One month ago my boyfriend forced me to the ER after waking at 4am screaming from head pressure, after an hour of rolling on the floor we went to the ER. 2 Hospitals later they said it was a headache go home. 2 weeks later got a appt with neurologist..but not till Jan 6th! 4 days ago I had 2 "attacks" of this pressure, after the 2nd my boyfriend again made me to to the ER this time I was admitted for 3 days. Yesterday I was discharged with "its a headache, nothing is wrong with you...maybe its psych issues, talk to someone". I wanted to cry. There is something wrong, just because your tests aren't showing anything does not mean I'm making it up.
I have been looking into different causes of headache/pressure and cluster headaches fit a TON of my symptoms, the pain, sudden onset. Some don't but most do..plus I already have had neuralgia issues with the trigeminal nerve(kinda wondering if that might be a factor).
But I'm SO lost who to talk to. It seems as if most Dr.'s think I'm crazy and waiting till Jan to see a neurologist-don't think I will survive. I'm making an appt to see my primary care Dr in a few days but...idk..I feel so lost...
People think b/c I'm younger(24) I'm more stupid and don't  understand a lot, but I'm also a paramedic and I do know a lot about heath care, thats kinda my job...I'm not the average Joe when it comes to this type of thing..idk...
Am I the only one who's had major issues with getting a diagnosis?

We know how you feel!!!

Print out the Cluster Traits and Medical info from the links on the left, bring them with you to your regular doctor and have an extra copy on hand in-case you wind up in the ER again!

In the Mean time...Whilst you're waiting to get into the Neuro or your regular doc here are a few over the counter helpers:

4-Way Nasal spray or Dristan 12 Hour Nasal Spray helps with the annoying congestion.  ** Note ** Do not use this more than 3 days in a row!!  It can cause severe sinus problems.

Taurine and Caffeine drinks (RedBull if you like it) to help prevent a hit when you feel one starting.

Melatonin or an Allergy (Zyrtec aka cetirizine works for me) pill at night before bed to help avoid night time hits.

The herb Kudzu has helped a few as a prevent.   

Deep breathing through the milder hits can help too.

Hot/Cold Compresses Depending on your preference can help as well.

Make sure you start a headache journal, you can make your own, here's what you will need to note on it.

Day/Date:      
Time of Day of CH hit:   
On pain Scale 1-10 10 being highest what is your pain at?
Duration of Headache:
Symptoms that come with your Headache:
What, if anything you tried to get rid of HA:

You can make up your own HA Journal and if you get more than one in a day use 1 piece of paper/page per day, or you can use MS Excel for this.

Hang in there you are stronger than you think!  [smiley=hug.gif]

I'll ignore the "Average Joe" comment....my name is joe ;) Ginger's given you some great advice, but you're sitting on a gold mine and don't know it yet!!!!!!

Oxygen. If you are suffering cluster headaches, there is a really good chance you can abort them in 6-8 minutes by huffing oxygen. Read the oxygen link on the left. The key is to get pure oxygen to the lungs, as fast as you possibly can. No outside air, no exhaled air, hyperventilation is the most rapid way to abort. I went from 90 minute rides to 6-8 minute aborts, 32 years with CH and nothing comes close to 02 for speed of abort, cheap, and no side effects. on or off cycle I have an 8-pack of E-Tanks in my garage. Off cycle they gather dust, it's a beautiful sight, on cycle I have one always with me. Just retired from 30 years as a deputy sheriff, on cycle there was always an e-tank in my cruisers trunk!!

I use on old paramedic push button valve a buddy gave me, peeled off the plastic mask and breathe right off the stone. Otherwise use a Non Re Breather mask, with at least a 15 LPM flow rate, preferably upwards of 25.

Welcome to the board, we'll help you any way we can. Is the neuro you're going to a "headache specialist" neuro? I ask because it's like going to a divorce attorney for your murder charge, he'll know a little bit, be able to talk the talk, but won't know any specifics. Headaches are a world unto themselves and really require a specialist for your best odds at an accurate diagnosis and up to date treatment regimen.

