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Cluster lump on back of neck
« on: Oct 7th, 2006, 11:33am »
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Hello everyone
 
Our kind lady Margi told me about this cluster " lump" that most clusterheads have. Apparently its a ganglion of some sort and it "connects " to the hypothalamus and it gets swollen and palpable during cluster.
 
Last night when Daniel had his attack, I felt the base of his neck and sure enough there was this soft but slightly firm lump at the base of his skull in the middle, its about the size of a sugar cube. It felt spongy to touch and was quite hot.
 
When I applied ice wrapped in a wet tower directly to this 'lump" it soothed the pain immediately and quite considerably.
 
As the attack eased off, this lump felt less and less hot and less and less swollen and by the time the drilling in his eye stopped, the lump went too.
 
I have been searching for any literacy related or mentioning of this ganglion but could not find any, not even on this website.
 
I am quite intrigued by this and would like to hear from anyone if they know what it is or have seen/felt one.
 
Also try applying ice in wet towel like I have done and see if it would help the pain too.  Smiley
 
Thank you all and painfree wishes to all of us.
 
Annette
« Last Edit: Oct 7th, 2006, 11:34am by BB » IP Logged
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Re: Cluster lump on back of neck
« Reply #1 on: Oct 7th, 2006, 2:12pm »
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I never had one of those, but read of many folks that have.
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Re: Cluster lump on back of neck
« Reply #2 on: Oct 7th, 2006, 2:24pm »
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I have this sometimes Annette but not all times, I've found by accident that ice on the back of the neck is hugely effective. I generally use an icepack on the back of my neck as well as one against my face if I don't have O2 to hand, I can abort so fast with O2 as a rule that I don't bother with ice.
Its always good to have tips though and this one and the way its explained so well will be really helpful.
Thanks alot  Smiley
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Re: Cluster lump on back of neck
« Reply #3 on: Oct 7th, 2006, 3:40pm »
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That's fascinating, I never heard that.  Is there any literature on this lump?
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Re: Cluster lump on back of neck
« Reply #4 on: Oct 7th, 2006, 8:22pm »
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Hi Annette,
 
I always get a ganglion lump at the base of my neck (located approximately two centimeters to the left of my extreme upper thoracic vertabrae--not the cervical vertebrae, about the level where the top of the shoulder is) during a cycle.  Your description of how it feels to palpitation is quite accurate.  It's painful and tender to the touch, and remains so for the duration of the cycle.  It doesn't entirely subside until the cycle has been over for a week or so.
 
During a hit, this area is quite painful--although it in no way compares to the knifepoint behind the eye.
 
I have no idea what the mechanism of this might be, but it is invariably associated with my cluster cycles--I never notice it when I'm out of cycle.
 
Best,
 
George  
 
Edited to add:
 
Ice applied to this area helps in the short term, but ice is something I don't use on my neck or head unless I have no other options.  When removed, (in my experience) it causes a rebound, and another peak begins.  I usually end up with a massive shadow that lasts into the next day.  I'm always sorry when I use ice.
« Last Edit: Oct 7th, 2006, 8:38pm by George_J » IP Logged

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Re: Cluster lump on back of neck
« Reply #5 on: Oct 8th, 2006, 3:53am »
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Hi George,
 
Its interesting to hear that applying ice caused rebound and shadow for you.
 
Did you put the ice straight on and then remove it straight off? I am just wondering if it was the sudden change in tempeature that caused the rebound.
 
Ice ( coldness to be exact ) is a vasocontrictor also. But if its applied and then removed suddenly it can cause a sudden change in temperature that can lead to either spasming or rebound swelling of the affected blood vessels.
 
When I applied the ice, it was applied after I had cool the spot down with some cold water first, also I made sure that the towel was quite wet as water transmits the coldness without the "shock" of the sudden temperature change.  
 
Once the attack was over, I removed the ice and put wet towel on his neck again for a while to help the skin normalise the temperature gradually. He didnt get any rebound headaches or shadows after.
 
I wonder if this would help stop the rebound headaches and shadow for you too George?
 
Thanks for reading. PF wishes to all.
 
Annette
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Re: Cluster lump on back of neck
« Reply #6 on: Oct 8th, 2006, 9:22am »
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Thats a really good idea Annette, thanks for sharing it. I've never rebounded from ice (I do always wrap it though but in a dry cloth) that tip makes alot of sense though and I'll definitely try it.
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Re: Cluster lump on back of neck
« Reply #7 on: Oct 8th, 2006, 9:35am »
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Yes, I have been applying ice directly, and then removing it.
 
