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Master
Picture of MedievalWriter
Posted
Yesterday, after years of being gone, cluster migraines have returned with violence.

I woke up several times in the night in pain, but I was able to go back to sleep.

By 7:00AM, I was in the bathroom trying to floss and brush the teeth on my upper right side trying to see if there was something there making the whole row of them hurt so badly. Only problem was that I couldn't see my teeth because my right eye was so swollen and bloodshot that I couldn't focus it on my mouth.

The right side of my sinsuses felt like they were full of cement. My right ear was hurting so, so badly and I was hurting all down the right side of my neck. Blood was trickling out of the right side of my nose, but just a tidbit. I figure I just had so much blood congestion in that area (classic feature of clusters) that I must have popped a little blood vessel.

I put ice on my face, but it made the pain worse. I put the heating pad on it and that did help some. Despite swearing I would never do this, swearing I never would, I took an Axert. In a few minutes, the pain began to abate. Every few minutes, the pain would go down and little more and a little more.

Like clockwork, this morning at the same time, the pounding started again in my teeth, sinsus, and eye on my right side. Cluster migraines are back.

I could cry. I did cry yesterday. You can't believe the pain. It is bad, bad, bad.



8']

http://stormlaughter.blogspot.com/
http://stormlaughter.deviantart.com/
basilar-artery migraine, MAV, BPPV, migraine with and without aura, cluster headaches, but no tension headaches! W00t! Smiler
 
Posts: 454 | Location: Central Alabama | Registered: 01-13-2007Reply With QuoteEdit or Delete MessageReport This Post
Supreme Guru
Picture of Teri Robert
Posted Hide Post
Is "cluster Migraine" a diagnosis a doctor gave you? There's no such thing. The term is contradictory. I'd love to make some suggestions, but I don't really know if you're talking about cluster headaches or Migraine attacks.



Teri Robert
Lead Expert, MyMigraineConnection
terimmc@helpforheadaches.com




The generally long periods of time between my Migraines are the result of working with a Migraine specialist to refine my preventive regimen. You can see my current regimen HERE.

 
Posts: 3005 | Location: West Virginia | Registered: 01-11-2007Reply With QuoteEdit or Delete MessageReport This Post
Master
Picture of MedievalWriter
Posted Hide Post
'Vascular headache with cluster migraine symptoms' was what the doctor called it years ago. The other dx I got was 'vascular headache with classic migraine symptoms' and then again just 'vascular headache'. Certainly not the dx's I have now for the migraine with and without aura, but that's what they called them way back then. They called them all vascular headaches and qualified them by classic, cluster, and just 'vascular' for no aura.

I haven't had any clusters to even mention to a doctor in years. Maybe I'll get an up-to-date dx now, for whatever they call them these days.

Wonder how they treat them these days, too? Use to be they would just tell the middle-aged men to quit smoking and drinking beer and eating aged cheese, and the clusters would stop. But I'm not a middle-aged man, and I don't smoke or drink or eat aged cheese!

There was a time when clusters were considered migraines--are they not any longer? I remember that there has been debate about removing clusters from the 'migraine' family, but I haven't followed that debate in years.

I'll share this with you: what I had yesterday did not have all of the requirements for a migraine the way it is dx'd now: I had strong throbbing pain on one side of my head, but none of the other requirements of sound and/or light sensitivity, nausea and/or vomiting, or movement exacerbation of symptoms.

I don't have another appointment with the migraine spec until June 7th--think I should make a futile effort to call and discuss this with him before then? I've had these cluster whatever-the-best-name-for-them-is before, and they're dreadful. I certainly don't want to have one every morning for the next month while waiting to see him. They can come on like a clock striking the hour--exactly right on time every single day. I guess I've answered my own question! Smiler



8']

http://stormlaughter.blogspot.com/
http://stormlaughter.deviantart.com/
basilar-artery migraine, MAV, BPPV, migraine with and without aura, cluster headaches, but no tension headaches! W00t! Smiler
 
Posts: 454 | Location: Central Alabama | Registered: 01-13-2007Reply With QuoteEdit or Delete MessageReport This Post
Supreme Guru
Picture of Teri Robert
Posted Hide Post
I think the key to the confusion here is in what you just said, "way back then." Let me just do some points of info to clear things up a bit.

