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Sandy_C
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Re: Cluster lump on back of neck
« Reply #25 on: Oct 13th, 2006, 3:13pm »
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on Oct 13th, 2006, 2:12am, leftsideonly wrote:
Never noticed a lump on my neck but I have one in my mouth. Its on the roof of my mouth (On the left side of course like the pain) Right where you can't feel bone anymore before the throat. I suck on ice cubes or popsickles during my attack to help ease the pain. Oh ya it also gets hot to the touch. Weird huh?/

 
 
I'm glad you mentioned the pain on the roof of the mouth, Andre, because I get that too.  Mine is not necessarily a lump, because it runs from above the upper back molar and runs all the way across the roof of my mouth to the center - it's more like a strip of swollen tissue.  I think it's a vastly swollen blood vessel, because I don't think a nerve causes that kind of swelling (does it anyone?).  My swelling is very painful, and also very hot as well.  I jam ice cubes in my mouth and hold them against the swelling just to try to relieve some of the pain.  What I find interesting is that I've been out of cycle for 14 months now, and if I run my tongue across the roof of my mouth, I can still feel that the right side (I'm a rightie) is somewhat  more swollen than the left??
 
So, in my opinion - no it's not weird at all.  I'd like to hear if anyone else has this problem during hits.  
 
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Re: Cluster lump on back of neck
« Reply #26 on: Oct 13th, 2006, 9:39pm »
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So if it is true that my cluster lump is associated with the lower cervical ganglion, and Barry's is associated with the middle cervical ganglion, it sounds as if Annette's husband's is associated with the sphenopalatine ganglion at the base of the skull.  Perhaps Matt's is associated with another ganglion in the jaw.  Don't know about the ones in the roof of the mouth--perhaps there's another there.  My understanding of anatomy is not so hot.
 
This is getting rather interesting, I think.  
 
Is the swelling in the ganglion itself, or is it in the tissue surrounding the ganglion?  Either one could cause a lump, I would think.
 
Here's a further question:  When the blood vessels in the head swell during a hit, are they venous vessels, arterial vessels, or both?  I'd think if arterial vessels were swelling, that the pain would be pulsating--and it doesn't seem to do that.
 
Interesting thread altogether.
 
Best regards,
 
George
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Re: Cluster lump on back of neck
« Reply #27 on: Oct 14th, 2006, 12:36am »
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Hi all,
 
So far what I have come up with is this lump is one of the several ganglions of the sympathetic nervous system , of the cervical chain to be exact, as the picture BobP posted.
 
It has several ganglions which are fusions of nerve bundles. Where a clusterhead gets his or her lump depends on which ganglion is affected.  
 
The sympathetic nervous system is the autonomic nervous system. Interruption to its function leads to motor nerve failure causing the Horners syndrome of droopy eyelids and teary eye and sweaty brow.  
 
The cervical ganglion lies right next to the carotid artery which gets swollen and pulsating before and during a cluster attack.  
 
George, both arteries and veins in the brain become swollen and the carotid artery is the supplier which siphons the blood at a much higher speed and flow volume before and during an attack.  
 
This gives rise to many interesting questions which I have not been able to find an answer to yet:
 
1- If these ganglions regulate motor nerves only and not sensory nerves, how can cooling them down with ice relieve the pain ?
 
2- Is it the swelling and pulsating carotid artery next to it that "irritate" it and then lead to inflammation of the ganglion?
 
3- If its inflammation that causes the ganglion to swell how can it go down so quickly as soon as the attack wears off?
 
4- Can one "do" something to the ganglion apart from ice that may stop or block or greatly reduce the pain of CH?  
 
5- Occipital Nerve Block can reduce the pain greatly as Alchemy would tell us, then can something similar be done to these cervical ganglions ?
 
The searche continues. I will post again once I find out more information on these things.
 
Thanks for your interest.
 
Painfree wishes to all.
 
Annette
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Re: Cluster lump on back of neck
« Reply #28 on: Oct 14th, 2006, 4:21am »
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I'm with Sandy and Andre 100%.  I get a terrifically tender spot on my upper back palate like a pencil is being driven into it, through my nostril, and directly into my eye in a perfect straight line.  Dunno if there's a nerve or a blood vessel follows that exact line but it's very real to me.
 
