situation. My wife tries to remind me to keep it simple. Hell, I am all for something that works that is not another script or has more side effects. I had not heard of the o2 treatment until hiting the cluster sites.... Again I know my limitations with meds and I do discuss with my neuro before thinking of trying anything, but any suggestions from others like yourselves who have way more expierence in this area is more than welcome so I can advocate for myself. Knowledge is power. Prescribing medications is an artform as well as a science and what works for some wont work for all but I need to know about it first to even ask about it.
I just want something that is minimally invasive, works quickly and does not mess with my head so I can have more pf time to enjoy my family and job. I dont think that is too much to ask for and just really want advice. Thanks to all that replied. It means alot.

Oxygen would still be something very useful for you to have along with your other options as a way to abort a CH. Whilst there are times at work when it won't be the right option there should be plenty of other times when it will.

Plus it is likely (but confirm with your doctors) that it will have no interactions with your other medication.

Like you I was originally skeptical about using oxygen, until I tried it. Then seeing how it could kill off a CH in minutes as opposed to an hour or so of torture resulted in tears of joy (it seems to be a common reaction).

So work on getting as many possible tools in your battle against the CHs so you can maximise your time between them.

Ok, I have been reading more on the site and I keep seeing things refering to rebound headaches. Is this specific to certain abortives or any of the vascular constrictors. Im wondering because I am going on my 3rd week and this is one of the longest cycles so far. I am also wondering because before this (except when I quit smoking) that I have had 2 attacks every day in the cycle, this means that I am using double the ususal meds. Im still on the oral imatrix. Fricking insurance screwed up the maxxol until monday unless I pay out of pocket...nice that they did not tell me this until after I had to suffer through the middle of the night attack with nothing in prep to get it....I was livid to say the least. So...I had not heard of these rebound headaches and could the increase in use of the imatrix be causing the cycle to last longer?, or just attribute it to the change of the cycle in general??? Hell for all I know the other meds could be messing with it too. (I already have quite the long list of topics to discuss with my neuro) I am just curious about the rebound effect and where can I get more info?
The devil just keeps coming over at the same times every day and letting himself in like he owns the place and I am tired of it.

Hi Jasper,

I'm afraid rebounds are a commonly suspected side effect of the triptan drugs - lots of folks have reported this here about imitrex.

On the other hand - it is also extremely common for CH behavior to morph for no apparent reason, just when you have it's pattern all figured out. So common, it is practically the norm.

My perspective on this is that my CH became worse, more frequent, and the episodes began to last longer before imitrex was even on the  market, so I can't blame it. I might blame prednisone though!  :D

I do feel imitrex is a double edged sword. I've used it along with O2 and preventives with tremendous success, but I don't question that there's some risk involved.

The question of rebound with Imitrex triggers some strong feelings here but there is little science to give solid guidance. (See last line of this abstract....)
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Headache. 2000 Jan;40(1):41-4.
Alteration in nature of cluster headache during subcutaneous administration of sumatriptan.

Hering-Hanit R.

Headache Unit, Department of Neurology, Meir General Hospital, Kfar Sava, and the Sackler Faculty of Medicine, Tel Aviv University, Israel.

OBJECTIVES: To document the relationship between the 5-HT receptor agonist sumatriptan and a change in the nature of cluster headache IN FOUR CASES. To relate the findings to the literature on the use of sumatriptan in both cluster headache and migraine. BACKGROUND: Studies of the efficacy and adverse effects of long-term treatment with sumatriptan in cluster headache are limited and report conflicting findings. METHODS: Four cases are described. RESULTS: All four patients developed a marked increase in the frequency of attacks 3 to 4 weeks after initiating treatment with the drug for the first time. Three patients also developed a change in headache character, and 2 experienced prolongation of the cluster headache period. WITHDRAWAL OF THE DRUG REDUCED THE FREQUENCY OF HEADACHES AND ELIMINATED THE NEWLY DEVELOPED TYPE OF HEADACHE. CONCLUSIONS: Determination of the effects of long-term use of sumatriptan will result in more precise guidelines for the frequency and duration of treatment with this otherwise extremely beneficial drug.

Publication Types:
Case Reports

PMID: 10759902 [PubMed]

{Note: in 1/11, no later citations along these lines in the last 10-yrs suggesting this not a significant issue, especially in light of the quick change which withdraw of the med induces.}
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Change to Maxalt is a worthy experiment--and that, unfortunately, is the route we live with--trials, trials.
==
Any consideration to a trials of Zyprexa (abstract I posted.)?
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Have you ever asked you neuro whether he has considered the possibility that your headaches are a mask for another disorder? There is emerging literature about "cluster-LIKE" (term in the liteature) headaches: appear as normal clusters but are, in reality, a different disorder. (Following is not comprehensive but illustrates the idea. Might print out for the doc.)

Link to: cluster-LIKE headache.

Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

hi my names laura im new to here i have a 2 years old daughter im 23 and was first diagnosed with custer migraines at 17 due to my mum taken me to my local a/e due to me screaming in agony banging my head off the wall due to the pain
i just want to thank you all for starting up this page to help n support each other

Hi Laura,

Are you from the UK? (guessing due to the spelling of "mum", although I've heard Canadians pronounce it that way too).

Good to have you here and stick around! Many of us have been significantly helped by info and advice found here, and I hope that is to be your fate also.  8-)

It would be good to hear about what treatments and stuff you've tried so far, and your results.

- Jeebs