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Boramin
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Do I have cluster headaches?
« on: Jan 24th, 2007, 3:39am » |
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Hi, I was hoping you all could help me figure out if I may have cluster headaches.
I have suffered from severe headaches since I was about 16 or 17, and I am now almost 21. I always assumed that they were just severe sinus headaches related to my constant sinus congestion. I never knew about cluster headaches until just now, and reading the descriptions of the pain sounds exactly like what I experience.
My headaches almost always happen like this:
First I start to feel a little light headed and I feel pressure around my right eye. Next, my vision becomes blurry and eventually I cannot see in the center of my vision- this is not like seeing "spots" so much as I just can't focus on anything in the middle of my vision.
After that the pain really sets in, and is always on the right side of my head. It feels like someone is trying to force my right eye out of its socket from behind. This pain alone is absolutely unbearable. I also have severe pain in my eyebrow and my cheek bone (right above and below my eye.) In addition, my right temporal and occipital regions have the same sharp pain.
This will usually last for 1-3 hours. This is where I seem to be different from the cluster headache descriptions. Instead of moving around, I generally try not to open my eyes because my vision is so screwed up. So instead, I usually just lay down and hit various parts of my face and head in order to try and distract myself and (always to no avail) hit something that will relieve the pain. No regualr headache medications ever help.
I haven't ever kept track for periodicity of headaches, because I never thought that could be important, but I always get them in the afternoon and they usually happen around the season changes from spring/summer and fall/winter.
Any help would be great, I would be so happy to finally find a cure for whatever kind of headaches I get.
Thanks!
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artonio7
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Re: Do I have cluster headaches?
« Reply #1 on: Jan 24th, 2007, 4:22am » |
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Hi Boramin.
Sorry to hear about your headaches. I'm glad you found this site though.
Have you ever been to a Neurologist?
Everything you've described about the pain sounds like clusters but the blind spot in the effected eye.... You should see a neurologist.
with warm regards,
Tony
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Pellsey
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Re: Do I have cluster headaches?
« Reply #2 on: Jan 24th, 2007, 5:03am » |
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on Jan 24th, 2007, 3:39am, Boramin wrote:I would be so happy to finally find a cure for whatever kind of headaches I get.
Thanks! |
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If it is clusters you have and you find the cure please let me know where it is too.
Ta
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BarbaraD
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Re: Do I have cluster headaches?
« Reply #3 on: Jan 24th, 2007, 5:31am » |
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Go over to the left hand side of this page and take te cluster quiz. If it is CH - get yourself to a neuro and get some help. They usually run a MRI to rule out other things, but the quicker you get help the better.
You might try Red Bull as an abortitive until you can get in to see a neuro.
Hope it's not CH but if it is -- you're in the right place. Read Read READ! There's years of experience on this board.
Hugs BD
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BB
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Re: Do I have cluster headaches?
« Reply #4 on: Jan 24th, 2007, 6:16am » |
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on Jan 24th, 2007, 3:39am, Boramin wrote:
My headaches almost always happen like this:
First I start to feel a little light headed and I feel pressure around my right eye. Next, my vision becomes blurry and eventually I cannot see in the center of my vision- this is not like seeing "spots" so much as I just can't focus on anything in the middle of my vision.
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Hi Boramine
Some of the description of your headache sounds like CH but the vision problem is not typical. It maybe ocular migraine.
I think you really need to see a good neurologist who is experienced with headaches to get a proper diagnosis.
I hope that you dont have CH.
Take care and painfree wishes to you.
Annette
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Chillrmn1
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Re: Do I have cluster headaches?
« Reply #5 on: Jan 24th, 2007, 6:32am » |
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on Jan 24th, 2007, 6:16am, BB wrote:
Hi Boramine
Some of the description of your headache sounds like CH but the vision problem is not typical. It maybe ocular migraine. Annette |
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My initial thoughts also. My wife gets ocular migraines but hers don't present with the severity of the pain mentioned.
See a Neuro for diagnosis as others have already advised.
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starlight
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Re: Do I have cluster headaches?
« Reply #6 on: Jan 24th, 2007, 8:56am » |
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It sounds like clusters except for vision thing. I read somewhere that some with cluster actually do experience aura--but I guess that would be different. Annette's suggestion of ocular migraine maybe. Please go see a neurologist--whatever you have sounds very painful. Starlight
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Margi
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Re: Do I have cluster headaches?
