Hello, all!
I am new to this board, and I thank anyone who takes the time to read/respond to this mesage.

I'm a 27 year old female from Pittsburgh, PA.
I have never been diagnosed with CH, and I'm not trying to self-diagnose- I will be seeing a doctor as soon as I can afford to.  I'm just hoping for some opinions here, and if it does not sound like I have CH to you, maybe you could point me in the right direction? : )

I've had headaches for my entire life- mostly tension and migraines. About three years ago, I was suddenly visited by a new kind of headache. One night, my left eye started tearing and burning, and the vein on my temple started pounding. I tried to lie down in a dark room, but the headache urged me to my feet- I couldn't keep still at all. I must have paced the entire three floors of my house, pausing only to bang my head against the wall in a desperate attempt to relieve the pressure.  I had never felt anything like it, and I wished that I would just pass out already.  The entire left side of my head pounded and buzzed, from behind my eye to about the area of my ear. My nose alternately went from being stuffy to running a bit, only on that left side.
The headache returned exactly a week later, at the same time of night- I couldn't believe it. It was like clockwork! When the headache returned a few more times the next week, always around the same time of night, I decided to look up the symptoms. They seemed to match the description of a cluster headache.
I've had these headaches now for a bit more than three years, and the pattern seems to be this: I'll have a headache cycle that lasts for a week to two months, where I'll have a headache about 4-5 nights a week. Then, for a few months, the headaches will dissapear. It seems to be worse when the seasons are changing (like right now).

No OTC medication has ever made a dent in these headaches. And beer, which I used to sometimes have for other headaches- forget it. It makes these headaches go from 0-60 in a split second. In fact, I can't drink beer at all during a headache cycle- it seems to bring them on.

The only thing that goes against what I've read about CH is the duration- mine will sometimes last about 6 hours, and they do not always end suddenly- sometimes they die down to a dull throb very slowly.

So, wise ones- enlighten me! I thank you all in advance for your help.

Take care!
Nikki

Welcome Nikki,

I must ask, how did you hear of cluster headaches?
I ask that because a lot of migraine sufferers I know, know nothing about cluster headaches or what they're like.  You've obviously done your homework.

In saying all of that, you definitely came to the right place because your symptoms are unfortunately spot on.  Definitely get to a good neurologists to be diagnosed correctly and ruling out anything else.  If you need doctors names, we can list it from the OUCH site.
For now, if you're short on cash, you can buy energy drinks with 1000mg of Taurine which you should pound immediately at the onset of a cluster.  Also, go to the drug store and buy melatonin.  This is a sleep aid that has helped many.  I would try 6mg to start and work your way up till  you find a dose that works for you (I personally wouldn't exceed 18mg/night).  Take this 45 minutes before bed time.  This will give you a good nights rest which is important.  Once you get with a neuro, you should get prescribed oxygen at a high flow rate or you can use welding supply stores to get your O2.  This is the safest most natural way of aborting a cluster.  Many here can help you use it correctly, just ask.  Also, there are triptan drugs like Imitrex which works and alternative therapies like hallucinogenics.  You'll need to get on a preventative depending how long your cycles are.   

Please take the cluster quiz on the left of the screen to get started.

Stay away from beer/alcohol, nitrates, chocolate, smoking (for some), perfumes, petroleum based products, etc....

Hope all of this helps.

BTW, I love Western PA, went to college out there.

Cheers,
Chad

Chad, thank you so much for all of the info.

I first came across the term "Cluster Headache" while I was in the middle of a headache. I had spent the night rocking and pacing, and I just couldn't take it anymore. I suddenly felt angry at the headache (sounds silly, I know), and decided that I was going to figure out what it was so I could kill it. I looked up "types of headaches" online (with my one good eye, ha), and I saw the words "suicide headache".  I had to click on that one, because it summed up exactly how I felt at that moment.
I really hope to make it to a specialist soon... I have a feeling that I may benefit from oxygen, because I have hopped on my exercise bike during some particularly bad episodes, and the faster I pedaled, the less it hurt.  The headache never went competely away, but it did help.

I'm not able to try out the melatonin, because I am at the tail-end of nursing a baby. The redbull I will have to look into, though!
For now, the only things that (slightly) help are coffee, cold air, and the exercise bike. 
If it matters, my mother has the same headaches. She was the one who told me to try caffeine, and I in turn told her that she may be having CH. I hate to say it, but my family is a "just deal with it" type. We don't often go to doctors for problems, we often just try to work around them. Which I've had enough of... I'm ready to take charge and fight this thing already!

Sorry for the novel... It's just really nice to have found a place where people understand that what I'm feeling is real!   :D

My I have to agree, sure sounds like CH! Obviously you're wise to follow up with a head ache specialist neuro to eliminate anything else and confirm your diagnosis but damn!

As far as duration, that alone does not exclude CH as there is a minority of sufferers who have longer attacks. I used to describe my attacks as 10-12 hours. A closer description of an untreated headache is 90 minutes of intense ouch followed by up to 12 hours of a horrible headache that feels like I got whacked by a 2X4!

