Ive been told I now have cluster migraines.. dont know if I should be here..Pain is still the same, no matter what the name is.. a rose is a rose etc. I have been relatively pain free for the last 2 years,with some minor bouts with the beast,  But nowhere like the previous 6.. been to 3 different neuros, none of which really helped, And info I have gotten here helped put a lid on it..I think I have used every med that was made, with some relief, but plenty of side effects..The last Neuro I went to, said I was the worst he had ever seen..  I was having 6 or 7 attacks a day, including the nights.. They would last from 1 hour to 1 hour and a half,  and maybe start in again 5 minutes after it sub sided. The Cause? Who knows.. ? Triggers.? a ton.. bright lights, loud noises, crowds, or sometimes just outta the blue..Nights were the worse.. Just like an alarm clock, 1:30 am ..I tried staying up past that time, but it would jump on me an hour and a half after I went to sleep. Ive had attacks in the waiting room of the Neuro iI was seeing, in the e/r for other business, and In a dentists chair , and getting prepped for surgery..No place was safe from the beast. I have seen others use "Red Bull"for relief,  kinda pricey for me with the number of attacks,, so I looked at the ingredients, and to me, the most prevalent was Caffeine. It does, for me stop it in its tracks..from just a few sips or sometimes a couple of cups..its available everywhere..But the best thing for me.. I am saying for me.. not everybody, is the use of 4 500 ml bottles of water daily ,  All I can say, is thanks ch.com , lifes worth living again. no doctor recommended it.. they should have visited this site themselves..

Anything that works and doesn't cause your body harm, in my opinion, is good. However, water alone usually isn't enough to send the beast packing. Perhaps your cycle ended naturally. Who knows?

Enjoy the good times, but read up on this site and be ready if the beast decides to come again.

"cluster migraine" was, a LONG time ago, the name for Cluster. That gave way to Cluster but is now used by some docs to describe a condition in which we have headaches which have elements of each type.

Treatment demands a doc with some skill/experience/sophistication. Hope you are seeing a headache specialist.

Glad the water works for you, and the caffeine. Somehow, caffeine by itself doesn't do it for me, but chuggin' a Monster and then huffin' the O2 usually aborts a hit in under 3 minutes. There are side effects to everything, including water. It's really a matter of weighing substance effectiveness against the irritation of the side effects. Good to have you aboard. Feel free to chime in whenever....God bless. lance

"Cluster Migraines" to me, is like saying I drive a "Moped Truck". They are NOT the same, so why are some lumping these 2 very different things together ??

I4B

Bob Johnson wrote on Aug 9^th, 2012 at 7:49am:

"cluster migraine" was, a LONG time ago, the name for Cluster. That gave way to Cluster but is now used by some docs to describe a condition in which we have headaches which have elements of each type. Treatment demands a doc with some skill/experience/sophistication. Hope you are seeing a headache specialist.

I figured as much when my neuro (last Fall) diagnosed my file as cluster Migraine.  I had to educate him on the difference and he revised my paperwork to read Cluster Headache.  Needless to say, he was "old school."

-Gregg in Las Vegas

Curr Pain Headache Rep. 2007 Apr;11(2):154-7. 


Cluster-migraine: does it exist?

Applebee AM, Shapiro RE.

Given C219B, Department of Neurology, University of Vermont College of Medicine, 89 Beaumont Avenue, Burlington, VT 05405, USA. robert.shapiro@uvm.edu.

The nosological boundaries between cluster headache and migraine are sometimes ill-defined. Although the two disorders are distinct clinical entities, patients sometimes present with clinical scenarios having characteristics of both headache types, but either do not fully meet International Classification of Headache Disorders, Second Edition diagnostic criteria for either disorder or have sufficient symptoms and signs to allow both diagnoses to be present. These occasions provide diagnostic challenges and include what is variously described as migraine-cluster, cyclical migraine, clustering episodes of migraine, cluster with aura, or atypical cluster without autonomic symptoms or severe pain. Patients with symptoms overlapping cluster headache and migraine likely reflect the inherent clinical variability in each of these two disorders, rather than distinct diagnostic entities in their own right.

PMID: 17367596

The inconsistent wording definitely trips me up because I have cluster headaches and migraines. They are distinct conditions which happen at different times, and I have different symptoms for each.

I try to be really specific when describing symptoms to my doc, and I check his notes every once in a while by getting a copy.

AppleNutClusters wrote on Aug 10^th, 2012 at 12:26pm:

The inconsistent wording definitely trips me up because I have cluster headaches and migraines. They are distinct conditions which happen at different times, and I have different symptoms for each. I try to be really specific when describing symptoms to my doc, and I check his notes every once in a while by getting a copy.

From what I understand, if you have both CH's and also Migraines; your diagnosis is Cluster Migraines.  I could be wrong of course, but this is what I have read and understood last year when trying to figure out why my neuro classified me as Cluster Migraines.  As mentioned in a my previous post, I do not have migraines and found out my neuro was "old school where it was common to diagnose patients as Cluster Migraines even though they may not have Migraines.  Speeding up to 2011 and 2012 when "old school" neuros were corrected about the proper name of the diagnosis of somebody withOUT migraines but with CH's should be diagnosed as "Cluster Headaches."  Hopes this helps clarify

-Gregg in Las Vegas

LasVegas wrote on Aug 10^th, 2012 at 12:36pm:

From what I understand, if you have both CH's and also Migraines; your diagnosis is Cluster Migraines.

From my last neuro visit my diagnosis was:

• Cluster Headaches
  
• Chronic migraines
  
• Chronic daily headaches (from migraines)
  

There was no mention of cluster migraines and luckily for me, the last two will now just be migraine after a very successful combination of preventives and trigger identification.

Thanks all for your input. I really appreciate the advice I had gotten here. Hopefully, this is at an end.. (cross fingers)It is amazing to me, the different diagnoses I had gotten from 3 different neuros..Each one thought the others didn't know what they were doing. I guess egos were involved. I had asked the question, Don't you guys confer with each other? I received no answer to that one from each doctor.. I guess that they did not want to appear stupid to another doctor..Anyway that's the way it came across. The headaches first started after an eye operation, on my right eye,which is where my migraines first appear. Back of the eye ,and moves to my right temple. It scared the bejesus out of my opthomoligist  he thought he had did something wrong..Oh boy,Law Suit, when I was diagnosed with clusters, guess thats the going word now, I had asked him to see what he could find out about it.got kind of a haughty reply, Oh thats because of -------  cant remember what he said, but when I asked , if you think you have the answer to this problem, let me know.. I will get 3000 people lining up at your front door , Monday morning. It wasn't brought up again. My last doctor wanted me to go to Chicago headache institute, to have a hole drilled into my head, to snip a nerve.That sounded rather final to me, not to mention, it doesn't grow back .and side effects? Glad  I didn't..

I was diagnosed as suffering from CH, migraine, tension type HA and trigeminal neuralgia. I think I could get diagnosed with several other HAs if I wanted, because along the years (about 30 of them...) I had every pain possible.

In his famous book from the 70s' Oliver Sax (who treated thousands of people with HA) already described some cases of people who's symptoms matched various disorders, changing constantly or over the years. Some of which had periods of abdominal pain, "fake" asthma, chronic skin problems and other sicknesses which he concluded where signs of a common neurological source.