Hey, I'm pretty new to the site. Been coming here for a few days but I didn't want to join up until I had a concrete diagnosis but a question came up today that I wanted to ask.

I basically found out about Cluster Headaches from WebMD after thinking I was dieing on the 20th. I went there, checked my symptoms, and googled Cluster Headaches and found you guys. Reading about the symptoms here and elsewhere it definitely sounds like what I have, so I went ahead and made an appointment with a doctor to see what he said. Had my appointment today and without me telling him he suggested it sounded like cluster headaches. I got an MRI and blood drawn and all that good stuff to make sure I'm not going to keel over next week from an exploding head. He gave me a script for Fioricet (tension headaches) and told me to take it when I get a headach and see if that helps any and as long as nothing urgent appears in the MRI he'll see me in 2 weeks.

So that's where I am now in my quest for a diagnosis, On to the actual question :P

I'm only 21 and if I do have CH this would be the first cycle I've ever had. I had my first attack on the 20th, it has also been the worst I've had. For a week I had 3-4 a day. The worst being an early morning attack around 7-8AM. If this was not a MWF (I have an early class those days) then this attack would wake me up. MWF I did not have an early morning attack. I get up at 6AM MWF so I definitely didn't sleep through them (LOL...if only I could)

Wednesday (yesterday) I got to sleep in because of the weather canceling classes. I woke up late, headache free and have been headache (of the cluster kind) free since then. This would make my total cycle exactly a week long. Is that too short? Everywhere I read says cycles last at least a few weeks. Does anyone here have cycles that short? Are 2 pain free days enough to say my cycle is over? I know every situation is different but even then there are certain boundaries that you have to stay in to have a specific condition. I'm just wondering if I have crossed over.

I realize the MRI could show something and then all of this is irrelevant, but I'm going off the assumption that I'm not dieing yet.  ;)

I had one headache on Thursday and Friday, I was headache free on Saturday and Sunday, I had one headache Monday, and two headaches Tuesday. Wednesday I had no headaches, and today I had one.

By all means, I hope your cycle is gone, but 2 days of no headaches doesn't mean much to me. I'm not sure about the others here. Although, my very first cycle was only a week and a half.

I hope and pray your cycle is already over.

The first one that we BELIEVE I had was when I was 16. It lasted for 2 weeks. I had other medical problems, and was on medications that also masked the problem to a certain extent. I had an MRI to make sure I had no tumor, and a day or two afterwards the cycle ended. I didn't think anything of it.

Until a pain in the left side of my face, specifically near my eye, began last year...

EVEN if the fioricet works for you, if the headaches continue, get oxygen, and get on a preventative. The beast likes to morph.... :/

PFDAN.
Mystina

Hi Stoke & Welcome to Clusterville

 Since you've been reading the forum, I'll assume you've read the "cluster traits" and "cluster quiz" links (on left).  If not, please read and let us know how you relate to same.

 Have you gotten the results of your MRI yet?  If it's CH, it will come back "normal".

 Also, if it IS CH, Fioricet won't do the trick for you.  CH attacks can  ramp-up so fast that anything in pill form takes too long to take effect.  You will need a preventative (like Verapamil and/or Lithium . . . . there are several) and an abortive (OXYGEN should be first on the list) and possibly Imitrex inhaler or injectible.  I have some artery blockage and high cholesterol, so can't use Imitrex . . . 02 is my only abortive . . . can usually kill him in minutes if used early-on in the attack.

 I'm a head-trauma CHer . . . my attacks started 1/01 after I nailed my noggin.  I was under regular doctors care . . . had all the tests, non-working meds, but didn't have a name-for-the-pain til my wife found this site for me 2/02.  At that time I was having 6-8 attacks daily, sometimes 3-5 at night . . . most 20-45 minutes . . . some 1 1/2 - 2 hr+ horrors. . . . was a basket-case.  This place gave me the info to take to my doc and get my life back.

 If it is CH, I hope you are one of those that has infrequent short cycles.

 Do you consume alcohol?  If so . . . STOP! (when in cycle anyway) . . . is a major trigger for most of us (was/is for me).

 Start a headache journal.  Note time of day, duration, pain level (see "the kip scale" . . . link on left) and take with you when you see your doc.

 Keep reading, keep asking . . . you've found the motherlode of CH info/caring/sharing.

   Be Safe,   PFDANs

    Richard

If, at your next appt, you get a firm diagnosis of CH--then you should be given a treatment drawn from the following.

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

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

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

Suggest you print out this entire article for your learning benefit.

 
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 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]

 

Welcome...sorry you needed to find this place.

One of the most frustrating things that I've found with my CH is that there really is no discernable pattern.  Some years I'll have daily CHs over 4-6 week cycles in spring and winter, and then other years I'll have off-and-on CH over 2 months in the fall.  Absolutely no way to predict it.

So, like others, I hope that you've seen the last of the CH for a while, but my advice is hope for the best but expect the worst.

Read up, be assertive with your doc to get what you need, and don't assume that he/she knows it all...many don't, and you can find a wealth of info on these pages to print out and take with you.

Good luck!

Scott.

Well it's not over yet, having one now but it's fairly benign. Wouldn't rank it more than a 2. Still, it's enough to let me know I'm not out of the woods yet. I don't drink though, so nothing for me to worry about there. Still haven't gotten the MRI results yet which I'm hoping is good. They'd probably would have let me know by now if I was going to die next week.

You guys will probably laugh, and I'm sure this will change the minute I get hit hard, but I'm usually pretty adverse to taking any kind of medication. The worst attack I've had was only a 7 and signs point to getting better at the moment rather than getting worse so for now I don't plan to ask for any oxygen or a preventative next time I see the doc. He might prescribe something anyway but I'm not planning on going out of my way for it (yet). I do plan on continuing my journal though and thank you for the links, I'll definitely need something to show him if I start demanding specific treatments.

I think I was about 23 when I started getting CH's. I'm now 44 and still getting them...though the pattern has changed over the years. I started out 3-4 per day during the day, while at work too! (the worst). I'd have it every singel day for about a month...then gone! Now, over the years my CH's have migrated to nocturnal. Get awaken out of a dead sleep. Now they are 1-3 per night, sometimes I might get a night off but they will still stick around for about a month. Follow the advice you get about keeping a log, that will help your doctor diagnose too. Oh and I had a MRI and bloodwork too...all normal "You're Healthy" the doc would say...yeh right okay!  :-/

My first cycle at age 20 was 4 headaches over a 5 day period.