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precipitate
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CH with only mild CAS?
« on: Mar 26th, 2008, 2:14pm » |
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Hello Everyone,
I've been suffering with what seems to be CH's for almost three years now, during which I've frequented this site because of how comforting it is to read experiences so similar to mine (I'm sure you all know how lonely it feels at times). However it seems there is something about my attacks that sets me apart from most of what I read, and I was wondering if anyone else is similar.
All of my symptoms add up perfectly to a typical CH sufferer, except I don't seem to get Horner's Syndrome, or at least not to the extent I've read about. Any Cranial Autonomic Symptoms are mild when they show up, such as:
-My right nostril (the side of the attacks) almost always feels stuffy. When having an attack I often have a really strong urge to blow my nose, which sometimes releases drainage, other times not.
-Right eye gets a little red and glossy, but no drooping eyelid or excessive tearing.
-And, sometimes the attacks make me feel like I'm sweating a little bit.
As for the nature of the pain, it goes from a 5 to about an 8 on the kipp scale (sometimes 9). Feels like someone shoving a poker through my eye to the back of my skull. I pace, pull my hair, can't lie down, smack my head, etc.
But you know what? I've seen videos of CHers thrashing around, screaming, being held down, and I don't think mine ever go all the way there.
So all in all, is it possible to suffer from CH with still dreadful, but abbreviated symptoms? (specifically autonomic responses).
Thanks so much for reading.
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Mybelle
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Re: CH with only mild CAS?
« Reply #1 on: Mar 26th, 2008, 2:27pm » |
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My husband seems to have the same symptoms...no drooping eye but certainly tearing and the nostril on that side does drip - thankfully no more than an 8 on the scale but that is still pretty bad - also gets many shadows and the scary thing about that is you don't know if it's a precursor or just there......hang in.....we're trying to!!! 
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E-Double
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Re: CH with only mild CAS?
« Reply #2 on: Mar 26th, 2008, 2:33pm » |
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I rock, moan and pace.
I do not bang or thrash too much.
Agitated yes, violent no.
Have I in the past, absolutely but for most part no.
Not everyone gets horner's syndrome.
I myself have only presented with it about a dozen times out of thousands of attacks
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I can't believe that I have to bang my
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Redd
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Re: CH with only mild CAS?
« Reply #3 on: Mar 26th, 2008, 2:34pm » |
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I can only state how it is for me.
1) Left eye will tear and get glassy, does not droop, but gets puffy and if it's been a realy bad few days will swell really bad and stay that way for a week.
2) I'm not a sweater, but the temperature on the left back side of my neck will spike quite high.
3) nostril seldom runs, but feels as though a giant red hot knitting needle has been shoved up there, and another into my ear and they cross through the eyeball.
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precipitate
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Re: CH with only mild CAS?
« Reply #4 on: Mar 26th, 2008, 2:35pm » |
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 Thanks for your reply!. I don't think my eye has ever actually teared, and I don't think my nose has run on its own either; I have to blow it before I might get any discharge.
Sometimes I wonder if I really do have CH at all, every now and then I hear people say there are similar disorders but I can never find any info about them.
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E-Double
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Re: CH with only mild CAS?
« Reply #5 on: Mar 26th, 2008, 2:53pm » |
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what is the frequency and duration of your attacks?
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Guiseppi
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Re: CH with only mild CAS?
« Reply #6 on: Mar 26th, 2008, 2:55pm » |
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I get the droopy eye before it starts, but am not really a "sweater". I do get the runny nose and the teary eye. I don't thrash either, I do the curl the arms around my head and "bicycle kick" as my wife calls it. It seems no 2 people have identical symptoms, one more aspect of the beast to frustrate us!
Guiseppi
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precipitate
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Re: CH with only mild CAS?
« Reply #7 on: Mar 26th, 2008, 3:08pm » |
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Frequency: My headaches go in cycles (what I would appropriately call clusters) of uncanny consistency. 4 or 5 months of pain free time, and cluster periods that last from 3 weeks to about 2 months.
Duration: The duration of the attacks are from 15 (if i'm lucky), to 30 minutes. Sometimes they last up to an hour, with some shadowy pain lingering afterwards that leaves me wondering if another one is on its way.
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E-Double
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Re: CH with only mild CAS?
« Reply #8 on: Mar 26th, 2008, 3:15pm » |
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CH can be as little as 15 and as long as an hour though there are rports of longer much longer....
THere is :
Paroxysmal hemicrania which is a similar disorder
attacks last upwards of 20 minutes and occur much more frequent compared to CH.
It is also responsive to indomethacin which CH tends not to be.
How often do your attacks come per day/week when in cycle?
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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precipitate
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Re: CH with only mild CAS?
« Reply #9 on: Mar 26th, 2008, 3:28pm » |
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I've never had more than two attacks in a day; 85% of the time it's only one attack. When in a cycle, the attacks seem to come daily but sometimes it's every other day or some combination of that.
This cycle that I'm on now started almost EXACTLY when spring break from college began; my sleep schedule changed, and i was more relaxed (not to mention the vernal equinox was on its way) and lucky me I began a new cycle after having been free from late December thru February.
Thanks for keeping up with me about this, i really appreciate it.
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E-Double
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Re: CH with only mild CAS?
« Reply #10 on: Mar 26th, 2008, 5:45pm » |
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sounds like clusters
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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mudplugga
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Re: CH with only mild CAS?
