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(Message started by: jaketsy on Apr 20^th, 2007, 3:11am)

Title: New and confused
Post by jaketsy on Apr 20^th, 2007, 3:11am

Hello there, I'm new and I thought I'd check in. My name is Josh, I live in Israel, I'm 24 years old. I was diagnosed years ago with migraines, but after reading about CH I think that may be what I have. Most of my symptoms fit better with CH. I scored high enough on the quiz on here. I saw the CH videos and migraine videos on youtube (amazing what you find on the internet!), and it's the former I most resemble when experiencing an attack. I can't relate to the migrainers, who can actually sit calmy and speak in front of a camera. Whatever pain they may be feeling, I don't see it on their faces. They just look exhausted.

In a few aspects though, my symptoms are more like those of migraines. I'll spare everyone a full desciption of what I go through - it would be too long and we're not here to diagnose each other anyway. But what I would like to know is: is there any concensus on what is distinctive about a CH? It seems like certain things are characteristic of it, but there are exceptions for everything.

Examples: according to what I've read, throbbing pain is typical of a migraine, not a CH. But ... some CHs are like this too.

Sensitivity to light and sound is also typical of a migraine ... but CHers can have it too.

The pain of CH is more intense ... but migraines can also get very intense, right? Maybe the folks with migraines on youtube have mild cases?

CHers pace and thrash around around during an attack, migrainers prefer to lie down and be still. But not all CHers pace and thrash around. (I for one may pace and stomp my feet at the beginning of an attack but once it gets really bad I'll usually collapse onto the bed, too weak and overwhelmed to be bothered with coordinating my legs, though I'll still probably be moving my head around or rubbing around my affected eye. If after an hour or two the pain eventually backs down a few levels and I'm exhausted enough I may then be able to get used to the pain and drift into sleep.)

Migraines are more associated with triggers. But CHs can have triggers too.

Migraines, unlike CHs, may have distinct stages before and after the actual headaches ... but they don't have to.

And so on.

There are so many aspects of CHs which don't actually have to be present for it to be a CH, and aspects of migraines which may be present ... are there any that make or break it? The length of an attack? Some objective measure of pain? Some brain or nerve or blood vessel activity? Or is just about checking off more symptoms for one or the other? Are CH and migraines really discrete categories, or are they just convenient labels for groups of symptoms that often, but not always, cluster (forgive me) together? Can someone be right in the middle?

Also, I've gotten recommendations from people to seek out particular chiropractors, reflexologists, and an acupuncturist/Chinese herbalist. Have these types ever benefitted anyone with CHs? I'd love to solve this thing with Chinese herbs if I could. I actually had some early successes with kudzu, though it seems my headaches have become immune!

I have an appointment next Thursday with a neurologist, which I imagine is necessary for a definitive diagnosis (not to mention drugs which my GP said she could not prescribe), though I'm not sure how much of an expert he is in these matters, so I'm still trying to learn as much as I can myself. I'm glad to have found this site.

Title: Re: New and confused
Post by ClusterChuck on Apr 20^th, 2007, 4:10am

Hi Josh! Welcome to the site!

To your questions, one word can answer all most all of them: MAYBE ...

LOL ... I am not trying to be a wise guy, but you have asked some very valid questions, most of which are very difficult to answer. Many of us, that have had clusters for many years (28 years for me) have, and still are asking the same questions.

In my mind, the most distinctive charactoristics of clusters are, one, the speed in which they ramp up and then back down. Two, the length of each hit: 30 to 120 minutes, normal (although 3 hours is not unheard of). Three, the inability to remain still, and quiet. Four, many times, the precise, same time, of each attack (we call them hits). Five, the onset of a hit, 45 minutes to 120 minutes after going to sleep (entering into REM stage of sleep), and waking the sufferer out of a sound sleep. And six, the origin of the name, they are in clusters, in other words, for a period of time, and then they go away for another period of time, unless you have the rarer chronic form.

Another difference is that clusterheads respond VERY well to breathing 100% oxygen, at high flow rates, as an abortive. Migraine sufferers rarely respond to O2 treatment.

But, as you so well stated, mostly it is a case of analizing all the symptoms, to see which it is closer to. There is no test to show, conclusively, that you have clusters.

Although migrainers and clusterheads share some symptoms, they are two distinct maladies.

