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Spike_Inmyeye
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Symptoms without Pain
« on: Oct 14th, 2005, 12:37am » |
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I have had CH for 30 years. The only help was oxygen and lithium. About 6 years ago the headaches stopped but I would occasionally get the symptoms but no pain. In the last few months I have had every symptom of CH, every damn one, but no pain. OK, OK, what am I complaining about? Well, I don't know what is going on and I am getting a bit worried. Has anyone else experienced all the symptoms without any pain. The symptoms are running eye, nose, red puffy and numb left side of face, sweating, big time agitation, moodiness, etc. Thanks for your response.
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BobG
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Re: Symptoms without Pain
« Reply #1 on: Oct 14th, 2005, 1:07am » |
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Hey Spike_Inyoureye
Welcome to the site. Sorry to hear you're getting the symptoms but glad it is painless.
What you are referring to is not unheard of. It's called phantom clusters.
Just a couple of weeks ago there was a discussion here on that subject. I can't remember the title of the thread. Hell, I can't remember what I had for lunch today. Maybe someone else with a better memory will read this and be able to direct you to that thread.
Stick around and let us know more about your condition, how you're doing. The more info we get the better for all of us.
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AussieBrian
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Re: Symptoms without Pain
« Reply #2 on: Oct 14th, 2005, 2:59am » |
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G'day Spike, and relax. Those of us who get phantom CH know exactly what you're talking about. Those who don't get it think we're mad.
Just decide what level of insanity you're comfortable with and welcome home.
Brian Down Under.
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LeLimey
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Re: Symptoms without Pain
« Reply #3 on: Oct 14th, 2005, 3:37am » |
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I know what you mean too.. I've never had one myself but my four year old son is a ch'er too and he is currently having them at 2:30 pm almost daily. They aren't bothering him much, I don't know if he is in discomfort but he isn't in outright pain. He keeps grinding his fist into his eye but thats as far as it goes. They tend to last for about an hour for him and then ease off and if thats as bad as its going to get then fantastic but I live in fear that these are the forerunner of something else  So far its been hapening since the 16th of August.
I can only suggest you see your doctor to be sure it isn't something else.. and keep some o2 handy just to be on the safe side.
Good luck, let us know how you get on okay? This is a much debated topic here!
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Helen
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nani
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Re: Symptoms without Pain
« Reply #4 on: Oct 14th, 2005, 7:43am » |
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Hi Spike. I get them. Some call them phantom, others call them silent attacks, some say it's not an attack if it doesn't hurt. I know that I prefer them to "regular" attacks. I'm with LeLimey, though...get some O2, just in case they're a warning.
Welcome and pain free wishes, nani
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Margi
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Re: Symptoms without Pain
« Reply #5 on: Oct 14th, 2005, 8:51am » |
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My husband seems to be back into silent attack mode too now. Every day at 4:30, just like Lelimey describes here of her little boy. He doesn't get all the symptoms you do, though, just the cluster eye (pupil dilation/constriction) and I've seen him rubbing that eye when it happens. It goes away after about 45 minutes to an hour but the pain never blooms.
Still might be a good idea to touch base with your doc though - especially for the numbness and agitation. That's kinda scary and not often reported with the phantom/silent attacks.
Interesting that you mention you're a lithium clusterhead. This has actually only started for my husband since he tried the lithium. This last cycle, he did the pulsing method and the first four months of his cycle were "gentle" because of it. Then, the buggar switched sides on him and he had a horrific next five months. Longest cycle ever for him. The cycle previous to that (1.5 or 2 years prior), he added in lithium near the end of a 6 month cycle. And that's when the silent attacks started - and have stayed with him ever since. Guess he's a "silent chronic" now? I dunno. Wonder if lithium has something to do with this? Hmmm...
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MJ
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Re: Symptoms without Pain
« Reply #6 on: Oct 14th, 2005, 9:41am » |
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Often I experience the same symptons out of cycle as you describe.
