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??

If you've had these things for so long, is there some reason you couldn't suggest a course of treatment - one that didn't include narcotics? I would think that you'd have a pretty good handle on that by now (also that the ER is no place to be for a cluster headache sufferer).

The drugs and treatments that are most effective for CH aren't administered in an ER.

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. 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.  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: 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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These are the kinds of treatments which a doc should be using:

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

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:

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


 

  Stadol is a narcotic.  I find it a stretch they would prescribe   Stadol IV and three hours later give you a cocktail of Phenagren, Decadron, Thorazine and Benadryl.  That combo in that time frame would/could be deadly.

             Potter

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

What Bill and Bob said!

You need to educate yourself as to what you need, make sure you have what you need on hand so you don't need the ER.  First off, I would suggest strongly you read the oxygen info to the left.  It is very uncommon for one of us using high flow oxygen properly to not be able to control it. 

Jerry

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.   

Joni,
They have another post


Millan wrote on Nov 28^th, 2009 at 10:46am:

What drugs are you talking about specifically? I feel like I've tried everything...the nerve blocks, beta blockers, anti-depressants, Frova, Imtrex, Relpax, Treximet, demeral, lortab....

Millan,
I have a very difficult time wrapping my head around the fact that (1) you were given a shot against your will and (2) you were allowed to leave the hospital after being given heavy duty narcotics (the first time and an anti-psychotic the second time).  IMHO, that's lawsuit time.

I know that the one time that my husband used Stadol (and it was the spray), he was as looped as he could be and damn sure in no shape for driving.

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

Millan, the ER is a very dangerous place to be.  I went to the ER after suffering a severe kip 10 that went way to long.  I just wanted it to stop.  Peace and quiet no pain for a few min. to hours of relief was what I was seeking.  Something to hopefully break it up.  I was given 4 mg of dilaudid.  It always worked for me.  It didn't this time.  The dr said I can give you 2mg more or you can go home in pain.  I said 2 mg more please.  I got 2 mg more and he didn't keep me around.  Sent me home because I wasnt getting any more dilaudid.  I do not remember leaving the hospital, the drive home, etc.  My husband said that I went to bed and when the phone rang and he answered it he looked in on me and I was blue and not breathing.  He got off the phone called 911 and the EMTs came.  They pulled the narcotic out of my system and said another 15 min. and I would have been non recoverable.  I went to the hosptial.  The dr there yelled out!  There she is, she walked out on her own free will!  I was very lucky to be alive and I never went back to ER for headache pain after that.   

They are not headache specialists.  There is so much more they can do for you that is non narcotic.  Please before it is to late.  Find an alternative to your care.
There is lithium, verapamil, topamax, elavil, zyprexa, etc. to prevent ch.  There is oxygen, imitrix to abort a ha.
I was for years chronic getting hit 8x/day every day on end.  I do know how hard this is to deal with.  Nothing worked for me until my dr tried several meds and finaly found something to bring me relief.  There is also the cluster busting methods you could try as a last resort if all else fails.  Check their website.

Zyprexa is an abortive.

Millan wrote on Nov 28^th, 2009 at 10:38am:

I had a cluster that started on Wednesday, November 4, by Sunday the 8th I couldn't take the pain anymore. (with the headache still pounding)

Sounds like a migraine to me!

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

MattyAA wrote on Nov 29^th, 2009 at 8:21am:

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

That's not necessarily so.  I have migraines and there are times that I CANNOT lay down. 

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:

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

All of the above!

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

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

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

Migraines throb
Clusters stab/burn, very sharp pain
No cluster lasts 4 days!!!!

I though Bob you outgrown those headaches :p?

It's been 4 1/2 years since my last cluster but you never forget what they are like.

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 :-*

Bob P wrote on Nov 29^th, 2009 at 8:57pm:

Migraines throb Clusters stab/burn, very sharp pain No cluster lasts 4 days!!!!

And I guess that's why my migraines are classified as *atypical*.  I get the burning/stabbing pain.  In fact, I think it was E-dub who has the same thing (I liken it to a river over napalm starting in my neck and running along the nerves in my head to my eye).

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...

Kimmie have you ever tried any of the longer acting triptans like zomig or frovatriptan?
Have you tried O2?
What about coffee and red bull? We might be able to help with those shadows!