I hope I have helped somewhat. Please keep us informed on your progress and research results. We do care. Continue to ask your questions. Between all the sufferers, and supporters here, at least ONE of us should be able to help. There is a tremendous amount of information and experience here.

Good luck, and welcome aboard!

Chuck

Title: Re: New and confused
Post by BB on Apr 20^th, 2007, 5:21am

Hi Josh,

Welcome but sorry you have this bad headache too.

Ditto what Chuck said. Both migraine and CH belong to a group of syndrome called Autonomic Trigeminal Neuralgia. They have many similar and overlapping symptoms. They both involve neurovascular events which affect the same area of the head ie eye and half the face.

There are some distinctive differences though in my opinion:

1- CH tends to start suddenly and ends suddenly while migraine tends to build up slowly and often lasts longer.
2- Visual auras, nausea and vomitting are much more common in migraine than CH.
3- CH often involves the pain of a hot sharp stick drilling behind one eye, from the back of the head, feeling as if its trying to push to eye out of the socket, but always stops just short of that. Migraine pain is more like building up of pressure and tension behind the eye then it throbs.
4- CH is strictly unilateral ie on one side of the head, it can switch side but not affecting the whole head all at once, while migraine can be on one side or both.
5- The pain of CH is sharp and more sereve, migraine pain is more throbbing, and I dont believe migraine pain ever reaches a kip 10 level.
6- During a CH attack especially a high kip, its almost impossible to be lying still and be quiet. During a bad migraine attack, sufferers tend to curl up into fetal position and whimper. I have not seen nor heard of any migraineurs rolling, crying, screaming uncontrollably on the floor.
7- Strong pain killers such as narcotics work fairly well for migraine pain while it doesnt touch CH pain.
8- CH attack involves more autonomic nervous reactions such as sweating on the brow, constriction/dilatation of the pupil on the affected side and high skin temperature. The eyelid tends to droop a lot more obviously after a CH attack.
9- During a CH attack, people often hit their heads to ease the pain ( or its pure distraction, I am not sure ) while migraineurs are more likely to clutch their heads.
10- CH attacks tend to follow a more obvious circadian pattern, often occur at certain times of the day on the dot. CH cycle also tend to follow a clear seasonal pattern. Except for chronic CH which may or may not have any pattern.
11- Most CH are episodic and once a cycle starts, it tends to occur daily and continue for a set number of days/weeks/months. Migraine is more random although it can occur in cluster too.

However, many people have cluster with a migrainous variants just to make things more confusing. On top of that we have a miriads of other similar conditions such as SUNCT, chronic daily headache, hemicrania continua etc making a clear cut diagnosis almost impossible in some cases.

Thats why its important to keep a headache diary to record all the different symptoms to help your neurologist determine which one you are most likely to have.

Good luck with it all and painfree wishes to you.

Annette

Title: Re: New and confused
Post by Bob_Johnson on Apr 20^th, 2007, 12:56pm

Headache. 2006 Sep;46(8):1246-54.

Cluster headache: clinical presentation, lifestyle features, and medical treatment.

Schurks M, Kurth T, de Jesus J, Jonjic M, Rosskopf D, Diener HC.

Background.-Cluster headache (CH) is a rare but severe headache form with a distinct clinical presentation. Misdiagnoses and mismanagement among these patients are high. Objective.-To characterize clinical features and medical treatment in patients with CH. Methods.-We established a cohort of 246 clinic-based and non-clinic-based CH patients. The diagnosis of CH was verified according to International Headache Society (IHS) criteria. We used standardized questionnaires to assess associated factors as well as success or failure of treatments. Results.-The majority (75.6%) was not treated before at our clinic-77.6% were males; 74.8% had episodic CH, 16.7% had chronic CH, in the remaining patients, the periodicity was undetermined because they were newly diagnosed. Cranial autonomic features were present in 98.8%, nausea and vomiting in 27.8%, and photophobia or phonophobia in 61.2% of CH patients. Most (67.9%) reported restlessness during attacks and 23% a typical migrainous aura preceding the attacks. The rate of current smoking was high (65.9%). Half of the patients reported that alcohol (red wine in 70%) triggered CH attacks. Eighty-seven percent reported the use of drugs of first choice (triptans 77.6%, oxygen 71.1%) with sumatriptan subcutaneous injection being the most effective drug for acute therapy (81.2%). The most frequently used preventive medications were verapamil (70.3%) and glucocorticoids (57.7%) with equally high effectiveness. Conclusions.-Apart from the IHS criteria additional features like nausea/vomiting and migrainous aura may guide the diagnosis of CH. A large number of CH patients do not receive adequate treatments. (Headache 2006;46:1246-1254).

