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Topic: Clusters? (Read 1588 times) |
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hank1212us
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Hey all....I am new to this (fortunately) but I have been trying to figure out if CHs is what I have been experiencing. I have taken the quiz but I feel it was inconclusive so maybe someone here can help.
I have never been a big headache person but in the past 3-4 months I have been hit with some severe ones that seem to fit the profile of CHs (daily, same time of day, same side of head, feels like my eye is going to explode, neck and jaw pain after it sets in, don't think that I have experienced eye droop but I haven't focused on it, also don't recall nasal issues either)Alcohol has def. been a trigger on occasion but sometimes they come on without it. They typically occur in the early evening and more so on a weekend rather than a weekday. I have never been awakened to pain (crossed fingers). Lastly, they are extremely painful but not suicide inducing (I want to stick a pencil in my eye but have not really felt like banging my head against the wall). If I take 2 Excedrins (regular if it is early in the evening, PM if it late in the evening)when I feel the first tinge in my eye, I can put a halt to it. I can also lay down until the exedrin takes effect and even go to sleep, awakening pain free. I rode the first through without anything (no access) and it lasted about 2 hours.
I have a doctors appt. next month and will discuss but after reading this website I have to say that I am scared out of my wits. It would seem that my symptoms are less severe than many of yours so I wonder if the pain, frequency, etc. will increase over time. Any feedback you all can provide would be great.
Thank you so much.
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E-Double
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Re: Clusters?
« Reply #1 on: Aug 8th, 2006, 9:05am » |
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Sounds like ya may have hit the jackpot.
Some present with aatacks that are not super severe yet hurt like the living daylights....Pain is of course relative yet we here have a scale (kip RIP) that describes the behavior that we may exhibit that coincides with pain.
It all sucks!
There are a few who do lay down and try to zone.
I don't think one can lay down and sleep unless it is a lower level "shadow" as we call it.
I hope you do not have CH but if so, please let us know and you will be guided through and supported like ya wouldn't believe!
Get yourself to a headache specialist!
E
Edited to add:
Noticed you are from Jersey. How far are you from Philly? There is Jefferson HA center which is run by some top notch Dr's who know their CHit  or take the trip to Stamford CT. Where New England Center for HEadaches is located. I go there travelling from Long Island.
Good luck!
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| « Last Edit: Aug 8th, 2006, 9:07am by E-Double » |
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George_J
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Re: Clusters?
« Reply #2 on: Aug 8th, 2006, 9:11am » |
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There's no substitute for having a clear diagnosis. Taking the cluster quiz may give you an indication, but you need to know for certain.
CH is not, in itself, suicide-inducing. It is extremely painful, yes, but I don't think that many of us would contemplate suicide because of headache alone.
Yes, alcohol is a trigger for most of us, particularly episodic clusterheads when in cycle, but the headaches occur when alcohol is not used. It's just that alcohol will frequently cause a hit.
The locations where your headaches occur seem to fit the profile, all right, but aborting with excedrin is counter to most of our experiences. Not saying it isn't possible, but just that it's counter to what's true about most of us. We're all different.
Same goes for the tears and nasal blockage. Very common for this to happen, (it happens to me), but it's probably not a universal thing.
It's common for many who are new to CH to experience sporadic hits with no discernable pattern. Frequently, these settle into more-or-less well-defined patterns after a time, particularly with episodics. But not always. One of my very good friends here experiences only hits that show no pattern, although she's had CH for quite some time. Awakening to a headache would be a strong indicator, sure, but it's by no means universal.
Lastly, don't be frightened. Truly. It's possible to live with these things, and live well and fully when you have the right support, the right meds, and the right attitude.
We'll be here, and we'll help you through it.
Best wishes,
George
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Ah! The foreigners put on such airs
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The pain they inspire
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Which flame up at their touch.
It all comes to light in the sheer
Debonair.
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seasonalboomer
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Re: Clusters?