I like your suggestion, Annette, and will give it a try next time.  It makes a lot of sense.
 
Best wishes and thank you,
 
George
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Re: Cluster lump on back of neck
« Reply #8 on: Oct 8th, 2006, 12:34pm »
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I don't get it on my neck, I get it on my jaw, its not big, but its there and is very sensitive. It is one reason I had so much dental work before I found out what CH is. It goes away with  the pain. Ice doesn't work for me as well as heat. I have a cloth sack that is filled with field corn that I put in a microwave. It holds the heat for a long time and molds to wherever I place it.
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Re: Cluster lump on back of neck
« Reply #9 on: Oct 8th, 2006, 3:53pm »
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I dont know if this is a Ganglion or a Trigger point ( a lump caused by an acculation of Lactic Acid ) I had one Dr. inject them with Lidacain to see if it would help my CH. Now I just mash on them with ice seems to do just as good.
 
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Re: Cluster lump on back of neck
« Reply #10 on: Oct 8th, 2006, 7:23pm »
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mine is called Harry
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Re: Cluster lump on back of neck
« Reply #11 on: Oct 8th, 2006, 9:35pm »
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on Oct 8th, 2006, 3:53pm, lskilly wrote:
I dont know if this is a Ganglion or a Trigger point ( a lump caused by an acculation of Lactic Acid ) I had one Dr. inject them with Lidacain to see if it would help my CH. Now I just mash on them with ice seems to do just as good.
 
Skilly

 
 
Thanks Skilly
 
Its very interesting, I will look more into accumulation of lactic acid.
 
Did the injection stop the pain or abort the cluster at all?
 
 
Annette
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Re: Cluster lump on back of neck
« Reply #12 on: Oct 9th, 2006, 11:12am »
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I get the lump
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Re: Cluster lump on back of neck
« Reply #13 on: Oct 9th, 2006, 12:05pm »
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Annette,
  Thanks for this posting, I don't know if I get a lump, but I have an area at the base of the skull just to the side of neck that is always hot, it switches sides when the headache does.  I have for years sat with Ice packs on this area during attacks.  It does really help, I usually leave it there untill the pain has well gone.  During shadows this area is also tender.  Cheers Roy Huh
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Re: Cluster lump on back of neck
« Reply #14 on: Oct 9th, 2006, 6:42pm »
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It's been 8+ years since I had the treatment to the Trigger points, but after 3 trys We gave up on it. I dont think it made any difference at all. When I was having CH several times a day for 10 years you willingly submit to anything that might work.
 
The only thing that has really made a difference for me was and is Biofeedback. (self hypnosis) I was able to abort the CH 8 years ago and then I quit practicing becasue I thought I had them stopped forever. Pretty dumb of me. They are back with a vengance now.
 
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Re: Cluster lump on back of neck
« Reply #15 on: Oct 9th, 2006, 10:35pm »
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I also get the ganglion lump approximately two centimetres to the left of my cervical spine at about C4 - C5.

It’s one of the first indicator's that I’m about to get hit as I can feel the swelling and tightness.
I found out about it when I was getting a bad hit and knew nothing about CH, in an effort to wrench my head off my shoulders and throw it as far as I could I found that if I pushed my index finger into the lump I could get some relief for a mini second.
 
I have a TENS machine and was willing to try anything to get me out of the hell I was in and I found that I could get some minor relief by applying the pads to either side of the lump and with time could reduce the lump, this in turn reduced the intensity of the hit a little.
 
Once I was diagnosed with CH and found this site I read where some people could get relief by standing under the shower with the water as hot as they could stand running on the back of their neck, it didn’t work for me it just intensified the hit.
I’ve since found out about the ice trick and for me it works a treat and as Helen says if you wrap the ice or freezer pack in a dry hand towel you won’t get the sudden rush of cold and you can leave it on for any length of time.
When at home or where I can keep them in a freezer I use the gel filled cold packs that you will find in most large first aid kits; they are more pliable than straight ice and can mould to the area, what would be ideal is the silicon filled breast implant bag as it’s the perfect shape to fit that area “I’m not kidding “but where I could get one of those would be anyone’s guess.
 
Kind Regards
Barry
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Re: Cluster lump on back of neck
« Reply #16 on: Oct 10th, 2006, 10:44am »
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sorry I haven't answered your email yet, Annette - just a busy weekend.
 