PMID: 16942468 [PubMed]
========================================================================================
Curr Pain Headache Rep. 2003 Apr;7(2):144-9.

Epidemiology of cluster headache.

Finkel AG.

Department of Neurology, University of North Carolina, Chapel Hill, 3114 Bioinformatics Building, Chapel Hill, NC 27599, USA. finkela@glial.med.unc.edu

Cluster headache is rare, occurring in less than 1% of the population. Studies suggest that, in addition to the pain and associated autonomic disturbances recognized to be characteristic of the syndrome, patients also may experience nausea, photophobia, behavioral agitation, or restlessness. A decreasing male:female ratio also has been noted, perhaps attributable to lifestyle trends adopted by more women that were previously associated with men, such as tobacco use, alcohol consumption, and working outside of the home. The relationship between cluster headache and hormonal events does not appear to be strong. Hormonal influences on the chronic form of cluster headache in women are a subject of investigation. The emerging understanding of the genetics of cluster headache increasingly suggests a genetic component, with familial transmission now recognized to be more common than previously appreciated. Head trauma, coronary artery disease, and migraine appear to be present in more patients with cluster headache than can be explained by chance alone. Ethnic and racial differences in prevalence are less well understood.

Publication Types:
Review

PMID: 12628057 [PubMed]

Title: Re: New and confused
Post by Rosybabe on Apr 20^th, 2007, 2:20pm

Hi Josh!

welcome aboard!

Hope you do not have Clusters but if you do you are in the right place, there is a lot of people here ready to help and support you during the agony days and also during your pain free days..

Title: Re: New and confused
Post by pieface_49 on Apr 20^th, 2007, 8:04pm

Thanks for the writing Josh,
Your writing was both enjoyable and true. I have had to learn some things the hard way. Misdiagnosed and with a medicine cabinet full of pain pills, I quit taking them because they would not help the pain quickly enough. I questioned if they were doing any good at all? During an episode, not being too brilliant, I would pull out a beer and some crown. My brilliant mind thought the pain meds took too long to take effect and the liquor would take effect sooner. I kept questioning whether the liquor actually prolonged the pain and might be making it worse? I would wonder why after one beer, the pain of a hit would come on? Alcohol was a trigger as well as an antagonist and until I stumbled upon this site, I knew no better.
Before an episode, my nasal passage on the afflicted side will become stuffed up. I can blow my nose, but nothing comes out. This is when I know the CH episode may begin. A strange tingling in my sinus cavity is also an indicator the episode may be coming. Sometimes it is a false alarm. A dull pain in the side of my jaw or nasal cavity starts the true episode. The pain can last a few minutes to hours. I never know how long it will last. It seems like when I am at the peak or near the peak of a cycle, the longest lasting episodes will occur. My eyes will water after about 5 minutes and a box of kleenex is in order because the longer it lasts, the more my sinuses will drain. Just like that, from being totally congested to serious drainage. Others may not describe what I am describing.
At the peak of my cycle the migraines will start. Temple sore to the touch. Sore neck and shoulder muscle (affected side only). Forehead sore to the touch in certain areas. Even aura's associated with Migraines, not CH occur.
During a CH I will cuss and curse the darned thing. At first, I will sit and put pressure on areas of my face, the nasal passage, the temple or where the trigeminal nerve enters the back of the skull. Somehow putting excessive pressure dulls the pain if only for a moment. If sitting, my feet and legs will move (nerves?). Eventually, I will have to get up and am awkward and not well coordinated. I may or may not be able to open the right eye (afflicted side). This is accompanied by more cussing, perhaps a slap in the face. Pacing seems to help, but eventually I will have to sit back down and get back to applying excess pressure to areas of the afflicted side.
At the end of this article is a section titled "Self Care". Also note it states "may help you avoid a cluster attack". What works for one may not work for another is a very common statement found here.
http://www.cnn.com/HEALTH/library/DS/00487.html or http://www.mayoclinic.com/health/cluster-headache/DS00487/DSECTION=3
Here's to hoping you find a solution to your puzzling, yet serious issue. Oh ya, before I forget. There are some natural remedies which may be helpful. Melatonin (no long term medical studies done to determine long term effects), Red Bull (contains 1000mg of taurine), taurine, just stumbled upon African red tea (rooibos), as mentioned Kudzu, magnesium. Check this site out http://med-owl.com/clusterheadaches/tiki-index.php