« Reply #3 on: Aug 8th, 2006, 9:15am » |
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Hank,
Welcome to the site.
The symptoms you are describing seem to be consistent with CH. There's a few traits that I can understand your confusion when evaluating what you're experiencing versus classic CH traits.
Not everyone experiences CH in the same way. One person's suicidal-level pain may another person's "extremely painful" as we're all worknig from different levels of pain tolerance. You might check out the Kip Scale as it describes the different pain levels in a relative manner.
Some will say they could never think of laying down with a CH and that anyone that can has something else going on, and many times I feel the same way. There was a time, early on, when I could eventually find a way to lay down. I don't seem to be able to do that now until I'm so wore out there just aren't many other options.
What's the wait on the doctor? Next month? If you could get in to see him sooner you find that you could get some help in the form of an Oxygen tank for treating a headache, which would allow you to not have to be loading up on Excederins, which can result in rebound headaches.
As for not being woke up by them, some people have different patterns. There's certainly not a "preference".
The most important is to see a doctor, and preferably get in to see a neurologist who has experience with Cluster Headache. They'll know what to look for, and in most cases, what you need for preventative and abortive treatment. See the list on CH.com for a doctor in your area.
Read up, there's lots of info around here. Print what you can and take it to the doctor with you.
Scott
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Charlotte
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Re: Clusters?
« Reply #4 on: Aug 8th, 2006, 9:32am » |
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Sometimes, when you can't get to the doctor for a month, the dr or his staff can still communicate with you by telephone & email and actually help a bit before you get there. A month is too long to be untreated. It could conceivably be all over before you even get there.
Does the dr have access to your past medical history or is this a new doc?
Charlotte
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| « Last Edit: Aug 8th, 2006, 9:33am by Charlotte » |
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kcopelin
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Re: Clusters?
« Reply #5 on: Aug 8th, 2006, 9:56am » |
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Yep..I agree. Get in for diagnosis while the headaches are still ocurring. I hope it's not CH but there are worse things.
Hang in there, and I'm glad you found us-can get a lot of support and help at this place.
Kathy
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kevinpix
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Re: Clusters?
« Reply #6 on: Aug 8th, 2006, 10:35am » |
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First before you freak out, do your homework. I get hit mostly when I'm in "relax" mode. After sex, after a hard days work, or even on vacation. It seems that when we are resting, the beast comes a knocking. I try to stay busy, I've been digging my pond out by hand, atleast 5 years to go, glad to have something to do to keep headaches away. Talk with your doctor about preventative meds, breathing exercises, anything that will help you with dealing with the pain. And, to your question about the headaches getting worse, I'd have to say yes. For me, they weren't too bad. I'd just grunt they away, then I went for the over-the-counter meds, went to dentist thinking I must have infected teeth, stupidly had most removed. I wear partials now. I thought I was having seizures, migranes, and now I'm a chronic clusterhead. Hopefully you won't travel the path I took, but atleast you can talk to your doctor about the different possible means for your own treatment. Let us know what the doctor says and we will continue to support you and give you advice. Have a painfree day!!!! Kevin P.
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serendipity
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Re: Clusters?
« Reply #7 on: Aug 8th, 2006, 11:06am » |
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I definitely wouldn't rule out cluster headaches just because your tolerance to pain may be higher than some. I am 100% certain that I have cluster headaches, but I am almost always able to lie down during even the worst ones. There have been times when I have considered "doing something crazy" in order to end the pain, but I have still been able to lie down and remain relatively still.
Having said that, I have given birth to three children with absolutely no medication and didn't so much as shed a tear or cry out, but the pain I experience with even a mild cluster headache (kip 4-5) makes the pain of childbirth pale in comparison.
Judging by what you've described, the diagnosis of this untrained unprofessional is that you are having cluster headaches.
Best of luck to you. Keep us updated on the results of your doctor visit.
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| « Last Edit: Aug 8th, 2006, 11:07am by serendipity » |
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starlight
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Re: Clusters?
