Hello all, first time poster here.
I need some help/advice, My name is Mark I am 24 years old and live in Ohio U.S.A.
The reason I am here is I started getting cluster type headaches 5 years ago the "cycle" started in Feb./March and lasted till around May. During this cycle I would regularly get a headache once a day, sometimes I would wake in the middle of the night with pain sometimes it would come in the middle of the day with little to no warning. The pain was sharp and unbearable, it felt like someone was sticking a hot screwdriver through my left eye and I would also feel a burning sensation on the back side of my neck. It eventually got bad enough that i made a trip to the E.R. and the Dr. ordered a CT scan which came up negative. They dismissed my headaches as "tension headaches" and sent me on my way. The next week, I had another kip10 headache and went to my family dr. He cracked my neck and told me that there was a nerve behind my left eye causing the pain. Soon after the visit with the family dr. the cycle was over.
It wasnt until March the following year that the "cycle" returned. I would begin to have the same type of headaches usually one a day, or once every two days if I was lucky. Always the pain was on the left side of my head, behind my left eye. I went to a neurologist and had an M.R.I. done to rule out brain tumors and ms. The MRI came back negative, same as the ct scan the previous year. I only saw the neurologist once, I had to wait a month to get my appointment and by the time the MRI results came back my cycle had ended around the month of May sometime.
It wasn't until 2 years later that I experienced a new cycle, Same time of year, the same type of headaches and again they would come at random times with little warning and last usually about an hr. But this hour is complete HELL. I toughed it out, got a script of Vicodin (which doesn't really help) and my headaches stopped after a couple months.
Well here it is March again and it seems the headaches have returned. I had the worst one yesterday, woke up at 8 in the morning with the worst headache I've had in 3-4 years. The pain was so unbearable that it brought me to tears, I could not sit still, just paced the floor with my left hand covering my left eye. I'm not sure that I have cluster headaches or not, Mine come usually once a day or once every two days if I'm lucky. The beast will come usually mid afternoon and the only warning I get is a burning sensation in the back left side of my neck, then boom, 5 minutes later I'm in agony then it will leave as quickly as it came.  I've been reading on here that during a cycle you guys get the monsters 2-10 times a day.
I don't experience a droopy eyelid or a running nose when it hits. And I dont usually get more than one a day and like I said it usually lasts about an hr.
So does this sound like cluster headaches to you? Everyone just tells me, its a seasonal thing or allergies, But I think these things are FAR too painful to be allergies. Any comments or suggestions are appreciated. Thanks for reading hopefully I didn't bore you to death.

We have all faced the problem of determining what type of headache we have when there are many dozens out there. And then we know that there are also many disorders which appear to be Cluster but which are not.

Assuming you have Cluster, you still have the need to have a good doc in your camp to guide treatment.

All by way of saying: fine a good headache specialist. NOT any neurologist--too many lack training and expeience with complex headache disorders. So,

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.  Call 1-800-643-5552; 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.
===============

But learn in the meanwhile.

 
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]

----
And explore the buttons, left, starting with the OUCH site.

Yeah, I have read everything there is to read. Theres nothing that you can copy and paste that I haven't already read.
I just want sufferers opinions.

demonh8r wrote on Mar 12^th, 2010 at 10:00pm:

Yeah, I have read everything there is to read. Theres nothing that you can copy and paste that I haven't already read. ...................................

That's pretty darn unlikely. If you have already read everything available, you wouldn't have suffered through the extreme pain peaks that you have to this point.

Yes, your symptoms do sound like Cluster Headaches to me, but getting a medical diagnosis on the internet probably isn't your best course of action.

Part of what Bob posted for you was intended to help you find a qualified doctor who can work with you to lay out an effective treatment plan. A truly qualified doc will make your life bearable in one big hurry instead of guessing.

Marc

I live in cleveland and have a good neurologist from university hospitals named colleen tomcik.

good luck and hang in there

only 1 or 2 a day?  hmmmm.....you are very fortunate! 
no droopy eyelid?  hmmmm....take the cluster quiz on the left and follow Bob's recommendation to find a qualified specialist

Sounds like CH to me. If two MRI scans have turned negative your symptoms appear typical for CH, regardless of the absence of droopy eye and runny nose (for now).

CH evolves and morphs over time, therefore symptoms, frequency, duration of cycles, length of attacks will continuously change.

You will need a neuro or headache specialist for an affirmative diagnosis and to get you started on treatment.

