Is this normal?

[Clmsntgrpaul]

Good evening,

 

so I’ve started getting headaches again and am unsure if they are cluster or not now.. I’m currently loading D3 regimen and have looked after any way to get rid of these things. When I get a headache a knot forms in my upper back on the side of my headache, when this happens and the knot is very deeply massaged the pain begins to subside (Like someone putting an elbow into my back with all of their might). Does anyone else experience this?

[CHfather]

Cl', there has been a lot of discussion here about the "cluster knot," which sounds like what you are describing.  I believe a few people have had some relief from very forceful massage of that area, so you're not alone in that regard.  I think most people found that even strong massage was not enough to deal with it.  One prominent person with CH (Hipshot, who no longer posts here), got relief at least for a while from Botox injections into the knot and other areas around his upper spine.  If you put the phrase "cluster knot" into the search bar at the top right side of the page, I think you will find at least a few discussions of it.

[Tony Only]

You might also find some discussions on other (older) sites with "cluster lump". I have had two of such, a "lump" in my neck on my pain side only appearing when I am in cycle and a "knot" in my upper back (nicely "under" my shoulder blade) that is more or less always there. Since there first one has now disappeared when I succeed in preventing my cycles, I need to pay attention to the second one (in my back). I have never had it massaged during a cycle but the physiotherapist who saw (or more like felt) it first had not seen one before or could not explain what it is. I do regular stretching aimed at that spot, yoga and such. For me most important thing is to pay attention on static work positions in a computer for an example. I think I have partly created it myself - even being anxious or tense and that reflecting physically via keeping my shoulders up just a little bit unconsciously - and partly it comes with cluster headaches, for some. I used to think it's all about muscles but nowadays I think vagus nerve has a role in all of this or at least the upper "lump". For me there is a big mental factor.

When a lot younger I also associated increased heart rate to these symptoms and verapamil was a great drug - at first. Now I think it was probably slowing down my pulse and working together with vagus nerve to calm down the fight or flight-type mindset. Psychedelics, yoga and meditation have resulted to similar kind of state but more naturally. I think for many of us calming the mind down will also help with these knots and lumps and efficient treatments as well. But my "knot" still manages to surprise sometimes how active and ready to form to a trouble again it always is. Like pulling a lawnmover to start when you are furious - "here I am!"

Here's a bit about vagus nerve with a quick Google search https://www.psychologytoday.com/us/blog/the-athletes-way/201705/vagus-nerve-survival-guide-combat-fight-or-flight-urges

[Augtron]

I have the same thing. Currently in cycle and have a nice shoulder lump going on. After having a vigorous massage to the area my knot seems to have moved and is now behind my shoulder blade. Very strange feeling to say the least. 

[Tony Only]

After almost 30 years of clusters I recently had my first side shift and had a feeling of very small cluster lump (in neck) trying to form on my neck on the new side. But the knot (on my back) is still there on the old side so I think it's related to which hand one uses.