I am 20 years old, and last Tuesday night I very suddenly came down with what I thought was symptoms of a migraine. I've had migraines in the past, and I've always dealt with them with Excedrin. Due to my recent *severe* allergic reaction to acetaminophen (tylenol), I can no longer take excedrin. I prepared myself for a few days of migraine pains, and took some ibuprophen and laid down in the dark with a cold cloth on my head. By the next day I was so bad I was in the emergency room. This attack hit me so quickly I couldn't even yell for help. I didn't know what was happening, but I knew this wasn't a migraine. After waiting 9 hours in the emergency room, they gave me a dose of morphine and sent me home with painkillers. I slept through the night. The next day, about the same time (2pm) the attack hit me again. It seemed even more severe this time. I was back in the emergency room at a different hospital. They did a CT scan and put me on an IV of migraine meds. I did research at home, and it seems like these could be cluster headaches. I called my PCP and explained all my symptoms. She wants me to see a neurologist, but for the meantime, I'm taking oxycodone for the pain. I guess what I'm trying to get at, if these are cluster headaches, how am I supposed to live like this? I am completely un-functionable during these attacks. I've been out of work for 2 weeks, because the pain is so unbearable. Is there any treatment for this, or am I doomed to suffer the rest of my life? How often do they occur, and when will they go away? Any information or opinions would help greatly. I am so scared to deal with this, and it's only been 13 days...  :-/

You need to see a headache specialist.  We're not doctors.

                    Potter

I understand that, guess I'm just looking for some more information from people who actually suffer from them. I have an appointment already made.

Welcome!

A good neurologist will diagnose what headache type you have. There are so many and each has it's own treatment options.

If you do have clusters, I can assure you there are many treatments that allow those of us that suffer to lead productive lives.

Take the cluster quiz...the link is located on the left hand side of the page.

Bill

If it is CH, no you're not doomed to suffer the rest of your life!

There are effective treatments and you've found a really good place here to find out about them.

How often they occur, and when they will go away varies widely, but the majority of us CH'ers are episodic, which often means we experience them something like 1-2 months out of the year. Remissions lasting longer and longer as we age is not an uncommon phenomenon, and is something to hope for.

Hi Scubaheather!
Welcome!
I'm so sorry you're having such a hard time...

I don't know from you description if this is CH or not, but you're taking the right steps in planning your neurology appointment... 

Please take heart that if this is CH - there is help and there is relief!  There are definitely things that you can do and medications that will help!

In the meantime, prior to your neuro appt, can you ask your doc about imitrex (sumatripan) injections or triptan nasal spray?  These are much faster acting than the tabs which often don't work for CH.  Your doc might be hesitant to prescribe oxygen which is a staple for people with CH, but perhaps she'd be more willing to give you some of the med above to try...

Please hang in there and good luck!!!!!

Please do write after your appointment with the headache specialist and let us know how it went. In the meantime, read further on this site, especially the links at the left. Go to your appointment armed with facts from a headache diary, including time of day, frequency of hits, KIP levels of hits, any interventions tried and their effectiveness, that kind of thing. This will help your doctor establish a baseline that is crucial to diagnosing CHs. Also, why not try the OTC abortives and preventatives? Like slamming a caffeine/taurine energy drink, and 9-18mgs of Melatonin at night? Absent O2 (although if you have CHs you should really push for that and bring literature available on other links) I have been caught without O2 in the past and have hyperventilated through rapid deep breathing. Not ideal, but it helped. In the meantime, good luck and God bless! lance

Too many neurologists lack training/experience in dealing with complex headache disorders. Please give us a report of what his treatment plan is.

Starting learning!




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]
========
See the PDF file, below.
===


A new (for me) site which is worth your attention: medical literature, films, plus the expected information
about CH.

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

---

Hi Scubaheather.  Is that like scubasteve??

I second what everyone said prior to me, with a few modifications.  In the end we only offer suggestions, it is you and whoever you choose to help that will make the decisions.

Your first point first.  Yes, you can lead a great life with ch.  I got mine at 18 am 44 now and in that time I have graduated college and had 2 successful careers so far.  Hang in there it will get better.  You are in the hardest phase right now. >:(

So yes, clusters are hard to pinpoint in the first few weeks of pain.  It may take years for them to fully show themselves.

Caffeine for the daytime hits, right at the onset of the attack.  People like the action of redbull etc., I can do fine with coffee.  Nighttime attacks?  take melatonin right before bed, read up on the dosages on this site.

Get oxygen from your doctor as soon as possible.  If your doc won't prescribe it, get welders oxygen and order regulators and masks online.  The oxygen section of this site will guide you.  Don't scrimp on low-flow oxygen, it usually won't work for us.

I know this is a lot.  But here is the biggest and best:

Go to clusterbusters.com and look at the treatments they use.  I went from getting my ass kicked for 2 months each year to having 2 total attacks in the last 2 years.  This stuff is strong and effective and in the next 2-4 years you should be able to get a version of this legally from your doctor.  Don't blow it off because it isn't legal, half your friends are taking it and they don't even need it.  I know I made an assumption, half my friends were when I was 20 but not me.  I should have been ;).

