Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2002 Posts >> new here with questions
        
(Message started by: wannabe on Nov 6^th, 2002, 12:27am)

Title: new here with questions
Post by wannabe on Nov 6^th, 2002, 12:27am

Hello there,

I am a 22 year old female who was diagnosed with cluster headaches when I was about 13 years old.

I got a headache tonight, so, curious, I decided to key in a search on Yahoo for cluster headaches (I never really looked for information about them before).

When I first started having headaches when I was 13, I had to go to the doctor because the pain was so intense (like someone was sticking a knife in my head and twisting it). The headaches were short lived, but would occur several times a day. The doctor said I had cluster headaches. He said they were likely triggered by caffeine and nitrates and that they might just go away.

Now, I get the headaches very infrequently (can go months without getting them). They never last more than 5 minutes (usually only about one minute) and will occur a few times a day. The pain, while intense, is not debilitating. I can continue functioning when I have one (I always know they will be very brief). Sometimes, if it seems worse than usual or lasts longer than I expect, I just kind of grit my teeth, rub my temples, close my eyes and wait for it to pass.

Are there varying intensities for these headaches? Are their differences in intensity/duration based on gender? Age? Does what I get sound like a different type of headache than cluster headache?

I would appreciate any information. My heart goes out to all of you for whom the pain is so unbearable.

Title: Re: new here with questions
Post by Ted on Nov 6^th, 2002, 12:55am

As much as I loathe the idea of sending away a 22 year old chick, You don't have clusters. 5 minutes is more like Chronic Paroxismal Hemicrania (CPH) (Or EPH. Episodic yada yada) or SUNCT. Some dickhead may now flame me for not calling this yet another variant of clusters, but you'll do better searching your symptoms under those possibilites.

Title: Re: new here with questions
Post by Riccardo on Nov 6^th, 2002, 1:17am

...to be honest, Wannabe... Ted is right.
The lenght of the attacks are ABSOLUTELY not clusters related. ....and your doctor ay be a little .....dumb.... ;D

The good side is that the CPH is easier to cure than cluster headaches.... In the 95% of cases, it can be cured at well with indomethacine. A bit of caution: sometimes, indomethacine MAY develop bad side effects -read anaphilactic shocks-, then take the first dose under medical control!)

Good luck with it!

Ciao from Italy

Title: Re: new here with questions
Post by wannabe on Nov 6^th, 2002, 1:28am

Thanks for the info guys. When reading about CH on the internet, I definitely got the feeling I had been misdiagnosed... I just don't seem to fit the profile.

I've never heard of Chronic Paroxismal Hemicrania so I will look for information about that.

Take care!

Title: Re: new here with questions
Post by Mark C on Nov 6^th, 2002, 6:39pm

For the second time today I am going to agree with Ted. :o
Sounds like good advice to me.
Just don't seem to have the hallmarks of clusters. I hope you can find the cause and get some relief for your pain.
Good luck

Title: Re: new here with questions
Post by kim on Nov 6^th, 2002, 6:51pm

The symptoms you describe are not sympatico to cluster headaches. Perhaps try another neuro or doc and sit down together - really discuss the history and experience you have with this type of headache. I feel sure that if you pursue it with a knowlegdeable doc you will get on right track!

PFDAN. Kim

Title: Re: new here with questions
Post by Ted on Nov 6^th, 2002, 7:24pm

on 11/06/02 at 18:39:32, Mark C wrote:

For the second time today I am going to agree with Ted. :o

Well, let's go for the hattrick and make you need to change your pants. That term you said you liked? "Clusteropolis"? That's mine.

Title: Re: new here with questions
Post by Mark C on Nov 6^th, 2002, 7:36pm

LMAO..................