« Reply #8 on: Aug 8th, 2006, 12:07pm » |
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Hank,
It does sound like it may be clusters. I started getting clusters when I was 14 (am now 32) and they were quite a bit more tame than they are now (I don't mean to scare you though). They first started during day rather than night (and I did not have a full 6-8 week cycle in high school)--I would get one a day with some skipped days. They did hurt like a son of a bitch but at that time I could lay down in nurse's office of school (which I can not lay down with them now cause they hurt too much). But interestingly, if I got them at school with no heat available they would last quite a long time. Also treatments that helped back then like a hot shower, hot water bottle, etc. don't work now.
But Hank, if you do have clusters there is reason for optimism. Treatments that back then I had never heard of like O2, melatonin and all these other wonderful drugs out there can make life much much much more comfortable and less painful. So don't be afraid or alarmed. We'll talk you through it and help you out.
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starlight
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Re: Clusters?
« Reply #9 on: Aug 8th, 2006, 12:19pm » |
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Also with excedrin--doesn't that caffeine in it? If it does that is probably why it is helping you when you pop one when you first feel HA coming on. some people find that a strong cup of black coffee helps at the first sign.
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rickyshot
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Re: Clusters?
« Reply #10 on: Aug 8th, 2006, 2:48pm » |
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Sounds like clusters to me but you need the diagnosis. I started off similar to you and unfortunately as the year went on got progressively worse into screamers and head bangers. At kip 2-4 I can lie down but tend to move in bed. I am not perfectly still. I work at kip2-5's, go nutz. Until you get to the doc try a red bull with your excederin at the first sign of the attack but I would not wait a month. A month of wait with uncontrolled CH could lead to suicidal thoughts IMO. After 22 years of these things after the first week in cycle I am crazy still. Let us know what the docs say and what treatment they are starting you at.
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Margi
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Re: Clusters?
« Reply #11 on: Aug 8th, 2006, 3:15pm » |
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on Aug 8th, 2006, 8:43am, hank1212us wrote:
-->daily, same time of day, same side of head, feels like my eye is going to explode, neck and jaw pain after it sets in, don't think that I have experienced eye droop
-->Alcohol has def. been a trigger on occasion but sometimes they come on without it.
-->They typically occur in the early evening and more so on a weekend rather than a weekday.
-->I have never been awakened to pain (crossed fingers).
-->Lastly, they are extremely painful but not suicide inducing (I want to stick a pencil in my eye but have not really felt like banging my head against the wall).
-->If I take 2 Excedrins (regular if it is early in the evening, PM if it late in the evening)when I feel the first tinge in my eye, I can put a halt to it.
-->I can also lay down until the exedrin takes effect and even go to sleep, awakening pain free.
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I'm gonna go out on a limb here and disagree with the concensus... all of those things can indicate migraine. My hubby is a clusterhead, I'm a migrainer. I've experienced all of those symptoms you mention, the regularity, the eye thing, the alcohol effect (especially red wine: instant trigger), the sleeping it off part. Migraine is no walk in the park either and can be of a shorter duration as you mention.
That cluster quiz was designed to point you firmly in a yes or no direction for cluster...if it's not doing that for you, I'd definitely keep digging.
At the end of the day, remember - not one of us is a doctor here, we're all patients. Misdiagnosis can be lethal, especially if they prescribe you cluster meds for migraine or some other h/a type.
I dunno.....I still say migraine. Hope you find some relief and some answers soon. Migraines suck too. 
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Bob P
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Re: Clusters?
« Reply #12 on: Aug 8th, 2006, 3:16pm » |
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There ain't a person alive who can sleep with a cluster headache!
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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chewy
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Or lie down.
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Bob P
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Re: Clusters?
« Reply #14 on: Aug 8th, 2006, 4:04pm » |
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Quote:I've had attacks and found myself laying on the bathroom floor. Does that count?
