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Topic: To all the cluster experts... (Read 691 times) |
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vv1nd
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To all the cluster experts...
« on: Jul 10th, 2007, 11:07pm » |
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Hello,
For almost two years now, I have been getting headaches that follow the exact same symptoms I read about cluster headaches:
-Often occur during the same time of day
-Have periods of remission where i dont get them for quite some time.
-Sometimes wake me up from sleep, occur usually for no longer than
about 20-25 minutes.
-Occur in and around my right eye, the same spot for almost two years
without fail.
-No migraine symptoms present: no nausea, dizziness, etc. It just hurts,
nothing more.
What I am confused about though, is that what I am going through is not as SEVERE as I here clusters being. The pain hurts bad, but it doesn't make me rock on the floor or feel suicidal. Also, I do not get the drooping eyelid and running nose, just the pain.
I've had a CAT scan, and seen 4 doctors (including one who looking in my sinuses) and they tell me there's nothing wrong. Another thing I should mention, is that Excedrin Migraine works miracles for these headaches; gets rid of them in minutes. Aren't cluster headaches not that easy to get rid of?
Is it possible to have cluster headaches that are a lesser version of the full blown thing?
Thanks for reading this long post
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AussieBrian
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Re: To all the cluster experts...
« Reply #1 on: Jul 10th, 2007, 11:13pm » |
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Certainly it's possible to have cluster headaches of lesser intensity and we're all rotten jealous! Nevertheless, an accurate diagnosis is very important so you might consider seeing a neurologist - preferably one who specialises in headache treatment.
All the best you lucky, lucky bastage.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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vv1nd
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Re: To all the cluster experts...
« Reply #2 on: Jul 10th, 2007, 11:21pm » |
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Thanks for the quick reply Brian, don't mean to make anyone jealous (trust me it hurts plenty  . I seem to have found dozens of websites that go over the nuances of cluster headaches, but none that discussed whether or not it is possible to suffer ones that are sort of a "grey area".
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AussieBrian
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Re: To all the cluster experts...
« Reply #3 on: Jul 10th, 2007, 11:26pm » |
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Then welcome home and ask all the questions you like. That's why we're here.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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Barry_T_Coles
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Re: To all the cluster experts...
« Reply #4 on: Jul 10th, 2007, 11:27pm » |
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Hi & Welcome
Exactly what Brian has said; my sister in-law has suffered from mild CH for over 30 years but has never experienced anything above a KIP 7 & it doesn’t last for long.
Cheers
Barry
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cathip
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Re: To all the cluster experts...
« Reply #5 on: Jul 11th, 2007, 12:13am » |
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No Horner's Syndrome??
Can you drink alcohol while you are in cycle?
You're soo right, though, pain is pain..............
Wishing you a PF night, VV,
Cathi
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vv1nd
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Re: To all the cluster experts...
« Reply #6 on: Jul 11th, 2007, 1:33am » |
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Actually, alcohol proved to be really dangerous for me the other night. I had one beer with dinner, and minutes later I had a killer headache in and around my right eye where it always is. Then i recalled having read that alcohol can trigger clusters, but I didn't think just one beer would do it!
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Annette
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Re: To all the cluster experts...
« Reply #7 on: Jul 11th, 2007, 2:51am » |
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Hello VV1 and welcome
When the headache symptoms are not clear cut the best thing you can do is keeping a headache diary. You write down every time you get the headache as to what time, how long, what characteristics of the pain, the intensity of the pain, what brought it on, what seemed to trigger it, what made it better or worse ...etc .. for a long as you can then take it to a neurologist who is experienced in diagnosing and treating headaches. There are many types of headaches and some have similar symptoms. You may want to double check on your family history to see if anyone else have headaches and what they have. Some headaches do run in the family.
Unfortunately there isnt a definite test like a scan that can say for sure this is CH or migraine or whatever. It takes an experienced doctor and good/accurate symptom description from the patient and sometimes a bit of following up to get to the correct diagnosis.
