I have not yet been able to find a doctor that understands cluster headaches.  I have been a patient at a pain clinic where they are doing low frequency ablation in an attempt to  disrupt the pain messages through the nerves.  So far, i'm not sure it has done any good at all! 

In the mean time, I'm studying everything I can find.  Reading here extensively and following links supplied here.  I'm confused whether I actually have cluster headaches or atypical trigeminal neuralgia. I know you guys cannot diagnose on this forum.  I'm  hoping to return to my summer home in Iowa where I can find a doctor closer to my home.  We are 120 miles here one way. 

Last year, my cycle ended towards the end of May.  I feel my headaches are "changing" letting me sleep later and not as intense as they were this fall. There is a lot more "shooting - zapping" pain during the day now though which makes me question whether it may be TN??? As things go I"ll probably hit the end of my cycle about the time I'm actually in a position to see a good doctor.  Will there be a "remission" if this is TN???  Does anyone know the difference between TN and CH? 

Sorry, I'm so needy. It is in desperation we write here ( most of us)  no one really understands the physical pain of this condition and the utter dismissal we feel by well meaning friends. 

So good to know you guys are here.  Thanks for letting me ask the questions and read those of others.  This board is the only one I've found that really covers the issues I'm dealing with right now.

Linda  aka Granny Arizona

Signs and symptomsCluster headaches are excruciating unilateral headaches[1] of extreme intensity.[2] The duration of the common attack ranges from as short as 15 minutes to three hours or more. The onset of an attack is rapid, and most often without the preliminary signs that are characteristic of a migraine. However, some sufferers report preliminary sensations of pain in the general area of attack, often referred to as "shadows", that may warn them an attack is lurking or imminent. Though the headaches are almost exclusively unilateral, there are some documented as cases of "side-shifting" between cluster periods, or, even rarer, simultaneously (within the same cluster period) bilateral headache.[3] Trigeminal neuralgia can also bring on headaches with similar qualities. However, with trigeminal neuralgia the pain is mostly located around the facial area and is described as being like stabbing electric shocks, burning, pressing, crushing, exploding or shooting pain that becomes intractable.

[edit] PainThe pain of cluster headaches is markedly greater than in other headache conditions, including severe migraines; experts have suggested that it may be the most painful condition known to medical science. Female patients have reported it as being more severe than childbirth.[4] Dr. Peter Goadsby, Professor of Clinical Neurology at University College London, a leading researcher on the condition has commented:

"Cluster headache is probably the worst pain that humans experience. I know that’s quite a strong remark to make, but if you ask a cluster headache patient if they’ve had a worse experience, they’ll universally say they haven't. Women with cluster headache will tell you that an attack is worse than giving birth. So you can imagine that these people give birth without anesthetic once or twice a day, for six, eight, or ten weeks at a time, and then have a break. It's just awful."[5]

The pain is lancinating or boring/drilling in quality, and is located behind the eye (periorbital) or in the temple, sometimes radiating to the neck or shoulder. Analogies frequently used to describe the pain are a red-hot poker inserted into the eye, or a spike penetrating from the top of the head, behind one eye, radiating down to the neck, or sometimes having a leg amputated without any anaesthetic. The condition was originally named Horton's Cephalalgia after Dr. B.T Horton, who postulated the first theory as to their pathogenesis. His original paper describes the severity of the headaches as being able to take normal men and force them to attempt or complete suicide. From Horton's 1939 paper on cluster headache:

This gives a little insight to the difference in pain.   I hope it helps.

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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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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Starting learning as much as you can about these types of headache; will make your work with a headace specialist more fruitful. Explore buttons to left, starting with OUCH and see:




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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A new (for me) site which is worth your attention: medical literature, films, plus the expected information
about CH.

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

Greetings, Granny. I was diagnosed with both CHs and Trigeminal involvement. The attacks were generally simultaneous but different in character and flavor. Honestly, I was relieved to have "just" a CH, because the Trigeminal pain was soooo electrifying.  I'm not sure how this plays out normally, but the treatment was not speciic to either, but rather CH preventatives and abortives also releived the trigeminal pain. Especially O2. That was the first symptom to go, and then the O2 began to work on the symptoms of CH pain. This is something to ask your neuro, especially one with CH experience. Let us know how you make out. Blessings. lance

Hi Lance,  In all my reading, i'm becoming convinced that i might have both also.  My problems started a few months after a difficult root canal.  I was convinced for a long time that it was my teeth.. then my sinus... well you know the drill.  My primary doc diagnoses trigeminal neuralgia.  BUT... I don't have severe stabbing shooting electric like pain in my face.  I do have the runny eye and nose and timely nocturnal episodes that others speak about.  The pain CAN be excruciating... or it can be a 5 or 6 on the kip.  But enough to keep me up for an hour or so and then,  I'm up for the night. 

