Hi everybody,
I'm new here and I just found this site while browsing the internet for ANY SHRED OF HOPE that this @%$#@ condition will release its hold on me.
I hate to get on here and depress anybody or whine about how bad my life is but I don't think I can take this anymore.  I'm not suicidal, I guess I'm hoping you guys will understand that - I'm just honestly wondering how to keep living in fear of this pain.
I'm almost 25 and I have had cluster headaches for nearly 10 years now.  I've tried everything I could try with VERY limited income and no health insurance but they are back again.  When I went to the health center at school last week and refilled my prescription for the second time this year, I could tell the nurse was skeptical and I think beginning to suspect me of 'drug-seeking behavior,' because I am so tired of this @%$#@ that I begged for anything they had to get rid of these @%$#@ things.
I'm a senior in college (studying chemistry and botany) and I'm about to graduate and intend to pursue graduate school.  I am particularly concerned that I may never be employable with this condition and am wasting my time and money working towards a degree I can never use. 
My closest friends are beginning to worry that I may be suicidal, and they have good reason - not because I am actually contemplating suicide but because I am feeling the same feelings of hopelessness, futility and worthlessness that can lead to suicide. 
I know a couple of people with migraine headaches who are sympathetic but I don't know anybody who really understands what I'm dealing with.  My friends and family are supportive but they are at a loss for what to say and what to do and probably feel as helpless as I do.  I can't explain how awful the pain is - I can't explain what kind of hell it is living in fear of pain so bad it makes you stop caring about consequences.  And I can't explain how horrifying my future looks if I'm doomed to endure this @%$#@ for the rest of my life.
I guess I'm hoping there's somebody here who can help me feel like there's a reason to keep living even if the only relief you ever get is temporary.

Hi Aurora, nice to meet you, sorry for the circumstances. You have come to the right place. Everyone here will begin chiming in with questions and answers for you. First will come the questions so we know what you've tried and what worked and what didn't. Plenty of us are broke, unemployed and without a stitch of insurance so rest assured all of our answers won't come with big price tags. Next, after you let us know what you've tried will come lots of answers for you to try. Please let us know your situation so the healing can begin. Glad you found us. Best wishes and lots of prayers are with you now.

Yes there is hope. But you have to decide that YOU are going to fight this to keep that hope. As Remission Lover said we can't be of much help without knowing more about your attacks and medications.

Reading as much as you can on this site will give you a lot of info about CH. There are things such as energy drinks downed at the first hint of an attack that can help. Pain meds are not useful for CH.

You must accept the fact that your health is the priority. CH won't kill us but we must take action to keep it from destroying our lives. This battle is only won by fighting it.

Prayers your way, Don

First, I want to say thanks for the initial support, and thanks in advance for any to come. 
Drugs I have tried:
Imitrex (oral): no help whatsoever
Zomig: cured pain but left me feeling so nauseous I couldn't move - not even my pinky finger- for fear of violent vomiting
Maxalt: no help whatsoever
Midrin: after second (before bedtime) dose in the middle of the next day I felt dizzy and passed out within minutes for a few hours, was too afraid to take it again
Verapamil: took during first two clusters, clusters lasted for months so I didn't have any way to know if it actually helped prevent them or reduce them
Fioricet: maybe not a common ch treatment but its a mix of butalbital (a barbiturate) caffeine and acetaminophen - my current acute treatment of choice but it seems to be less effective on this particular cluster
Corticosteroids: new treatment I'm trying, today was the last day and I thought they were working (four days in a row with no headache) but this morning seemed to prove that theory wrong...