  • No, cluster headaches are not Migraines or even related to Migraines. They're two separate issues. The genetics of them are different too. Migraines and clusters have not been categorized in the same "family" for many years now.
  • Migraines are no longer considered "vascular headaches" either. One possible symptom of a Migraine attack is a headache and it is still considered a vascular headache, but again, it's a symptom, not the entire Migraine attack.
  • Proper diagnosis is essential to proper treatment AND being able to really talk to others for info and support. So, when you see your specialist, I'd suggest talking about what your diagnosis is these days.
  • It's entirely possible that your current diagnosis would actually be three diagnoses -- Migraine without aura, Migraine with aura, and cluster headaches.
  • We don't have it up on this site yet, but I do have a basic article on cluster headaches that might clear up some of this for you, Cluster Headaches - What Are They?


On cluster treatment:
  • Some of the meds used for Migraine prevention are also quite good for cluster headache prevention. The two that come to mind are verapamil and Topamax.
  • For cluster headache abortives, the two I see most often are Imitrex injections and inhaled Oxygen. With the Imitrex injections, most cluster sufferers don't need the full 6mg of the original injections. A year or so ago, the autoinjector type injections were released in a 4mg version. Since the daily max is 12mg, that allows the use of it three times in a day instead of the twice it could be used in the original formulation. Another thing some cluster sufferers do is get the Imitrex injections not in the autoinjector, but little individual dose vials that contain 6mg each. Then they use an insulin syringe to only use 2mg at a time. That allows the use more times in a single day if they're having multiple attacks every day, and it saves $$


I know all of this is confusing, and I'm not sure what you had yesterday. I know there's a list of symptoms we're supposed to have with Migraines, but we also know that there are times when they're just strange. The article I linked for you discusses cluster symptoms, including how long cluster headaches last.

This will need to be sorted out with your specialist, but I hope some of this info is helpful.

hugs,

quote:
Originally posted by MedievalWriter:
'Vascular headache with cluster migraine symptoms' was what the doctor called it years ago. The other dx I got was 'vascular headache with classic migraine symptoms' and then again just 'vascular headache'. Certainly not the dx's I have now for the migraine with and without aura, but that's what they called them way back then. They called them all vascular headaches and qualified them by classic, cluster, and just 'vascular' for no aura.

I haven't had any clusters to even mention to a doctor in years. Maybe I'll get an up-to-date dx now, for whatever they call them these days.

Wonder how they treat them these days, too? Use to be they would just tell the middle-aged men to quit smoking and drinking beer and eating aged cheese, and the clusters would stop. But I'm not a middle-aged man, and I don't smoke or drink or eat aged cheese!

There was a time when clusters were considered migraines--are they not any longer? I remember that there has been debate about removing clusters from the 'migraine' family, but I haven't followed that debate in years.

I'll share this with you: what I had yesterday did not have all of the requirements for a migraine the way it is dx'd now: I had strong throbbing pain on one side of my head, but none of the other requirements of sound and/or light sensitivity, nausea and/or vomiting, or movement exacerbation of symptoms.

I don't have another appointment with the migraine spec until June 7th--think I should make a futile effort to call and discuss this with him before then? I've had these cluster whatever-the-best-name-for-them-is before, and they're dreadful. I certainly don't want to have one every morning for the next month while waiting to see him. They can come on like a clock striking the hour--exactly right on time every single day. I guess I've answered my own question! Smiler



Teri Robert
Lead Expert, MyMigraineConnection
terimmc@helpforheadaches.com




The generally long periods of time between my Migraines are the result of working with a Migraine specialist to refine my preventive regimen. You can see my current regimen HERE.

