Rachel55 Posted May 28, 2018 Share Posted May 28, 2018 Does anyone else feel like the muscles of the neck and traps and shoulders are like trigger point cords that seethe with pain during attacks? It's unbearable pain for me. Sometimes I squeeze my muscles or roll around on a tennis ball until I get bruises. I dig my body into the corner of a wall and press really hard on the right spots. Am I the only one? 1 Quote Link to comment Share on other sites More sharing options...
filacibin Posted May 28, 2018 Share Posted May 28, 2018 Sounds like you could have aura! A phenomenon mostly connectedto migraine sufferers. I also have cluster with aura, the aura came upon me in the last 5 years of my 20 years of cluster! 1 Quote Link to comment Share on other sites More sharing options...
FunTimes Posted May 30, 2018 Share Posted May 30, 2018 I sometimes put a ice pack on my neck and it seems to ease the headache a little but I do not have any sharp pain. Sometimes my neck muscles feel a little strainind after a headache but I think that is just from me getting all tense. Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted May 30, 2018 Share Posted May 30, 2018 Quite common among clusterheads to get a "cluster knot" in their neck and shoulder on their cluster side and I am most definitely included in that group! Dallas Denny 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted May 30, 2018 Share Posted May 30, 2018 The message from fella here talks about relieving a knot. https://clusterbusters.org/forums/topic/5325-neck-muscle-tension-connection/#comment-54530 As I remember it, there were others who had massagy/pressury strategies for dealing with it. You could type the word knot into the search bar on the upper right of the page and see what else comes up. Quote Link to comment Share on other sites More sharing options...
tuesnxt Posted October 15, 2018 Share Posted October 15, 2018 You are not alone. The knots and tension in my neck and shoulder travel all the way down my back. If my CHs go on for a few days, I feel like I've been in a car crash. I did get prescribed some muscle relaxers (cyclobenzaprine) which can help calm me down a little. I can't tell if its the CHs or if I just seize up from the head pain and clench for hours. I got hit with a bout of CHs this weekend and I am still recovering. I am having shadows plus I feel like someone beat me up and then hit me in a bumper car repeatedly. Quote Link to comment Share on other sites More sharing options...
Ben Posted October 15, 2018 Share Posted October 15, 2018 On 5/30/2018 at 10:00 AM, Dallas Denny said: Quite common among clusterheads to get a "cluster knot" in their neck and shoulder on their cluster side and I am most definitely included in that group! Dallas Denny I get the knot on the back of my head,cluster side. sometimes I would get stiffness in my neck and shoulder. heat helped some. Quote Link to comment Share on other sites More sharing options...
A Way Out Posted October 28, 2018 Share Posted October 28, 2018 I'm quite confident that knots in the neck are the primary cause of the cluster headache. I use a trigger point cane massager to relive the knots, and this has prevented cluster headache for a couple years. If you're just starting a cycle, it can provoke shadow-type cluster headaches, but rarely full-blown. It is not an effective treatment IN THE MIDST of a cluster headache, but it doesn't do any harm and the pain couldn't be much worse, anyway. I discovered this relationship after 20 years of cluster headaches, with a cycle every 2 or 3 years. Many people experience knots in the neck during a cluster cycle, but I'm quite confident that everyone experiencing cluster headaches has a knot in their neck, and that the know precedes the headaches. Here's a study backing up my claim, but I encourage everyone here to get a trigger point massage stick, practice relaxation and self-care, and find out if I'm right for themselves. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2631448/ Quote Link to comment Share on other sites More sharing options...
Rachel55 Posted June 11, 2019 Author Share Posted June 11, 2019 I have heard of a technique called "dry needling" which is when an acupuncture needle is inserted directly into a trigger point. Anyone tried this? Quote Link to comment Share on other sites More sharing options...
devonrex Posted June 11, 2019 Share Posted June 11, 2019 (edited) A bit of a necro, but I had tried that years back, what I had was IMS (inter muscular stimulation) seems to cause muscle spasm when a thin needle is pushed into the site of a knot or tension, then relaxation, it was doing good for general muscle issues, part I think caused by stress during. But I stopped doing it the moment it was tried in my jaw muscle, I do not know if it irritated the trigeminal or what but it triggered a 10, without even a ramp up, it was immediate and off the charts. It had also set off others when it was done high on the back of my neck/head, near the occipital nerve. This is of course 20/20 hindsight as I was not diagnosed at the time and they thought it might be a tmj issue. Edited June 11, 2019 by devonrex Quote Link to comment Share on other sites More sharing options...
xBoss Posted June 12, 2019 Share Posted June 12, 2019 22 hours ago, Rachel55 said: I have heard of a technique called "dry needling" which is when an acupuncture needle is inserted directly into a trigger point. Anyone tried this? My knots are so bad that I have fantasized about jamming a needle into them. Quote Link to comment Share on other sites More sharing options...
Freud Posted June 12, 2019 Share Posted June 12, 2019 (edited) I’ve felt that way about my neck and back but your legs get knitted up? Sorry I confused this with another post I had in my mind... Edited June 12, 2019 by Freud Quote Link to comment Share on other sites More sharing options...
Snazzy93 Posted June 20, 2019 Share Posted June 20, 2019 When my clusters are at their peak, I swear I can actually feel it start in the back of my neck. Almost like a tension headache would feel. That's actually when I know to use 02. If I don't abort, they very quickly move to behind my eye, then I know when I'm on the downhill slide because I start feeling pain in the back of my neck again. Usually within 10 minutes of the neck pain again they're gone. I've had doctors and CHers both tell me that clusters don't start in the neck, but I've had them for 9 years, and I'm telling you, most of mine do. Everybody is different I guess. Quote Link to comment Share on other sites More sharing options...
ruthlian Posted June 20, 2019 Share Posted June 20, 2019 @Snazzy93Mine definitely start in my neck! I'm so glad this thread got bumped because my cluster headaches affect my right side in my neck and behind my eye, and I also have a right shoulder/neck injury, so it has taken a lot of vigilance to be able to tell if it's my injury acting up or a headache coming on. My most recent and worse cluster actually started recently when I received acupuncture to help with my shoulder injury - I got two cluster headaches that day and then at least one every day for 2 weeks. But my shoulder injury felt better :-p I have often wondered if the inflammation in that quadrant of my body is related, or how they might be affecting each other. Quote Link to comment Share on other sites More sharing options...
Noel59 Posted June 24, 2019 Share Posted June 24, 2019 I have had ch for years now, on and off, and for the past 9 months it's been agony in my neck muscles/bones. I have just found something that works for me and, believe it or not, it's a Hitachi Wand! It's intense and I've only used the lower setting, but massaging it all around brings me wonderful relief. Sideways makes the teeth rattle lol, but head on is great. Hope this helps for anyone. Quote Link to comment Share on other sites More sharing options...
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