BoscoPiko Posted March 1, 2022 Share Posted March 1, 2022 So I poked around the forum a little searching for neck pain and got a bunch of hits because I used the word pain in the search. I then just used the word neck to search and found some info that indicated that neck pain can be a pre-cursor to the onset? I'm still trying to figure things out but I remember this (broke neck thing, cant move your head side to side or forward and back without serious pain) happening to me before in the past and I may have chalked it up to sleeping on it wrong but now I am wondering if there is a correlation? I only ever get about 4 months clear at a time so with my last cycle ending on or about October 11th I know I'm going to get a visit from the cluster bunny here soon and the other day I woke up and had serious broke neck. Are there any others that experience this or am I just special LOL.. Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted March 1, 2022 Share Posted March 1, 2022 I used to get broke neck on occasion (around our house we like to refer to it as the "Lock Neck Monster"), but I never thought to track whether it would precede a cycle. I do seem to recall a lot contributors here being a real pain in the neck reporting some serious neck pain, and I believe @Dallas Denny is one of them. 48 minutes ago, BoscoPiko said: I know I'm going to get a visit from the cluster bunny here soon "Cluster bunny"? Some genuinely classic gallows humor there! I hope you don't mind if I start using that - you should probably trademark it and require a royalty payment whenever it is mentioned. 1 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted March 1, 2022 Share Posted March 1, 2022 Cluster Bunny® 1 2 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted March 1, 2022 Author Share Posted March 1, 2022 51 minutes ago, Bejeeber said: I used to get broke neck on occasion (around our house we like to refer to it as the "Lock Neck Monster"), but I never thought to track whether it would precede a cycle. I do seem to recall a lot contributors here being a real pain in the neck reporting some serious neck pain, and I believe @Dallas Denny is one of them. "Cluster bunny"? Some genuinely classic gallows humor there! I hope you don't mind if I start using that - you should probably trademark it and require a royalty payment whenever it is mentioned. Lol I'm stupid in pain and of course you can use it! Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted March 1, 2022 Author Share Posted March 1, 2022 6 minutes ago, BoscoPiko said: Lol I'm stupid in pain and of course you can use it! Dropping eggs and killing brains.. Quote Link to comment Share on other sites More sharing options...
xBoss Posted March 1, 2022 Share Posted March 1, 2022 I get bad neck issues, knots in shoulders as well every cycle. My range of motion is very limited and sometimes tension headaches. My cycle is due soon as well. Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted March 1, 2022 Author Share Posted March 1, 2022 6 minutes ago, xBoss said: I get bad neck issues, knots in shoulders as well every cycle. My range of motion is very limited and sometimes tension headaches. My cycle is due soon as well. Good to know im not crazy and sorry about your cycle coming.. it all sucks ass but we will survive... you and me both! 1 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted March 1, 2022 Share Posted March 1, 2022 9 hours ago, BoscoPiko said: I know I'm going to get a visit from the cluster bunny Classic!!!!! I've never had the delight to experience lock neck or broken neck ,but I do get really bad stiff neck just b4 cycle starts with the shadows 1 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted March 1, 2022 Share Posted March 1, 2022 Really hope it's a short lived visit from the beast (bunny)for you both .fingers crossed 1 Quote Link to comment Share on other sites More sharing options...
snafu Posted March 1, 2022 Share Posted March 1, 2022 yeah i get that. that's why i always panick when my neck hurts, thinking a cycle is about to start. fuck this disease! 1 Quote Link to comment Share on other sites More sharing options...
spiny Posted March 1, 2022 Share Posted March 1, 2022 Bosco, I get a huge 'cluster knot' where my noggin joins my neck on my CH side that is very painful. It cannot be massaged out either. If it pops up, hell is outside the door and coming in soon. Then I have to sleep on the side of the pillow - as in stand it up like a wall and put the edge carefully on that 'It don't hurt here!!' spot to sleep in the bed. Once the cycle is in full swing, I give up the bed for the Barca Lounger! Not to worry though, you are still 'special'!!! 2 Quote Link to comment Share on other sites More sharing options...
Juss Posted March 1, 2022 Share Posted March 1, 2022 I have been hit every day since the onset in 2014, believe it was March. It does not matter. If not cluster or cluster-like, migraine, or paroxysmal. And, my C5-C7 was an ACDF Reconstruction with an implant. The rest of the discs in the neck are beginning to show myopathy (spinal cord compression) and radiculopathy is established. This means I am well overdue to have the rest of the discs removed, and ACDF. Most likely with implants. Artificial discs are junk money rackets. The best neurosurgeons will bluntly tell you that. A few of the best spinal reconstructionists are in my area (Thank God). Most of my L Spine needs to be finished as well. Anyway, despite the above, my muscles become stiff as a board before any headache. Like, popping 2 Soma (Carisoprodol) (tried several times) won't phase it tight. So yeah, it appears common. My muscles are abnormal, alarmingly tight because of my movement disorder. When you place that into context and the fact that I notice it, that should tell you something. 1 Quote Link to comment Share on other sites More sharing options...
devonrex Posted March 6, 2022 Share Posted March 6, 2022 Not as much anymore, since shit changes the moment you get 'used' to it, but my biggest 'aura' or indicator of oncoming cluster train was a hellish knot or pain just to the right bottom of the occipital bone, right where it joins the right side of the neck, it would then arc over and behind the ear into the temple and off shit went. I could never decide, if it was bad neck setting them off by radiating pain into the sensitive nerves or if it was just a head precursor. 2 Quote Link to comment Share on other sites More sharing options...
