Hi everyone,

I'm a 26 year old male, and I started experiencing what I'm told is cluster headaches 5 days ago. Every day for the past 5 days I've had an extremely bad headache strictly on the left side of my head, with the pain centering around the back of my eye. The headaches always come at either 10am, or 1pm. (3 times at 10, 3 times at 1, one day I had headaches at both times). I've seen my GP and was diagnosed with cluster headaches. The day I had 2 headaches in one day (yesterday), I went in an ambulance to the emergency room because the pain made me very hot and nausious. The doctor there said I sounded like a textbook case of cluster headaches. I told him that Tylenol extra strength wasn't doing anything for me, so he recommended extra strength Advil liqui-gel for migraine. I tried one today with my headache and it seemed to make no difference... After my headaches in the morning, I usually have a slight headache and a bit of numbness for the rest of the day. Also, I've been feeling really nauseous at night as well. I don't throw up though. I'm assuming I'm getting the nausea from all the pills I've been taking (usually never take pills). The recommendation I was given to get rid of these headaches was to de-stress (My body reacts badly to stress, I have a history of GAD, and at the moment my life is quite stressful), so that makes sense to me, and I can do that. But right now, with these brutal headaches everyday, and no relief from medication, I'm scared and feel alone. If anyone can offer advice or sympathy it would mean the world to me. Thank you!

EDIT: (for more information) I'm in Ontario Canada, my headaches last less than an hour and are usually 7-9/10 on the pain scale.

Hi JPO

What you need to do is to work with a headache specialist to get a definitive diagnosis which will open up the path to getting the correct treatment. This is a complex area of medicine as there are multiple other possible causes of headaches that mimic cluster headaches, so it needs someone with the appropriate skills and experience to get this right.

Hi & Welcome

  Sorry you have to be here, but very glad you found us.  You will get more empathy than sympathy here, as we truly understand the pain of CH (we refer to as "the beast") . . . not just the pain, but the fear of the pain.  We've all been where you are right now . . . and we're here to help.

  You really need to see a headache specialist . . . there's a list of recommended (CH savvy) docs on the "OUCH website" (link on left)

  You will need both preventative and abortive meds if it is CH . . . and it sounds like it . . . but a specialist should order CT/MRI to rule out other potentially more dangerous conditions that sometimes mimic CH . . . if it's CH, they'll come back "normal".

  Bob will be along shortly with some links you need to read and some you need to copy and take to your doc which outline effective treatments for CH.  He can prescribe 02 (read the "oxygen info" link on left), which is the first-line abortive for most of us . . . if used at the first sign of attack, most can kill the beast in minutes before he gets to the "dance" stage" . . . if insurance won't cover, it's CHEAP even if you have to pay cash . . . I'm chronic and it's been my only abortive for 10 years (since my wife found this site for me)

  Identify your triggers.  Alcohol is a major trigger for most of us, petroleum products, exhaust fumes would trigger attacks quickly for me.

  Sounds like you have a journal . .. keep it up . . . list time, duration, pain level (use the kip scale), and when next you see a doc, take your journal and a copy of our pain scale with you.

  Go to your local market right now and pick up some energy drinks like Red Bull or any of the others that contain 1000mg taurine (I like Rock Star orange . . . which has two servings per 12 oz can).  Slam one down at the very first sign of an attack.  Caffeine (coffee is our friend) & taurine are both vaso-constrictors which is what we need.

  Did your doc give you any info on how CH works, where the pain is coming from?

  Read Batch's thread "123 Days PF and I think I know why" on the "Meds, Therapies, Treatments " board.   Refered to as the D3 regimen, it's an anti-inflamatory regimen using all over-the-counter supplements (calcium-citrate w/magnesium, omega3 fish oil, D3, and zinc.   After eleven years chronic (when I came here was having 6-8 daily, plus night hits), I have been pain free since mid November.

  You've got a lot of reading to do . . . and questions to ask . . . fire away . .  you've just hit the motherlode of CH info/caring/sharing and we'll do our best to get you sorted out and having some control of this beast of ours,

    Be Safe,   PFDANs

      Richard

Probability that you have Cluster but there are a number of conditions which mimic Cluster and which are rathe serious. Hence, need for a skilled doc to sort thru the jumble--headache specialist being the best bet in terms of knowledge/skill/experience.

Stress may a trigger for some but is not the cause. Core issue is a jumble in our hypothalamus--nothing which be cured at this state of knowledge. So, good mix of appropriate meds/other treatments will give a high chance of good control.

Learning about them is a primary protection. Explore the buttons, left, starting with the OUCH site. Then,




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]
====
Print the PDF file, below. These are the most commonly used meds for Cluster, along the evaluation of effectivenss. Use it as a tool to discuss options with the doc. If he isn't working from this group, need to reconsider his skill.
=======
You can print out relevant sections from this pub, written by one of the better headace docs in the U.S.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
ALL NEW!! HEADACHE 2010-2011
Robbins Headache Clinic

Free, 50-page. Covers all major headache Dx and
related issues.