Not a great club to be a member of but welcome anyway.

M

I consider myself very fortunate to usually only have one a day. Rarely, I will have 2. I have never had mine skip a day during a cycle.
I am new to this site as well and we really need to listen. These people know what they are talking about. I would never claim that I have read everything there is to read about these darn things. Everyone"s experience is different. I have always suspected an allergy of some sort but have never been able to determine what it could be. I am confident that one day we will have the answers.

Yeah you guys are right I have not read everything there is to know about this curse. But I have spent countless hours doing my own research.
I have gotten the run around from docs, so I figured I could get genuine answers and opinions from sufferers here and not just some copy and paste. That is why I came here. I feel I have CH, and wanted your guys opinions since the docs cant give me a strait up answer.
Thanks guys for your responses I really appreciate the input. please keep them coming

demonh8r wrote on Mar 13^th, 2010 at 3:56am:

Yeah you guys are right I have not read everything there is to know about this curse. But I have spent countless hours doing my own research. I have gotten the run around from docs, so I figured I could get genuine answers and opinions from sufferers here and not just some copy and paste. That is why I came here. I feel I have CH, and wanted your guys opinions since the docs cant give me a strait up answer. Thanks guys for your responses I really appreciate the input. please keep them coming

Don't fuck with Bob.

       Potter

Hi there, even 1 h/a is 1 too many. I'm no doctor, but it does sound like CH.

Good luck with getting a diagnosis and treatment.
Caron

Welcome,

If your looking for somewhere to start and gain the answers you seek have another look at Bob's cut and paste.. ;)


Lefty

What Potter said!!!

You sound like some of the Neurologists we have all run into.

Read more, learn more then maybe you can help someone else down the road.

Welcome, Iddy

From what I read on this site the beast is different for everyone. When I first started with this pain, almost twenty years ago, it was a lot like what you are describing. I was told they were migraines. They would come in cycles lasting eight weeks or so. Over time they changed. Their frequency changed from every 2-3 days to now 3-6 per day during peak cycle. Yes, it sounds to me like CH. Obviously you’re in extreme pain. We all get the pain or we would not be here talking about it and trying to help others understand it. Many people have found ways to fight the beast. For me O2 has been a savior. If you get on it at the first sign of it coming it can stop it before it gets started. If that doesn’t stop it many people get relief with meds like Imetrex or Maxalt MLT. Like others have said find a doctor who knows what CH are. There are ways to fight back. I  hope this helps. Peace Hickory.

What's up 'ol demonh8r?  Welcome to the club that no one wants to be in.  But as long as we are here we might as well have fun ey?

I second everyone else's comments and a few to add.  I tend to get 1 per day historically.  Initially it is important to make sure it is not something more immediately life threatening, which it sounds like you have done.

If you are getting your butt kicked right now, try some of the standard coping treatments that the clusterheads have success with.  You have read our stories and know that a lot of people have success with energy drinks or caffeine.  Try it out at the very hint of your next big kipper.  Or if you get them every afternoon, drink a pot of coffee at 1pm, red bull whatever.  Can't hurt??  Breathe cold air out of your freezer, take a hot or cold shower.  Find that kudzu or melatonin recipe that some people swear by.  Why not?  All herbal or stuff people take anyways.  It will also help you start to figure out what types of things work so if you diagnosis is CH you can already have a few tricks up your sleeve.

I know you have seen it before so when you find your headache specialist have a copy of the oxygen info in your hand and demand oxygen and the special masks or whatever everyone here uses.  Almost everyone will tell you it is the most effective thing they do. 

A lot of people swear by the clusterbusters stuff.  Good luck.

--Shaggy

Ugh, don't give him caffeine - or kudzu.

That's all stuff that can help but doesn't work for everyone.

Does the dude have CH or CPH?

Yes, get yourself to neurologist - in the meantime, any general practitioner worth their copay will prescribe two things you can try that will rule things out.

CPH is a subset of CH, which since you're not female, seems unlikely, and since it's really just "super advil" it's probably not going to work, but you can ask to try Indometacin. It will, in all likelihood, do nothing - but the good news is that if it does nothing you do not have CPH - which is rare, but the drug is cheap.

The more likely aspect, you having CH, you can get a prescription for (wait for it) Imitrex Statdose 6mg Injectible.