My clusters seem to come on from stress and/or depression, and last for at least a couple months.  The last cluster was not so bad and yoga and meditation seemed to relieve it - headaches were about 8 on the Kip scale at the worst and the cluster was shorter.  That was last March, and here they are again.
They seem to be back with a vengeance, 1 to 3 a day (excepting the previous four days), each one getting to a 10 on the Kip scale after only 15 minutes.  This morning it was so bad that I took a total of four Fioricet - first three cut in half, who has time to wait - and eventually passed out only to wake up in the afternoon and spend the day in a barbiturate haze, still at a 3 on the Kip scale.
The individual headaches in this cluster seem to be triggered from heat - either they happen at night or in my history class (where the room is unusually warm most days).  I made the mistake of getting cocky as a result of my presumed success and put my winter comforter back on my bed last night so I would stop waking every couple of hours shivering - I really wish I hadn't done that.
I haven't tried O2 but I read the info page and hope to be able to try that soon, but I don't know if the student health center will prescribe it or if I can afford it if it is prescribed.  My current stressor is that the credit crunch is forcing me to consider bankruptcy, so anything that costs more than $10 or $20 is pretty much out of the question. 

My classes happened to be canceled today so I didn't have to deal with the shame, but I spent the day in a barbiturate haze and still uncomfortable, unable to study for upcoming finals, work on homework, or even clean up my apartment.  I've got grad school applications to be working on, which is particularly difficult when I'm beginning to wonder if I might be permanently disabled... do I have any reason to believe that I might be able to hold down a job in the future?

Well you came to the right place Aurora.

Bad news: You've been prescribed a stupid drug or two.

Good news: You're finding out about what works and you'll likely get your life back.  :)

The O2 info you've been reading is for real, and legions of cluster loons here have gotten tremendous relief with O2 and absolutely swear by it.

There are also constantly people coming on here talking about how oral imitrex doesn't work for them. That's because doctors are generally IDIOTS when it comes to CH and they routinely prescribe the oral form (WRONG!) when it is the injectible form that is most effective. Very effective in fact. If they prescribe it at the student health center do you have to pay anything for it?

So with just a little better finances, I could see you conquering these CH attacks, as I have, with the info gained here, and one typical scenario would be that you use O2 whenever you can, and 1/3 to 1/2 dose imitrex injections (a la the "imitrex tip on the left) when you can't.

Then a preventative you haven't tried yet might be a good idea too. I'll let others pipe in about that since I've blabbed enuff.

Yep Cluster headaches suck. Bad. But things very well may be looking up for ya now. I think you'll be able to hold down a job in the future just fine.  :)

What bejeebers said! Mostly you beat it with knowledge. 31 years with the beast, have a 27 year marriage, just finishing a 30 year career in law enforcement, raised 2 beautiful daughters, now grown adults...so trust me, it can be done.

Midrin....did nothing for me either.
Fiorinal....the only narcotic that ever helped a little...but tremendous potential for addiction and even worse rebound headaches.

Verapamil, curious the dosing they had you on. Many have to go as high as 980 mg a day to get relief, but it's a med that requires careful monitoring as dangerously low blood pressure can result. Like most prevents, it won't eliminate the attacks, the goal is to reduce the frequency and intensity so you're not on the abortives 3 times a day.

My prevent is lithium, at 1200 mg a day it blocks up to 70% of my attacks. I use oxygen to abort most of the rest. Do read the oxyegn info tab on the left as it's been a miracle abortive for so many, definitely worth trying.

Hang in there, as you'll see from many on the board, with knowledge and a little bit of work you can routinely kick the beasts arse!

joe

Your message suggests a lack of structure in the treatments given to you. Perhaps a doc who has little experience in treating the complexities of headache??? If you can't access a headache specialist (and this is not just any neurologist!) then you may have to educate your doc in how to treat you.

Print this article for the doc (as well as for you):

 
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]
========
Pain meds are not going to help! That's why you should attend to material like this article and the following.

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

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
========
Some folks will suggest oxygen to you. An effective abortive but the logistics of using in a college setting are a likely problem. If you can't afford Imitrex injection--the abortive of choice--then talk to the doc about trying Zyprexa. A pill with fast abortive action. I would not be comfortable with using it more than one time a day--but discuss dosing options in this article.

The advantages of this med is: pill (convenience), lower cost cf. Imitrex, effectiveness.

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.
===========
The sequence of using various meds is important:
1. start with the steroid to quickly abort the cycle.
2. AT THE SAME TIME, start Verapamil (it takes time to become effective) Print this article for the doc.
3. Find an effective abortive.

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).
==========

Stay in touch!!!