In a PDF file.
===========================
Avoid OTC pain meds (you experienced the limited knowledge of the ER doc---all too common there.) Pain meds will not relieve and, with much use, will increase frequency of attacks. TOTALLY avoid alcohol as long as you are having this kind of headache; avoid solvents and potent cleaning agents--they will trigger Clusters for many, especially alcohol.
============
Read here regularly. You will find youself in many messages and gain comfort in seeing that the vast majority of us live good lives and learn how not to be afraid.

Keep us abreast of your progress.

---

Hello and welcome JPO,

You have certainly come to the right place for help and support.

2 things stuck out in your post.


Quote:

I told him that Tylenol extra strength wasn't doing anything for me, so he recommended extra strength Advil liqui-gel for migraine. I tried one today with my headache and it seemed to make no difference

The doctor who told you this is NOT very educated about cluster headaches.  What he suggested is like throwing spit wads against a battleship.  If he knew what he was talking about he'd have given you a script for a preventative like Verapamil and a abortive such as oxygen or Imitrex.  (Imigran, where you are)

The other thing that struck me:


Quote:

The recommendation I was given to get rid of these headaches was to de-stress

Was this from the same doctor who told you to take Advil?   de-stressing is an overall good thing to do for the body, but it's hard to do when you're writhing in pain during a KIP scale attack.  De-stressing won't help with CH anyway.  A good treatment program will.

I had to laugh a little when I read your post. Your doctor seems to know nothing about CH. I would strongly urge you to go to a headache clinic. If you look in the links there are many great clinics that specialize in headaches and will get you on the correct treatment for this. I myself had to see 5 doctors before I was diagnosed in a HA clinic. Also o2 o2 o2 o2 and probably get used to needles

First of all, thank you guys so much for the warm welcome and helpful resources. I've been doing a lot of research.

As I'm only on day 6 here with these headaches, I'm going to be patient and see what happens. The headaches seem to be easing up. Yesterday, I only had 1 late at night compared to 2 for the previous days, and today I haven't had any yet and am back to work. I've seen 2 doctors and I don't have any symptoms of anything immediately serious, so I'll wait a bit to see what happens. I'm not even 100% sure these aren't just migraines or some other kind of headache yet, but they sure do seem like cluster headaches!

Anyway, if these continue, or go away then come back, I'll have all the info ready for my doctor. Thanks again for the support, I'll keep you updated.

EDIT: Forgot to mention, I tried the redbull last night when my headache was warming up but it didn't seem to work. Just made me wired and anxious. As I've said I have a history of GAD. Not sure how familiar you guys are, but it can mimic almost every illness in the book. I wouldn't be surprised if the headaches were just another annoying symptom on the long list of GAD symptoms I've had. We'll see.

I neglected to mention: when starting a new experience of (what may be) Cluster, it's very common for symptoms to vary widely before settling down to a stable picture. This shifting may go on for months, even a year or more.

That being the case, I'd suggest that you see a good headache doc now rather than assuming the current bout will stop and not recur.

The advantages: establishing a working relationship with a new doc even if you don't need regular attention right now; developing a treatment plan now so that you can put it into motion at the first sign of another cycle starting (beats having to wait weeks to get an appt).

It's so uncommon to have only one Cluster bout in a lifetime that the odds are that you will be starting this whole process in the near future.

Thanks Bob, I had a feeling someone would say that.

Thanks for giving me the push. I've contacted a local headache clinic about an appointment. I've also made an appointment with my optometrist to see what he has to say. Don't know if that'll help, but it couldn't hurt right?

EDIT: (Yeah, I do this a lot). Just wondering if my other symptoms seem typical... The rest of the day I have a very mild headache, face is numb (I have feeling, but it's a numb sensation), and my nose is dry and stuffed. Also my eye feels like it's dry. Sound normal for clusters? Oh, and I'm thirsty as hell. I'm drinking water like crazy. I also feel like I'm getting used to the headaches. Or they're getting less severe. I only had a 10/10 once, and I went to the hospital. Rest of the time, at it's worst, it feels more like 6-8.

JPO wrote on Apr 23^rd, 2012 at 4:06pm:

I've also made an appointment with my optometrist to see what he has to say. Don't know if that'll help, but it couldn't hurt right? EDIT: (Yeah, I do this a lot). Just wondering if my other symptoms seem typical... The rest of the day I have a very mild headache, face is numb (I have feeling, but it's a numb sensation), and my nose is dry and stuffed. Also my eye feels like it's dry. Sound normal for clusters? Oh, and I'm thirsty as hell. I'm drinking water like crazy. I also feel like I'm getting used to the headaches. Or they're getting less severe. I only had a 10/10 once, and I went to the hospital. Rest of the time, at it's worst, it feels more like 6-8.

No, it couldn't hurt particularly if you need an eye exam anyway. But it isn't likely to help. And before you go getting any teeth pulled, we've gone down that road before and it's a nonstarter for us.

The symptoms you describe for the rest of the day do not sound particularly related to clusters as far as I'm concerned. Still, others may follow who say that's just what they experience. So much is individually biased when it comes to CHs. Get that appointment soonest. It's a bad idea to self diagnose any pain, never mind head/eye pain. Too many other things can be in play. God bless. lance