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Topic: Atypical Cluster Headaches (Read 2229 times) |
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Beverly
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Atypical Cluster Headaches
« on: May 6th, 2006, 3:27pm » |
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Hi everyone. I did a forum search on "atypical" and only one post turned up. Tanner (Tim) said he suffered from atypical cluster headaches. My husband also suffers from atypical clusters. His current one has lasted over three weeks. He finally saw the doctor yesterday and got a demerol injection. So far, so good.
We've been dealing with this for about 10 years. He's gone through the normal regimen of MRIs, CT scans, a spinal, various meds, etc. He was originally diagnosed with Meniere's disease (which his mom and sister also both have), but after a few years, the headaches developed as the primary manifestation. They've been treated as migraines until the last neurologist he saw several months ago said no way are they migraines. He's the one who labeled them as atypical cluster headaches. Prior to this current attack, the longest headache episode was 11 days. This one definitely broke the record.
I was wondering if there were others here who have atypical clusters, or if the post I found by Tim was the rare exception?
Thanks and God bless.
Beverly
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| « Last Edit: May 6th, 2006, 3:27pm by Beverly » |
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Beverly
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More info
« Reply #1 on: May 6th, 2006, 4:01pm » |
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Just some more info. After reading some of your experiences in the other threads, I wanted to point out that atypical clusters are not entirely like the typical ones described. For instance, when I said that my husband's latest "episode" has lasted 3 weeks, I don't mean it as a season of multiple headaches. This has been one continuous period of pain. He cannot work during this time and just sits either in his chair in the living room watching TV or at his computer playing a computer game. There's not a lot of moving around or "head banging" as some of you described. He couldn't pace if he wanted to; he can barely walk during this time. I think even just the thought of hitting his head would be unbearable! The TV or computer game is the only thing that helps him take his mind off the constant pain so that he doesn't dwell on it. His headaches are not behind or to the side of one eye, they are generally centered. He wears cold compresses around his head to help. His sinuses do become "solid" and when that starts to break up, it is usually (but not always) an indication that the headache is subsiding. It never goes away while he is awake. Usually from shear exhaustion he'll finally go to bed for a prolonged sleep of 10-12 hours and when he wakes up, the headache is gone. He tries to sleep at regular intervals during the headache period, but it is usually very fitful and unrefreshing.
A single headache will last a week to 10 days normally, then he'll be OK for from 2 weeks to a couple of months. Then another headache will hit, taking him down for yet another 7-10 days.
The headaches you all describe sound equally horrid, but I just wanted to point out that there are apparently substantial differences in symptoms between typical and atypical cluster headaches.
Beverly
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LeLimey
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Re: Atypical Cluster Headaches
« Reply #2 on: May 6th, 2006, 4:14pm » |
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Beverly sometimes people get a label of CH when it isn't necessarily the right one, I'm not saying for one minute that is what has happend here but it's more important for you to get a right diagnosis and the correct meds than anything else. The wrong meds for the wrong condition can be potentially fatal so please don't think we are attacking if we ask questions or anything, we truly want to help.
There is a cluster quiz on the left buttons, see how you go filling that in. Also have a look at another condition which presents with a lot of similarities to CH but is considerably rarer.. hence maybe overlooked in diagnosis. Hemicrania Continua is one whereyou have constant pain with "spikes" periods of much worse pain (such as a CH "hit"
The good news is that although some conditions are rarer such as HC, there are meds which control them very well which will dramatically improve your husbands (and your!!) quality of life.
I hope this helps a bit
Helen
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Beverly
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Re: Atypical Cluster Headaches
« Reply #3 on: May 6th, 2006, 5:51pm » |
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LeLimay, thanks so much for the tip on Hemicrania Continua. Never heard of it before (and I've done lots of research trying to help my husband). I am going to research it!
Beverly
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floridian
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Re: Atypical Cluster Headaches
« Reply #4 on: May 6th, 2006, 11:13pm » |
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That's definitely atypical in the sense that it doesn't come close to the description of a clusterheadache. In fact, clusters are defined as unilateral (one sided) and this is due to the anatomical dysfuntion of the brain/trigeminal nerve that generates the headache.
Have they done an MRI?
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Beverly
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Re: Atypical Cluster Headaches
« Reply #5 on: May 7th, 2006, 1:20am » |
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Yes, they've done two or three MRIs. They found an area that was probably the result of a small stroke caused by a severe headache. But other than that, the MRIs didn't show anything helpful.
The Hemicrania Continua isn't sounding promising, either, because it is also only on one side of the head (hence the name HEMIcrania).
Since it doesn't seem that atypical cluster headaches are very well known here, here is a very brief description from the National Center for Biotechnology Information (NCBI):
Atypical cluster headaches are localized headaches that occur several times daily, usually without any headache-free periods. They differ from the typical chronic cluster headache in their location, duration, frequent shifting, and frequency.
I appreciate the suggestions. If anyone has other ideas of rare headaches, feel free to suggest them. I'll check them out.
Beverly
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Beverly
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Re: Atypical Cluster Headaches
« Reply #6 on: May 7th, 2006, 2:04am » |
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Just for information... Other types of headaches I've discovered since my last post and which I'm researching further are chronic post traumatic headache syndrome (my husband is very tall, 6'7", and has hit his head a number of times) and cervicogenic headaches.
Beverly
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floridian
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Re: Atypical Cluster Headaches
« Reply #7 on: May 7th, 2006, 10:06am » |
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Wow.