Helen

Where is Millan?

wrote on Nov 30^th, 2009 at 2:28pm:

Kimmie have you ever tried any of the longer acting triptans like zomig or frovatriptan? Have you tried O2? What about coffee and red bull? We might be able to help with those shadows! Helen

I also have a very hard time with shadows.  I am constantly plagued by a droopy, red eye and a sort of raw feeling.  After dosing last night I am feeling today as if I will get hit any minute. ( It hasn't developed yet, Thank goodness!)  I don't have 02.  Would it help with shadows?

Thanks!

Jeannie

It can for some Jeannie, not everyone and some only get relief while actually using the O2 but it is absolutely worth a try, especially for those that have it anyway.

For what it's worth - OTC pain meds such as tylenol and motrin CAN actually be effective on shadows. As we all know, they're like throwing skittles at a shark if you try and use them for CH but on shadows they can be a really effective measure.

Hope it helps! I don't want you hurting!
Helen

Thanks Helen!  Sometimes I use the generic Excedrine for Migraine for my shadows.  It helps some.  The 4Way nasal spray helps with the pressure too. ( Thanks Racer!)

Maybe it will help you too, Kimmie.

Jeannie

On Thanksgiving, I had a shadow linger all day.  I kept busy and it was only when I slowed down that I could feel it creep back into place.  After dinner I was done with it! I went into my room and hit with O2 for 2 minutes.  I could feel it leave me almost immediately.  I am always afraid to over use my O2 for the shadows, I don't want to build up a tolerance for it (if that even happens).  But, it did work for the shadow.  And, I did you use the O2 the other morning when I was plagued with another shadow that strong coffee wasn't aborting.

Angela

I don't believe you can build up a tolerance to O2.

Brew wrote on Nov 30^th, 2009 at 8:19pm:

I don't believe you can build up a tolerance to O2.

I agree with you (sadly again) but there have been times I have decided not to use O2 because of the irrational fear that it will no longer work for me if I use it too much.

CH makes for some great decision making for me sometimes!

I think Mr. Spock would say that sometimes it makes us illogical.

Is it just me or is anyone wondering where Millan went?

Richard,

I hate to be nosey.....but i cant figure why you would stop coming to this site.
For 99.99999999% of us this is our lifeline.
There is so much research here and connections with folks who are going through the same as you.

Please stick around this time. We learn from each other's experiences and treatments.

-Kimmie

Well we're glad you found your way back - there isn't anywhere better for us to be than together!

I hope you stick around too, it's good for all of us.

Welcome back  :)

Joni wrote on Nov 30^th, 2009 at 11:32pm:

Is it just me or is anyone wondering where Millan went?

I don't know.  That's a good question.   If this were some of the other online groups I belong to, I'd say it was a troll, but CH is such a different thing, it could very easily be a case of a noob, having the jitters, and not wanting to post after all of the comments that were made.  It's also possible that the long headaches that Millan is having, are both CH and migraines during the same time period (I've never experienced that, but I've read of it happening to some CH sufferers [they have CH, and then have a migraine after the CH is over with, and the neuralagia from the CH, makes regular migraine meds useless]).

Ellen,
Having the weirdest CH cycle she's ever had in her 10 years of having CH

I know of one long time and well respected member of this forum who has had simultaneous migraine and CH. Whilst it's not common it can happen.
I suffer from CH on a regular basis but have maybe 6-7 migraines a year. The funny thing is, absolutely no meds work for them. Go figure.

With CH we truly can say, we are all unique.

wrote on Dec 1^st, 2009 at 12:57pm:

The funny thing is, absolutely no meds work for them. Go figure. With CH we truly can say, we are all unique.

It is more sad than funny thing, what have you used so far? As in everything? From meds? Cluster Buster method too?

MattyAA wrote on Dec 1^st, 2009 at 4:51pm:

wrote on Dec 1st, 2009 at 12:57pm: The funny thing is, absolutely no meds work for them. Go figure. With CH we truly can say, we are all unique. It is more sad than funny thing,

It's a colloquialism, Matty.

Did you mean for my migraines Matty? If so I've used every "CH" abortive I have (which lets face it - are all migraine meds anyhow) and I have also used OTC migraine meds such as migraleve. I don't have so many of them that I want to mess with my CH set up if that makes sense.

When I said it was funny I didn't mean in a humourous way, more irony or dark humour than anything. That's something we do here, poke fun at ourselves! It's a coping technique, it isn't meant to offend.  :)

Helen