« Reply #7 on: Jan 24th, 2007, 9:48am » |
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Nope, not cluster. Classic migraine with aura. There is no pain at all with just occular migraine - just the phosphenes (aura). Migraines don't have to last 24 hours to qualify as migraines. The flippy thing about the phosphenes is that the sensation doesn't go away when you shut your eyes because it's not actually happening in your eyes. It's happening in your brain. (Flo taught me that!)
I get both occular migraine AND classic migraine with aura. The latter is no fun, much prefer the former because the pain just doesn't come. It's a creepy feeling but it does pass.
I've had some success aborting the occular if I can get on oxygen right away but if I leave it too late, it does nothing.
Biofeedback helped me a lot in my 20's when I was getting hit almost weekly, I literally learned how to talk myself out of getting a migraine but it really is a learned process. You should talk to a doctor about this.
Migraines hurt like hell but they're not cluster.
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BB
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Re: Do I have cluster headaches?
« Reply #8 on: Jan 24th, 2007, 6:20pm » |
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Ocular/retinal migraines can come with or without headaches but usually not as severe as you described.
Ocular migraine can occur alongside cluster headache too.
You must see a neurologist to get properly diagnosed as vasoconstrictors such as triptans should be avoided if you have ocular/retinal migraine.
All the best.
Annette
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Pinkfloyd
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Re: Do I have cluster headaches?
« Reply #9 on: Jan 24th, 2007, 7:55pm » |
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on Jan 24th, 2007, 6:20pm, BB wrote:
You must see a neurologist to get properly diagnosed as vasoconstrictors such as triptans should be avoided if you have ocular/retinal migraine.
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Can you site where you got this information?
Ergots and triptans are often prescribed for ocular migraines, when there is a pain component.
What this person has described does not sound like BAM or Hemiplegic migraines, which should not be treated with triptans or ergots.
Although Ocular migraines may be the right call, it is more likely as either Margi suggested, common migraine with aura, or clusters with a vision related symptom.
Clusters often come with one or more symptoms, commonly thought to be more migraine related. Thats why we often get mistreated (in more ways than one).
One thing for sure, Boramin needs to see a qualified headache specialist. It is possible that Boramin has some other mild symptoms that could indicate BAM that she hasn't noticed (yet) since she takes to a prone position. Probably not but better safe than sorry.
Bobw
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BB
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Re: Do I have cluster headaches?
« Reply #10 on: Jan 24th, 2007, 8:53pm » |
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The "one-eye" migraine
In a related condition called ocular migraine, which is even less common than migraine with aura, individuals experience the same visual disturbances that occur during an aura, but the symptoms only occur in one eye. The aura that occurs before an ocular migraine is commonly followed by a migraine headache. And the same triggers that can bring on migraine with or without aura also can cause ocular migraine.
Ocular migraine can produce various degrees of vision loss or obstruction. Some patients, says Dr. Mays, report blind spots or "holes," referring to missing sections in the normal visual field, or they may experience a shade of black or gray over the visual field. Some people compare the visual phenomena of ocular migraine to the patterns produced by an old television with faulty reception, says Dr. Mays. "Others say it’s like looking through watery glass."
Ocular migraine symptoms are temporary and do not harm the eye; but they can interfere with daily activities, such as reading and driving and can interrupt the work day.
Fear about vision loss caused by ocular migraine often leads an individual to seek medical care, says Dr. Mays. In some cases, the first stop is the ophthalmologist’s office. That’s fine, says Dr. Mays, but people diagnosed with ocular migraine should also see a neurologist so that conditions such as stroke, which can cause similar visual symptoms, can be ruled out and so that the migraine itself can be effectively managed. Other conditions that produce ocular-migraine like symptoms include retinal artery thrombosis (blood clot in a vein inside the eye) and, as noted, migraine with aura.
Triptans are not recommended, however, for ocular migraines, because the constricting affect they have on blood vessels could cause problems in the retinal vessels, resulting in vision loss. The best treatment for ocular migraine, says Dr. Mays, is prevention—avoiding triggers, minimizing stress, maintaining a consistent schedule and getting enough sleep.
The above is quoted from an article by Clevelan Clinic, a well known headache specialist clinic
http://www.clevelandclinic.org/health/health-info/docs/3200/3266.asp?ind ex=11253&src=news
Ocular migraine is similar to migraine with aura but is followed by a migraine attack while the latter is often pain free. It caused by some form of retinal vein occlusion ( thats why its also called retinal migraine ). Any vasocontrictors such as tryptan will increase the venous occlusion making the condition worse, and increase the risk of stroke, or retinal vein infarction which can lead to permanent damage.
There are several other articles on ocular migraine and the contraindication of use of triptans. I will look for them and post a bit later.
