Hello,

Before I start, let me apologize if I unload a lot.  I've lived with cluster headaches for as long as I can remember, and finding anyone that can really sympathize is difficult.  My wife is supportive, but I also feel guilty for unloading on her - she has a hard enough time dealing with being around me when I get headaches.

One of my big concerns, and one of my reasons for registering here, is because I have some symptoms that seem unusual, and doctors I have been to do not seem to have experience with many other cluster headache sufferers to compare to.

Specifically, and to put it simply, I become borderline violent.  I have never yet done anything harmful to others, but it's only been with effort, and more than once my wife has had to stay elsewhere while I got through it.  I realize they are called suicide headaches by some, and that seems very close to the truth for me.  I should preface, I am generally mentally well balanced in daily life.  I do not contemplate suicide when I feel well, but when I'm in the thick of a really bad headache, it becomes a recurring, almost obsessive thought, as though literally anything would be preferable (I should also clarify, I do not think I am in any real danger of actually taking my own life, I take precautions to keep myself from doing anything irrational when I'm having a headache, and although I have the thought, I do not try to act on it).  I swear uncontrollably, writhe violently, become extremely irritable towards those who do not deserve it, and sometimes tense my entire body until my muscles cramp.  My headaches favor my left side, and when I have a headache my left vision becomes very out of focus.  I actually have an eyepatch I wear when I get one so I'm able to see straight, as the one bad eye interferes with the good one.

Doctors have unfortunately not made it easier.  Two have flat turned me away, saying I was obviously just seeking drugs.  One was "lucky" enough to see me when I was actually having an onset and understood that this is not being faked, and prescribed fioricet.  What can I say except that fioricet is better than nothing, though typically it only treats it just enough that I can hold still.  One of the doctors who turned me away also accused me of seeking disability when I told him I've missed work, and once quit a job because my employer told me to take aspirin and stop being a wimp (to put it politely).

I guess the one thing that really bothers me is that I feel like this condition makes others see me as weak.  It's not something that others can easily see and identify as disabling, like a bad back or other chronic pain.  People expect you to work through a headache, or believe you are acting out.  Trying to explain just how bad it is makes me feel like I'm being judged as having a low pain threshold.  I try to hold up my obligations, and I've had steady employment for some time, due to it having a slightly more flexible schedule and laid back environment, but even still I fear to really come clean with my coworkers about what I go through.

I suppose that's really what's bothered me for so long.  It feels like there's no one to talk to about this, and though my wife fully understands and sympathizes, I do not want to burden her any more than I already do.  It's especially bothered me to have doctors tell me to my face that I'm lying or seeking drugs; I do not abuse any drugs or alcohol, and if anything I'm somewhat phobic of prescription drugs.  I've been extremely cautious with the fioricet, taking less than the recommended dose at first because I fear building up tolerance to it and it becoming even less effective than it already is, only taking more when I know I will need it just to keep a grip on myself.

Anyway thank you for reading all of this, if you made it this far.  I've never really told anyone all my private thoughts about this.  Besides the fear of being judged, I also do not want to trouble even my wife with my private fear that if the condition worsens, I may find it increasingly hard to justify to my employer.  So far, so good, but it's a lot to have looming in the unknown.

Hi Hagen and welcome,
Sorry you had to find us, but reading through your thread
i'm glad you did. Just hang in there for now and watch this
space. Lots of help is on i'ts way.

Hoppy.

Welcome to the board Hagen. I promise you a couple of things, stick around here you'll never feel alone again. No one here will tell you to take an aspirin and forget about it. Your thoughts of suicide have plagued many on this board. Hurting those closest to us during an attack but what we say and do? Yeah, a little too common I fear. Let's get you your life back:

Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for over 35 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach. But first and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post 

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

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

So all that follows will be worthless I hope……….but still…

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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

This link will show you how to get set up with welding oxygen:

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

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

I used fiorinal in the 80's, it was all I had then. It put a dent on the pain  but that was about it. there is so much available now that's FAR more effective with none of the addiction issues!


For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Have your wife sign on the board and visit our supporters board. It's a great place for our significant others to find a sympathetic ear to vent to when we're being assholes! ;)

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Two major issues need your attention: 1. use of floricet is bad stuff  with Cluster. Doesn't work well, has too many side effects for long term use; 2. would serious advise seeing a headache specialist who can both offer better treatments and address your intense mood reactions (which are not characteristic of Cluster).
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LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. 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.

4. 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.