Has your husband found anything besides the demerol that will abort a headache or turn down the pain? What has he tried?
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| « Last Edit: May 7th, 2006, 10:07am by floridian » |
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mynm156
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Re: Atypical Cluster Headaches
« Reply #8 on: May 7th, 2006, 11:31am » |
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Hi!
The word Atypical pretty much means all of us for the most part we are not alike. If I am reading you right you husbands pain does not stop or is it like this. An acute onset of pain that increases and within a few mins reaches a very high level for 3 mins to a couple hours. This then decreases to a more manageable level that hangs on until the next attack? If his pain level stays the same for the whole time that does not sound like a Clusterheadache of any kind. Those of us who are chronic have gone several YEARS without a completly PAIN FREE day. We may not be in pain the WHOLE day. Demerol is not a very strong pain medication. It is 1/6 the strength of Morphine and neurotoxic. Over doses of demerol can easily kill a person. The pain meds that I have been placed on for breaking up the pain is 10X the Strength of morphine and this is only for a break it wont abort a headache. I am not trying to argue or discredit your diagnosis PAIN IS PAIN and we here ALL know pain too well and wish it upon noone. So good Luck I hope that this breaks up soon for your husband AND YOU!! Your and ANGEL to care enough to look it up and try to help!
MYNM156
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LeeS
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Re: Atypical Cluster Headaches
« Reply #9 on: May 9th, 2006, 1:29pm » |
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Hi Beverly
Although they say that hemicrania continua is strictly unilateral, they often say that about CH too - which many here will agree is not always the case - including me.
One of the authors of the following report once suggested that up to 5% of HC sufferers can switch sides; and approximately 1% have pain simultaneously on both sides. Not sure if it's true, but if no one else has asked yet, have you considered indomethacin?
http://www.medscape.com/viewarticle/488336
-Lee
Edit: Sorry, you may have to register on that link. Here's an introduction to save the hassle:
Quote:Posterior Hypothalamic and Brainstem Activation In Hemicrania Continua
Posted 09/07/2004
Manjit S. Matharu, BSc, MRCP; Anna S. Cohen, MRCP; David J. McGonigle, PhD; Nick Ward, MD; Richard S. Frackowiak, MD, DSc; Peter J. Goadsby, MD, PhD, DSc
Abstract and Introduction
Abstract
Objective: To determine the brain structures involved in mediating the pain of hemicrania continua using positron emission tomography.
Background: Hemicrania continua is a strictly unilateral, continuous headache of moderate intensity, with superimposed exacerbations of severe intensity that are accompanied by trigeminal autonomic features and migrainous symptoms. The syndrome is exquisitely responsive to indomethacin. Its clinical phenotype overlaps with that of the trigeminal autonomic headaches and migraine in which the hypothalamus and the brainstem, respectively, have been postulated to play central pathophysiologic roles. We hypothesized, based on the clinical phenotype, that hemicrania continua may involve activations in the hypothalamus, or dorsal rostral pons, or both. |
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| « Last Edit: May 9th, 2006, 1:33pm by LeeS » |
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Mattrf
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Re: Atypical Cluster Headaches
« Reply #10 on: May 9th, 2006, 3:16pm » |
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Beverly
I was diagnosed with CH two years ago but my symptoms like your husbands did not quite match CH. I am in pain all day only changing in severity, I get burning in the eye and stabbing pain but it only lasts for seconds but hurts like hell. None of the CH meds have helped so I decided to see a headache specialist and he said that what I had was called SUNCT and has some of the same things as CH but responds to medication that does not work on CH witch explains why the meds never helped me.
This is a very rare condition very few documented cases but what your husband is going through sounds a lot like what I am going through right now. I had my MRI and an MRA last week and am going to see him about treatment in about an hour.
I am not saying this is what your husband has, hell I don’t know if it is what I have yet but I am hopping it is so I can at least get some relief from it with proper meds.
This attack started in mid December and has not let up on me so I am coming close to loosing my sanity at this point and that is what forced me to get a second condition.
I will post again after I see the doctor and fin out what he says but you should look it up and see if it fits what your husband is going through.
PF wishes for your husband, tell him there is light at the end of the tunnel and the folks here will help him get there as they have been doing for me.
Matt
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There is no stronger a person then one who can deal with brain pain and still function.
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Mattrf
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Re: Atypical Cluster Headaches
« Reply #11 on: May 9th, 2006, 6:24pm » |
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Beverly
I was I just got back from the doctors and I am glad to say I do not have a tumor, thank god! A tumor is one of the possible causes for SUNCT.
I would ask his doctor if that may be what he has because it sounds like he has the same thing I do.
The doctor prescribed Lamictal (Lamotrigine) for me it is a six week regiment that increases dosage as you go and I hope will stop my head from hurting all the time.
Your doctor may not even know what SUNCT is since it is so rare so you might want to do some research yourself see if it fits and take the data with you when you see him next.
Hope this helps, if you have any questions for me just shoot me an email.
Matt
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Mattrf
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Re: Atypical Cluster Headaches
« Reply #12 on: May 25th, 2006, 4:45pm » |
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I am into my third week on the Lamictal (Lamotrigine) and have tapered up to two pills a day it is a 10 week taper to full strength. So far I think it has helped my pain level seems to have dropped a bit and I have had a couple hours that I almost felt normal so I am optimistic that this is going to work for me, knock on wood hay and for once not with my head. 
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There is no stronger a person then one who can deal with brain pain and still function.
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