« Reply #11 on: Mar 26th, 2008, 7:42pm » |
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on Mar 26th, 2008, 2:55pm, Guiseppi wrote:I get the droopy eye before it starts, but am not really a "sweater". I do get the runny nose and the teary eye. I don't thrash either, I do the curl the arms around my head and "bicycle kick" as my wife calls it. It seems no 2 people have identical symptoms, one more aspect of the beast to frustrate us!
Guiseppi |
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That's me too. 
I try and force myself to remain perfectly motionless, and concentrate on my breathing and the O2.
But the pain has its way and the ice picks make me jump and twitch, especially my legs.
It's a primitive form of trance/ pain control I suppose, something I'd like to be able to do properly.
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Mybelle
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Re: CH with only mild CAS?
« Reply #12 on: Mar 26th, 2008, 8:42pm » |
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my husband's nose runs and his eye gets puffy a little......but he seems to have those heavyshadows all day long...what a pain in the ass = I bought him some Taurine pills to take in the morning with his regular vitamins - so he doesn't have to drink all those energy drinks and spend that money!
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George_J
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Re: CH with only mild CAS?
« Reply #13 on: Mar 26th, 2008, 8:56pm » |
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I'm very drippy, and I sweat like mad. Horner's syndrome is not extremely pronounced, although I seem to have developed a permanent small droop on the left side.
I'm not really a "thrasher" these days, but that's mostly because I've learned to deliberately suppress it whenever possible--thrashing and head-banging don't help, and freaking out makes everything seem so much worse. I've done my share of it, though. I still pace and make noise sometimes during an "8 " or above--mostly pleading and whining. Dignified, it ain't--but I hate to have anyone see me when I'm fighting, so I mostly don't scream anymore during the midnight horrors. Gets everyone upset.
So no--I'd say that you're not much different than some of the rest of us. People handle pain in different ways--but it's still the same pain.
Best wishes,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
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Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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DennisM1045
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Re: CH with only mild CAS?
« Reply #14 on: Mar 26th, 2008, 9:20pm » |
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You just listed my symptoms for most of the last 12 years. Stuffy nose that runs sometimes. My eye has no droop but is watery and red.
Every year they got worse. Thank God I got diagnosed and found this site last year. I no longer let an attack get too bad before I'm fighting back and winning.
-Dennis-
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MR_JESTER
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Re: CH with only mild CAS?
« Reply #15 on: Mar 26th, 2008, 11:01pm » |
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Hi,
I have been a Ch'er since 1986 and my symptoms almost mirror yours exactly. My right eye tears and my right nostril gets extremely stuffy, but no ptosis
(droopy eyelid). I moan and rock, but I do not thrash and scream. Sometimes after a KIPP 8 or 9, my "hair" will actually hurt for days. Try explaining that to your wife.
I liken the pain I feel to someone poking a red-hot fork in my eye and then "tweaking" it up and down.
You may feel lonely, but you are not alone.
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Trooper
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Re: CH with only mild CAS?
« Reply #16 on: Mar 26th, 2008, 11:33pm » |
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I used to get the droopy eye but then it went away for several years. It has come back this cycle and sometimes starts to droop before the ha even hits. 
Seems like every couple of cycles something about my headaches will change.
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superhawk2300
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Re: CH with only mild CAS?
« Reply #17 on: Mar 27th, 2008, 6:36am » |
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I don't get "the eye" either but my friend does. Wide variation with the eye it seems, but sounds like clusters to me too.
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KaiB
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Re: CH with only mild CAS?
« Reply #18 on: Mar 27th, 2008, 12:19pm » |
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Yep, describes me perfectly.
I'll add the dental pain though.
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precipitate
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Re: CH with only mild CAS?
« Reply #19 on: Mar 27th, 2008, 1:15pm » |
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Thanks everyone for your input. Two hours from now I'm going to see a neurologist for the first time in 2.5 years since this all started and I'm extremely nervous.
To be honest, and I hope this doesn't sound insulting, I'm actually HOPING he tells me that it's clusters. The reason I'm saying that is because I'm terrified I have a brain tumor. Seven months after these headaches started I had a CAT scan w/o contrast that I insisted I have, because all the doctors I saw were like, "no no, you don't have a brain tumor but if it makes you feel better I'll order you a CAT scan"
So I had the scan which checked out normal but I'm still paranoid that they "missed" something. Then again I suppose If I had a brain tumor causing this kind of incredible pain I would have had other neurological problems first, which I don't (since pain is usually the last symptom of a brain tumor).
What made me more paranoid has been the fact that I don't really get much of the autonomic problems associated with most people's clusters; sometimes not any at all, just pain. But based on the responses I've seen to this thread, everyone is indeed different.
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KaiB
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Re: CH with only mild CAS?
« Reply #20 on: Mar 27th, 2008, 2:46pm » |
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I have often wished for something else...at least a good Doc has a chance to get rid of it. You now have this group and the knowledge behind it, as well as your own knowledge that this will all go away in a while.
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DennisM1045
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Re: CH with only mild CAS?
« Reply #21 on: Mar 27th, 2008, 8:57pm » |
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on Mar 27th, 2008, 1:15pm, precipitate wrote:| To be honest, and I hope this doesn't sound insulting, I'm actually HOPING he tells me that it's clusters. |
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You are right on the money with that comment. There are loads of worse things out there than clusters. CH itself isn't fatal.
I hope the visit with your Neuro went well.
-Dennis-
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