I started really believing my docs diagnosis of trigeminal neuralgia when, lately, I've had (not that painful (yet)) stabs through my cheek area and temple area.  I simply NEED to get my self to a doctor.  This whole thing has been gradually "localizing" over the past 2 years.  I'm learing all about the beast as you guys call him.

We will be leaving AZ in a couple of weeks and i can see about getting a doc.  I've wasted the winter at a pain clinic with epidural blocks and radio wave treatments... nothing has helped.  If anything its much worse.  Do  cluster headaches or trigeminal neuralgia worsen over time? 

Last year, my cycle ended about this time - so I'm hoping the painful, nightly bouts will just magically stop.  I had a pain free summer.  (3 months) out of the year and they started again in September. 

Thanks everyone for hearing and understanding
Linda   aka Granny Arizona

Quote:

Do  cluster headaches or trigeminal neuralgia worsen over time?

That is, of course, 64thousanddollarquestion, isn't it?  The only answer I can give is a firm "maybe, maybe not."  Everyone is different. Some find their cycles remain stable. Others, that the cycles diminish with time. Many, that the cycles increase in both intensity and duration.  The only consistency I've found is that left untreated, or for individual hits left unaborted, the beast seems to take encouragement and run as hard and fast as we let it.  Early address of any hit seems to be the order of the day, and seems to bode well for decreasing the force of a cycle. Do see a good headache specialist, particularly one with CH experience. By the way, have you gotten O2 yet? It can travel with you you know. Keep in touch, and God bless. lance

I have this exact same question... do I have CHs or trigeminal neuralgia?

I always thought they had to be CHs, but after reading the TN FAQ at bupa(dot)co(dot)uk (sorry, can't post links until I have 10 messages apparently)*, I'm not so sure. In my current cycle (the last two weeks), I've been woken in the middle of the night (usually about 30 minutes after laying down) by an attack maybe 1 in 3 nights. Pretty much every morning around 8am I'm woken by an attack (although that attack has only been excruciating during the last few days... up until then they were fairly mild). About every other day I will get one in the middle of the day.

So is the thing about CHs being primarily nocturnal not always true? Because for me, thinking back over my 12 years of ~once/year 3-4 week cycles, I'd say at least half of the headaches have been during the day.

The other thing that has me thinking it could be TN is the "pulsating" feeling of my attacks. They describe TN as "shocking" and CH as "steady". My attacks definitely aren't steady. The intensity is constantly varying... it grows to extreme unbearable hell, then slowly lets off for maybe 30 seconds, with little sharp bolts of extreme pain while it's doing so, then it builds back up... feels like a torturous never ending set of pain waves with hot pokers being jammed into various areas around my face sporadically as the overall pain level builds and recedes.

It's always only affected the same side (right) of my face, but I believe that's a symptom of both CH and TN.

Also, a little background info: I'm 32, and got my first attack Spring of 2001. An attack for me usually lasts between 45 minutes and 4 hours. I usually get attacks 1-3 times/day for 3-4 weeks at a time, followed by 12-16 months of remission, although my last pain-free period was over 2 years... thought RC seeds had ended it, but then they started back up about 2 weeks ago.

Any ideas? Thanks!

* Here's the FAQ text:
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Cluster headaches are severe headaches that typically affect the area around your eyes or your temples (the flat areas on the side of your forehead). Like trigeminal neuralgia, cluster headaches occur in bouts. During a bout, you will get a headache at least once every two days but rarely more than once or twice in a day. This is usually on the same side of your head and can last anything from about 20 minutes to two hours. Bouts of cluster headaches can last for weeks or months. As with trigeminal neuralgia, you may have remission periods, where the headaches stop for months or years before returning.

Unlike trigeminal neuralgia, cluster headaches tend to start at night and the pain is worse when you’re lying down. The pain isn’t triggered by touching your face and the pain is steady, not like an electric shock as in trigeminal neuralgia. Cluster headaches cause redness and watering of your eyes, which doesn't occur in trigeminal neuralgia.
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We can't tell you which you have. That is something you need to find out from a headache specialist. It is quite possible you have one or the other or even something else. We cannot do a diagnosis.

However whilst for many people with CH the attacks come at night it isn't true for all of us. Some get both daytime and nighttime ones, others like myself have 99% of CHs during the day (I think I've had something like 2 when asleep in total).

G'day Brent,
To the left of this page on the directory,the 4th link down
from the top is a cluster quiz, this could answer the question
your looking for.

Hoppy.