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Topic: is this really cluster headache? (Read 530 times) |
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eyepoppin
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is this really cluster headache?
« on: Oct 17th, 2006, 4:10am » |
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My doctor said that he believes I'm getting cluster headaches (and all this time I thought they were just the result of nasty muscle tension in my neck).
There's pretty much three different kinds of pain that are suspected to be a result of cluster headache. The first and most prolonged is a very strong, sharp pinching, stabbing feeling in the bone/eyebrow over my left eye. It can last hours and make it impossible to do anything except try to stay calm. I'd say something like a 6/10 for pain.
The second type sometimes "pops" (har har, pun) into being during the first kind, and sometimes manifests entirely on its own... my left eye simply feeling like it's literally being sucked out of the socket. It's not so much painful as it is freaky - a panic trigger.
The third kind is a little deeper in my head, on the left side as usual. Right around the indendation on the side of the skull forward of the top of the ear, maybe a little farther forward, and an inch or so into the brain. Absolutely unbelievable pain, and less steady than the first kind for sure. It tends to hit completely out of nowhere with zero warning, last for anywhere from 5-30 seconds, and then stop as quickly as it started. Sometimes it'll resume again 5 seconds later, sometimes 30, sometimes 5 minutes later, sometimes it's gone for a couple days. For pain it's a definite 10/10, most intense pain I've experienced (more painful than falling out of a loft and landing on my nose). So strong that if I'm walking across a room when it happens my knees will buckle and I get worried I'm going to fall and hurt myself, so I end up lying on the floor and flailing around freaking out until the attacks stop.
Yeah, guessing this has to be cluster headache... partly wondering what the hell to do about this though. I've tried low dose prednisone, which helped break a cycle of the first kind of headache that was on the verge of devastating me in school. However, both my doctor and I aren't excited about taking that for prolonged periods, especially since I'm in my early 20s and don't want to devastate my body already. Tried Imitrex - simply caused some of the worst panic attacks I've experienced, so I guess triptans are out. Lexapro (two months now) seems to have done nothing in any respect; can't tell I'm even on it. Xanax seems to help sometimes, but that could be simply because it's putting me so out of touch. OTC painkillers do little for the first kind of headache, and nothing for the latter two. Doctor just wrote a prescription for intranasal lidocaine, which I'm holding some hope in... is this even still on the market? He was saying he wasn't sure.
I should mention that I've had some serious aura incidents (usually "bugs" appearing in my visual field, little black dots that appear and move in straight lines and fade out... but I've had them get so huge they were big blots of blackish-purplish energy "falling" toward the ground), often get nauseated, always fatigued, an incredible amount of muscle tension... which would be why I sometimes wonder if I'm getting cluster headache, something else, or tension/migraine/cluster all at once.
Been getting the first kind of headache on and off today, it slowly crescendos into the second kind for brief moments here and there... don't think I'm going to be sleeping well, if at all, tonight...
Any responses of any sort would be awesome, and if this helps someone else that's gone through what I've described, I'll be glad.
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chopmyheadoff
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Re: is this really cluster headache?
« Reply #1 on: Oct 17th, 2006, 8:28am » |
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deary me, sorry your in so much pain there mate.
does sound like a bit of a muddle of a few different types of headache going on.
im a "clusterhead" so dont really know a lot about the other types you have going on. the third one iv heard of before and its been referred to as and "ice pick headache". its the duration that gives it away, just a few seconds.
i think your suffering from this and migrane and possibly another type of headache in there aswell (there are quite a few) but none of the symptoms sound like to cluster to me.
If i were you id be demanding referral to a neurologist to get a propper diagnosis. try and get one that specialises in headache.
they can send you for an mri scan etc to rule out anything more sinister.
we have lots of lovely people on here who unfortunately are in a similar position to you so im sure one will be along shortly with some better advicec.
sit tight for now. your in the right place
chop
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pattik
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Re: is this really cluster headache?
« Reply #2 on: Oct 17th, 2006, 9:05am » |
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You may have more than one kind of headache, and I agree with chop about getting a neuro's diagnosis. I can only speak to the first type--you described the way most of mine begin, in and around the eye socket. Often, the first sign of pain for me is around the most inner part of the eyebrow on the affected side. Then it quickly spreads around the eye and beyond.
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eyepoppin
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Re: is this really cluster headache?