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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chewy
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Or lie down on purpose
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| « Last Edit: Aug 8th, 2006, 4:22pm by chewy » |
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serendipity
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Re: Clusters?
« Reply #16 on: Aug 8th, 2006, 4:43pm » |
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Absolutely untrue. I just happen to have a very high tolerance for pain (I guess that's what it is). I can almost always lie down. In fact, it's the only way I can cope most of the time. If I let myself do the head bashing, rocking, etc. that I used to do when I was young and inexperienced with how do deal with my pain, I get into a state that I can only describe as insanity.
Lying still and getting myself into as much of a trancelike state as possible is the only way I can cope.
Hank, everyone's pain is different and we all handle it differently. To try to pigeonhole yourself into the "classic" cluster headache sufferer is just not going to happen. Your pain may be very different from someone else's, as will the way you handle it.
Oh, and before I forget. I agree completely that a month is too long to wait for a diagnosis. If there's any way he can see you sooner, I'd push for that.
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| « Last Edit: Aug 8th, 2006, 4:47pm by serendipity » |
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Margi
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Re: Clusters?
« Reply #17 on: Aug 8th, 2006, 5:06pm » |
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on Aug 8th, 2006, 4:43pm, serendipity wrote:
Sorry, don't mean to cause a firestorm here but...don't you kind of contradict yourself in your post if you say no one is alike, yet the inability to lie down is 'absolutely untrue'? For you, maybe, but you go on to say that everyone is different Just an observation.
And I gotta tell ya - not directed to anyone in particular, just a vent really. I've talked to many genuine clusterheads here over the years and one thing that consistenly amazes me IS the startling similarity in how they describe their pain, their reaction to it, and how closely their symptoms match. To me, there are only two types of cluster: episodic and chronic. They are a wee bit different from each other but they are of the same nature. Both fit into pretty well-defined boxes.
When we see symptoms that stray from the norm, that quite often indicates another type of headache. True cluster IS very rare. I am always gobsmacked that there are SO many "clusterheads" here. I mean, I know DJ has himself hooked up to a lot of search engines but....holy WOW! Like I said, true cluster is rare.
I think there are hundreds, if not more, misdiagnosed people here at this website. That could be genuinely the fault of their doctors who dump otherwise unidentifiable head pain into the cluster box. Or, it could be folks who haven't yet seen a doctor but feel qualified to diagnose themselves over the internet. I've seen some of the more regular posters here have their symptoms morph over time until they closely match that of a cluster diagnosis (that part I never understand). There are a lot of good learning tools here that could easily teach anyone how to be a clusterhead. It's a double-edged sword - do we provide the info for confirmation and help to the genuine sufferers, or do we not put it up there for fear of someone developing symptoms by osmosis?
For those of us that live with genuine cluster, it is unimaginable why anyone would WANT to be a clusterhead. If these people ever really SAW a true cluster, I'm sure they'd run screaming. Granted, it's a great community here - great friendships have formed, even a few weddings and babies born, lots of online relationships and 3D meetings have taken place, many parties. It's a very social atmosphere here which is actually quite ironic for a clusterhead. Most prefer to be left totally alone, although the therapy of meeting another genuine clusterhead is unmatched. Another double-edged sword I guess.
But why people are so intent on immediately accepting a total stranger into the "cluster" diagnosis just because they show up with head pain...well, that's a part I will never understand.
Absolutely no offense to the original poster of this thread - please understand that. I still don't think you have clusters but I do respect your pain and urge you to get an accurate diagnosis.
Stepping down off my soapbox now, running and ducking...
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| « Last Edit: Aug 8th, 2006, 5:10pm by Margi » |
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serendipity
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Re: Clusters?
« Reply #18 on: Aug 8th, 2006, 5:17pm » |
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You misunderstood me. I said it's absolutely untrue that no one can lie down with a cluster headache, I didn't say that everyone CAN lie down.
Either way, it's irrelevant. I just think it's very important not to make blanket statements like that, because everyone is so different. Some people may be able to lie down, others can't. Hank is brand new to this. It might be best to present him with all the options instead of one person's version of how things should be.