One more thing occurs to me regarding treatment and cost - if you wished to try imitrex injections and had a prescription, last I heard, Glaxo has a thing they do where they supply free  doses to those in a terrible financial crunch such as yours.

Not that I think imitrex is necessarily all that great as the only treatment for CH. I and some others have found there to be a potential problem with rebound attacks and such when it is used exclusively.

Again I want to thank everybody - you have given me the hope I need to keep going and keep fighting.  Really that is what I came here for and the wealth of information is a huge bonus. 

When I was first treated for ch I was 15.  Every spring and fall before that I had bad headaches that I suspected were a result of sinus or allergy problems, and though nothing otc relieved them they weren't bad enough for me to want to see a doctor.

When I entered what I now know was my first cluster, I had health insurance and my mom took me to the doctor. He was uncertain whether I had migraines or ch for a number of reasons - I hadn't had a previous cluster, I am female, my headaches present with nausea/vomiting and extreme photophobia and phonophobia, etc.  I had a CT scan and he prescribed Imitrex, Zomig, and finally Fioricet, since my mother used those for her migraines and she let me try one to see if it would work and it did.  My first latent period was almost 2 years.  Since then they've been steadily increasing in frequency and now seem to be a spring-fall thing. 

When I got my first attack after enrolling at college (was out of school for a while so I got dropped from my parent's health insurance) I asked the nurse if there was anything else I could try, not because the Fioricet didn't work but because it can interfere with birth control and when I took it as an adolescent I had rebound headaches that eventually led to my abusing them.  Any time I'd have the slightest inkling of a shadow I'd think "better safe than sorry!" and take another pill.

That was when I tried Maxalt and Midrin, at which point I gave up and again asked for the Fioricet.  I'm more mature than I was when I was 15 so I don't abuse it, but it's no longer satisfying both because I'm having to take more to get less relief and because I need to be able to think.  I'd rather feel intoxicated than in that pain, of course, but I can't do chemistry homework either way.

My college got a new RN since I started so now I talk to someone else, who likes to barrage me with questions but doesn't seem to listen or read anything in my history.  Also I don't think they ever even got a copy of my old history from my first doctor and have relied on my sketchy memory of when I was in high school, which doesn't contain important information like dosages.

I have a friend back home who is willing to lend me his O2 tank so I can "try it before I buy it" so to speak, but I won't be back home for almost another week.  I don't have to pay for my visit to the health center (well, I do, but it's figured in to my tuition) but I do have to pay for any prescription unless they happen to have samples lying around, which I'm guessing is particularly unlikely for tanks of gas.  Given my financial problems, until I get back home I plan to try to stay cold, because apparently comfortable is too hot to handle.  Even when I'm so cold I'm shivering the heat on the back of my neck doesn't go away.  I took the blanket off my bed last night and left the fan on and I was cold but I woke up PF and that is what really matters.

Thanks again to everybody here - I'm sure you know what a difference you have made for me and you fully deserve to feel appreciated.  I spent yesterday in tears and today, though I still have the puffy eyelids to show for it, I feel a million times better.  If angels are real, surely the members of this site are among them.

aurora wrote on Dec 10^th, 2009 at 12:31pm:

