Hi Everyone! I'm new here, but wanted to share a recent experience that I had to see if anyone else had been treated in the same way.

I had a cluster that started on Wednesday, November 4, by Sunday the 8th I couldn't take the pain anymore. I went to my local ER (where I have gone many times over the years) and explained my situation and my symptoms. The PA came in and said, "I'll get you something for your migraine." I explained again that I didn't have a migraine. He dismissed me. The nurse came in with an injection of Stadol, which I'd never been given before, and I told her I was afraid it wouldn't alleviate my pain. She said it should be effective for a migraine. I repeated that I didn't have a migraine I had a cluster headache and asked if they had looked at my file and history. It was all right there in the computer.  Again I was dismissed and she told me that was what was ordered and gave me the shot. I started crying because I was terrified it wouldn't help me. They discharged me with care plans for a fever (which I didn't have) and how to treat a migraine (which I didn't have).

I was back at the ER within 3 hours. Once they got me back to a room another PA came in and proceeded to give me a 5 minute lecture about how they WOULD NOT be giving me a narcotic for headache pain. I told her that I had just requested they look at my file to see what I had been given in the past. She finally went out and reviewed my file and notified me that I would be given a "modified" injection of the drugs used in the past to alleviate my "migraine"!!!!!They gave me Phenagren, Decadron, Thorazine and Benadryl.

I was humiliated and made to feel like a drug addict. I went to my doctor on Monday (with the headache still pounding) to discuss the experience with them. My doctor gave me yet another shot to break the cluster cycle. I haven't had an issue since, although (as we all do, I live with the anxiety and anticipation of my next attack).

I still can't believe I was treated that way...I've had these headaches (migraine, tension and cluster) since I was 16. I am 41 now. Has anyone else had similar experiences??

Brew is being direct and on target. Get thee to a headache doc who knows how to treat you or, if one is not available to you, then you will have to educate your primary care in how to treat cluster. You overcome anger and humiliation with personal knowledge which allow you to be in charge of your treatment.
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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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box.  Call 1-800-643-5552; 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.
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If your primary care doesn't know much, print this entire article and give to him.


 
Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (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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These are the kinds of treatments which a doc should be using:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or


 

I am horrified they're giving thorazine - that drug is horrible. A chemical lobotomy, as I've heard it called, is no way to treat CH.

I know WHY people go to ER, they're so desperate for some help, any help and when they're met with ignorance and disbelief when all they want is to get the monster out of their head is heartbreaking.

Better primary care is a must undoubtedly, if only so you don't have to go through this again.

I'm sorry you had to suffer that on top of CH too but we'll do all we can to help you get proper meds now so it doesn't have to happen again.

Helen

I am confused.  You say you had a cluster that lasted 4 days?  I've never heard of that.  Have you been diagnosed with clusters?  You also mentioned that you have migraine, tension and cluster. I guess we could all say that we end up with a tension headache after having a cluster, but that would be minor in comparison.  It sounds like you need a neurologist/headache specialist.  Narcotics will not help a cluster headache.  What do you normally use as a preventative and abortive???  Read on this site and you will learn a lot to be able to tell your doctor.

Sorry...didn't see another post.  I'll look for it.

Zyprexa is an abortive.

But with migraine you can lay down, he could not :p

Hmm, how can you tell Cluster from migraine? By intensity, place of pain, meds that work, don't work, duration?

MattyAA wrote on Nov 29^th, 2009 at 11:44am:


Hi Matty,
Sometimes it's clear cut and sometimes not so. That's why an expert opinion, from a neurologist specialising in headaches is essential.
To generalise, which I KNOW is dangerous - the way people react is different a lot of the time. A lot of clusterheads rock and pace and a lot of migraineurs will have to be quite still - but not all in either case.

Generalising helps with a broad picture but falls down on specifics. It helps give an idea but not accuracy. Its a guideline not a definition. I know migraineurs who are more violent in the actions than I am for instance!

Some things that help CH can make a migraine worse and some are the same. Some triggers are similar and some aren't.

We can't diagnose here, all we can do is relay our experiences and hope they help!

Helen

I though Bob you outgrown those headaches :p?

To stop an argument before it gets started here..... I've had back to back CH's that seem like ONE BIG CH for days.... My neuro explained it wasn't the SAME headache, but that they were just coming in CLUSTERS and seemed like the same one.

But if you HAVE to use the ER (which I try to avoid at all costs) TELL them what you NEED and INSIST on IT!!! Ya just gotta remember these guys and gals are just PRACTICING - you're the ONE who KNOWS what ya NEED!

Sometimes ya gotta get their attention (thowing that nice little jar of cotton balls against the wall will do it every time!). Then tell them YOU know what you need and they'd best listen to you.

But the best advice I can give you is the next time you get hit and need help - go to the nearest fire station and get O2 immediately. Firemen are a lot nicer to work with and don't argue near as much.

Hugs BD

Alot of times when i have been to the ER it's funny when they look at you when you tell them you have cluster headaches.
It's like their eyes just go blank (duh).

My clusters carry heavy shadows throughout the day, and although it is said that narcotics are not an abortive -which i agree completely!! BUT- they have an enormous benefit on the shawdows...NOT THE HITS.

It is now a VERY rareity at all for me to go to the ER. nooo way!!! 02, trex, and since i'm episodic i'll see my pcp for a pred shot since i cant take the verapamil. The pred shot buys me 4-5 days of complete relief.

I'm not advising the narcotics for the abort of the attack. It does nothing....BUT it does, however work well with shadows.  Everyone has their regimen...

Where is Millan?