Joe

Quote:

Am I the only one who's had major issues with getting a diagnosis?

Nope. There are many who go years without a proper diagnosis.CH it seems is hard to diagnose.Take the quiz, hope you dont have it.
all the best
the bb

Unfortunately the extreme negligence you describe - headache specialists requiring people with the most severe pain known to medical science to wait months for an appointment - is standard practice.  >:( This pretty much boils my blood, and whenever I hear of it (which is a lot!) it makes me want to advocate calling these scum bags out by name.  :(

If you do have CH, well then yeah - what Joe said about exploiting your paramedic-ness in order to be able to hyperventilate O2 with a demand valve right at the onset of an attack and watch it just fade right away.

Of course we're not qualified around here to go offering people diagnoses, but curious to know what CH symptoms you do and don't have?

Britt, I'm sure a lot here have had similar starts, not getting treatment at the hospital, waiting for that neuro appointment to "get it all straightened out". Unfortunately, that first neuro appt may be disappointing too unless you get to a headache specialist. Many neuros have only read about cluster headaches, and other rare forms of headaches. They just don't have that many opportunites to see the various headache syndromes whereas a headache specialist likely has seen them all at least a few times. I think you up your chances of getting the proper diagnosis and treatment considerably by getting in to the specialist. I also found that headache centers don't make you wait quite as long.

Hang in there and try the techniques mentioned above. They do work for many. -Chris

Many neurologists lack training and experience with the complex area of headaches. If you have the option, find a specialist.....
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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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Reagrdless of the doc you finally see, assuming you get a diagnosis of Cluster headache, the treatments you are given should include some the items below. IF not, get back here quickly!

Print out the PDF file, below.
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Read this excellent article as an introduction for your benefit. You will quickly understand that good knowledge of CH is a major defense against despair and poorly trained docs!




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]
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Explore the buttons, left, starting with the OUCH site. Lots of internal links.

And just read, read, read here. You will find support in knowing that you are not alone and from the experiences  of many others.

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Oh yeer, for 10 years I was told it was tension headache. pfff.  Then when I did eventually get to see a neuro he told me it couldn't be CH cos I was female.  Arrrgh  He was very slow in giving me a correct diagnosis - I didn't give up tho', just kept going back to him and telling him the symptoms until he couldn't deny it any longer.

You've been given some great advice,  if I was you I'd try melatonin, energy drinks and push push push your doctor for 02!  As well as 02 I use a hot water bottle on my head and really try to breath thru the pain - I know that just sounds crazy because the pain is insane!!! but the more calm you are able to remain the better it will be.  During a hit I try to concentrate on it, remove my self from it like I'm observing from the outside - feels like my head is filling with liquid pain.... and then eventually, slowly it subsides and I pass out  :-/ 

I do wish you all the very best with your GP.  Let us know how you get on.

Kate 

Good luck, don't give up.

Hi, welcome to "female hysteria syndrome" as someone else on this forum once called it. A woman with a headache is seen as a psychological patient. She doesn't fit medical parameters they're familiar with (I'm a paramedic too). I was told being female I didn't have CH. That went on for 20 years! The alternative practitioners (acupuncturist, homeopath, chiropractor) we're just as bad. Probably not many on this forum got diagnosed in a timely way. We've had to take the bull by the horns. Lots of info here. Hope you get the help you need here.

I found looking at the survey results on this site very validating. Best of luck!

Welcome!
Sorry you are having so much trouble,but glad your here! This is a great place to get advise and ask questions! I as many people here have gone miss diagnosed! Hopeless is a feeling we have all had! Gather all the info you can, and definitely do the headache diary...Go into ur appt.ready! It did help me, So I'm hoping it will help you! I hate to say it but sometimes you have to be a bitch about it! (thats the best way i can put it)! I'm wishing you the best of luck!
Jenny