Trauma starting cluster headache

[aaw96]

In 2020 I was in a demolition derby and I hurt my back pretty bad. Shortly after that I started getting headaches, I’ve been to every kind of doctor, tried every kind of medicine. I also have severe jaw and neck issues where I can’t even turn my neck a certain direction or hold my mouth open for too long or I’ll get a headache. I can’t sleep at all. Everything seems to trigger a headache, certain things will work temporarily and then other time it triggers one. I’m losing my mind. Has anyone else experienced all of this?

[mit12]

aaw96

As a suffer of Clusters and Migraines I do not think that an injury can cause a person to become a Cluster suffer. I believe that both migraine and clusters are a function of messed up brain functions. This is why I have been trying to donate my brain to the study of Clusters when I pass. For a couple of years I have contacted numerous hospitals with absolutely zero results.  

 I can tell you with 100% certainty that injury can set off a wild and out of control hits. 

good luck my friend. 

[Bejeeber]

I recall some reports from people who have been in bad car accidents or otherwise suffered head injuries, and this triggered their first clusters.

It doesn't seem real common, and whether the trauma actually caused the CH, or was a trigger of a dormant underlying predisposition, I would be unqualified to speculate.

[Racer1_NC]

59 minutes ago, Bejeeber said:

I recall some reports from people who have been in bad car accidents or otherwise suffered head injuries, and this triggered their clusters.

It doesn't seem real common, and whether the trauma actually caused the CH, or were a trigger of a dormant underlying predisposition, I would be unqualified to speculate.

This is my belief, but I am as unqualified as you to say for a certainty.

I can say with absolute certainty getting a bad concussion has not a single positive aspect involved with it. Not a damn one.  

[aaw96]

Thanks everyone. 
 

does everyone constantly feel neck pain and shoulder blade pain? Like your muscles are cement tight. 
 

or is there absolutely no relief with this? 
I don’t even know if I have clusters, I feel like it’s not but my doctors are convinced that it’s clusters.

[CHfather]

From your posts, I don't see any indication that you have cluster headaches.  What symptoms are causing your doctors to think that you do?

[aua sin fin]

Hi @aaw96

i am far from being an expert, plus new to this forum. i am just reading a lot here these days, as i am in midst a bad cycle at the moment.

but concerning your question:
it went down almost the same way for me! i basicly had a minor wakeboard accident over 10 years ago. result: nice whiplash. on the same day later at night i have felt this weird kind of pain (pain 7-8 CH scale) first time in my life... since then  i do have experienced the same tension/blockade issues like you and for a long time i stayed pretty much undiagnosed because i was sure the CH pain was originating from the neck and shoulder blade area. And / or as well from nerve inflammation, or irritation. Which is possible. Maybe it was like that and it changed. Nobody can tell i guess. There is very little knowledge about all this, but based on what most people & doctors know, they will tell you CH are not caused by trauma. Some will tell you that they know so little, that you might be right, that you felt that kind of pain first time after the accident, but if you got CH symptoms and the CH meds/ treatments work for you, then you do have a CH (as well). So actually i support your theory of injury/ pain triggering it, or somehow being interconnected with it, but in the end it makes no difference. 
 

[aaw96]

I’ll list all my symptoms and this is what I tell doctors and the results have been cluster headaches and TMJ and trigeminal neuralgia. 

my symptoms have been: pain/headache on the right side of my head, stemming down into my eye socket (feeling like it’s being pulled back into my head) and into my jaw. After I have an attack which is now at least 15 times a day and lasts at minimum an hour to 8 hours at a time, my head feels bruised. Brushing my hair causes a headache, it’s so sensitive. My neck muscle protrudes out and you can feel it throbbing if you touch it. 
 

 

Does everyone have a job or are you guys on disability? I haven’t been able to keep a job and I’ve been denied disability, I’m lost on where to find something I can do. My pain is constant and headaches happen every single day.

Edited November 10 by aaw96
I forgot to put in the last bit of my thoughts

[nadinemay6]

This sounds exactly like CH.  Also - i do disability evals- reapply, almost everyone gets devied the first time- or use a SS attorney, they get paid after you win-

[CHfather]

I would say that parts of it sound like CH (pain in eye/jaw; very tight muscles) but many parts don't sound like CH to me (15 attacks/day, 8-hour attacks, pain brought on by "minor" activities such as turning head, opening mouth, brushing hair).   To me, some of it sounds more like TN, and some of it sounds more like paroxysmal hemicrania or hemicrania continua.

