Hey. My name is Heather. I am a 25 year old female from Jersey. I've dealt with headaches since I was about 13. I thought at first, as did everyone else, that they were migraines. I'd be out of commision for days, meds didn't work. I'd hide in my dark room, no noise, food, lights, nothing. I woudl try to sleep just to get rid of them. Within the past 5 years they had gotten a lot worse and a lot more frequent. I suffer from about 4-5 headaches per week. They last all day. They start in the back of my head on one side near the bottom. They travel up to my eye. It feels like my eye is on fire and someone is pushing super hard on it from the inside. My nose gets clogged on that side of my head and my eye will swell and shut from all the tearing. Sometimes a cool soft washcloth can help the pain on the side of my face. But for the most part nothing helps. I was on Fiorocet for a while, and it soon died out and doesn't work anymore. It's really depressing because once I feel a headache coming on I know my whole day is shot. I will be completely dibilatated for hours upon hours. It has ruined a lot of jobs, a lot of fun times. Unfortunately to add up to all of this I have no health insurance until at least September. It just keeps getting worse and I'm at my wits end.... I feel so lost sometimes. And I know it's so hard on my significant other. We live together and he feels so helpless when it comes on because there is nothing he can do. I just hope he can see past everything and we can make it through this. Thanks for listening/reading.

I totally forgot to put in here.... About 3 months ago I had such a bad episode, my whole side of my face swelled up and I couldn't even open my eyes. I went to the hospital and got an MRI and they diagnosed it as a cluster headache. Gave my IV Imitrex and it helped a little but just took the searing pain away... the lrge amount of pain was still there. They just sent me on my way witrh a script for Fiorocet and let me go even though I was still in pain. So I'm lost at what to do now.

Hi Heather,

You should get a referral to a headache specialist as soon as possible, particularly given your headache history.

Hospitals, so will many attest here, are not the best places for headache diagnosis / treatment. Case in point, you are being "diagnosed" with CH and sent on your way with tension headache and migraine medication....

We are no doctors here and can't diagnose and although some of your symptoms are reminiscent of CH, several are not, in my opinion. Given that there are dozens of different headache types, you could be dealing with CH, something else or even with a combination of several.

Only a specialist will be able to identify your condition and put you on the proper treatment path.

In preparation of your appointment, I would keep a detailed diary of your attacks, their duration, what triggers them and what works and doesn't work to ease or abort the pain.

I wish you all the best.

You are in a part of the country where it should not be too hard to find a good headache specialist.

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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See the PDF article, below. It may be a bit of a technical stretch but it gives an overview of what is Cluster, treatments, etc. Get what you can out of it and it will help guide your discussions with the doc.

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Good advice...hard to beat a specialist, and what Neuropath said, get a diary going and be specific. If I described my earliest attacks, no one who knows anything about CH would think I had clusters. I described them as these horrible headaches that would knock me out for up to 2 days.

What really happened is an untreated cluster attack would ramp up from zero to 10 in about 15 minutes, crush me for about 60-90 minutes, then leave me feeling like a train had run over me, for up to 2 days.

So your diary, when they start, where the pain starts, how fast the pain builds, how high the pain builds, (The KIP scale on the left is a great tool for measuring pain),  how long it stays at peak pain, how fast it goes away, describe the pain, boring, stabbing, searing, pounding, are there more then one discernable types of pain, a throbbing with a piercing stabbing somewhere else, identify any triggers, smells, foods etc.

Trust me, you can't get too detailed, the diagnosis will be in the details. Do get to a specialist, there are hundreds of headache types, some even get lucky enough to have more then one type, :'( an ER doc simply won't have the information or the time to get the diagnosis accurate. Good luck.

Joe

neuropath wrote on Apr 6^th, 2010 at 11:17am:

Only a specialist will be able to identify your condition and put you on the proper treatment path.

I'll agree about the diagnosis part, but if you are diagnosed with CH, you'll likely have to play a big part in figuring out the best treatment. That shouldn't be too big a problem though because you can find a bunch of good info and advice on that right here.

For CH, a headache specialist should prescribe non rebreather hi flow O2, but probably won't (at least not without being asked), and there are other treatments many of us find effective that an MD won't be prescribing you.

This aspect that you've been experiencing more recently certainly sounds like classic CH to me: "It feels like my eye is on fire and someone is pushing super hard on it from the inside. My nose gets clogged on that side of my head and my eye will swell and shut from all the tearing..."