 
Posts: 3005 | Location: West Virginia | Registered: 01-11-2007Reply With QuoteEdit or Delete MessageReport This Post
Master
Picture of MedievalWriter
Posted Hide Post
Thanks Teri. This does clear up the terminology.

Last good dx I had was exactly what you said: migraine with aura and migraine without aura except that the neuro (not the migraine spec) had added 'intractible' in front of each 'migraine'. That was at least seven or eight years ago. When I see the migraine spec in June, I'll ask him for my current dx after I explain these current whatever-they-are's.

True story: I had described these to one neuro wondering if they were clusters. He suddenly died of pancreatic cancer, but not before telling me that only middle-aged men who drank beer, smoked, and ate aged cheese got clusters so obviously what I had weren't clusters. My next neuro, who was in research, told me that they were classic clusters, and never mind that I wasn't a middle-aged man! Cool



8']

http://stormlaughter.blogspot.com/
http://stormlaughter.deviantart.com/
basilar-artery migraine, MAV, BPPV, migraine with and without aura, cluster headaches, but no tension headaches! W00t! Smiler
 
Posts: 454 | Location: Central Alabama | Registered: 01-13-2007Reply With QuoteEdit or Delete MessageReport This Post
Supreme Guru
Picture of Teri Robert
Posted Hide Post
You're VERY welcome. I was hoping to provide you with some info to help with your next appointment.

The "intractable" that your doc added to your diagnoses was a descriptive term meaning that your Migraines weren't responding to treatment. I always cringe when I see that word.

Sadly, your story about the cluster diagnosis is all too familiar. Sheesh!

quote:
Originally posted by MedievalWriter:
Thanks Teri. This does clear up the terminology.

Last good dx I had was exactly what you said: migraine with aura and migraine without aura except that the neuro (not the migraine spec) had added 'intractible' in front of each 'migraine'. That was at least seven or eight years ago. When I see the migraine spec in June, I'll ask him for my current dx after I explain these current whatever-they-are's.

True story: I had described these to one neuro wondering if they were clusters. He suddenly died of pancreatic cancer, but not before telling me that only middle-aged men who drank beer, smoked, and ate aged cheese got clusters so obviously what I had weren't clusters. My next neuro, who was in research, told me that they were classic clusters, and never mind that I wasn't a middle-aged man! Cool



Teri Robert
Lead Expert, MyMigraineConnection
terimmc@helpforheadaches.com




The generally long periods of time between my Migraines are the result of working with a Migraine specialist to refine my preventive regimen. You can see my current regimen HERE.

 
Posts: 3005 | Location: West Virginia | Registered: 01-11-2007Reply With QuoteEdit or Delete MessageReport This Post
Supreme Guru
Picture of Teri Robert
Posted Hide Post
How are things going?

quote:
Originally posted by MedievalWriter:
Thanks Teri. This does clear up the terminology.

Last good dx I had was exactly what you said: migraine with aura and migraine without aura except that the neuro (not the migraine spec) had added 'intractible' in front of each 'migraine'. That was at least seven or eight years ago. When I see the migraine spec in June, I'll ask him for my current dx after I explain these current whatever-they-are's.

True story: I had described these to one neuro wondering if they were clusters. He suddenly died of pancreatic cancer, but not before telling me that only middle-aged men who drank beer, smoked, and ate aged cheese got clusters so obviously what I had weren't clusters. My next neuro, who was in research, told me that they were classic clusters, and never mind that I wasn't a middle-aged man! Cool



Teri Robert
Lead Expert, MyMigraineConnection
terimmc@helpforheadaches.com




The generally long periods of time between my Migraines are the result of working with a Migraine specialist to refine my preventive regimen. You can see my current regimen HERE.

