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ClusterBusters
smithrp3

Looking for advice

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Hey, so I’m new to this forum, I’ve had these headaches for about 2 years now (2017). I’ve seen two doctors and one diagnosed them as cluster headaches (not the chronic type) and another doctor totally dismissed them as cluster headaches because they are not at the front of my head behind my eye. 

 

A little about myself. I have played 9 years of football (HS, college, and NFL) and in 2015 I got knocked out and ended up with a concussion. I was hit in the back left aide of my head. This is where the headaches started. They have been on and off. I’ll have them for a couple months, and they’ll go away for a couple months. But when I have them they are really painful. The headaches started in the back left side of my head, but I have noticed them creep forward toward the front of my head. Anyone else experience this? Right now I’m having attacks/ episodes and the pain is like right in my temple. I went to get an MRI and the results came back and everything looks normal. 

 

Im currently playing rugby in Denver and haven’t practice since a week ago Bc the headaches have gotten too painful. But the Doctor cleared me to practice since the MRI looked good. 

 

I’d love to chat with anyone about these Bc they are really affecting my play and personality. 

 

Thanks,

ryan 

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Hi smithrp3,

Welcome to the forum, sorry you have to be here.

Cluster headaches are normally associated with the Hypothalamus part of the brain, as the source, and are linked to the Trigeminal Nerve, which goes up behind the eye, which is why that's the location of most attacks. Think brain-freeze headache on steroids. But, I've had clusters at other parts of the head - temple & forehead mostly, but they are always one sided. But as yours are linked to an injury, that's slightly different.

Also, eye watering and runny nose on the side of the head with the cluster is common.

Can you describe the pain in more detail?

My clusters are like a flaming red poker being shoved into my eye, or an ice cold nail, with someone trying to dig my eye out with it. In regards to the level of pain, I usually describe them as a muscle cramp, like you'd get in your calf. But double the level of pain, and double it again, then shrink it down and put it in your eyeball, and you get the idea. Clusters, like muscle cramps, can come on without warning and consume your thoughts and energy until it leaves. Also, a lot of people suffer with post traumatic stress attack afterwards, which can last 20-30 minutes or more. 

Clusters also tend to happen at the same time of day, same day of week for a lot of people. Alcohol and/or relaxation is a trigger for most people. 

Does any of that correlate with your headaches?

Mox

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Welcome to the community Ryan, but as Moxie said, sorry you have the need to join us!

First, I'll reiterate her question about autonomic symptoms of ch....eye watering or weeping on the cluster side and runny or stuffy nostril, also on the cluster side....although its possible to have clusters without the autonomic symptoms, that's pretty rare!

Since the onset of your headaches came after a blow to the head I would suggest that you research cervicogenic headaches which mimic clusters without autonomic symptoms!

How is your doc treating your headaches?  Typical measures include prednisone tapers, verapamil, imitrex injections, and high flow O2 to abort attacks.

I forget who he plays for but Terrance McKnight is also a diagnosed clusterhead who plays in the NFL.

Dallas Denny 

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When I first started out with my clusters I thought is was a toothache.  It would bother me for a month or 2 and then go away for a month or 2. This pain free gap slowly shortened until I had this shooting pain every day but not all day. I had a root canal done and that did not fix the pain so I was refereed to another dentist who told me I had cluster headaches. 

You have already had the MRI witch is a great start due to the head injury. I would look to see a headache specialist to figure out if it is in fact clusters you are having. I would keep a log of each headache you get, what time it starts, what part of your head, runny or clogged nose, does your eye tear, and how long it last. See if you have some sort of pattern. Like Moxie said Clusters tend to come the same time every day and a diary will help the doctors figure out what is going on. 

If you do end up having clusters you are in the best place to fight this and we have a tun of people here that have dealt with this for a long time and tried just about every trick in the book. Things to look into will be preventives like Verapamil, abortive like oxygen and long term treatments like Vitamin D and busting. All of witch are covered in full on this site. 

Poke around and ask as many questions as you can and we are happy to help. Sorry you have to be here but this is a great place to be for help.

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Hey Ryan,

Understand the cluster headache beast has been jumping ugly on the back of your eye and side of your face on one side of your head.

CHXXgrJ.jpg

If you want to stop this beast from doing a scrum inside your head and get back on the playing field, I've sent you a PM with the "How To."

Take care and please keep us posted.

V/R, Batch

 

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