Juss Posted March 13, 2022 Share Posted March 13, 2022 My neck is broken. I have fractured vertebrae, indented ventral thecal sac, a loss of disc height 0.4cm (C4-C5), there is a backward displacement (retrolisthesis) of the vertebrae in the C4-C5, Bone Spurs (osteophytes) at all levels not fused, facet arthritis all levels not fused, spinal canal narrowing, marked foraminal stenosis (narrowing of spinal canal/disc space through which nerves travel) at all levels not fused, disc ossification at most levels not fused, vacuum clefts (endplate changes indicating fractured vertebrae), marked degenerative findings at C4-C5, significant left-side foraminal stenosis at C4-C5. Oh, there is a bilateral displacement of a nerve on most levels. That is nothing, you should read my L Spine report. I have zero disc height, near caudal equina syndrome (multiple dysfunctions of several lumbosacral nerve roots) on two levels, torn discs, a real shit show. I will just keep getting shot up with cortisone, eat pred tapers like candy, get Botulin Toxin in the muscle, and take analgesics. That is only mild stuff, nothing serious. Until I can't feel anything and I lose control of my bladder, like the last two spinal reconstructions, I won't worry about it. Sidebar, I was wondering why I could not tell or notice the sensation of walking, using the bathroom, or even washing dishes. And, why I drop everything. I also wondered why I could not feel someone rubbing my arms, legs, and why I cannot push or pull on the neurosurgeon. Now I know. I hope that I have a few more years before all the reconstructions. Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted March 13, 2022 Author Share Posted March 13, 2022 7 minutes ago, Juss said: My neck is broken. I have fractured vertebrae, indented ventral thecal sac, a loss of disc height 0.4cm (C4-C5), there is a backward displacement (retrolisthesis) of the vertebrae in the C4-C5, Bone Spurs (osteophytes) at all levels not fused, facet arthritis all levels not fused, spinal canal narrowing, marked foraminal stenosis (narrowing of spinal canal/disc space through which nerves travel) at all levels not fused, disc ossification at most levels not fused, vacuum clefts (endplate changes indicating fractured vertebrae), marked degenerative findings at C4-C5, significant left-side foraminal stenosis at C4-C5. That is nothing, you should read my L Spine report. I will just keep getting shot up with cortisone, eat pred tapers like candy, get Botulin Toxin in the muscle, and take analgesics. That is only mild stuff, nothing serious. You know, take it like a man. I ain't no girly man. Shoot me up and load me up. Until I can't feel anything and I lose control of my bladder, like the last two spinal reconstructions, I won't worry about it. Jeesh Juss, This sounds awful.. All the meds can't be good for you. I understand the pain is also awful (not saying i understand your pain as you have more than just CH) so I suppose the need and or want to rid yourself at any cost seems plausible but I can't help but to think that maybe a diffrent approach needs to be taken as I'm sure you've thought about at some point. I'm a chick so I don't worry about being a girly man. Some believe in prayer some don't but I'm gonna say one for you either way! 1 Quote Link to comment Share on other sites More sharing options...
Juss Posted March 13, 2022 Share Posted March 13, 2022 My insurance will cover everything, like the last two. I do not have any intention of having the surgeon going in. Each reconstruction places more pressure and load on the remaining good discs, and it causes a change in the biomechanical aspects of the spine. If I go under this time, it will be the tipping point: where the rest of the spine is done. Quote Link to comment Share on other sites More sharing options...
Juss Posted March 13, 2022 Share Posted March 13, 2022 6 hours ago, BoscoPiko said: Jeesh Juss, This sounds awful.. All the meds can't be good for you. I understand the pain is also awful (not saying i understand your pain as you have more than just CH) so I suppose the need and or want to rid yourself at any cost seems plausible but I can't help but to think that maybe a diffrent approach needs to be taken as I'm sure you've thought about at some point. I'm a chick so I don't worry about being a girly man. Some believe in prayer some don't but I'm gonna say one for you either way! https://photos.app.goo.gl/y3o5iu3bZTuwHiBE9 https://photos.app.goo.gl/L3KQNJb94zFKA2c97 Check the imaging out. I don't BS. As you will see, I am back to making moonshine to deal with the pain. My Psych NP and my psychotherapist are allowing it. And the occasional pack of jacks to accompany it. These analgesics are not cutting it. I need 180 proof moonshine whiskey when it gets terrible. I'm kinda proud of this, that took a lot of spine trauma from hard-living, hard work, big-wave surfing, rough life, a ton of things. I have a lot of things on my report that should not surface until your late 60s, truly your 80s. https://photos.app.goo.gl/KcqJKzhffvfkSCZ89 1 Quote Link to comment Share on other sites More sharing options...
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