Hopefully its not CH and it will be gone for you, pain of any type sucks!
Take care and painfree wishes.
Annette
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Tara Ann
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Re: To all the cluster experts...
« Reply #8 on: Jul 11th, 2007, 6:45am » |
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Horner's syndrome doesn't always have to be present. (droopy watery eye)
And for years before the big ones I had mild ones along with my migraines. I just didn't give them too much thought at the time. Esp with having 2 diff headache types, they got confused and mixed up with eachother. When my ch became more painful, THEN it was given a HELL of a lot more thought! LIke wtf is wrong with me and OMG hubby take me to the hospital I think I have an anuerysm like grandpa!
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Patrick_A
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Re: To all the cluster experts...
« Reply #9 on: Jul 11th, 2007, 7:37am » |
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Tension HA maybe
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E-Double
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Re: To all the cluster experts...
« Reply #10 on: Jul 11th, 2007, 1:08pm » |
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on Jul 11th, 2007, 7:37am, Patrick_A wrote:
That's not a tension HA!!!
Horner's does not need to be present.
Pain levels do vary and some have never experienced anything over a 7 as we define it (and now some doctor's ) by the kip scale
It could be the caffiene in excedrin that is helping.
Due to the consistent duration it could be paroxysmal hemicrania.
We are not doctors just peeps with HA and supporters of.
Find a headache specialist.
Good luck
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starlight
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Re: To all the cluster experts...
« Reply #11 on: Jul 11th, 2007, 1:30pm » |
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Going with my first instinct, the only thing that sounds "iffy" is the timing of them
20-25 minutes--my first instinct is that is kinda short or maybe just kinda too consistent. Or, you just may be lucky for now that they are of a regularly short duration. Consulting a neurologist is a must. Good luck and pain free wishes. Star
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Patrick_A
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Re: To all the cluster experts...
« Reply #12 on: Jul 11th, 2007, 4:59pm » |
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Nevertheless, No-one here can give a proper diagnosis.
Go to a competent Neuro and you will get your proper diagnosis.
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Ray
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Re: To all the cluster experts...
« Reply #13 on: Jul 12th, 2007, 1:29am » |
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Not to do this on my advice, but a nitroglycerin tablet and rapid onset of a headache is thought to be convincing evidence of cluster headache.
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You have my prayers and compassion-I'm right there with you.
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sandie99
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Re: To all the cluster experts...
« Reply #14 on: Jul 12th, 2007, 4:33am » |
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Does those HAs come during the certain time of the year?
DO keep accurate HA diary. I get clusters and migraine and mark them all down to my calendar.
Sanna
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BarbaraD
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Re: To all the cluster experts...
« Reply #15 on: Jul 12th, 2007, 6:48am » |
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Ok, here's my "diagnosis" -- sounds like CH to me.
I started out having them by drinking about a half a beer -- didn't know what was happening -- thought I was having a hangover before I got drunk. Finally just stopped drinking beer cause it hurt too bad.
Excedrin (Extra Strength) - 3 of them - will stop a CH for me if I get them down before it revs up too bad (but WARNING: take them too often and they WILL cause rebounds). Red Bull works better - chug-a-lug a can of that and it works in minutes.
Get to a neuro and get a diagnosis and get on some prevents.
These things are different in everyone, so there's no set pattern. Glad you don't think you're hurting as bad as some here. We all handle pain in different ways.
The most important thing is to find a doctor and a neuro that you can deal with (and you may have to go thru several before you hit on the right ones). Interview them and find out what they know about headaches and if they give a damn about finding out anything new. That's vitally important in treating CH.
Keep us posted.
Hugs BD
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chrisw
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Re: To all the cluster experts...
« Reply #16 on: Jul 12th, 2007, 10:20am » |
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I had CH for years that sound like yours. They were very short lived, pretty painful at the time, but I didnt even take any meds for it for years. By the time they woke me up, I would go drink a steaming hot cup of tea and they would disappear by the time I was done the tea. But they got worse over time and now the hot drimks dont help, and I wish for those good old days again. They just got worse and worse over the years, hopefully this doesnt happen to you, just be aware thay it might, and know what your options are, so youre ready if they get worse.
good luck,
chrisw
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rolo65
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Re: To all the cluster experts...