They gave ya the imitrex a bit late at the ER - if an imitrex injection is used at the onset of an attack, it is practically guaranteed to abort it, although a rebound could happen in 3 hours or so.

CH folk find O2 therapy a la the oxygen info link to the left of this page to be relatively affordable, and then there is the cluster buster approach that some find very effective and affordable - if they know the right people. This is a very good article on that subject:

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

HANG IN THERE HEATHER, there are lots of people here who have been at their wits end, only to find effective ways to manage, and to have gotten their lives back. You'll join the ranks soon.  :)

Like Bob said, you're in a good part of the country with HA specialists, neurologists and pain management specialists.  What part of Jersey do you live in?  I just copied and pasted some doctors from the OUCH site that are located in NJ.

New Jersey



Kevin Hunter
Somers Point



Michael Merkin
Edison



Frederick Weisbrot
Roseland



Loretta Mueller
Moorestown



Dr. Joseph A. Carluccio
Bloomfield



Dr. R. Michael Gallager

UMDNJ University Headache Center

Moorestown



Dr. William L. Cantor

Westwood



Dr. Melvin Vigman

Summit

Hi Heather,

I'm Dorothy from Whitburn in North East England.  I'm 62 and have had CH since I was 19.  Sorry you are suffering.  Whatever the diagnosis is, I just wanted to say there is a lot of practical advice to be had on here and on OUCH.  You'll need a diagnosis before you get to use oxygen and meds but the other weapons you can use are the things I would never have known about had it not been for these websites.  Red Bull is one of them - I have read about people making pots of strong coffee to have on hand but Red Bull is about 3 times stronger apparently and has been known to abort some attacks.  I have only just started to buy it but already it nipped a couple of attacks in the bud.  The other thing is you mentioned a cool soft washcloth helps - be a bit more aggressive than that Heather!  Nothing short of ice cold is any good for me, a bag of peas or crushed ice is best.  If you trawl through these sites you will pick up lots of gems of wisdom from the ones who know!  You can learn a hell of a lot from the chronic sufferers as they've tried everything and are more clued up than the doctors.  Good luck.

Love Dorothy

Hi Heather and welcome. 
If you DO have clusters, then this place, this site is the best place to learn about this condition, ask questions and get support.  There are so amny caing and helpful people here to help you.

No one here is a doctor and you've been given good advice on getting properly diagnosed.  That said...between all of us here we have had probably 1000's of years in collective experience in dealing with cluster headaches.  I've been chronic for 23 years.


Quote:

It feels like my eye is on fire and someone is pushing super hard on it from the inside. My nose gets clogged on that side of my head and my eye will swell and shut from all the tearing.

   This quote from you above is the only thing that screams clusters to me.   The rest isn't normally how CH presents itself so it will be worth your while to read around here,  gather info. that you think is important to your symptoms and take them to one of the Dr.s in your area.  You may have to go through several as CH is a reare condition and not many Dr.s are knowledgable.

Linda

Hay Heather
Just wanted to say all of the above, I have had some success with red bull and always keep a can handy . If you can't stand the taste other energy drinks work just as well as long as they have caffeine and taurin in them.

Hope you find help soon.

Nigel

Everything said here already is great advice. Explore this site and write down ideas you haven't tried and are willing to try for yourself, or can bring to a neuro when you do get insurance to cover the visit. O2 is relatively cheap even without insurance, and there are other alternative therapies that you can try, like Redbull and melatonin. It's all here and it just takes some time to research it all. Hang in there! :-[

Where in Jersey are you?

If close to Philly go to Jefferson Headache!
If closer to NY take the schlep to Stamford CT and get your tushie to NECH to see Dr. Sheftell.

good luck

All I can do is echo what everyone else has suggested.  Get to someone who knows and understands cluster headaches -- not a GP or an ER doctor, but a neurologist who specializes in them or a headache center that has treated hundreds of patients using a range of therapies.  We're all different -- Topamax seems to work for me when I get clusters, but other people hate it.  Oxygen doesn't do it for me, but it works for some people.  So you need to find out what works for you.  But even if you have to spend a month's salary on seeing a specialist, I promise it's the best investment you'll ever make.  You don't deserve to be in pain all the time -- you deserve to have a "beast-free" life!