Donnie

Title: Re: New and confused
Post by Jonny on Apr 20^th, 2007, 9:01pm

on 04/20/07 at 20:04:50, pieface_49 wrote:

During a CH I will cuss and curse the darned thing.

Could you please refraine from using that language?

Title: Re: New and confused
Post by Sean_C on Apr 20^th, 2007, 10:04pm

on 04/20/07 at 03:11:15, jaketsy wrote:

But not all CHers pace and thrash around. (I for one may pace and stomp my feet at the beginning of an attack but once it gets really bad I'll usually collapse onto the bed, too weak and overwhelmed to be bothered with coordinating my legs, though I'll still probably be moving my head around or rubbing around my affected eye. If after an hour or two the pain eventually backs down a few levels and I'm exhausted enough I may then be able to get used to the pain and drift into sleep.)

Josh in my unproffessional opinion, I think you have something other than Ch going on. Getting "used" to the pain is not an option with a clusterhead. Its unbearable, relentless agony. Sleep is something most of us fear as a general rule.

Sean.............................................

Title: Re: New and confused
Post by lionsound on Apr 21^st, 2007, 7:18am

on 04/20/07 at 03:11:15, jaketsy wrote:

I have an appointment next Thursday with a neurologist, which I imagine is necessary for a definitive diagnosis (not to mention drugs which my GP said she could not prescribe), though I'm not sure how much of an expert he is in these matters, so I'm still trying to learn as much as I can myself.

This is the exact right thing to be doing! :)
I have clusters and migraines....it is possible to have both at once.
Make sure he gives you a script for Oxygen...it helps my CH and sometimes my migraines too...so it's worth a try.

please let us know how it goes.
be well and PF
-lionsound

Title: Re: New and confused
Post by jaketsy on Apr 21^st, 2007, 3:00pm

on 04/20/07 at 22:04:19, Sean_C wrote:

Even if it's on a lower level? Not all the levels sound unbearable as they're described on the KIP scale.

Even level 6 says 'Wake up grumbling, curse a bit, but can get back to sleep with out "dancing"' - Does that just mean that you can fall asleep after the attack is all finished? If so, well that's true for any attack at any level - you can always fall asleep when it's over. I thought it's saying that it's possible to fall asleep even while at level 6 - even though it is strong enough to wake you. (A little paradoxical, but I have been woken up by whatever type of headache it is that I have, only to fall asleep again, groggy and in denial - though I'm always reawoken shortly, to find it grown much stronger.)

If what you're saying does really apply for all CHs though, then this would be a great diagnostic.

Title: Re: New and confused
Post by Sean_C on Apr 21^st, 2007, 9:28pm

on 04/21/07 at 15:00:21, jaketsy wrote:

Even level 6 says 'Wake up grumbling, curse a bit, but can get back to sleep with out "dancing"' - I thought it's saying that it's possible to fall asleep even while at level 6 - even though it is strong enough to wake you. If what you're saying does really apply for all CHs though, then this would be a great diagnostic.

You could never sleep with a kip 6 Josh, I can't even use the computer when it reaches a kip 3.

Talk to your nuero and discuss with him everything you can, including what you've said here. Diagnosis for head pain can be a difficult thing to do, its little things that usually separate one from the other, so be as informative as you can.

Best of luck, and hope you get some painfree time soon.

Sean.............................................

Title: Re: New and confused
Post by E-Double on Apr 21^st, 2007, 10:39pm

Ma shlomcha Jake?

Hope you're holding up!

Gather as much info as you can and educate yourself as you are and have to be your own best advocate.

We have tons of info and support her so stick around and learn.

Good luck and stay positive!!!

