Hi. I have what my doc started calling cluster headaches about three years ago. At that time I was having episodes that would last about three or four days. I would have a constant headache at the base of my skull and spikes, as I call them, two or three times a day. A "spike" would be where it would feel like someone sticking an ice pick in my right eye and then hitting it with a hammer. Then the pain from there would extend over the side of my head above my ear and meet the one at the base of my skull in the middle. On occasion it would be both eyes and both sides. I had a similar episode when I was twelve years old and that time period was to last for three and a half years. A really bad cycle has started again. I awoke on the first wednesday of September at aprox three AM and ended up in the ER. Since that day I have had a spike everyday between two am and eleven am. I am finally seeing a nuerologist in two days. On a more maddening note, I also have migraines....so the doc says. It would appear to be true. I can tell the difference. The migraines are better when all is quiet and dark and I sit still. But with the other headaches, I wrap my arms around my knees and rock and it looks like I am crying (and sometimes I am), but usually there is a constant stream of tears running out of my eye and my right nostril looks like a faucet. I am at the end of my rope. It seems so hard to function. I have the spike headaches two or three times a day and the migraines two or three times a week. When they come together....all I really want to do is die. If someone else out there is or has experienced this it would be great to hear about it. All I know right now is that I have a constant headache and my eye socket and right side of my head are sore to the touch and my ears ring constantly. I have had every test known to man, so it would seem and no cause has been found. Does this add up to what is called a cluster headache?

Hi and welcome to the site.  Sorry to hear you are in a bad way.  Let's see if we can't get that straightened out ;)

Some of what you describe is spot on.  Other stuff is a bit different from the 'classic experience'.  Don't let that put you off though.  We are all a bit different. 8-)

1st try taking the cluster quiz on the left <=  That should give you some idea if you are in the right neighborhood.

2nd start keeping a headache diary.  Recording time, duration, pain level, location, where you leak from, etc...  Also note what you did to try and relieve the pain.

Is your current Dr perscribing anything?  The typcial medical approach is two pronged: abortive and preventative.

An abortive medication is one which will quickly (one hopes) kill the pain.  These include Oxygen therapy, triptan injections or nasal sprays to name a few.

Preventative medications are used to prevent attacks from occuring in the first place.  These can take some number of weeks to become effective.

There is also the possibility of using a steroid taper to stave off the attacks while the preventative medication builds up in your system.

In addition to these methods there are also other "non traditional" methods explored at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Take a lot of time and read through everything on this site.  There are many years of experience to be found on these pages.  The collective knowledge is often more than you find at a Dr's office.  And I find that the best single weapon in this fight is a well educated clusterhead.

-Dennis-

We cannot diagnose and with a complex history which you have outlined it would be inappropriate to try.

Given the history, suggest you find a headache specialist. Our collective experience confirms the medical literature: docs get very little education on headache and have little experience, for the most part.

Besides, even if we did Dx you, the most effective treatments need an Rx and with the hundreds of types of headache you need a good workup before getting effective care.
====

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.

You've received to great pieces of advice!! A headache specialist neuro is critical to an accurate diagnosis and an effective treatment regimen.

An educated patient VASTLY improves ones chances at a correct diagnosis and a good treatment regimen.

If it does turn out to be CH.....and my amateur, uneducated guess is leaning that way.....insist on oxygen, with a home set up. I went from 90 minute attacks to aborting in 6-8 minutes, just by huffing oxygen. Read the oxygen info tab on the left, a wealth of knowledge and critical to using it correctly.

Good luck on your journey, this is the tough part, once you figure out for sure what you have, you'll have an easier time figuring out how to fight it.

Joe

Thank you so much for responding. I have never posted like that before. It was just so great to find a place where people have headaches like I do. I was going to write more in the post but was afraid of how long it was droning on and on. My GP has me on amitriptyline every night and propanolol everyday. Which has, up until yesterday kept the day long migraines at bay. Yesterday was a bad day, but today is looking better so far. She also prescribed immatrex which seems to be the only med so far that actually helps with the spikes. The insurance will only cover nine tablets and two injections a month so I treat it like gold and use it as sparingly as possible. She also gave me oxycodone which I have to use when I run out of immatrex. This really doesn't make the pain go away, but it masks it enough to function. The trick is to get enough in to back the headache off without turning into a zombie. The neuro I am going to see on the morrow is the only headache specialist in town, hence the reason it has taken so long to get in to see him.

You like your GP as much as I do my primary care doc--but I would not give him control over treatment of my cancer because, for all his good intentions, he doesn't know enough about that area of medicine.

What you have said about your GP's treatment says that he does not know how to treat Cluster. The approach for migraine and cluster can be quite different.

