Hi.  I'm 41 female and have a 25 year history of migraines with visual aura and vision loss.  I have just had my longest run of back to back migraines, ocular migraines and this horrible new pain!

My eye doctor is suggesting that I have been suffering from the above combination and now cluster headaches.  I took the cluster quiz and had 6/8 answers for migraines and 5/8 for the clusters.

Well, I'm here to learn more about clusters.  The new pain is situated just above my temple, I get numb behind my eye and on my cheek bone and into my ear.  The pain is not easily described but I have invisioned myself (ok this is going to sound horrible but..) cutting off half my head to rid the pain.  I have doubled the recommend OTC meds and it will not touch the pain.

Thats my story thanks for reading.

Have you found a Neurologist to work with?

There will be others who follow this post that are able to direct you to the finding of a Neuro or Headache specialist in your area.

Don't mess with your medications without the advice and council of a competent Doctor.

Take advantage of the collective knowledge available on this site.

All the best.

 
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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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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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:

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Hi lynxgal !  Welcome to the board.

Your description doesn't sound horrible, many of us have imagined worse on a daily basis.  This is normal.  One way I describe the pain is...

Take a red hot fire poker and ram it in your eye until it hits the middle part of your head churn it around a bit and you have a Cluster Headache.  This description also works when some Dummy offers you a Tylenol or aspirin for the pain ...   ;D

You are not alone I've often said a bullet to the brain would be better at least it wouldn't hurt as long  ;D  But it's not the way to go.

Be sure to get a good Neuro and try to keep your sense of humor intact.  Having a good support system in place helps as well.  

Keep your chin up and stay in touch.

Thank you for the replies  :)

I do have a Neurologist as I have recently been dx with a demylinating polyneuropathy (PN).  He specializes in neuromuscular disorders and PN.

Bob thank you for the links!  I will be sure to read them through once my vision clears some.

I thought having migraines was bad enough this is definately worse.  My eye doc is lucky I didn't bash him when he was checking my eyes with that darn light  ;D

"This description also works when some Dummy offers you a Tylenol or aspirin for the pain ...   "  thanks for the laugh!

Does anybodies pain dull some?   Today it's there sort of on and off but no where near as bad as it was.  Hoping this is a sigh it is going away. ::)

Newly diagnosed CH is often very frustrating because the quality/site/intensity, etc. of pain is unstable. Not uncommon for it take months, even years, before a stable experience emerges.
Makes for frustration, to be sure, and is yet another reason to be working with a headache specialist (vs. the average neurologist).

lynxgal wrote on Jun 27^th, 2009 at 4:49pm:

"This description also works when some Dummy offers you a Tylenol or aspirin for the pain ...   "  thanks for the laugh! Does anybodies pain dull some?   Today it's there sort of on and off but no where near as bad as it was.  Hoping this is a sigh it is going away.  ::)

You are quite welcome  :D  

Keeping a sense of humor about this is a must for me at least.  
Especially when you feel like your brain has just killed about a million brain cells before, during and after a CH Attack.   There are times when thinking and speaking are very difficult due to CH.    :-/

As to deminished pain... there are times when a CH attack is farther down on the kip scale than other times of CH attack.  See The Kip Scale for more info. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Thanks for the link on the Kip Scale.  Very Interesting.  I also had a look at the Cluster Traits and was a bit floored by what I read.

I always thought that my first over the top migraine was when I was 17.  I woke up at about 3 in the morning with my first "worst ever" headache.  I remember holding my head as hard as I could and rocked back and forth and cried.  I remember that starting out as a one sided headache but it ended up a whole headed thing.  I didn't start to get visual auras before my migraines till I was well into my 20's.  Optical migraines or silent migraines started 3 years ago.

After reading the traits I wonder if that was a cluster not a migraine.

Lynx,

I have both headaches also and it's just a bundle of laughs...

I'm with the others - Find a neuro who will work (and listen) with you. Read read read here. Print off and take info to him/her and be an advocate in your treatment (docs don't know it all - we're here to tell you that from experience).

Aura's are a lot of fun -- My latest is "mildew" - I smell mildew on everything :-? - it's getting to be a joke in my house. I washed a load of clothes three times before I figured out it was ME not the clothes!  Gotta laugh - it's too funny to cry!  ;D I'm ready to "move on" to something like a field of flowers or something more "pleasant".  ;)

The pain is horrible, but keeping a sense of humor helps a lot. This board is good for that. We UNDERSTAND the pain because we're going thru it also and have learned that if we laugh at ourselves we can cope a lot better.

Stick around - ask questions - we're here to help.

Welcome to Clusterville.

Hugs BD :-*

Thank you for the welcomes :)

Barbara - ugh I get phantom smells as an aura a few days before a migraine sometimes.... I have two....burning plastic and that faint...I think something is burning but I can't quite figure out where its coming from.....walk around the house do you smell that?  where is it coming from? *snif, snif* somethings burning somewhere but just when i think I have found the source its gone.   :-? (during all this the rest of the family is looking at me like I am off my rocker  ;D )

Then I realize awww crap...I'm in for another one. Then I wonder why do I always walk around trying to figure out where it is coming from when I really should know by now it's not real? :D

I too get the burning and a moldy smell at times before or during an attack.  I also get the odd looks from co-workers as well as family when I mention I smell one of either  ;D  
I really hate the moldy smell, mold always makes me gag  [smiley=hurl.gif]

My Dad always like to tease me and tells me "It's You"  ::)  If you knew my Dad you'd know that comment can be taken more than one way   :o