Annette
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starlight
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Re: Do I have cluster headaches?
« Reply #12 on: Jan 24th, 2007, 11:05pm » |
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It is possible you have cluster headache with aura. It is there in the literature that cluster headache occurs in a small percentage with aura. If you feel like your eye is being pushed out, I say that sounds like cluster. But the visual symptoms you describe are not the norm--that does not mean you can rule it out. Please, go to a neurologist and ask them for a diagnosis because I think we would all like to know what you have and we would love to see you also get some relief.
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Pinkfloyd
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Re: Do I have cluster headaches?
« Reply #13 on: Jan 24th, 2007, 11:14pm » |
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on Jan 24th, 2007, 8:53pm, BB wrote:
There are several other articles on ocular migraine and the contraindication of use of triptans. I will look for them and post a bit later.
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on Jan 24th, 2007, 9:30pm, BB wrote:
None of the above articles concur with the contraindication you mention. If you were just trying to educate me on migraines though, thanks.The risk of stroke mentioned in the medicinenet article is not related to this discussion. Migraine and increased risk of stroke is very real indeed, but not related to this.
People know that if anyone here is not an advocate of triptans....it's me.
That said, I still stand by my comments that doctors do prescribe triptans and ergots for "ocular/retinal migraines"
Dr. Mays at The Cleveland Clinic seems to have a different description of retinal migraines than even the IHS guidelines that most doctors go by, and all clinical trials that I know of, follow for accepting diagnosis of headaches.
Her boss, Dr. Kunkle says triptans shouldn't be used to treat "auras" only because the pills wouldn't work fast enough and the injections then wouldn't be available to treat any subsequent migraine pain.
There is a wide range of conditions that doctors refer to as ocular migraines. Migraines are quickly becoming diagnosed in as wide a range of symptoms as the term addiction.
We have abdominal migraines and porn addictions.
I asked to have the information cited, and you did that. Thank you.
Not that I agree with Dr. Mays but you don't need to keep searching for any more citations.
Bobw
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Re: Do I have cluster headaches?
« Reply #14 on: Jan 25th, 2007, 12:46am » |
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One interesting thing about medicine that there are so many different views and approaches especially when dealing with grey areas such as migraines and cluster headaches.
You are correct BobW in saying that doctors do prescribe tryptans for ocular migraines when there is a migraine attacks following the visual disturbances. I have read some recommendation of the same.
However, it is proven by fundus photography, fluorescein angiogram and PET scan that ocular/retinal migraines are caused by some form of ischaemia in the occipital area of the brain or ischaemia of the optic nerve itself, most often in some form of arterial or venous occlusion, which can be from blood vessels spasms. All of the above citations mentioned that ischeamia is the mechanism in ocular/retinal migraine and therefore vasoconstrictors can worsen the condition. Risk of stroke ( brain infarction ) is present whenever there is ischaemia in the brain.
Just wanted to alert Boramin to the possibility of problems, thats all.
Annette
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Pinkfloyd
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Re: Do I have cluster headaches?
« Reply #15 on: Jan 25th, 2007, 1:58am » |
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on Jan 25th, 2007, 12:46am, BB wrote:
However, it is proven by fundus photography, fluorescein angiogram and PET scan that ocular/retinal migraines are caused by some form of ischaemia in the occipital area of the brain or ischaemia of the optic nerve itself, most often in some form of arterial or venous occlusion, which can be from blood vessels spasms. |
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This is not true. All the different migraine variants that fall into the mish-mosh of ocular migraines, are NOT caused by ischemia. Some are.
on Jan 25th, 2007, 12:46am, BB wrote:
All of the above citations mentioned that ischeamia is the mechanism in ocular/retinal migraine and therefore vasoconstrictors can worsen the condition. |
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No they (the citations) don't.
on Jan 25th, 2007, 12:46am, BB wrote:
Risk of stroke ( brain infarction ) is present whenever there is ischaemia in the brain.
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Thats why people with migraine (in general) have a higher incidence of stroke.
And a good reason to find something other than imitrex to treat ALL migraines...and clusters.
If you are linking vasospasm with ischemia, (you can make that direct connection) then everyone here should heed the same warnings, not just people with ocular migraines.
Maybe that why so many people die from imitrex.
on Jan 25th, 2007, 12:46am, BB wrote:
Just wanted to alert Boramin to the possibility of problems, thats all. |
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I will agree with this.
I will also end the discussion on migraines before I get a demerit and am told to sit in the corner.
Bobw
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LeLimey
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Re: Do I have cluster headaches?
