Has anyone else had this? Sometimes right before I get a bad hit my neck will tighten up and I get terrible knot feeling in the neck muscles. The pain from neck feels like it is going up into my head. My wife puts ice on my neck during an attack and it feels good. After my CH has passed my neck is very sore and feels bruised. I can understand that my muscles in my neck are getting tight during a bad CH but I start having this feeling before the headache hits sometimes. I don't if this is related to the tingling and numbness I get on the side of my face.

A lot of peeople get the "CH lump' on the back of their neck and in the shoulder area. for me, it feels good to knead it, I never liked the ice on it! Another personal prefernce thing!

Joe

Yep, the "cluster lump".  Very common.  Not all of us get it, but quite a few do.

I've seen it explained as inflamed nerve ganglia, and surrounding tissue.  It seems to be most prominent during a hit.  Some get one at the base of the skull.  Others get one at around C-5 on the CH side of the spine.  A few get one on the cheek, or on the roof of the mouth.  Mine tends to show up near C-7/T-1 on the left side, where the shoulder meets the neck.

Wherever it occurs, although it doesn't compare to the focal point behind the eye, it's damned uncomfortable.  :P

Putting ice (or better yet, ice wrapped in a sopping wet cloth) seems to help to some extent.  I've found it's best (at least for me) to remove the ice gradually, finishing with a wet cloth.  Withdrawing the ice all at once can result in a nasty rebound.

It's probably natural to think about getting a deep-tissue massage to "loosen it up".  Only thing I can say is....don't.   [smiley=eek.gif] [smiley=eek5.gif]  It doesn't work, and it hurts like all get out.

Best,

George   

For me, tilting my head back as far as I can relieves some stress on the back of the neck, and helps ease some of the pain.

Good point about neck pain leading up to an attack.  I pulled my shoulder muscle very badly on Monday - had a stiff neck and back all week, along with shadow headaches.  It all lead to a CH yesterday and needless to say, neck, shoulders and back were all tight before and definitely during attack.  Plus, for the first time last night, during a hit, my jaw locked on the right side and I couldn't open my mouth all the way.

As soon as its over, the muscles release and tingle.  My jaw unlocked, too.
wild.

Knots and neck pain that goes down into my shoulders are one of my worst side effects before, during and after a cluster series.  Keeping the knots worked out as much as possible really helps, but yes it is painful as well, but a different kind of pain...likes it is needing to be kneaded.  Massage is wonderful for this.  Heat is good prior to the massage.  I also stretch my neck in all four directions and hold for 30 seconds several times a day during this time.  Drink lots of water.  I take Flexeril at night.  I go to a wonderful Chiropractor for this as well.  It really helps, but Chiropractors vary so much in their techniques that I cannot recommend this treatment in general.  I am lucky that mine is wonderful.  Good luck to you!   

I put a menthol patch on the area or rub on some bengay for the neck pain.  And I use a temperpedic pillow for neck support at night when I am in my cycle.  I notice that it will help to provide relief to my neck and ward off shadow headaches.  But obviously does not do much for the "big ones".

sometimes but not always    i get a predominately hot or cold spot around C2-3   

but then again im weird  ; )

I get the stiff lumpy painful neck as well.  My son was the 1st to note that sometimes just before I get a hit I start rubbing my neck on the same side as the CH hits.  I must have been doing it unconsciously since I didn't correlate it until he pointed it out.  Gotta Love our Supporters!!

Jamiekins82 wrote on Nov 21^st, 2010 at 2:03pm:

I put a menthol patch on the area or rub on some bengay for the neck pain.

Oh, yea...I do that, too.  I forgot.  BTW...isn't it nice to forget?!

Joni wrote on Nov 22^nd, 2010 at 12:31am:

Jamiekins82 wrote on Nov 21st, 2010 at 2:03pm: I put a menthol patch on the area or rub on some bengay for the neck pain.  Oh, yea...I do that, too.  I forgot.  BTW...isn't it nice to forget?!