If you're searching the archives for more info on this, try "cluster bump" - I think that was the terminology used when the subject first came up.
 
I've never heard that it was filled with lactic acid though.   Undecided
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Re: Cluster lump on back of neck
« Reply #17 on: Oct 10th, 2006, 1:34pm »
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Thanks for the very interesting post, Annette (and Margie, too, who talked about a "cluster lump"Wink.  
 
I can't say that I've ever noticed a lump during a hit, probably because I'm so focused on the pain going on in my right eye and right side of my head.  But, I have noticed that the back of my neck is very sore during and immediately after the hit.  I've always put it down to tension, but next cycle, I'll definitely check for a lump of some sort.
 
I also use the gel packs (I am the proud owner of 6 of em - 4 at home and 2 at work).  I use two packs during a hit, wrapped in a soft towel.  I started out with just the gel pack without wrapping it, but ended up with "freezer burn" on my face - not pretty.  One pack goes directly above and partially covering my right eye, and the other goes along the right side of my face, covering my ear down to my jaw to help with the awful pain I get in my ear, jaw, molars, and across the roof of my mouth (I'm also sucking on ice cubes).  I do not immediately remove the packs when the hit is over, but just sit back, leave them in place and let them warm up slowly.  Doing this has never produced rebounds - or freezer burn  Grin
 
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Re: Cluster lump on back of neck
« Reply #18 on: Oct 10th, 2006, 1:55pm »
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We keep 3 gel packs on hand at all times.  Mike lays one on the back of his neck at onset and leaves it there until he either melts it or the attack is gone.  
 
We put one inside a cloth gift bag to lessen the shock of the cold at first.  After awhile, he takes it out of the bag and applies it directly.
 
Annette, I just typed "cluster headache ganglion lumps" into google.com and it came up with quite a few links.
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Re: Cluster lump on back of neck
« Reply #19 on: Oct 10th, 2006, 6:06pm »
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The only input to the eye from the spinal cord is from the sympathetic system, from the upper cervical ganglion. This supplies the size of the pupil, sensation of the face, sweat glands of the face, and the eye lid muscles.  This could be our lump.
 
Dr. Robinson at the Vancouver Conference said that there was a nerve ganglion there.
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Re: Cluster lump on back of neck
« Reply #20 on: Oct 10th, 2006, 6:56pm »
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Through ten years of misdiagnosis I always believed that it was the lump causing the headaches, as though a nerve was pinched.  Massage was very nice, just ineffective, and the best relief I got was standing in the shower turning it from hot to cold, hot to cold etc.  (Got it wrong once, scalded my scalp, and half my hair fell out.  Didn't even realise til morning.)
 
A neuro I visited actually injected it hoping to break it up.  Don't know what he used but it was strangest feeling imaginable, ice chrystals floating in hot air.  Did nothing for the headaches but at least it stopped my wallet from pulling my pants down.
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Re: Cluster lump on back of neck
« Reply #21 on: Oct 12th, 2006, 5:15pm »
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I also get the lump which is noticeable at the start of an attack.
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Re: Cluster lump on back of neck
« Reply #22 on: Oct 13th, 2006, 1:00am »
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Barry, if I'm reading the diagrams that have been posted correctly, (and I may not be) you're getting the cluster lump at the middle cervical ganglion near C4/C5 and I'm getting it at the lower cervical ganglion near C7/T1 .
 
Interesting.
 
Best,
 
George
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Re: Cluster lump on back of neck
« Reply #23 on: Oct 13th, 2006, 2:12am »
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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?/
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Re: Cluster lump on back of neck
« Reply #24 on: Oct 13th, 2006, 7:35am »
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on Oct 13th, 2006, 1:00am, georgej wrote:
Barry, if I'm reading the diagrams that have been posted correctly, (and I may not be) you're getting the cluster lump at the middle cervical ganglion near C4/C5 and I'm getting it at the lower cervical ganglion near C7/T1 .
 
Interesting.
 
Best,
 
George

 
Hi George
I may be reading the diagrams wrongly myself but if I draw a line from the bottom of my ear lobe around to the back of my neck that is the location of the lump.
Looking at the diagram that Bob posted it would line up with the middle cervical ganglion.
When the lump is active the tightness starts at this point and travels upward toward the left side of my head at an angle of about 45 degrees.  
 
Regards
Barry
 
PS: Good diagram Bob, I'm going to store that one in my little trove of info.
Barry
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