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        Cluster Headache Help and Support >> Cluster Headache Specific >> Do I have cluster headaches?
        
(Message started by: Boramin on Jan 24^th, 2007, 3:39am)

Title: Do I have cluster headaches?
Post by Boramin on Jan 24^th, 2007, 3:39am

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!

Title: Re: Do I have cluster headaches?
Post by artonio7 on Jan 24^th, 2007, 4:22am

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

Title: Re: Do I have cluster headaches?
Post by Pellsey on Jan 24^th, 2007, 5:03am

on 01/24/07 at 03:39:09, Boramin wrote:

I would be so happy to finally find a cure for whatever kind of headaches I get.

Thanks!

If it is clusters you have and you find the cure please let me know where it is too.

Ta

Title: Re: Do I have cluster headaches?
Post by BarbaraD on Jan 24^th, 2007, 5:31am

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

Title: Re: Do I have cluster headaches?
Post by BB on Jan 24^th, 2007, 6:16am

on 01/24/07 at 03:39:09, 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.

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

Title: Re: Do I have cluster headaches?
Post by Chillrmn1 on Jan 24^th, 2007, 6:32am

on 01/24/07 at 06:16:44, 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

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.

Title: Re: Do I have cluster headaches?
Post by starlight on Jan 24^th, 2007, 8:56am

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

Title: Re: Do I have cluster headaches?
Post by Margi on Jan 24^th, 2007, 9:48am

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.

Title: Re: Do I have cluster headaches?
Post by BB on Jan 24^th, 2007, 6:20pm

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

Title: Re: Do I have cluster headaches?
Post by Pinkfloyd on Jan 24^th, 2007, 7:55pm

on 01/24/07 at 18:20:18, 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.

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

Title: Re: Do I have cluster headaches?
Post by BB on Jan 24^th, 2007, 8:53pm

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?index=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

Title: Re: Do I have cluster headaches?
Post by BB on Jan 24^th, 2007, 9:30pm

http://www.medicinenet.com/script/main/art.asp?articlekey=41826

http://www.mayoclinic.com/health/ocular-migraine/AN01083

http://www.emedicine.com/NEURO/topic219.htm

http://www.pneuro.com/publications/migraine/migraine.htm

Annette

Title: Re: Do I have cluster headaches?
Post by starlight on Jan 24^th, 2007, 11:05pm

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.

Title: Re: Do I have cluster headaches?
Post by Pinkfloyd on Jan 24^th, 2007, 11:14pm

on 01/24/07 at 20:53:02, 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.

on 01/24/07 at 21:30:15, 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

Title: Re: Do I have cluster headaches?
Post by BB on Jan 25^th, 2007, 12:46am

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

Title: Re: Do I have cluster headaches?
Post by Pinkfloyd on Jan 25^th, 2007, 1:58am

on 01/25/07 at 00:46:18, 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.

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 01/25/07 at 00:46:18, BB wrote:

All of the above citations mentioned that ischeamia is the mechanism in ocular/retinal migraine and therefore vasoconstrictors can worsen the condition.

No they (the citations) don't.

on 01/25/07 at 00:46:18, BB wrote:

Risk of stroke ( brain infarction ) is present whenever there is ischaemia in the brain.

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 01/25/07 at 00:46:18, BB wrote:

Just wanted to alert Boramin to the possibility of problems, thats all.

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

Title: Re: Do I have cluster headaches?
Post by LeLimey on Jan 25^th, 2007, 5:37am

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

Title: Re: Do I have cluster headaches?
Post by B14CK5H33P on Jan 25^th, 2007, 7:49pm

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

Title: Re: Do I have cluster headaches?
Post by thebbz on Jan 25^th, 2007, 9:26pm

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

Title: Re: Do I have cluster headaches?
Post by DoverNH on Feb 10^th, 2007, 12:19pm

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 :o

Title: Re: Do I have cluster headaches?
Post by JohnM on Feb 12^th, 2007, 4:50am

on 01/25/07 at 19:49:05, B14CK5H33P wrote:

I will say this: If you can lie down with it, I don't think it is cluster IMHO.

