"Cluster knot" and ways to alleviate it?

[Amholla3]

Hello! I am back in a cluster cycle after 3 years remission (longest yet!). I noticed shoulder tightening about a month and a half ago followed by a knot in my neck about 2 weeks later. 2 weeks after that and I had my first hit of this cycle. The knot will be extra painful right before and during an attack. It's helpful in warning me but not helpful in that it's extra pain and I am worried that "aggravating" it may trigger an attack!

Does anyone have any thoughts on the cluster knot and if addressing it will help abort the hit or lessen the cycle? 

I don't remember having a knot like this in my other cycles... I should start documenting the headaches so I can reference past experiences!

Thanks in advance!

[devonrex]

For the longest time, I used to get pain/tension right at the base of my skull on the right side and within minutes the beast smacked me upside the head. Been a few years since that has happened, but that kinda stopped when they went insane on me after stopping a drug the name I forgot but anecdotally has seemed to jack up a lot of people after stopping it. Likely it is because the low grade pain and ache from the shadows have overridden it for me, but you can use it as a signal to get your ass on the o2 and maybe hit before it even starts.

[Amd542]

hi @Amholla3 , very sad to hear you're suffering again . 

 

I'm chronic and i suffer with constant neck problems , shoulder pain and rhomboid pain on the right side (same side as pain from CH) . i find brufen helps when i have a lot of pain but thats temporary , massages help a little , i want to start exercise for back and posture and see if that will help , it causes a lump on the right side of my neck. 

[mads]

Hi thanks for bringing this topic up. When I first spoke to a dr about possibly having cluster headaches after my first two attacks he basically laughed when I said part of it was insane tightness in my neck/base of skull on the side of the attack. He even told me that it was not connected and that my neck was probably hurting from being on my phone/laptop too often. But to this day neck pain is my biggest warning of an attack and is part of the pain leading up to and during an attack. I use a massage gun (theragun) and go in on my neck as soon as I feel it coming on. It doesn’t always work to prevent but at the least it distracts my pain for a few minutes. I also sometimes find that a hot compress/heating pad or piping hot wash cloth on my neck can help relax it momentarily. maybe it can help you- Sorry to hear your pain.

 

Another note* not sure if people here have a similar experience but when I am entering a flare up/cluster the first few headaches are slightly less severe, as well as the last few when I am coming out of it (usually day 1-2 and then the last few days of the three week cycle). Its almost like I am eased into it and eased out, which is weird because that is how my individual headaches usually are as well. It starts slow, ramps up, peaks, and then I slowly come down. During the first and last few when the headaches are milder, the theragun massage gun ob my neck, if I catch it early enough, can almost stop the headache from fully coming on.