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starlight
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Scalp Cyst/Cluster Headache
« on: Aug 14th, 2007, 5:53pm » |
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Hi everyone. I just thought I would share this with you all, because I can't help but feel a little interested and befuddled and optimistic.
Quick recap: been getting episodic clusters since age 14, now 33. I have had a cyst on scalp right behind my hairline since age 11. The cyst was a cute little pea-sized bump until 3 years ago when it started getting and got a LOT bigger. Wanted to get it removed last summer but was in the throes of clusters, so this summer went about arranging it and just had it surgically removed 2 days ago. Surgeon said after it was done that it was a large cyst. Also, was on same side as cluster headaches (left)--if I drew a line from left eye (center of pain) a few inches upward it would hit the cyst which as I said was right on hairline.
Anyway, here's the thing, the cyst is gone now. Hooray! But I have to share this with someone--that side of my head feels different. As in good different. I am not getting the twinge things that I usually get. (Usually I would only get twinges in cycle but not so since last cycle). There is no more pressure/twinginess/etc.--it is like the area feels CLEAR. That is the only way I can describe it. I looked on the internet previous to having surgery and found somewhere before the surgery that regular old scalp cysts can extend into the neurovascular region. Anyway, I know it has been established that it is the hypothalamus region that causes these and have had a doctor tell me that it is "interesting" that the cyst was so close to the center of the headache pain but that it is very unlikely it has anything to do with headaches. Am I really imagining that the left side of my head feels different? Is there a possibility a stupid cyst could have caused these headaches all these years? Anyway, just throwing this out there....
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Guiseppi
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Re: Scalp Cyst/Cluster Headache
« Reply #1 on: Aug 14th, 2007, 6:04pm » |
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The only thing I know for sure is ANYTHING is possible with these damned things!!!! As little as we know about them, something they did might have bought you an extended remission. If they're gone for good, hooray!!!! Personally, I'd keep the 02 and trex nearby just to be on the safe side. Hoping your right and the beast has vacated your noggin for good!!!
Guiseppi
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Linda_Howell
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Re: Scalp Cyst/Cluster Headache
« Reply #2 on: Aug 14th, 2007, 10:16pm » |
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Guiseppi,
you are so kind and I love you for that. 
o.k. Dang it I've got to say it. As far as I know a cyst on the scalp does not cause CH. But what do I know, I'm not a doctor. 
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rolo65
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Re: Scalp Cyst/Cluster Headache
« Reply #3 on: Aug 14th, 2007, 10:33pm » |
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This is weird; I have a keloid scar on the top left side of my head from getting thrown form a horse at 15. Never bothers me unless I hit it with the comb though. Rolo.
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starlight
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Re: Scalp Cyst/Cluster Headache
« Reply #4 on: Aug 14th, 2007, 11:07pm » |
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Guisseppi,
Thanks for the support--these are very weird headaches and so who knows what causes them or maybe there are multiple causes or maybe sometimes some type of referred pain I am wondering.
Linda,
I understand your skepticism. My head does feel different--I was talking to my mother today and said I am sure I am probably imagining it because that would not make any sense. She just said "nothing about those headaches makes sense". But the proof will be in the pudding if the headaches don't come knocking when they usually do. Wouldn't that be nice!
Rolo,
You have a scar on your head? Weird. They talk about CHers who have head injuries. Who knows with these headaches huh?
Anyway, it will be interesting if they finally find the exact cause of these HAs. We will all be very relieved to finally know.
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Linda_Howell
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Re: Scalp Cyst/Cluster Headache
« Reply #5 on: Aug 14th, 2007, 11:37pm » |
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Quote: if they finally find the exact cause of these HAs. We will all be very relieved to finally know.
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and here I was, thinking that Goadsby said it was caused by a deformed Hypothalmus.
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luveemom
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Re: Scalp Cyst/Cluster Headache
« Reply #6 on: Aug 15th, 2007, 9:37am » |
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That is interesting......I have had a small cyst on my scalp for many years on same side of head as clusters..(right)...but it is in the back....it really only hurts when I wear a baseball hat. I also had a fractured skull when I was a kid though, so who knows huh?
alicia
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Josh W
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Re: Scalp Cyst/Cluster Headache
« Reply #7 on: Aug 15th, 2007, 10:03am » |
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When I was 9 I had an arachnoid cyst drained that sat on my left optical nerves and frontal lobe, same side as my clusters. Every Dr. has told me that my ha are a result of my cyst, "ghost pains". To get to the point, my clusters started after my cyst was drained. I hope you are the opposite. I pray you have many pf years ahead.
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starlight
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Re: Scalp Cyst/Cluster Headache
« Reply #8 on: Aug 15th, 2007, 11:34am » |
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Linda,
Yes but there are other ideas as well as unknowns floating around out there such as ideas that head injury and damage to blood vessels on the surface could cause cluster headaches. Also, real question marks about where exactly the pain is originating from in CH. These unknowns make me wonder. Anyway, not trying to argue with anyone, just kind of throwing this out there--my head does feel different but the proof will be in the pudding I will have to check back if the head aches don't hit.
And if someone else has a cyst and getting it removed turns out to help then they will know.
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nani
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Re: Scalp Cyst/Cluster Headache
« Reply #9 on: Aug 15th, 2007, 11:38am » |
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on Aug 15th, 2007, 11:34am, starlight wrote:| Also, real question marks about where exactly the pain is originating from in CH. |
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The blood vessels swell to 20X their normal size, which presses on the trigeminal nerve.
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starlight
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Re: Scalp Cyst/Cluster Headache
« Reply #10 on: Aug 15th, 2007, 11:45am » |
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Nani,
I read a report on the net where a guy with chronic CH had all the nerves on that side of his head cut and the headaches continued--the team raised the point that it put into question where exactly the pain of CH originates from. Nani, there's a lot on the net where it is stated that the mechanism, including the pain mechanism, of cluster headache is not understood.
Anyway, like I said I'll just check back in if the HAs don't show up.
I know I get twinges every day, don't know where those originate from, not getting them now. Just wishing myself and everyone pain free.
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vietvet2tours
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Re: Scalp Cyst/Cluster Headache
« Reply #11 on: Aug 15th, 2007, 11:58am » |
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on Aug 15th, 2007, 11:34am, starlight wrote:Linda,
Yes but there are other ideas as well as unknowns floating around out there such as ideas that head injury and damage to blood vessels on the surface could cause cluster headaches. Also, real question marks about where exactly the pain is originating from in CH. These unknowns make me wonder. Anyway, not trying to argue with anyone, just kind of throwing this out there--my head does feel different but the proof will be in the pudding I will have to check back if the head aches don't hit.
And if someone else has a cyst and getting it removed turns out to help then they will know. |
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I want a cyst. 
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| « Last Edit: Aug 15th, 2007, 12:07pm by vietvet2tours » |
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starlight
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Re: Scalp Cyst/Cluster Headache
« Reply #12 on: Aug 15th, 2007, 12:01pm » |
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To anyone who reads this, I admit I don't know anymore than anyone else about cluster headache. That stuff is complicated, complicated stuff, and I don't understand it. All I know is part of the reason I had the surgery done was hoping it could make a difference. I don't mean to come across as saying--I have discovered the cure to cluster headaches--not at all, I am just hoping it will make a difference for me. And if it does, I'll take it. Anyway, take care and pain free wishes.
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Re: Scalp Cyst/Cluster Headache
« Reply #13 on: Aug 15th, 2007, 1:58pm » |
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Once, I had a cyst on my wrist ... I could hardly get the beer can to my mouth !!
PF Wishes
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