Equally there's so many little things that crop up which rarely, if ever, get mentioned here.  Anyone ever noticed a tiny red line across the bridge of the nose?  Always wondered what it was then came across a tiny reference to it in a headache book and it seems it's a typical CH syndrome.
 
Ah, well.  Better days ahead.
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Re: Cluster lump on back of neck
« Reply #29 on: Oct 14th, 2006, 12:20pm »
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Ya see, this is the kinda thread that makes all the other stuff unimportant-way to go!!!!
I always get a ganglion lump, upper cervical ganglion (thanks!!!) and it is noticeable to my husband, and immediately preceeds the clamy sweating thing, which immediately preceeds a hit.  The swelling leaves as fast as it starts-hubby has been giving me a neck rub, felt the lump rise up then said-you're getting clammy-then he backs away really fast.  
Ice affects inflammation-but in my case does nothing for the lump-the lump just seems to be a precursor and I don't really treat it-the hit is coming too soon to worry about that.  
I know this sounds weird or something, but I'm glad I'm not the only one who gets these and I betcha there are important links for researchers here.
Man, is this place awesome!!!!
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Re: Cluster lump on back of neck
« Reply #30 on: Oct 14th, 2006, 1:25pm »
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Hi everyone,
 
Now its getting interesting!
 
I have found that cluster headache was used to be called sphenopalatine neuralgia, amongst other names.
 
The sphenopalatine ganglion is a bundle of nerves from the vidian nerve, on the 2nd branch of the trigeminal nerve. Its part of the parasympathetic nervous system and it supplies the eye, the forehead, the nose and the palate ( roof of mouth ). Its the one that causes the eyelid to droop, the forehead to sweat, the pupil to constrict, the eye to tear and the nose to block.  
 
Its also called nitrergic nerves which release nitric oxide when inflammed. Nitric oxide then causes a Ca+ influx which in turn causes the cerebral ( brain ) blood vessels to spasm and/or swell.  
 
This explains why medication that block nitric oxide and Ca+ channels work to prevent cluster attacks.
 
Its also interesting that Roy noticed that when his cluster switched side so did his ganglion lump to the corresponding side.
 
It appears that inflammation of these nerve ganglions directly affect the brains blood vessels leading to a cluster attack and that the inflammed nerves themselves add to the pain felt during an attack. That would explain why ice or heat applied directly over the swollen ganglion would help to reduce the pain, fairly considerably too I may add.
 
Therefore if in some way, we can prevent these nerves from getting inflammed we might be able to prevent most if not all attacks and/or at least reduce the pain to a more manageable level.
 
Take care and again thank you all for reading and for contributing.
 
Painfree wishes to all.
 
 
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Re: Cluster lump on back of neck
« Reply #31 on: Oct 14th, 2006, 4:27pm »
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Like Sandy, I have always been focusing elsewhere.  But during my last headache cycle, I was watching for "the lump" and did find it--base of the scull where it meets the neck on the affected side.  It hung around until my cycle had ceased.
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Re: Cluster lump on back of neck
« Reply #32 on: Oct 14th, 2006, 11:17pm »
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No clusterlumps here that I know about. A little swelling near my eye, but not on my neck.
 
Also wanted to mention that I have had 2 bi-lateral  Sphenopalatine Ganglion Blocks (1 week apart from each other) . It was scary as hell and made the attacks grow out of control. It put a real hurting on me for sure. Never again !!
 
RFG, Radio Frequency Generator, didn't help any either.
 
Goodluck lumpy !  Wink   (just kiddin')
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Re: Cluster lump on back of neck
« Reply #33 on: Oct 14th, 2006, 11:57pm »
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Hi Unsolved,
 
Thanks for posting your experience with sphenopalatine block. So the blocks didnt help AND made the attacks worse?
 
Did the specialist explain why or dont they know either?
 
Is the antihistamine treatment still working for you?
 
Thanks heaps and painfree wishes to you.
 
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Re: Cluster lump on back of neck
« Reply #34 on: Oct 16th, 2006, 9:32pm »
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Wow, what an interesting set of notes to read.  Before seeing this I never thought to notice.  Will look for it now. [/b]THANKS FOR THE INFO.[b]
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Re: Cluster lump on back of neck
« Reply #35 on: Oct 17th, 2006, 8:31am »
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Not a cluster sufferer here, but do have migraines and do get *lump* around C2-C1 area.  Can put pressure on it and the migraine will ease up, leave off pressure and it's like getting hit with a sledgehammer.
 