I am humbled..............good job.
Had I known I would have given credit where credit was due. ;D

After reviewing the archives may I add, keep up the good work. You ain't so bad after all. ;D

See ya

Title: Re: new here with questions
Post by kim on Nov 6^th, 2002, 7:38pm

Yeah.............he is. ;D

Title: Re: new here with questions
Post by Ree on Nov 6^th, 2002, 8:12pm

not true... ::)

Title: Re: new here with questions
Post by Ueli on Nov 6^th, 2002, 8:12pm

I disagree slightly with Ted and Riccardo ;D

As Dr Arne May explained at our Regensburg meeting, the neuro-vascular headaches display a more or less continuos spectrum from CH over CPH and SUNCT to hemnicrania continua. The difference is in the frequency of the triggers, and apparently the more often the trigger occurs the shorter are the individual attacks.

Since we outnumber the CPH people by 10:1 there is now danger that we get swamped by them (as we would be with meegrainers without jonny's ardent effort).

Therefore, I think we should accept and welcome our CPH cousins too to this MB.

Just my opinion,
Ueli

Title: Re: new here with questions
Post by Riccardo on Nov 7^th, 2002, 12:46am

oooops!
this time I failed to understand (just the sentence, I'm not disagreeing!)

UELI, could you be more clear (hmmm, sorry, but is just my poor English) about:"the neuro-vascular headaches display a more or less continuos spectrum from CH over CPH and SUNCT to hemnicrania continua.".
?
Thanks

Title: Re: new here with questions
Post by Sweet_Landings on Nov 7^th, 2002, 8:44am

Thank you Ueli! We (CPHers) may be the poor cousins, but it still hurts like hell! And there is NO other place to find support or information about CPH other than here and on the OUCH site.

From my understanding CPH is a rare form of CH. And from my experience, a person can have the pains back to back with no noticable relief between so that it seems as though the pain is lasting for hours on end. The pain can also reach the unbearable levels that CHers report that they exerience too.

It would be a shame to send the CPH sufferers away when there is nowhere else to go for information or support.

I appreciate you Ueli and Riccardo (per our earlier conversation). Thank you from the bottom of my heart!

Title: Re: new here with questions
Post by Ueli on Nov 7^th, 2002, 11:45am

Oh Riccardo, it's always the same. If I try to keep my posts short the message doesn't come across. I have to work on that. ;D

Arne May explained it as follows:
The chemical soup that makes up our brain chemistry is composed of more than a dozen neurotransmitters and enzymes. The concentration of all these components varies in a frequency of once per day or an integer multiple of it (2, 3, 4,.... cycles per day).

During a CH bout some sort of threshold is lowered. When the oscillations of the brain chemical crosses this threshold a CH attack is triggered. This explains two things: 1) The tendency of the attacks to come at a similar time each day. 2) Although the number of attacks vary from 1 to 8 (or something) per day, for each individual the number of daily attacks is fairly constant. (Add to this the seasonal variations to get the seasonal correlation of CH bouts.)

For CPH the triggering mechanism is the same. Only here the faster oscillations take precedence, and hence the higher number of attacks with a shorter duration. From this follows that the boundary between CH and CPH is not clear cut, it is sometimes so vague that even specialist like Dr Kudrow have difficulties to decide (ask MaryD).

For the SUNCT syndrome even higher frequencies take over, with up to 200 attacks per day, of a duration measured in seconds. If the trigger frequency becomes so high that individual attacks can no longer be distinguished there will be a (quasi) continuous headache: Hemnicrania Continua.

(Warning, not every "headache for days" is hemnicrania continua, of this less than 100 cases are known worldwide.)

I hope any clarity has been removed ;)
Ueli

Title: Re: new here with questions
Post by Drk^Angel on Nov 7^th, 2002, 3:52pm

I agree with Ted... The length of attacks resemble SUNCT or CPH/EPH more than it does clusters. They both are sorta like cousins of clusters. All three diseases are Trigeminal Autonomic Cephalalgias (TACs). I'd say it'd be okay for you to stick around and BS with ya, but I can't talk for others.

PFDAN................................... Drk^Angel