 
Posts: 3005 | Location: West Virginia | Registered: 01-11-2007Reply With QuoteEdit or Delete MessageReport This Post
Master
Picture of MedievalWriter
Posted Hide Post
Every morning, just like clockwork, at or around 8:00AM, my right sinus stops up and my right eye begins to water.

The pounding pain goes from my eye down to my teeth and back to my ear. It lasts sometimes for just a few minutes and sometimes for a hour, then stops as fast as it started.

You can't IMAGINE how agitated these attacks makes me feel. They make me want to just pound on my face to try to make the pain stop.

I called my famous migraine spec on Monday to ask for help and guess what? He's not 'clinically available' until the middle of June! I told the secretary that he had to be--I had an appointment in May, and she said, "Not anymore. I had to change all his appointments and I mailed out letters to everyone. Your next appointment is in August."

Lots of things going on in the world of research right now--I imagine he's busy working on one or the other of those projects. We can wait, can't we? Frowner



8']

http://stormlaughter.blogspot.com/
http://stormlaughter.deviantart.com/
basilar-artery migraine, MAV, BPPV, migraine with and without aura, cluster headaches, but no tension headaches! W00t! Smiler
 
Posts: 454 | Location: Central Alabama | Registered: 01-13-2007Reply With QuoteEdit or Delete MessageReport This Post
Supreme Guru
Picture of Teri Robert
Posted Hide Post
Your doctor doesn't have anyone cover when he's unavailable? I'd be getting a new doctor.

That sounds like a cluster headache, not a Migraine, but your doc has to confirm that.

I'm sorry you're going through this. Frowner

quote:
Originally posted by MedievalWriter:
Every morning, just like clockwork, at or around 8:00AM, my right sinus stops up and my right eye begins to water.

The pounding pain goes from my eye down to my teeth and back to my ear. It lasts sometimes for just a few minutes and sometimes for a hour, then stops as fast as it started.

You can't IMAGINE how agitated these attacks makes me feel. They make me want to just pound on my face to try to make the pain stop.

I called my famous migraine spec on Monday to ask for help and guess what? He's not 'clinically available' until the middle of June! I told the secretary that he had to be--I had an appointment in May, and she said, "Not anymore. I had to change all his appointments and I mailed out letters to everyone. Your next appointment is in August."

Lots of things going on in the world of research right now--I imagine he's busy working on one or the other of those projects. We can wait, can't we? Frowner



Teri Robert
Lead Expert, MyMigraineConnection
terimmc@helpforheadaches.com




The generally long periods of time between my Migraines are the result of working with a Migraine specialist to refine my preventive regimen. You can see my current regimen HERE.

 
Posts: 3005 | Location: West Virginia | Registered: 01-11-2007Reply With QuoteEdit or Delete MessageReport This Post
Master
Picture of MedievalWriter
Posted Hide Post
Thanks for asking, BTW. I appreciate your concern.

You care, at least! Smiler



8']

http://stormlaughter.blogspot.com/
http://stormlaughter.deviantart.com/
basilar-artery migraine, MAV, BPPV, migraine with and without aura, cluster headaches, but no tension headaches! W00t! Smiler
 
Posts: 454 | Location: Central Alabama | Registered: 01-13-2007Reply With QuoteEdit or Delete MessageReport This Post
Supreme Guru
Picture of Teri Robert
Posted Hide Post
You're welcome, sweetie. When you come here, you KNOW people care.

hugs,

quote:
Originally posted by MedievalWriter:
Thanks for asking, BTW. I appreciate your concern.

You care, at least! Smiler



Teri Robert
Lead Expert, MyMigraineConnection
terimmc@helpforheadaches.com




The generally long periods of time between my Migraines are the result of working with a Migraine specialist to refine my preventive regimen. You can see my current regimen HERE.

 
Posts: 3005 | Location: West Virginia | Registered: 01-11-2007Reply With QuoteEdit or Delete MessageReport This Post
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