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Re: Cluster lump on back of neck
« Reply #36 on: Oct 17th, 2006, 3:16pm »
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Popcicles shoved against the roof of my mouth.  I thought I was the only one doing that. I t does seem to help crazy as it sounds.
 
 
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Re: Cluster lump on back of neck
« Reply #37 on: Oct 19th, 2006, 7:54pm »
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hello bb
 
         I also get a lump at the base of my skull at the back of my neck' it's off to the right (the cluster side of my head).and larger than a sugar cube more like like a walnut shell. during attacks i grind that lump into a hard ice pack preferably one that has good edges for trying to smash it or break it down. use a couple ice packs one for grinding one to cool the effected side near the temple. Also I went to a chiropractor and he diaginosed me with cervical kyphosis( loss of curve in the neck). just thought you'd like to know hang in there and pain free wishes .ps. dose anyone get pain and numbness in their arm and shoulder structure during cycle? My treatment plan is as follows lots of water, vitiamins , predisone taper ,verapamil ,meleatonin , ice packs and last but not least oxygen oh and if it,s good and cold outside jumping jacks and shorts and if that fails the concrete is a good destraction
« Last Edit: Oct 19th, 2006, 8:25pm by keithr1024 » IP Logged
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Re: Cluster lump on back of neck
« Reply #38 on: Oct 19th, 2006, 11:05pm »
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Hi Keith ,
 
Thanks for your post, its interesting that you mean shoulder pain.
 
The cluster lump as I described is actually the swollen ganglion as part of the autonomic nerve chain, it can cause referred pain to the upper body including shoulders and arms.
 
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Re: Cluster lump on back of neck
« Reply #39 on: Oct 22nd, 2006, 9:25am »
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Copied from another thread as it is just as relevant here.
 
on Oct 22nd, 2006, 9:16am, keithr1024 wrote:
there was talk of the cluster lump in earlier post and after that i led me to do some searching and i found this under human circadian rhythm   Melanopsin is a photopigment found in specialized ganglion cells of the retina that are involved in the regulation of circadian rhythms and pupillary reflex. In structure, melanopsin is an opsin, a variety of G-protein-coupled receptor. It is presumed that melanopsin signals through a G-protein of the Gq family, as invertebrate opsins are known to do, but this is not firmly established. It is also believed to be similar to invertebrate opsins in possessing an intrinsic photoisomerase activity. i really don't know if this has any bearing on ch's but it might lead some of the  members to search in a productive direction.
keep on keeping on everyone!
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Re: Cluster lump on back of neck
« Reply #40 on: Oct 23rd, 2006, 12:07am »
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I'm impressed by the knowledge of some of these folks but none of that means much to me - sorry. But I was wondering about something - I get a lump in my mouth - on the roof near the throat - very hot to touch during an attack and gets better with ice applied directly to it. I am new here but thought I'd throw this out there - I notice alot of us has had some sort of head trama - I've certainly had more than my share. I got shot in the head when I was younger, the bullet went in one side of my head and out the other - but through the roof of the mouth. I wonder if the "lump" has something to do with the head trama. Maybe some of these folks that have the "lump" in the neck can expound upon weather or not they have had head or neck trama due to like an auto accident or something. I noticed on fella had a lump in his jaw - could this "lump" have something to do with trama to the jaw?? Or if other folks have a "lump" in other places on the head.  
Anyway I definately have a lump that is associated with my headaches. It's always there even when I'm not in an episode - just very sensative and hot during an attack.
 
 
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Re: Cluster lump on back of neck
« Reply #41 on: Oct 23rd, 2006, 12:29am »
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Hello Andre,
 
These cluster ganglion lumps are apparently swollen and inflammed nerve bundles, which became hot and tender during an attack and usually for the length of the cycle.
 
There is no literature to say that they are caused by trauma.
 
Lumps caused by physical traumas such as a gun shot wound would be scar tissues and if it causes pain would do so ALL the time, not just during a cluster attack or cycle.
 
It seems like no matter where these lumps are, applying heat or cold or pressure to them reduces the cluster pain in the head itself, which is a worthwhile thing to do.
 
As to why and how it  works, I do not yet know, but plan to ask the Pain management specialist and the Neuro professor the next time I get to see them.
 
Take care and PF wishes to you.
 
