Does anyone else get knots up and down the front part of your neck on the same side as the pain that hurt during a cycle. I was recently diagnosed with Cluster Headaches after suffering with them for 8 years on and off.  While researching this condition I haven't read to much specifically in re to lots of pain in the neck.  I'm just starting a new cycle about 4 days in, man I hate this and really wish it would just never happen again. Anyway if you have any input I'd love to hear it.

Thanks Littlebit

Hi, and welcome.
I get lots of neck pain, but no knots, and it usually is in the back/side, then creeps up to the base of the skull. All this takes place within 5 min or so before the ch hits hard. Not sure if this is what you are asking, but thought I'd let you know.

i get the same as fred pain in the back of the neck when the hit starts creeps up! the side

Quote:

it usually is in the back/side, then creeps up to the base of the skull.

At the Vancouver OUCH convention, Dr. Robinson informed us that this is the result of an inflamed nerve ganglion in that location.

it sucks

that's all i can contribute  >:(

does this picture looks any familiar to you?
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

i just found it and i can say this is how it feelsin the back (except the hand and more red to the x spot)
at least for me

Referred pain is common in CH- the signals get misdirected down the neck. And tension during a hit can tighten up muscles on the affected side and lead to persistent neck-aches in my experience.

Its a common feature of a CH attack. During episodes this gets compounded because of overall stiffness of your back and shoulders in anticipation of the next hit. You may want to try regular massages just to try and relieve some of the general tenseness during episode periods.

During hits you may also want to try turning your head so that you stretch and pull the muscle in question. This can lead to 2-3 PF seconds. Not much, but during a 8 KIP that can be a real beauty.

Thank you everyone for responding. It makes me feel better that I'm not the only one with this particular pain. And Yes it Sucks!!! YAY US! This site is such a blessing.

Oh and something else that has crossed my mind.
In the past i had a carotid dopler test as i thought that this pain in front of the neck might has something to do with this.
The results where clear so if this idea crosses your mind too don't do it.
we are perfectly healthy :D

This is to Black, That is exactly what I was thinking. I thought maybe I had something else going on too. I'm glad you have ruled that out for me. I'm seriously so grateful to have people to talk to that understand. You can try and describe it to someone else but unless you get them you cannot even fathom how horrible and how painful and how diplitating they are.  Thank You Everyone here!

I have neck pain too and have had several tests done including a neck mri. every test came back negative. Today I went to a new nuerolagist , a very experieced doc in his early 80's he assured me that the neck pain was a result of the ch's not the cause. He changed my meds up some and he told me of a treatment called Gamma knife treatment,which is a pinpoint type of microwave. He wasn't trying to sell me on it but if nothing else works I'd be willing tl try it . Most of the patients had good or fair results.this might be an option for the more chronic suferers. hope this helps someone.