« Reply #3 on: Oct 17th, 2006, 5:15pm » |
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Thanks for the replies...
I checked into the ice pick headache. That is for sure it. I'm glad to finally know what some of it is, at least.
I always thought the first two types of pain were associated with cluster, my doctor did too... but I don't think he has experience with it, and I've never met someone with it, which makes it really hard to know. I think I do get migraines, but (if I'm identifying them properly), they're more of a widespread throbbing pain than a really sharp and pinpointed one. The pain I described around my eye is very pinpointed... usually is more psychologically devastating than anything... but it can get rather intense from time to time, enough to have had me considering going to the ER, and banging my head into doors freaking out. It doesn't spread to other areas; it just feels like that bone around my eyebrow is being jammed into a curb by some guy's boot against the back of my head, gradually pressing harder and harder as it worsens. My teeth often start hurting like crazy too.
They have snapped me out of a dead sleep before, but that's rare.
Guess I have no idea what it is then... I'll have to think of a good way of asking about a neurologist (don't want to offend this doctor, he really is a great guy).
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| « Last Edit: Oct 17th, 2006, 5:17pm by eyepoppin » |
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BB
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Re: is this really cluster headache?
« Reply #4 on: Oct 17th, 2006, 9:35pm » |
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on Oct 17th, 2006, 5:15pm, eyepoppin wrote:Thanks for the replies...
Guess I have no idea what it is then... I'll have to think of a good way of asking about a neurologist (don't want to offend this doctor, he really is a great guy). |
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If he is really a great guy, he shouldnt be offended by you asking questions about your headaches.
Good luck and painfree wishes to you.
Annette
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Charlotte
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Re: is this really cluster headache?
« Reply #5 on: Oct 17th, 2006, 9:41pm » |
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I'm sorry. I'm confused.
Did your neurologist or Dr. say he or she thinks you have cluster headaches? You can have more than one kind of headache at a time and that confuses things.
Sometimes it is a process of weeding out everything.
Good luck to you.
Charlotte
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eyepoppin
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Re: is this really cluster headache?
« Reply #6 on: Oct 18th, 2006, 7:12am » |
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My GP thinks I get tension headaches, migraines with aura, and cluster headaches.
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Charlotte
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Re: is this really cluster headache?
« Reply #7 on: Oct 18th, 2006, 7:55am » |
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"...I sometimes wonder if I'm getting cluster headache, something else, or tension/migraine/cluster all at once."
Yes, unfortunately, you can have more than one type headache occurring in the same time period.
Sorry for the confusion. I somehow missed the question.
And, welcome aboard.
Charlotte
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eyepoppin
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Re: is this really cluster headache?
« Reply #8 on: Oct 20th, 2006, 1:14pm » |
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No problem.
Thanks for the information all.
Picked up some lidocaine nasal spray the other day. If I am actually getting cluster headaches, will this only be effective at the onset, or will it be effective after it's already become strong? It'd be hard to know if it was actually preventing them or if I was simply experiencing a fleeting shadow of one if it only helps at onset...
Pharmacist told me I can't use more than 4-5 sprays per week or it might cause cardiovascular problems... anyone have comments on this?
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| « Last Edit: Oct 20th, 2006, 1:16pm by eyepoppin » |
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Linda_Howell
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Re: is this really cluster headache?
« Reply #9 on: Oct 20th, 2006, 1:49pm » |
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I see you live in MI. We have some sufferers who live there. Try this link to find a good Neuro who KNOWS about cluster headaches. We're not Dr.s here but we do know a lot about this condition. The nasel spray you refer to does not work very good for most of us.
http://www.ouch-us.org/chgeneral/doctors.htm
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BarbaraD
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Re: is this really cluster headache?
« Reply #10 on: Oct 20th, 2006, 2:39pm » |
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At the first sign of "any" of them, down a can of Red Bull and then stay on coffee for a while. You may be wired, but this usually aborts anything under a 4-5 for me.
Migraines are something else again (and yes I have them with auras also). Keep some dramamine handy for the naseau (won't help the pain much but it helps the naseau).
The others -- try ice packs (or heat - take your pick and see which one does more good).
If you can lay down it just ain't cluster.
Hope you get some relief soon. Get to a neuro (ask your doc for a referral). My GP has been great for years, but he knew when he was out of his league and got me a neuro who I've been with for 10 years now.
Hugs BD
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