5. 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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Until you have seen a competent doc who can Dx Cluster (or not) any efforts at self-treatment are unwise and potentially can mask other, sometimes, more serious disorders. Which is to say, don't start using the treatments which will be offered to you here before you have a good idea of what is going on.

Assuming for the moment, that you have Cluster, the PDF file, below, outlines the most commonly used meds to treat it. Any good doc, if he has Dx Cluster, will be working from these meds for initial treatment.

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Thank you for the advice.  It has occurred to me before, reading the literature I've found on cluster headaches, that my symptoms do not precisely match the typical ones given for cluster.  They also do not seem to match anything roughly similar, like icthal headaches.  I have never had a seizure or had any severe head trauma or other factors of that nature, that I know of.

In fact the main two symptoms that seemingly led doctors to diagnose it as cluster headaches is the intensity of the pain (I'm sure everyone will understand when I say that if I rate these headaches as a 10, the next most intense pain I've ever felt in my life rates, at most, a 4 or 5, if I am generous) and the fact that the symptoms are unilateral.  The pain is difficult to tell, it seems unilateral but also radiates, but the vision problems are definitely left only.

If there are doctors who specialize in this, I would gladly like to know their opinion, I have always gone to family practitioners and for obvious reasons I now somewhat dread having to bother, since more than once I've wasted my money and been embarassed.  I am surprised that fioricet is advised against...it has only been marginally effective, but the doctor who declared it to be cluster headaches prescribed it and every doctor since who has done anything has simply refilled the prescription.  Despite it not working especially well, it is better than nothing and I've been afraid to push my luck and ask for any stronger painkiller, or really anything at all.  Most of my research has been trying to connect why the behavior changes, but having never spoken to anyone with cluster headaches or apparently much knowledge at all, I've had nothing to compare it to.

It does sound a LOT like CH, my fear is you're one of the unlucky ones with more then one headache type going on. We have several on the board who have CH and also suffer from another headache type. All the more reason to try and find a specialist.

Joe

Hi and welcome

That is quite a post for your first one. I can imagine that it wasn't easy to write it either, however you've found a place where there are thousands of people with CH who can relate and understand.

From what you describe as your violent symptoms:


Quote:

I swear uncontrollably, writhe violently, become extremely irritable towards those who do not deserve it, and sometimes tense my entire body until my muscles cramp.

Swearing when in intense pain isn't unusual and a few years back there was a study that showed that swearing helped reduce the pain which was widely reported in the media. One example is from Scientific American - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Similarly intense pain can affect how we relate to other people, especially those who are not sensitive to what people are going through.

And lots of people have reported how in the middle of a CH they have accidently hurt themselves, e.g. pulling muscles, banging heads, etc. and didn't realise until after the CH.

Similarly thoughts of suicide are not unusual with CH. You're not the only one to have thought about it in the middle of a CH by a long way. My neuro even asked me about that as a diagnostic question.

What makes a massive difference to the impact of CH is to get a good treatment regime in place that has a preventive to reduce the number of CHs you get plus an abortive to kill off CHs that develop.

What do you use?

Do work with a headache specialist as this is an area where general practicioners and even many neurologists have little skill or experience. As Joe mentioned there are quite a few of us who are lucky enough to have CH plus another headache type which can complicate both diagnosis and treatment (I'm one of these), which is another reason to work with a specialist.

For letting work colleagues know a bit more about CH, what has worked well for many is a letter (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE). Read it and consider if it or an edited version of it might help you.

Keep reading these forums and you'll soon know more than most doctors. Ask all the questions you can think of and more.

Ref. your reply, #4:
===If you believe you will be staying around....
It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location.
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Your experience with docs, so far, repeats an all too common pattern for most docs, even neurologists, have meager education and not much experience, dealing with complex headache disorders. This is not a condition to try and handle without sophisticated medical attention.

Not trying to scare you but to make the point that Cluster can be a troublesome problemto diagnose and treat: See-
Look under: Medications,  Treatments,  Therapies › Important Topics >Cluster-LIKE headache.

If you are unable to work with a headache specialist, then we can discuss options but....

Everything you have been told should be taken as pure and true gospel. Follow the advice above to the letter. There is nothing worse than unremitting pain accompanied by a sense of absolute futility. While we can't cure this disease, we can battle the beast with good practices and good interventions. That gives you an arsenal to bring to the fight. For me, the breakthrough came when this site first suggested I explore the use O2 as described at left. I can't tell you the relief it brought, not just from pain, but from feeling helpless. Keep us informed and God bless. lance