Probably every one of us had at least 1 or more diagnoses before a doctor actually told us what we have are cluster headaches.  I do medical transcription, and what I find funny is what clearly do not sound like cluster headaches are being diagnosed as so.  Granted I don't know the whole history of the patient, but I'm pretty sure when they talk about someone coming in with a headache lasting for 2 days it's not a cluster headache, which is what the doctor called it in this particular case.  Anyway, just thought I'd share that other hurdle complicating proper diagnosis and treatment of these things.

Like many - first diagnosis for me was a sinus infection.  If I had a continous 2 day attack I think I would jump off the roof - so either this dude (or dudette) is one tough SOB, or it ain't a CH.

That is interesting, as it seems backwards to me.  Most Drs. who aren't knowledgable about clusters are more likely to diagnose migraines, when in fact it is CH.  In this case he was diagnosing CH, when it probably was migraines.  lol

Lol, exactly! 

TMJBeav, my first neurologist had me get an MRI because she couldn't understand why I was having 2 "migraines (as she called them)" in one day.  When they called me and told me I had sinusitis, I was elated because I thought "finally, an answer to these horrible headaches."  Turns out my infected sinus was on the other side.  I left the office almost crying that day.  This was before I was properly diagnosed with cluster headaches or really knew anything about them.  I went through a couple of diagnoses though...  Stress, migraines, psychiatric/somatic headaches.  I was 15 when they started and 30 when I finally found out what they really are. 

Pains me to hear it took that long for you.  I actually thought mine WAS a sinus infection because the cycle ended pretty close to when I got off my second batch of antibiotics. 

I tend to use the internet quite a bit for my work and am pretty good at searching - so when the next cycle hit me it got me to go searching, and I essentially figured it HAD to be cluster headaches.  Doc was good at getting me the imetrix shots (after three weeks of hell trying the pills and nasal) - but wouldn't give me the preventative treatment till I saw a neurologist.  Well - that was two months out and by then the cycle was over, and I made the mistake of canceling my appointment.  The third cycle is when I finally got an MRI - again, took so long to get the appointment the cycle was over.  So this time - when it hit I was ready and luck for me my Nurse Practionar was willing to read up CH's for me and give me a Pred taper and verapamil - plus essentially unlimited script for trex shots.  Think this cycle is now busted - only decision I have is how long to stay on the verapamil.  My BP is normally good, and I have been feeling a bit more tired and sometimes easily out of breath - maybe my BP is too low?  Anyway - staying the course with the Verap, and high dose of D3 (but not the other co-factors) because not having a hit in two weeks has been wonderful!

Issue is that docs will be trained in those conditions which they are most likely to encounter--and we aren't one of them.
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Medical education in headache
Posted 9/26/07, MEDSCAPE   

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Abstract statements from a study of headache education in medical programs. Second para. specific to neurological residency training. Gives good idea of why it's difficult to find a sharp doc.
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"Objective. To explore the extent of headache education received by medical students and residents.
Background. Headache is a common, often severe, and sometimes disabling problem. However, 49% of sufferers do not seek professional treatment -- of those who do, only 28% are very satisfied. One possible reason is limited education of physicians about headache.
Methods. Surveys were sent to all allopathic and osteopathic medical schools, 200 family medicine residencies, and all 126 neurology residencies. Information requested included the amount and perceived adequacy of headache education and any plans to increase headache education.
Results. Response rates were 35% to 40%. MEDICAL SCHOOL LECTURE HOURS RANGED FROM 0 (4%) TO >5 (24%) WITH 92% HAVING NO PLANS FOR AN INCREASE IN HEADACHE EDUCATION. FAMILY MEDICINE RESIDENCY LECTURE HOURS RANGED FROM 1-3 (30%) TO >5 (34%) AND CASE PRESENTATIONS FROM 1-5 (23%) TO >5 (41%), WITH 88% OF PROGRAM DIRECTORS HAVING NO PLANS FOR INCREASE. NEUROLOGY RESIDENCY LECTURE HOURS RANGED FROM 1-3 (11%) TO >5 (64%) AND CASE PRESENTATIONS FROM 1-5 (23%) TO >10 (57%), WITH 80% HAVING NO PLANS FOR INCREASE.
Conclusion. Undergraduate medical education in headache is limited. Despite medical schools perceiving their training as adequate, both neurology and family practice residency program directors believe entering residents are inadequately prepared in headache upon entering the program."

"Neurology Residency Programs
Neurology residency program lecture hours varied from 1 to 3 hours (11%) to >5 hours (64%) (Figure 2). The number of case presentations ranged from 1-5 (23%) to >10 (57%) (Figure 6). Forty-two (95%) of program directors believed that their headache education was adequate (Figure 4). Interestingly, 20% of neurology programs indicated plans to increase training in headache management. Similar to the family practice programs, 68% of the program directors believed that new residents had inadequate knowledge about headaches upon entering the program while only 11% of the program directors believed that their residents were well informed about headache."