None of the meds you are using for are useful for Cluster. The Imitrex is the closest but the pill form doesn't work quickly enough to be helpfu. The injection is excellent but any doc will have to work with the insurance co. to get more approved (explore this question in the OUCH site, left buttons).

With two complex, if related, disorders, you really need a headache specialist.

To give you some background on Cluster treatments--to help see what you should be receiving--see the PDF file below and print out a full version of the abstract below.
====



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]

---

soulsatzero wrote on Nov 17^th, 2010 at 6:44am:

My GP has me on amitriptyline every night and propanolol everyday. She also prescribed immatrex which seems to be the only med so far that actually helps with the spikes.

What Bob said.  Get thee to a Headache Specialist.


Quote:

The insurance will only cover nine tablets and two injections a month so I treat it like gold and use it as sparingly as possible.

Look at the Imitrex tip on the left <=.  That'll show yo u how to get six injections out of each stat dose kit.


Quote:

She also gave me oxycodone which I have to use when I run out of immatrex. This really doesn't make the pain go away, but it masks it enough to function. The trick is to get enough in to back the headache off without turning into a zombie.

Please read Svenn's post sticked on the General Posts page: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. ; Opiates are only appropriate for cluster headache in very specific circumstances when every other option has been exhausted. 

Quote:

The neuro I am going to see on the morrow is the only headache specialist in town, hence the reason it has taken so long to get in to see him.

Good luck with this guy.  Before you go, read up on Oxygen therapy.  I almost never use Imitrex after beginning to us O2.  It actually works faster for me than the injection with none of the wierd side effects.

Good luck and keep us posted.

-Dennis-

I missed your mention of seeing a neurologist in a couple of days. We have too many members who have found neurologists as poorly trained/experienced in headache as any docs. (And there is research to demonstrate the low level training they receive.)

After you see the neuro, compare his treatments with those in the articles I gave you. There should be a strong parallel; if not, please get back with details of what he has advised/Rx.

Thank you to ALL of you. This info, along with other I found on this site has been quite helpful. And yes that description definitely fits my short term headaches. (Headache seems like such a poor way to word it). It would appear that I am having these in conjunction with migraines. I REALLY hope this headache doc can help. I did find that chewing up the immatrex helps it work faster. The short term headaches have lasted, for me, from fifteen minutes to four hours. The migraines seem to be less severe with the meds she gave me, but they are still lasting up to three days and are coming two or three times a week. I am lucky if I get one or two days a week without the pain being severe. The sides of my head and my right socket feel bruised. I am going to sign off, I am getting tunnel vision and everything is getting blurry. Here we go again.

Please don't take pain medication for what you think is a cluster headache.  It doesn't work and can become a much worse problem than even a cluster HA.

Okay, saw the doc today. He is quite more informed than my gp. He changed my meds. He said we are going to hit steroids heavy to try and get it in check, so we have prednisone 20mg four times a day for three days then stepping down from there. I also have verapamil er 240 mg daily in place of the propranolol sa that my gp had me on. I stay on the amitriptyline hcl 100 mg a night to try and keep the regular migraines in check. I am also to call back if I keep having the cluster headaches. So thanks for the info guys, it seems he has prescribed the meds that are in line for clusters.

If the Pred. taper doesn't block attacks within a few days you may have to start another round at a higher startin dose. Commonly, 60 to 80mg is used.

Not to be concerned: just part of the trial and error business of treating CH.

This doc seems off to a fair start with this change.  I especially like this:


soulsatzero wrote on Nov 18^th, 2010 at 9:23pm:

I am also to call back if I keep having the cluster headaches.

He initiated an open door to monitor progress using your feedback.  Good to stay in touch for a while, getting the verap to an effective level for you needs your input.


Hoping better              :)    

I'm with Kevin, hang on to that doc with both hands. He sounds like he knows some about cH, and the offer to "just call him" if you have nay problems, WOW! :)

Steroids work at doses as low as 30 mg a day for me to block 100% of my hits. For most, it'll block the beast while you're taking it. For a small percentage, it'll actually halt a cycle! Hoping you're one of the lucky ones.

I didn't see a mention of oxygen, do read up on that, print out the material and talk to the doc. If the steroids don't abort your cycle, 02 will be your new best friend, I promise! ;)

Joe

OK, it's been quite like you all said, an experiment. Any time we drop below 40 mg of steroid the attacks are back. The regular migraines are still no where near under control. I am still having four bad days out of seven a week. The verap is up to 480 mgs a day, 100 mgs amitrip and 1mg of topamax and of course the ever present immatrex. Sadly enough, I think the propranolol was more effective for the regular migraines. And soon I will be without health insurance, lost my job. Too many mistakes from trying to work with either a skull crushing headache or meds that make my head spin. I just feel if I can get the headaches sorted out I can get my life back.