Do you have redness or swelling around your eyes? Do your eyes water when you have an attack? Does your nose run or get stuffy? Do you feel like it's almost impossible to stay still during an attack, like you have to keep pacing around or moving in some way?

What medications have you tried?  Oxygen?  A triptan injection (such as Imitrex) or nasal spray?  Steroids?  Are you saying none of these consistently help?

Have you been given Indomethacin to try?  Gabapentin (Neurontin)?  Lithium?

You might consider the Vitamin D3 regimen, which has been shown to help multiple "headache" conditions: https://clusterbusters.org/forums/topic/1308-d3-regimen/

 

[BoscoPiko]

On 11/10/2024 at 12:30 PM, aaw96 said:

right side of my head, stemming down into my eye socket (feeling like it’s being pulled back into my head) and into my jaw. After I have an attack which is now at least 15 times a day and lasts at minimum an hour to 8 hours at a time, my head feels bruised. Brushing my hair causes a headache,

CHF beat me to a similar response that I meant to send yesterday....The one sided (lateral pain) and eye pressure fit the mold for the most part. The jaw and scalp pain do sound a bit different and remind me  of something like Temporal arteritis or maybe Occipital neuralgia. With Temporal arteritis-(inflammation of the arteries in the head and neck) most experience symptoms like a severe headache on one side of the head, tenderness when touching the scalp, fatigue, jaw pain, and vision impairment. The above questions posed by CHF should be pondered and answered in an effort to narrow down the possible affliction (not that our opinions should be taken as a diagnosis). I completely second the recommendation of starting the D3 reg regardless!  I really hope you get some definitive answers and find some relief soon!!!  

[aaw96]

On 11/11/2024 at 10:28 AM, CHfather said:

I would say that parts of it sound like CH (pain in eye/jaw; very tight muscles) but many parts don't sound like CH to me (15 attacks/day, 8-hour attacks, pain brought on by "minor" activities such as turning head, opening mouth, brushing hair).   To me, some of it sounds more like TN, and some of it sounds more like paroxysmal hemicrania or hemicrania continua.

Do you have redness or swelling around your eyes? Do your eyes water when you have an attack? Does your nose run or get stuffy? Do you feel like it's almost impossible to stay still during an attack, like you have to keep pacing around or moving in some way?

What medications have you tried?  Oxygen?  A triptan injection (such as Imitrex) or nasal spray?  Steroids?  Are you saying none of these consistently help?

Have you been given Indomethacin to try?  Gabapentin (Neurontin)?  Lithium?

You might consider the Vitamin D3 regimen, which has been shown to help multiple "headache" conditions: https://clusterbusters.org/forums/topic/1308-d3-regimen/

 

Yes, my girlfriend says she can see my looks like it gets pulled back into my head and looks swollen. Light makes my head hurt worse when I’m in an attack. My eyes run constantly during an attack. I’m constantly pacing during one too, especially at night. I haven’t slept a full 8 hours in almost a year. I’m lucky if I get an hour of sleep, I wake up all the time with a headache especially if I dream. 
 

I haven’t tried oxygen yet, a new doctor I just saw is wanting me to try that. I’ve done imitrex injections and sumatriptan nasal spray. I’ve done steroids, I feel great when I’m taking the steroids but once I’m done with the pack - my attacks are worse. I’ve done indomethacin, I’m on gabapentin right now and have been for almost 2 years. I’ve done nerve block shots in my head. I’ve been to a chiropractor. I’ve tried TMJ injections in my jaw and down my shoulder. I’ve tried Ubrelvy. 
 

nothing has helped consistently. It either works mildly and then my attacks come back even worse or they don’t work at all. I haven’t felt relief in anything for 4 years now… I’ve also done physical therapy. 

[CHfather]

I'm glad your new doctor is competent. Any doctor that doesn't prescribe O2 is incompetent when it comes to treating CH. 

Oxygen is a very good test of whether you have CH. Properly used, it works for virtually everyone with CH, but it generally has no effect on other headache conditions. 