Again I want to thank everybody - you have given me the hope I need to keep going and keep fighting.  Really that is what I came here for and the wealth of information is a huge bonus.  When I was first treated for ch I was 15.  Every spring and fall before that I had bad headaches that I suspected were a result of sinus or allergy problems, and though nothing otc relieved them they weren't bad enough for me to want to see a doctor. When I entered what I now know was my first cluster, I had health insurance and my mom took me to the doctor. He was uncertain whether I had migraines or ch for a number of reasons - I hadn't had a previous cluster, I am female, my headaches present with nausea/vomiting and extreme photophobia and phonophobia, etc.  I had a CT scan and he prescribed Imitrex, Zomig, and finally Fioricet, since my mother used those for her migraines and she let me try one to see if it would work and it did.  My first latent period was almost 2 years.  Since then they've been steadily increasing in frequency and now seem to be a spring-fall thing.  When I got my first attack after enrolling at college (was out of school for a while so I got dropped from my parent's health insurance) I asked the nurse if there was anything else I could try, not because the Fioricet didn't work but because it can interfere with birth control and when I took it as an adolescent I had rebound headaches that eventually led to my abusing them.  Any time I'd have the slightest inkling of a shadow I'd think "better safe than sorry!" and take another pill. That was when I tried Maxalt and Midrin, at which point I gave up and again asked for the Fioricet.  I'm more mature than I was when I was 15 so I don't abuse it, but it's no longer satisfying both because I'm having to take more to get less relief and because I need to be able to think.  I'd rather feel intoxicated than in that pain, of course, but I can't do chemistry homework either way. My college got a new RN since I started so now I talk to someone else, who likes to barrage me with questions but doesn't seem to listen or read anything in my history.  Also I don't think they ever even got a copy of my old history from my first doctor and have relied on my sketchy memory of when I was in high school, which doesn't contain important information like dosages. I have a friend back home who is willing to lend me his O2 tank so I can "try it before I buy it" so to speak, but I won't be back home for almost another week.  I don't have to pay for my visit to the health center (well, I do, but it's figured in to my tuition) but I do have to pay for any prescription unless they happen to have samples lying around, which I'm guessing is particularly unlikely for tanks of gas.  Given my financial problems, until I get back home I plan to try to stay cold, because apparently comfortable is too hot to handle.  Even when I'm so cold I'm shivering the heat on the back of my neck doesn't go away.  I took the blanket off my bed last night and left the fan on and I was cold but I woke up PF and that is what really matters. Thanks again to everybody here - I'm sure you know what a difference you have made for me and you fully deserve to feel appreciated.  I spent yesterday in tears and today, though I still have the puffy eyelids to show for it, I feel a million times better.  If angels are real, surely the members of this site are among them.

I'm more mature than I was when I was 15 so I don't abuse it, but it's no longer satisfying both because I'm having to take more to get less relief and because I need to be able to think.  I'd rather feel intoxicated than in that pain, of course, but I can't do chemistry homework either way.


Kind of a red flag here.

          Potter

aurora wrote on Dec 10^th, 2009 at 12:31pm:

I have a friend back home who is willing to lend me his O2 tank so I can "try it before I buy it" so to speak, but I won't be back home for almost another week...

Something to keep in mind is that it may take a week or so anyway to round up a non-rebreather mask and a high LPM regulator for that tank so you'd probably want to start acting on that right away. Of course if your friend has a regulator on there already thats capable of at least 15 LPM that'd be great!

If you're having probs with acquiring the mask/regulator it might be worth reporting back here in case we can help come up with solutions.

In any case it will certainly be worth repeated study of that O2 info and memorizing it as if it is for your graduate exam  :) since how the O2 is administered can have everything to do with whether it will work for you.

Your 1 to 3 kip 10 attacks a day sound especially vicious Aurora. Rest assured a lot of hearts here go out to you, and we're here to help you lay some nasty counter punches upon this beast.  :)

Hello Aurora-
I started at 14, and boy oh boy, did they escalate into some pretty bad cycles the older I got too.  And they aren't going to get much better for awhile (I heard they naturally lesson in severity after 50 (??)).  I am 32 now, and I had a really bad bout last year at 31, but this winter one was pretty harmless, only had one full blown headache, was able to abort all the rest with Imitrex injections and O2. I have been PF since the 1st of Dec, and I just tapered off my Verapamil.  No shadows yet, I think the beast is gone till next time.

There are so many things that work for some and don't for others.
I take 320mg of Verapamil a day as my prevenative. I drink tons of water & lots of coffee. (Stock up on TP  ;))
As my abortive I use O2, 15lpm & a non-rebreather mask.  If that fails or I am out of the house, I use Imitrex injections.  I just got a prescription for a 6mg vile so I can use as little as I need (ie: the imitrex tip on the side menu). 
Last, but not the least by any means: Melatonion.  It is the best way to get a restful night sleep.  I take 9mg just before bed, and sleep pretty dam well.

I hope that info is helpful.  Keep us posted on your progress.  My thoughts are with you.
Angela