Once you're comfortable with using it at the onset of your headaches, you can learn how to use the "imitrex tip" on the lefthand side of the page to get more then one shot out of a single dose container - but obviously you'll use it a few times to see if it even works to abort your headaches first.

Imitrex is not a painkiller. Imitrex is not opiate nor narcotic. Imitrex does pretty much nothing other then stop the weird headaches that we have. No - you do not want to be taking lot of this drug for a long period of time, but if it stops your headache quickly there's a really good chance that yes, indeed, you have CH.

It's kind of like an easy finger prick test.

Thanks for the replies guys, keep them coming. In regards to the latest response. What exatly is cph? never heard of it. I have been to two doctors and one neurologist and they all have no clue what they're talking about.
Two years ago when I had the last "cycle" my family doctor referred me to a neurologist, it took me one month to get to see him, he gave me samples of topamax i believe, and ordered an MRI. I could not get into the MRI for another week and a half. The neuro made me another appointment to see him a couple weeks after the MRI to give me the results, I got so anxious I could not wait 2 more weeks to review the MRI results. So I called them and made them give me the results via phone, they were negative thankfully. So in the meantime the cycle ended and I did not go back to the neuro for the second visit. I simply thought well maybe this was just like a pinched nerve type thing and I'm over it, and since the MRI didn't reveal anything life threatening I did not feel like going back to him and giving him more money.
Well I guess I'm wrong 2 years later the cycle has returned. The headaches have mostly been kip 5 or below so far until two days ago when I woke up out of a deep sleep with the big kip9 kip 10. It was weird for me to have a headache wake me up out of my sleep as I usually experience these damn things in the afternoon.
You guys are awesome, I've done a lot of research on ch over the last few years. But I think I learn more from the sufferers on this board than I have all the books that I have read. Thanks a lot.

CPH, here ya go:

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

It's a lot like CH, but is relieved by indomethacin. No one really knows why, but it works. It's like a subset of CH so to speak. It's even more rare, so it's even less likely you have it, and even less moreso less likely since you're not female, ya know?

And seriously, if you're in pain, look into the Imitrex injectable. As for topamax - that takes up to 30 days to get into your system at therapeutic levels so a "sample" is kind of a joke. It is not a narcotic or painkiller or any sort - it has to build up in your system over time.

demonh8r wrote on Mar 13^th, 2010 at 8:22pm:

But I think I learn more from the sufferers on this board than I have all the books that I have read. Thanks a lot.

Of course you will learn more here on this website, that's because this website of over 7,000 members are the one's teaching the rest of the world  ::)

Hi demonh8r,
All these guys are right that there are two important things you must do (1) Familiarize yourself with the information on this site and this message board (2) Get a Neurologist with CH knowledge and experience (I like Bob's succinct guide)

Since you asked for opinions from sufferers, I'll give mine. For what it's worth, it certainly sounds like CH to me.

I may be speaking out of my a** but you need to try aborting these things with Sumatriptan injections and pure O2 inhalation at high flow rate through a non-rebreather mask. Not only might these treatments bring you relief, but (I think) the success of these treatments will go a long way in confirming this tentative CH diagnosis.

Living with pain is hard, but being unsure of your diagnosis exacerbates it. I hope you can get some relief and clarity soon.

Best,
Rob

Loric wrote on Mar 13^th, 2010 at 8:08pm:

Ugh, don't give him caffeine - or kudzu. That's all stuff that can help but doesn't work for everyone. you can get a prescription for (wait for it) Imitrex Statdose 6mg Injectible.

With that said, saying not to try something because it doesn't work for EVERYONE means you should try nothing for CH.  At this time, NOTHING helps everyone.

O2 has always been the most effective I believe.

Caffiene WITH TAURINE is a thing to try while waiting to get something by script.  If it helps, then great.  If not you are out a few bucks.

Kudzu, melatonin, and others can also be tried while waiting for a Dr appt.

As for diagonosis.... take the cluster quiz, it is a better judge than I am.

If you see a doctor.... ask for O2 15-25 lpm MIN with non rebreather mask.  Also see if he/she has samples of a triptan (pref imitrex inj) you can try.

Finally, when Bob Johnson posts an answer, you would be foolish not to read and follow.  I assure you he is a human being although for a long time I assumed he was a very impressively welll programmed Bot.

yea that sounds like ch to me.

shaggyparasol wrote on Mar 13^th, 2010 at 1:44pm:

A lot of people swear by the clusterbusters stuff.  Good luck. --Shaggy

i do ;)