Another big plus for the oxygen is you can use it WHILE you nurse. Good luck with the diagnosis. If it turns out it IS CH, and it sure sounds like it, please stick around. You won't find a more comprehensive knowledge base on CH anywhere. And yeah, we understand how they feel and will never tell you to shut up and take 2 aspirin! ;)

Welcome.  Joe

I too vote for some nice non toxic O2 for ya.  :)

Really REALLY intense exercise, like til you're about to drop, at the onset of an attack is known to work for some of us, so it sounds like you're on the right track there, and if it's possible to kick it up another notch and pedal even faster :P, while you're awaiting your O2 delivery, maybe that'd be something to keep in mind.

You just gotta seek a headache specialist for your doc appointment. Most other doctors will do you wrong - very wrong - for this rare condition that they are completely ignorant bozos about. Of course headache specialists tend to make you wait a couple months for your first appointment, so going to a doc you can see earlier mainly in hopes of getting an O2 prescription is one way to work it. Or like Chad says there's the welding stores option for O2.

Scrim- Definitely sounds like CH to me. I was just officially diagnosed by a very helpful neuro today. I had suffered these types of headaches before in the past and had always suspected it was CH. I too am the same type of "just deal with it" personality, but this pain is unlike any other I have ever known so I finally broke down and went to a neuro, he ordered an MRI to make sure it was not something more serious, then diagnosed me with ch.
You definitely need to see a doc for this unbearable pain that way you can at least get some type of abortive cuz advil just doesn't cut it.
But yeah, what your describing sounds spot on CH, my attacks generally last about an hour, and I can get 3-4 a night. I have had many sleepless night in the past few weeks, and hopefully the meds I got today will provide me with some relief. I also had to go through a welder to get o2, which really does help abort.

I have found this site to be so helpful. I know you will too.
Best of luck

Wow, thanks for all of the help!
It feels amazing to have found a place where people won't roll their eyes and say "Another headache? Just take some tylenol!"  ;)

I have been finding some great tips while looking over the site... I've got lots to learn- it's great that all of the info is compiled here in one place! I'm trying to read as much as I can before the headache arrives (sometime between 9-11 pm tonight, ugh...).

Thanks again, all.  I really, really appreciate the help! : )

Just to get it straight, these demon headaches we call the "beast" are no type of "just deal with it" headache. 
Only we will know how it feels so we must understand why others don't.  You can give all the analogies you want and they still won't understand  >:(

Nikki, with nursing, definitely look into the oxygen rout.  My wife nursed both my boys and it's the best thing for babies and mom as well  :).  Go as long as you can.  When it's over, then you can look into the melatonin and other possibilities with your doctor.  Just find that good neuro or pain management specialists.  Ask us if you have problems, we'll find one for you.

Welcome and sorry you have to be on this site...not that its a bad site, on the contrary, it's a true blessing.
I do not have CH but my husband does, he has had them for almost 25 years. He was seasonal at first but has now been chronic for almost 3 years. The symptoms you have that you described unfortunately are exactly CH symptoms, my husband goes trough many of those.
Def see a neurologist as soon as you can and know that we are in this together. I'm new on this site as well and am so grateful it exists. Lots of love  :)

Nikki,

I also live in Pittsburgh suffering from CH. If you are in need of a good Neuro look up Univ of Pitt Headache center. They are located in Oakland on Lytton Ave by the Soldiers and Sailors Hall.

Tim

Ditto and ditto, everything said here. And if you can, run, dance, prance, stick your head in a freezer but stop bangin' your head against the floor or wall. I know the compulsion but baby needs mommy intact! From a long-time headbanger!  [smiley=duh.gif]

scrimshaw wrote on Mar 23^rd, 2010 at 7:24pm:

roll their eyes and say "Another headache? Just take some tylenol!"  : )

I hate when people do that! Or "no wonder you have so many headaches, all that caffeine you drink"

Thanks so much, everyone!
Tim, I will definitely be giving them a call. Sounds like a great place to start!
Rosalie, someone said that to me last week, almost verbatim. I had to count to ten and walk away. 
It's beyond frustrating, the way people will discount what we're feeling because it's "just a headache", and since I get them so often, "they can't be that bad", right?  Ugh. >:(

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")


HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

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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]

Hi Nikki.  Try the "letter to employers and colleagues" on the "getting to know you" section.  It may help and can eloquently explain clusters to people who are unfamiliar.

Nursing and clusters seems like it would present an interesting challenge.  After getting an accurate diagnosis to ensure nothing more serious, there are plenty of ways to manage your pain.  Different things for different people.  Sounds like excercise works for you.  Works for others too, keep it up.  Kills me sometimes, triggers an attack.

I don't need the redbull/taurine combo.  Coffee, tea, cola, vivarin all work as long as I take it a few minutes before my normal cluster time (to preempt an attack) or right as I start feeling the attack come on (to abort).  Wait a few extra minutes and say hello to 45 minutes of intense pain.

Personally, I never saw a doc and I don't 'tuff it out' either.  There is enough info here and at the clusterbusters site to give you many options once you are done nursing.  There are many ways to manage the pain but we must be very aware and vigilant to do it successfully.   >:( ( a stern face guy to ward off your pain!)

--Shaggy