« Reply #17 on: Jul 12th, 2007, 8:00pm » |
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Of all the experts on this site no one has mentioned O2 yet in this thread.
The MRI or CAT scan was a good idea!
Get some O2 and a cluster mask. If O2 works, it is way better than the drugs in my opinion.
PF wishes,
Roland.
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| « Last Edit: Jul 12th, 2007, 8:57pm by rolo65 » |
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AussieBrian
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Re: To all the cluster experts...
« Reply #18 on: Jul 12th, 2007, 8:31pm » |
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on Jul 12th, 2007, 8:00pm, rolo65 wrote:| If O2 works as an abortive, you have CH.... If it works I would say skip the neuro.... |
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Read all the information, vv. Take no-one at their word (not even me).
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chewy
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Re: To all the cluster experts...
« Reply #19 on: Jul 12th, 2007, 10:24pm » |
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Quote:| 20-25 minutes--my first instinct is that is kinda short |
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My worse clusters have been for a 20 -40 minute duration for the last 30 years.
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thebbz
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Re: To all the cluster experts...
« Reply #20 on: Jul 12th, 2007, 10:31pm » |
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Take the cluster quiz on the left. Post the result. Please get to the neurologist. One that has clusterheadache expierence. This is all just supposition. Good supposition though.
all the best
jb
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starlight
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Re: To all the cluster experts...
« Reply #21 on: Jul 12th, 2007, 10:42pm » |
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Chewy,
You said 20-40 minutes. This guy said 20-25 minutes. There's a pretty big difference. If I'm wrong I'm wrong--mine are longer than that and do vary in how long they last--that's what jumped out at me that his do not vary in the amount of time that they last and seem to stay near the 20 minute mark which would be relatively speaking "kinda" short. 40 minutes with a cluster is a LOT longer than 20. A neuro can tell him what he has. He should see one.
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starlight
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Re: To all the cluster experts...
« Reply #22 on: Jul 12th, 2007, 10:53pm » |
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Chewy,
One more thing I kind of used in my "first instinct" diagnosis. A neuro once told me that the way cluster headaches operate, oftentimes, the more painful the headache, the lesser the time duration. He said that to me in response to my saying at the time (years ago) that during my previous cycle the headaches were a lot more painful than the past but somewhat shorter--it was a trend throughout the whole cycle. The guy asking the question--he is saying that his pain is not severe and his headaches and are on the shorter end of the time scale, so that kind of jumped out at me.
One disclaimer: I would say to this neuro if I could that at the peak of a cycle that rule goes straight out the window. they can be both very painful and very long.
Anyone, that was what he said, and I mostly agree with it. During the peak of cycle I would say I actually disagree with that totally though. So who knows.
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Annette
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Re: To all the cluster experts...
« Reply #23 on: Jul 13th, 2007, 3:06am » |
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There are many types of headaches with similar symptoms but very different treatments. Using the wrong treatment for the wrong type of headaches is not just ineffective and time wasting but can also be dangerous.
First step first, see an experienced neurologist, tell him/her all your symptoms and get a proper diagnosis.
Best of luck and painfree wishes.
Annette
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Re: To all the cluster experts...
« Reply #24 on: Jul 13th, 2007, 9:45pm » |
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I just wanted to agree with the others that recommend you see a neuro as soon as you can and get a proper diagnosis. Start keeping a detailed headache diary, it will greatly help the doc give a correct diagnosis.
Also wanted to add that nitro can't be used to distinguish between clusters & migraines, since nitro will also trigger migraines. You'd be no closer to a correct diagnosis by using nitro. You'd be putting yourself through more pain for no reason.
Goodluck
UNsolved
Edited for spelling 
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| « Last Edit: Jul 13th, 2007, 9:46pm by unsolved1 » |
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