Anywho, don't despair.  Get a decent diagnosis and counterattack!  Don't let this thing beat you and don't waste a second on depression!  You got ch.  Too bad, so do we.  (please note the tough love as I am usually not like that, supposed to be motivating) Hurts like hell but we can get you mostly pain free for the rest of your life.  You'll have to do most of the work. :)

Good luck!!!!!

--Shaggy :)

You've been given a boatload of great advice. The headache diary Wimsey talks about is a valuable diagnostic tool, the more details you offer to the neuro, the better a chance of a correct diagnosis the first time around.

Bob's PDF files are golden, they offer the latest and greatest in research for CH. Read them, and learn them! ;)

As others have mentioned, CH sucks! But by no means is it the end of the world. I completed a 30 year law enfforcement career, have beem married almost 28 years and raised 2 beautiful daughters to adulthood, all done between CH hits!

There are medications which will reduce the number and the intensity of  the hits, and abortives such as oxygen and imitrex, which will stop an attack in less then 10 minutes.

Wishing you luck in your diagnostic journey. We'll help you every step, but finding a headache specialist neuro, will certainly go a long way towards getting you some pain free time!

Joe

Wow. Thank you all so much for the information. It's really helpful, and it's definitely nice knowing there are a lot of other people out there with this and willing to help. I am going to call my doctor and ask about the imitrex. I believe that was one of the meds they gave me in the ER, and it did seem to help a bit. These headaches just seem so severe, and I'm basically dibilitated when I get them. My roomates are trying to be sympathetic, but I think if I weren't the one suffering through them, I'd think that person were over-reacting. Anyways, thanks to everyone who responded, and I will definitely keep you all updated. :)

Welcome Heather, you have gotten some great feedback so far.  Just read everything possible and don't rely on pharmacuetical drugs especially that oxycodone.  That WON'T help a cluster, just get you hooked.  Matter of a fact, opiates in general won't help clusters.  Oxygen is the abortive of choice.  If you're looking to go totally natural, check out START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE for effective preventative treatment.

All the best!

Chad

Welcome.   Everyone here suffers from this condition or is a supporter to someone who suffers, so you have come to the right place for information as well as support.

No, none of us are Doctors here but so much of our information is from trusted Neuros and headache specialists who speak at our conventions and offer us insight and education on medications, treatments and on-going research.

Dr. Peter Goadsby is our very best Ally and among the world of knowledge he has shared with us, over the years is this, and I cannot stress it  more strongly.  "We have to be our own best advocate, knowledge is power with this condition" 

I'm glad you found us and we'll all try to help you in any way we can.  As painful as these are, there IS a way to control them and live a normal life.  People just have to chane some things around while they're in cycle, but we DO go to work, school, raise families, and live between the hits. 

If you indeed are diagnosed with CH please remember that not only will it not kill you...it doesn't even do any collateral damage to the body.  I've been chronic for 23 years and I'm still here.   ;)

Linda

When you call the doc and ask about imitrex, the doc may whip out the prescription pad and want to scrawl "imiterx pills" on there.

That is a very common and pretty big mistake!

Injections are the most effective form of imitrex. Nasal inhaler also works for many of us, and could have the advantage of being used even right in a classroom, or stepping out into the hall for a second.

Docs often don't realize that the pills are for migraine and are usually too slow acting  for CH. You need to catch the CH hit as close to onset as possible.

[Edit/Afterthought]: I agree with Chad about clusterbusters.com

scubaheather wrote on Aug 23^rd, 2010 at 12:46pm:

My roomates are trying to be sympathetic, but I think if I weren't the one suffering through them, I'd think that person were over-reacting.

Sometimes I think this is the hardest part of being a clusterhead.  People that don't experience the pain can never know just how bad these things can be.  It took forever for my own wife to figure it out.  Once she suggested that I was "just real sensitive to pain".  She's my best supporter now.

Don't get frustrated with them.  You will, but try hard not to.  In the mean time you can vent to us.

Good luck and let us know what the Neuro has to say.

-Dennis-

Heather - between now and when you see the Neuro, please chart your headaches - here is a headache diary you can use (by the way this is from the ouch-us.org website where there is also alot of good info
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

I see you are in Springfield, MA. I travel there monthly for work (just got home Saturday). If you would like to meet for coffee next month let me know and I'll set something up. I am not a CH-Sufferer, but am a Supporter to my husband (Guiseppi) and of course the others here too. I think just having someone to talk to that "gets it" helps.

Keep reading Heather - we're here for you.

Christy

One more thing Heather, here's a link to a document for others that can help explain CH. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Do let us know how the appt with the Neuro goes. Be sure to print out the PDF that Bob Johnson gave you and take with you -

Christy