Carl D

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

Title: Re: Do I have cluster headaches?
Post by daniel96 on Feb 12^th, 2007, 6:02am

on 02/12/07 at 04:50:45, JohnM wrote:

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....

Title: Re: Do I have cluster headaches?
Post by chopmyheadoff on Feb 12^th, 2007, 7:35am

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

Title: Re: Do I have cluster headaches?
Post by TonyG1 on Feb 12^th, 2007, 8:19am

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...

http://www.websmileys.com/sm/violent/sterb268.gif

Title: Re: Do I have cluster headaches?
Post by daniel96 on Feb 12^th, 2007, 8:47am

on 02/12/07 at 07:35:09, chopmyheadoff wrote:

well maybe I haven't experience a full blast yet. I hope it wont come. cause the current ones already damn.... :)

Title: Re: Do I have cluster headaches?
Post by chopmyheadoff on Feb 12^th, 2007, 8:53am

on 02/12/07 at 08:19:32, TonyG1 wrote:

yep - thats the one :-/

Title: Re: Do I have cluster headaches?
Post by JohnM on Feb 12^th, 2007, 9:35am

on 02/12/07 at 07:35:09, chopmyheadoff wrote:

Chop - that's just your opinion!

I have had many, many k10s in my long life, and lying in bed in a dark room clutching my head in agony is where I'd rather be. I try and fight the pain by attempting to sort of "close down my brain" and isolate myself from the pain if I can. I can't really say it actually helps that much, but that's what I do anyway.

For those that prefer pacing around or rocking or headbanging - I can understand that too, but don't you dare denegrate my pain experience or the way I and others handle it. We are all different, even if you don't buy into it !!!!! >:(

I am very greatful for discovering Imigran Injections in 1995 so that I would never have to suffer like that again.

Cheers
John

Title: Re: Do I have cluster headaches?
Post by tanner on Feb 12^th, 2007, 5:32pm

At the risk of pissing some people off that I really respect and admire I have followed this and other threads like it and kept my mouth shut, something I am not going to do now.

It makes me nuts when anyone speaks in absolutes regarding CH. Can you have visual symptoms, can you lay down, does the duration of an attack decisively show whether or not you have CH or something else, do narcotics work, etc.

My CH started in 1986 and was diagnosed after an in house 2 week stay at Dr Joel Sapers clinic in MI. regular visits to The Diamond Clinic in Chicago a 5 day in house eval at Mayo in MN. and weekly visits to Dr. Kenneth Moore at Rush Presbyterian Hospital including an in hospital stay where an angiogram with isotopes and DHE 45 where administered. Dr Moore also sent all of the above findings to Dr. Niel Raskin in SF for his opinion.

The diagnosis was Chronic Cluster/Migraine variant and was explained as Clusters of unusually long duration, Visual disturbance, and predominantly daytime or evening attacks. That pattern if you can call it that has stayed pretty consistent with some twists and turns along the way.

When a HA starts to ramp up it rarely stops and never disappears completely. If I hit the K6 level I feel a splitting of the right and left sides of my brain. The only way I can describe it is the left eye stops trying and the left side stops thinking.

Can I lay down? Yes and often do with an ice bag. I can stay down until the HA goes past a K7 at which time I am dancing in bed anyway so I get up to spare my wife if it is nighttime.

Do I have attacks that last for hours without letup? Yes

Can narcotics and hypnotics take the edge off? Yes, what do they give you guy's when you go to the ER?

Do I recommend narcotics for a constant pain syndrome of any kind? Hell no. Way too much of a price to pay later.

Do I consider suicide as a way out? Yes, far too often!

Do I have Clusters? I don't know you tell me [smiley=huh.gif]

.......Tim