Yes, thank the lord I go into remission with these headaches.  My heart goes out to those that are chronic.  When I am in remission I forget how bad the pain is until I am back in the peak of the cycle again.  I guess that is a good thing.

C2 occipital nerve ganglion

I always get the neck pain before a hard hit,so when I get the neck pain I reach for my abortives. But during an attack it's just a pain in the ass. :)  NO SMART REMARKS PLEASE!!!

mikstudie wrote on Nov 22^nd, 2010 at 1:11pm:

I always get the neck pain before a hard hit,so when I get the neck pain I reach for my abortives. But during an attack it's just a pain in the ass. :)  NO SMART REMARKS PLEASE!!!

Smart ass comments??? us??? :-X

Joe ;D

Yeah, me too. I feel my clusters primarily in the occiputal region. I've had them reach right down to the middle of my back. The trapezius muscle goes wild. Cold application helps. Neuro once told me it was "referred pain." Whatever.

maryo wrote on Nov 27^th, 2010 at 9:23am:

Neuro once told me it was "referred pain." Whatever.

I have pain in the bones in my face.  My cheek bone especially.  It feels like they have been injected with napalm and are about to explode.  The neuro also told me it was "referred pain."...whatever!


Someone came by my work passing out samples of this new product "Salonpas" ( START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE They are FDA approved non prescription pain relieving patches manufactured in Japan.  Active ingredients menthol, and methyl salicylate.  I use them when I feel the neck pain come on before a hit.  I have noticed that keeping the neck pain under control has really helped me avoid some hits....especially the upper trapezius muscle on my right side.  The salonpas patch + oxygen therapy + bottles upon bottles of cold water, and maybe a red bull every now and then, have really helped keep my headches this cycle below a 5 on the KIP cycle, by aborting them quickly.

I had a nerve block last Monday and for 3 days I was pain free.  Friday I started having headaches. As the weekend went on the headaches increased in the afternoons. These headaches don't feel like clusters but just bad headaches on the back and side of my head and runs down into my neck and traps.  What is this?

wrote on Dec 14^th, 2010 at 9:23am:

Regular exercise relieves back pain by strengthening and stretching the muscles that support the spine and helps to prevent future injury Studies have shown that yoga is the number one most effective exercise for relieving back pain. It is best to do these exercises under the supervision of a certified yoga instructor,However, not all yoga poses relieve back pain, and some can in fact aggravate existing pain, so it is important to know which poses will be most helpful in relieving back pain. if you encounter any problems with these poses, you should consult an expert. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

   Just guessin you have a connection with these folks.

                Potter

wrote on Dec 14^th, 2010 at 9:23am:

Regular exercise relieves back pain by strengthening and stretching the muscles that support the spine and helps to prevent future injury Studies have shown that yoga is the number one most effective exercise for relieving back pain. It is best to do these exercises under the supervision of a certified yoga instructor,However, not all yoga poses relieve back pain, and some can in fact aggravate existing pain, so it is important to know which poses will be most helpful in relieving back pain. if you encounter any problems with these poses, you should consult an expert. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Chiropractics have little no affect on CH since it's an internal Hypothalamus issue. 
But thanks for the commercial break.
Now back to your regular scheduled programming....

Probably should have :-X  but couldn't resist.  Going back to my corner now.  :-/

JustNotRight wrote on Dec 27^th, 2010 at 6:40am:

wrote on Dec 14th, 2010 at 9:23am: Regular exercise relieves back pain by strengthening and stretching the muscles that support the spine and helps to prevent future injury Studies have shown that yoga is the number one most effective exercise for relieving back pain. It is best to do these exercises under the supervision of a certified yoga instructor,However, not all yoga poses relieve back pain, and some can in fact aggravate existing pain, so it is important to know which poses will be most helpful in relieving back pain. if you encounter any problems with these poses, you should consult an expert. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Chiropractics have little no affect on CH since it's an internal Hypothalamus issue.  But thanks for the commercial break. Now back to your regular scheduled programming.... Probably should have :-X  but couldn't resist.  Going back to my corner now.  :-/

I ALWAYS get told to go to a Chiropractor...despite the fact I say Clusters are thought to be caused by the Hypothalamus and I also possibly have problems with other nerves (possibly the trigeminal nerve) because I have facial pain. But, it doesn't matter what I say, Chiropractics can cure everything right? Ahh sorry, a huge problem I have to deal with and I dislike that people think I am negative when I don't go for their advice. 