There's a discussion of proper O2 setup here: Basic non-busting information - ClusterBuster Files - ClusterBusters.   It's very important.  In terms of using the oxygen, people eventually find their own best ways of doing it, but it is usually recommended that you want to get as much O2 into your lungs as possible, and as much CO2 out as possible, which could mean starting with a full exhale, even with a "crunch" at the end, then inhaling deeply, holding for a second or two, and then forcefully exhaling (with a crunch).  As noted at the link above, you want to have a regulator that creates a flow of O2 that allows you to use a process like this (or whatever process works best for you) without having to wait for the bag to fill.

Because I have no way of knowing how incompetent your previous doctors were, it's hard to say that a lot of what you have tried (or are taking) was properly tested.  Indomethacin, for example, often isn't tested for long enough or at high enough levels to actually determine its effectiveness.  Not many big fans here of gabapentin, if only because the side effects are tough for some, and efficacy varies.  It is, however, a first-line treatment for TN.  Lithium is often used as a last-ditch treatment for chronic CH.

I don't think "busting" -- treating CH with psychedelics such as psilocybin, LSD, and certain kinds of seeds -- has been mentioned in this thread.  Busting is the reason this site was created, so you can get plenty of information about it if you want, starting with the "New Users -- Please Read Here First" button at the top of each page.

 

 

[devonrex]

I was t-boned in a car, saw it coming and tensed and messed up the muscles and stuff on the right side, the same year I got cluster. Correlation is not causation, but close enough together to consider. For a long time they were thinking issues with my TMJ is what it was, from the whiplash and nerve/muscles damage from the accident. Could be something to look into for you, because some of the symptoms with jaw, neck pain can be a TMJ involvement, I mean it could be both with the one triggering the other, either way if it is TMJ (Temporal mandibular joint, jaw hinge area) getting it fixed may help with the other or rule it out.

Edited November 15 by devonrex

[DoNoHarm99]

You have features which do not fit neatly into one category, but I am dobtful that you have CH.   At a minimum I would be inclined to say post-traumatic headache/cervicogenic headache. The injury you had and many of your symptoms has me thinking of structural causes (how could you injure your back severely without injuring your neck....some form of whiplash?).  I would be thinking about structural problems in the neck, instability caused by your accident would explain a lot.  The musculoskeletal symptoms into your shoulder is much more consistent with soft tissue trauma than CH or other rare headache types.  Pain into the shoulders and shoulder blades can be referred pain from the lower cervical joints (C5-C7).  If unresolved injury is the issue, PT and meds will not help.  However, a good physical therapist can contribute by making a good evaluation of the problem and should be able to bring your TMJ link into the picture (highly linked with upper cervical function).   You may need to restabilize your neck through something like prolotherapy. 

[Penelope]

I started getting CHs after a severe concussion.  

[BoscoPiko]

Suppose I'm special as all I did was stand up from the darn couch to let my Abby doo inside (best dog in the universe), turned the handle and Shazam! Shocked to my very core, nearly thought I somehow got an electric shock but yeah me.. no such luck. I'm sure there are many reasons one is afflicted with the fluker bunny and I sure would enjoy more methods  to rid ones self as apposed to why. At the same time I understand how the why plays into the rid as far as treatments go. That being said, I'm darn sure sending my list to Santa this year and hope he checks the flipin thing twice!! Keep on being the coolest kids in town!! Admiration to all of you CH survivors!

[Kevin Broderick]

I'm getting slammed for the second time today and that is unusual. Took a pill and did some very deep breathing. Earlier today did this and it really helped but right now, not working... was talking to a good friend and it started to hit me again....just don't know. My brother is sending me some O2 equipment and just wish it was here right now but just saw your post and decided to ramble on about my problems. Happy holidays and merry freaking Christmas...whatever. No joke take care.

[CHfather]

@Kevin Broderick

In this document (same one I sent you earlier with the O2 information), toward the end, there is a section headed "Treatments without O2."  Some of them might help you.    https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/   

[MaxHead]

My cluster symptoms began after a traumatic brain injury with loss of consciousness  However, there were other mitigating factors as well: other concussions, 2 cervical spine surgeries including a fusion (followed by an eventual 3rd surgery and 2nd fusion post-CH as a result of the TBI), sleep apnea, male, etc. But no prior drug use, heavy alcohol use, smoking, or family history of CH  

So I personally believe there may be a strong connection between brain injury and/or spinal injury and cluster. But the exact mechanism in play may unique to each person.