Funny story...my dad had CH for about 30 years, he's been in remission for about 10 years now.  I get a lot of my advice from him.  This past winter, he thought he was getting them back again.  He doesn't have insurance and I've been a good boy and stocking up on my preventatives, so I gave him some of my Maxalt MLT's.  Well, they didn't touch his headaches.  I told him he needed to get to a free clinic.  So after like 3 weeks (he's old and stubborn), he finally goes, and as it turns out, he actually had a sinus infection...whaddayaknow...

maybe the patient had back to back clusters for two days? but more then likely sound like a migraine to me. But i was misdiagnosed by a ENT who totally scammed me told me i had sinusitis and had abnormally small sinus passages and needed balloon sinuplasty which i was ecstatic about, finally these headache will stop, i will have my life back. Well i under went a $17,000.00 surgery i thought my old insurance was going to cover come to find out they only covered $1,500.00. i refuse to pay the rest being i feel that there was absolutely nothing wrong in the first place with my sinuses, and it was just a way for him to try and make money off of me. I never got chronic sinus infections or anything. So i am looking into a lawyer for that. I think probably around 80-90% of CH sufferers get misdiagnoses with something sinus related.

I have stayed on my verapamil even when I am not in a cluster cycle, but, when winters comes, and I am 99.9% positive my remission year begins, I think I will stop it for the year and then resume after my remission year.  Kinda confusing, lol, but I get 2 cycles a year and then remission for a year.  I found that when I first started verapamil I had no CHs, just shadows, but this time around I got them pretty bad.  So, I'm going to give it a rest for a while and see if I have more success next time.  The doctors tell me there is no evidence of building an immunity to it, but we'll see.  I had my dose upped last time and had to lower it because of low blood pressure.  I was told before I normally run low though.  The symptoms I had with low blood pressure were palpitations and seeing lights that looked like bugs out of the side of my eye, especially when just getting up or bending over.  Other than that, I didn't notice anything other than the usual side effects.  No tiredness for me though. 

I also started the D3 just a couple days ago in hopes to avoid the fall cycle that is imminent or at least reduce them.  I am trying to be prepared this time as much as possible.

 

Diefaster,

Now that there is funny.  At least a real sinus infection can be cured and it's done with.   CH cannot.

I have gone the "sinus route" many times, and have been disappointed with each. To explain, I should let you know I have two major conditions: CH, and an ongoing ear problem that often presents with ear infection or hearing loss. These two conditions often play off each other, complicating diagnosis.

To answer your question, I am one of the many who have ended up at the ENT office.  In my case, the ENT surgeon is not very well-versed in cluster headache but is at least willing to listen. In seeking to cure my CH, I have ended up at the ENT several times.

It can be very hard, for patient or doctor, to distinguish CH from chronic sinus problems. The symptoms overlap a great deal. It often becomes a matter of trial-and-error to eliminate other issues as a cause for the CH.

But at the end of the day, if you have eliminated the possible cures for sinus issue and are still having trouble, it's time to focus on CH instead. Keep good notes, as they will aid you in tracking your symptoms and eventual cure.  :D

AppleNutClusters wrote on Jul 18^th, 2012 at 8:39pm:

I have gone the "sinus route" many times, and have been disappointed with each. To explain, I should let you know I have two major conditions: CH, and an ongoing ear problem that often presents with ear infection or hearing loss. These two conditions often play off each other.  :D

This is interesting, I am also very prone to an ear infection in my left ear, same side as my clusters and there is a very close correlation between a cluster cycle starting and an ear infection setting in. Only hassle is that the clusters don't stop when the infection is cleared. I'm honestly not sure on the cause and effect hear though, if its the swelling from the infection that irritates my clusters or the stress from the cluster attack that irritates the ear.

Wayne: There is an old saying in science: just because two events occur one after another doesn'st mean that there is a causal link.

This is the same issue as people who have tooth/jaw pain at the same time as having Cluster. Our mind tends to see a causal link and so much money is spent having teeth pulled, etc. -- without any impact on the Clusters.

This reality points to why it's useless, even dangerous, for us to try and diagnosis/treat our Clusters rather than seeing a good doc.

Agree with Bob.  I think maybe one could possibly exaggerate the other because of the stuffiness of the nose on the affected side, tearing eyes.  I even find that I have a little water in my ear after one.  I once asked my neurologist why I heard noises in my head when I got a CH, and he told me it was because of the activity going on with my sinuses during an attack; hence the stuffed up nose, etc.  Here, I just thought it was the ticking from the bomb in my head just waiting to go off.  ;)

You dont know how many different diagnosis i have been through to finally get to the correct one. lets see..... Migraine, optical migraine, sunct syndrome, trigeminal neuraglia, possible pituitary tumor, Trigeminal autonomic cephegalia, and then finally.... cluster headaches after going to john hopkins.

Bob Johnson wrote on Jul 19^th, 2012 at 9:06am:

Wayne: There is an old saying in science: just because two events occur one after another doesn'st mean that there is a causal link. This is the same issue as people who have tooth/jaw pain at the same time as having Cluster. Our mind tends to see a causal link and so much money is spent having teeth pulled, etc. -- without any impact on the Clusters. This reality points to why it's useless, even dangerous, for us to try and diagnosis/treat our Clusters rather than seeing a good doc.

Bob: I have never gone it alone treating the clusters and always worked with a doc, altough I have moved around quite a bit so theres been a lot of re training involved. What I do know is that in the last three years the onset of 5 cluster bouts has been followed withinn 3 to 4 days by an ear infection. Not saying that they are linked but that is a bit of a coincidence in my book

Ms Di Agnoses?  She caused me nothing but trouble for more than ten years.

I now drink elsewhere.

I find that ear pain in general can trigger more attacks in cycle. Out of cycle, no problems.

Interesting note, Billie.  It would be interesting to know what specialty this physician was.  Thanks for the post.  It is a most timely arrival.