« Reply #16 on: Jan 25th, 2007, 5:37am » |
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Boramin if you're still reading I hope this just drives home that you need a diagnosis from a headache specialist neuro! There are over 600 headache types I believe and whilst we can argue the in's and out's here you need a proper diagnosis and correct meds asap.
Let us know how you get on please, we'd like to know whether it turns out to be CH or something else
All the best
Helen
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B14CK5H33P
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Re: Do I have cluster headaches?
« Reply #17 on: Jan 25th, 2007, 7:49pm » |
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I can't say anything that hasn't been said already except reinforce:
Find a GOOD neuro and get an MRI.
I will say this: If you can lie down with it, I don't think it is cluster IMHO. I do good to sit indian style, rocking back and forth and focusing on breathing, trying to remain calm, reminding myself that 'freaking out and beating my fists on things will only elevate the bloodflow' - however in a severe CH, there is no control.
Peace,
Carl D
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thebbz
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Re: Do I have cluster headaches?
« Reply #18 on: Jan 25th, 2007, 9:26pm » |
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Doctors dont know shit! (IMHO)Get to a neuro, and in the meantime read all discussions like this one ,read and study headaches...here's a start
Conquering Headache
Dr. Rappaport
This is a good strong base of information.
You have to know for your own good. A proper diagnosis will confirm what you know. The pain will give you motivation to learn..did me anyway.
28 years and counting...
all the best
jb
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DoverNH
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Re: Do I have cluster headaches?
« Reply #19 on: Feb 10th, 2007, 12:19pm » |
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Hi, you guys. I had this exact same thing with a partial loss of vision in one eye for 4 days. Went to an ophthamologist: "We dunno!"
Have had other "eye-graines" with and without follow-up head aches, but this one was spooky. Why didn't they rec neurologist I wonder?
Have also had clusters where I want to pluck out my eye.
ps First post 
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JohnM
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Re: Do I have cluster headaches?
« Reply #20 on: Feb 12th, 2007, 4:50am » |
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on Jan 25th, 2007, 7:49pm, B14CK5H33P wrote:
I will say this: If you can lie down with it, I don't think it is cluster IMHO.
Carl D |
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I don't agree with your opinion Carl. Just because a person can lie down during a HA does not mean it is not CH.
I am a long term CH sufferer for at least 35 years. I find that going to bed and lying down in a dark room is the best way for me to "tough it out". It is still sheer agony but that's how I handle it best.
Pacing and headbanging always makes me feel much worse and often nauseus.
I am not the only one here who finds lying down the best tactic.
Some do, some don't. It's just not clear cut.
John
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daniel96
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Re: Do I have cluster headaches?
« Reply #21 on: Feb 12th, 2007, 6:02am » |
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on Feb 12th, 2007, 4:50am, JohnM wrote:
I don't agree with your opinion Carl. Just because a person can lie down during a HA does not mean it is not CH.
I am a long term CH sufferer for at least 35 years. I find that going to bed and lying down in a dark room is the best way for me to "tough it out". It is still sheer agony but that's how I handle it best.
Pacing and headbanging always makes me feel much worse and often nauseus.
I am not the only one here who finds lying down the best tactic.
Some do, some don't. It's just not clear cut.
John
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Yeah I guess different people got their own ways of handling the 'beast'. As far as concerned, I am the sort who tried to lie down and stay put in one location. And your mind is a powerful weapon, have to stay clam too. (Even though I know its hard) Its a race against time....
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chopmyheadoff
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Re: Do I have cluster headaches?
« Reply #22 on: Feb 12th, 2007, 7:35am » |
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i can lye down up to about a k6 - after that there is no chance.
im not even having the "everyone is different" line - i defy anyone to lye down still being in that much pain.
if you say you can - youve never experienced a k10
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TonyG1
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Re: Do I have cluster headaches?
« Reply #23 on: Feb 12th, 2007, 8:19am » |
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I can't lie down either... the best way I can describe my 'lying down' is with my face in the bed, hands on the side of my head pressing as hard as I can, @ss in the air.... drowning in agony is a good way to describe it...
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daniel96
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Re: Do I have cluster headaches?
« Reply #24 on: Feb 12th, 2007, 8:47am » |
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on Feb 12th, 2007, 7:35am, chopmyheadoff wrote:i can lye down up to about a k6 - after that there is no chance.
im not even having the "everyone is different" line - i defy anyone to lye down still being in that much pain.
if you say you can - youve never experienced a k10 |
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well maybe I haven't experience a full blast yet. I hope it wont come. cause the current ones already damn.... 
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