Also, have you read the "Describe Your Cluster Headaches" thread? What's interesting to me when I read everyone's responses is how so many of the elements of each person's pain seem to be identical, but at the same time there are also many, many differences (triggers, duration, behavior during a CH, etc.).
The minute someone says, "no one" or "everyone," all sorts of alarms start going off in my head. I mean no offense. I'm a fairly new poster, although I've lurked here for years, but I'm not new to cluster headaches and although my experiences may be different, they're still valid and (hopefully) sharing them will be helpful to someone.
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| « Last Edit: Aug 8th, 2006, 5:26pm by serendipity » |
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Jonny
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Re: Clusters?
« Reply #19 on: Aug 8th, 2006, 5:25pm » |
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Fantastic post, Margi!!!!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Linda_Howell
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Re: Clusters?
« Reply #20 on: Aug 8th, 2006, 5:25pm » |
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Quote:| There ain't a person alive who can sleep with a cluster headache! |
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Who'd-a-thunk that I could not be in more agreement with BobP on this one.
IT IS THE ONE MOST SINGULAR THING WE HAVE IN COMMON HERE.
I do not believe for one second that pain tolerance has anything whatsoever to do with this.
Every one of us has a pain tolerance that would shock a Sumo wrestler, Mohammad Ali, commercial fisherman, a woman giving birth to triplets, pr a Canadian Hockey player.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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serendipity
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Re: Clusters?
« Reply #21 on: Aug 8th, 2006, 5:27pm » |
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Quote:| There ain't a person alive who can sleep with a cluster headache! |
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Now there's a statement I think everyone can agree on!
Linda, you may be right about the pain tolerance thing. It's just the only explanation I've ever been able to come up with as to why some people react differently to the pain.
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| « Last Edit: Aug 8th, 2006, 5:29pm by serendipity » |
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Margi
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Re: Clusters?
« Reply #22 on: Aug 8th, 2006, 5:29pm » |
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on Aug 8th, 2006, 5:17pm, serendipity wrote:. I said it's absolutely untrue that no one can lie down with a cluster headache, I didn't say that everyone CAN lie down.
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Sorry. I majored in English and that double negative still kinda throws me I guess. My bad interpretive skills then.
I still stand by my belief that the clusterhead profile IS very well-defined and quite exclusive to all other h/a diagnoses. I know a lot of people disagree with this but that's ok. The only reason I speak up at all about this is the fact that people are being prescribed meds that could be lethal to them if they don't have clusters. We have vasodilators, vasoconstrictors, blood pressure reducers, mood enhancers/stabilizers, a whole sh'bang of potentially lethal stuff if the patient is diagnosed incorrectly or there is underlying disease of another nature. If you don't have cluster, why would you want to take any of this stuff? THAT's why I get on my soapbox from time to time.
Edited to add: no, I haven't read that other thread. For reasons cited above I guess - that I get pretty discouraged to see all the misdiagnosed folks here.
p.s. to Jonny - well THANK you! 
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| « Last Edit: Aug 8th, 2006, 5:32pm by Margi » |
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Jonny
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Re: Clusters?
« Reply #23 on: Aug 8th, 2006, 5:31pm » |
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I started chronic CH when I was 12, ill be 44 next month....I have never once been able to lay down when under attack....Ever.
Maybe Im just a pu-ssy....LMAO 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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kcopelin
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good grief
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Re: Clusters?
« Reply #24 on: Aug 8th, 2006, 5:35pm » |
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So my first clusterheadache? I swear I flew out of bed screaming-thought my husband had hacked my face with a blazing hot hatchet. That was 25 years ago. I can attest that, for me, to sleep during a cluster is an impossibility.
So I must agree with Margi, Linda and BobP here-sleeping it off, or lying down, or sleeping while being hit seem to point towards a different diagnosis.
IMHO (which in my universe is correct)
kathy
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