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Re: Cluster lump on back of neck
« Reply #42 on: Mar 6th, 2007, 9:49pm »
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Bumping this as there has been a few mentions of the cluster lump lately.
 
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Re: Cluster lump on back of neck
« Reply #43 on: Mar 6th, 2007, 9:57pm »
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I've never read any CH literature that mentioned this 'lump'. I do not get this effect. I don't doubt your stories though. I have read that steroids can cause this 'lump' after excessive use. I'm wondering how many of you have used steroids ?
 
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Re: Cluster lump on back of neck
« Reply #44 on: Mar 6th, 2007, 10:15pm »
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Its because the lay term cluster lump is not used academically. Its actually the stellate ganglion. If you look up stellate ganglion, parasympathetic nerve pathways, autonomic features and cluster headaches, you will find a lot of articles.
 
It seems that not everyone has one though and even in the same person, sometimes its there and sometimes its not. If its swollen, hot and tender during an attack then putting wet ice on it then seems to help the pain a fair bit.
 
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Re: Cluster lump on back of neck
« Reply #45 on: Mar 6th, 2007, 11:40pm »
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What a truly small group we all belong to.  You can add Tony to the list.  He gets the ganglion knot at the base of his head to the right.  Sometimes I apply great pressure on it and he says it relieves the pain.  But I have to be really laying into it.  Don't want to push too hard.
 
BB, that post about what CH used to be called is going to be very useful.  Now I can convey to anybody that will listen, a more comprehensive description of CH.
 
Remember Jim?  He said that back in the 1950's, CH was called Hornton's headaches (not exactly sure about the Hornton name, but it is something like that).  So, it's not surprising to hear another name for CH.  Great find.
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Re: Cluster lump on back of neck
« Reply #46 on: Mar 14th, 2007, 4:58pm »
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on Mar 6th, 2007, 11:40pm, froggy wrote:

Remember Jim?  He said that back in the 1950's, CH was called Hornton's headaches (not exactly sure about the Hornton name, but it is something like that).  So, it's not surprising to hear another name for CH.  Great find.

 
I believe it's Horton's.  No relation to the elephant who heard a who. Wink
 
You may also see it as Horton-Gilmour, Horton-Magath-Brown, Hutchinson-Horton, or similar.  References below for the curious and pain free.
 
J. Hutchinson:
Diseases of the arteries. I. On a peculiar form of thrombotic arteritis of the aged which is sometimes productive of gangrene.
Archives of Surgery, London, 1889; 1: 323.
 
 
B. T. Horton, T. B. Magath, G. E. Brown:
An undescribed form of arteritis of the temporal vessels.  
Mayo Clinic Proceedings, Rochester, Minnesota, 1932, 7: 700-1.
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Re: Cluster lump on back of neck
« Reply #47 on: Mar 14th, 2007, 6:20pm »
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What you are thinking of is Horner's syndrome:
 
http://www.revoptom.com/handbook/sect6g.htm
 
It's what causes the droopy eye in clusterheads.
 
Interesting connection with the occipital nerve stimulation being successful?
 
Also there is Bing-Horton syndrom:
 
http://www.whonamedit.com/synd.cfm/1576.html
which are the headaches themselves.
 
Too many Hor's in this thing!
« Last Edit: Mar 14th, 2007, 6:27pm by Bob P » IP Logged

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Re: Cluster lump on back of neck
« Reply #48 on: Mar 14th, 2007, 9:58pm »
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Hi
 
I never had a lump I did use Ice on the back of my neck seems like that just made me cold.  
Glad that the ice works for some Smiley lol.. on the horton hears a who comment Tongue good one.
« Last Edit: Mar 14th, 2007, 10:00pm by Julygirl0721 » IP Logged
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Re: Cluster lump on back of neck
« Reply #49 on: Mar 14th, 2007, 10:57pm »
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on Mar 14th, 2007, 9:58pm, Julygirl0721 wrote:
Hi
 
I never had a lump I did use Ice on the back of my neck seems like that just made me cold.  
Glad that the ice works for some Smiley lol.. on the horton hears a who comment Tongue good one.

 
 
So far the consencus seems to be unless you get a hot tender swollen ganglion lump, putting ice on your neck doesnt do much to the CH pain. But if you do, then it seems to help a fair bit.
 
The lump may not be on the back of the neck though, maybe more onto one side then the other, most commonly on the same side as the CH.
 
Annette
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