I often get a sore neck and shoulders too and I either put something warm or cold on to help soothe the area!

PFDAN all x

i get the knot too - base of the skull - feels like a golf ball.   I found out if i fatigue the muscle during an attack it helps the neck pain and it takes the edge off the CH (barely - but every little bit helps, yeah?)  I do this with a little 5 lb weight that i hold out straight away from my body (either forward or to the side) til i can't hold it anymore.

Bad thing is that once the attack is over you are pretty sore....it does help the post attack nap, though ;)

Hi Shuli,

You're the 1st person I've come across besides my son who's had their jaw lock up when the pain was peaking. It's been a long time since his CH has been that bad and for him, the jaw locking up was an indication that he was going to black out.

I've had 5 vertebrae in my neck fused into a block and have found the most relief from light-medium traction using a cervical harness. Anyone considering that approach please PM me - I've been doing it for 40 years.

Ron

Two indents at right and left base of skull, press and knead gently,these are pressure points for headaches.

TheVerbalArchitect wrote on Jan 5^th, 2011 at 3:13am:

Two indents at right and left base of skull, press and knead gently,these are pressure points for headaches.

Thanks for that.

If you look at the path of the trigeminal nerve, that's 2 spots where it comes to the surface, Makes sense you could get a small amount of relief rubbing there.

Since discovering oxygen, I don't need the massage anymore.  :) If you haven't used 02 yet, do check it out, it's good stuff for CH'ers!

Joe

I get the knot about two inches below the skull on the right side of my neck and a pain line that goes up to the lower right base of my skull. It's there anytime I get the CH's and goes away during intermissions.

When it gets bad and I think it may trigger the demon, I have a rice sock that I heat up and apply for about a half an hour and it seems to loosen it up some.

Rice sock: take a large sock and fill with dried rice, heat in the microwave for about 2 1/2 minutes and apply to area you need heat. Will last for several minutes then just reheat.
If you prefer moist heat (sometimes works better) wrap in plastic bag and then wrap a warm damp small towel around it before applying.

Thank you for this post!!!  I have had many doctors try to tell me that ch does not include neck pain!!!  It is good to know I am not crazy!!!

  I get this very bad,usually its my first sign that i am going to get an attack,I took a few yoga classes,that helped somewhat,loosens everything up.

In regards to my pressure point post above,I bought a book at half price books,ten bucks used called:

"Acupressure For Emotional Healing"
By: Micheal Reed And  Beth Henning

    Contains locations of hundreds of pressure points all over
the body that can help with both Physical And Mental
problems,this book has helped a lot.

One Love

The V.A.

I know this is an older post, but I know when a CH is on it's way when my back starts to tighten. By the time it hits my shoulders and neck are usually completely locked up and thee is a small knot on the back of my neck. My back and shoulder (mainly the side of the CH) stay this way until the cycle is over.

Massage does help, but does not prevent another CH. It does lesson the overall experience though and I have stopped one on the way (before the pain starts) with intense deep tissue massage. Once the pain starts though... well you know the drill.

Chiros, though I think they can be helpful on other things have been of zero value with my CH.

I also get the knot before a hit, but before the neck thing I get very nauseous and then sneeze. Bam the Hit. Sometimes the neck goes into a Charlie horse and is relieved by someone pulling  up on the head. This goes on 4/5 times a day. Anybody have the nauseous sneeze thing before the hit?

Don’t get the knot,but do get a throbbing pain in the neck/base of the skull.