Eric

Title: Re: New and confused
Post by jaketsy on Apr 22^nd, 2007, 3:42am

Thanks Chuck, Annette, Bob, Rosy, Donnie, Johnny, Sean, Lionsound, and Eric for your welcomes and your input. The things Chuck listed apply to me, Annette's a little less. It looks like whichever type of headache I'm finally diagnosed with, I will have some things which are characteristic of the other type. That's reality I guess, messy and hard to pin down.

The last few days I think the headaches have been slacking off. I've been getting them very strong at night an hour or so after going to bed, but besides that just a few weak ones later at night or in the morning. I started keeping a journal of them last week to show to my doctor. I only wish I had started a long time ago. The last episode I had was almost three years ago, and it's hard to remember the timing and details of ones before that.

Eric, ata m'daber ivrit? ma shlomcha?

Donnie, that's terrible about the alcohol. It's so frustrating when don't know what works and what doesn't and have to experiment on yourself, and even then it's hard to tell.

Thanks again to everyone for your support. Take it easy and be well....

Josh

Title: Re: New and confused
Post by Callico on Apr 22^nd, 2007, 3:48am

One major characteristic change from migraine to CH for me was the location of the pain. Migraines would be in both eyes and radiate through the top of the skull, but when they morphed in CH years ago it was definately one sided with the pain centered on the eye and temple. Sometimes I could say it throbs, but at a much more intense and often faster pace than did the migraines.

Another major difference for me was the regularity of the hits. With migraines I would get them infrequently, but they would last for days. Sometimes I could identify a trigger, but mostly not. With CH I can tell you what time of the day it is by how I feel. there are a few things that will trigger the CH for me at odd times, but they are not the same things that would trigger migraines. Also, when I was episodic with CH I would never get hit with a migraine while in cycle, and since I have gone chronic I have not had a migraine in the last 3+yrs.

BTW, Welcome aboard! Kind of got that backwards didn't I? Hope we can help.

Jerry

Title: Re: New and confused
Post by E-Double on Apr 22^nd, 2007, 5:53pm

on 04/22/07 at 03:42:49, jaketsy wrote:

Eric, ata m'daber ivrit? ma shlomcha?

Josh

Ani medaber katzat.
Beseder

Me'eifo ata ?

My mother's from Kfar Saba.
Most of my family is from Jeruslaem and tiberius going back centuries......many generations.

I'm first generation American.

It is damn hard for me to write.........
I can understand better than I can speak.

Be well brother!

E

Title: Re: New and confused
Post by ahhpoop on Apr 23^rd, 2007, 10:44am

holla homie. welcome to the crew.

-fellow nOOb

Title: Re: New and confused
Post by jaketsy on Apr 30^th, 2007, 5:43pm

Hi Jerry, the pain I get is also on one side only, specifically behind my right eye. Sometimes it will spread a bit to behind my right ear and then maybe to the back of my head, at the base, also on the right, though those are both incidental - the eye is the main thing. For me it throbs, sometimes more slowly and sometimes more quickly, but I think the pace increases as the pain does. I suppose the only good thing about having both CHs and migraines is that you know for sure how to tell them apart!

Eric, gam ani garti b'Nyu York, lo rachok mimcha, b'Setauket (l'yad Stony Brook). Asiti aliya lifnei asara chodashim. That's wonderful that your family goes back so far here. Im tashuv la'aretz, ha'ivrit shelcha betach tishtaper! tihye bari!

And thanks for the welcome ahhpoop.

I'm happy to say my cycle ended last week ... before I even got to see the neurologist. So I canceled my appointment and made another one for another two weeks from now with someone I heard about who's more of a specialist in this. So, hopefully I'll at least have a proper diagnosis before the next cycle comes around.

Josh

Title: Re: New and confused
Post by BB on Apr 30^th, 2007, 6:24pm

on 04/30/07 at 17:43:42, jaketsy wrote:

I'm happy to say my cycle ended last week ...
Josh

Thats GREAT ! Enjoy the painfree time, hope the remission is a LOOOOOOONG one . :)

Annette

Title: Re: New and confused
Post by E-Double on Apr 30^th, 2007, 8:59pm

I'm so happy for you Josh!!!!!!!!!!!

I live in Commack.
Not too far if you ever come back.

Look me up.

Be well and PF.

E

Title: Re: New and confused
Post by Rosybabe on Apr 30^th, 2007, 9:54pm

Great Josh!!

Hope you never get another cycle and stay PF forever!!