Except For the red and puffy, my face goes pale and white, numb and clammy feeling around the whole side of face, lasts shorter than a typical cluster.
Used to think it was something I ate cause often happens after a meal. Never really nailed it down as to why. Only know that it,s been going on as long as I have had clusters.
If I counted these silent attacks as real clusters then I would be chronic for 30 years and for this I am in denial.
No meds in years so lithium not an issue here.
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MJ
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Spike_Inmyeye
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Re: Symptoms without Pain
« Reply #7 on: Oct 14th, 2005, 10:54am » |
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Thank all of you for your responses. Misery loves company. It is real hard to find a doctor who knows what they are talking about. When I first started with the headaches (1974) I was told that they were stress-induced (I think that was putting the cart before the horse) and/or histamine headaches (horton's syndrome) and that I needed allergy shots. I took those freakin' shots for 10 years until I met an 80 year old neurologist at a cocktail party who diagnosed the headaches in two minutes. He told me that taking the allergy shots during the cluster period actually induced the headaches. Freakin' allergist. He then introduced me to Saint Oxygen who has been a loyal and forgiving friend for a long time. I must have spent $6K for those freakin' shots. Every other week. Not that I am bitter. No, I am not bitter. Not at all . . . . Freakin' allergist. Felt like a God Damn pin cushion. No, I am not bitter.
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AussieBrian
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Re: Symptoms without Pain
« Reply #8 on: Oct 14th, 2005, 11:15am » |
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Glad you're not bitter, and welcome to the cluster-go-round. You buys your ticket and takes your ride.
Some people get bitter about this.
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Sean_C
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Re: Symptoms without Pain
« Reply #9 on: Oct 14th, 2005, 11:40am » |
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There's been threads about this before, and after long discussions with my collegues I too get the "phantom" symptoms. I had a hard time differentiating between a "shadow" and a "phantom" cluster but I'm on the same page now 
Be happy Spike, most all of us feel the pain
Sean..............................
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unsolved1
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Re: Symptoms without Pain
« Reply #10 on: Oct 14th, 2005, 11:53am » |
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I've never had symptoms without (severe) pain. I guess I'm one of the lucky ones, huh?
UNsolved
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Sandy_C
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Re: Symptoms without Pain
« Reply #11 on: Oct 14th, 2005, 1:00pm » |
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I'm episodic, and never had CH symptoms unless I was in cycle, until this year. I'm totally PF now, but my right eye will still start watering and droop, with right nostril running like a faucet - not one twinge of pain. It's really strange, but better than the "usual", if you know what I mean. I usually get the drooping and tearing when I'm tired, had a really long day at work, or totally stressed
Sandy
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BarbaraD
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Re: Symptoms without Pain
« Reply #12 on: Oct 14th, 2005, 2:13pm » |
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I seem to get the phanthom attacks when I'm under a lot of stress. Since 97, I've been doing that. Then the big one hits and we're off to the races again. I prefer the NO PAIN ones, but somehow I don't always get my druthers.
Hugs BD
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Chillrmn1
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Re: Symptoms without Pain
« Reply #13 on: Oct 14th, 2005, 5:45pm » |
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I'm episodic for 28 years and have only experienced 1 phantom, 5 days after dosing with LSA.
I'll take the phantoms anytime over full blown attacks.
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Barry_T_Coles
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Re: Symptoms without Pain
« Reply #14 on: Oct 14th, 2005, 11:41pm » |
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Hi Spike_Inmyeye
Phantoms, Shadows, Echos What ever.
Going through these myself and not sure what to call them.
The previous time I got hit I only had the 8-10 week cycle, but this time around the big hits finnished around February but have had this phantom/shadow just about 24 7 ever since with the odd day or 2 off for good behaviour.
There is another post on this page titled Shadow language take a look there it may help
Kind Regards
Barry
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kimmeesue
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Re: Symptoms without Pain
« Reply #15 on: Oct 24th, 2005, 3:43pm » |
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I had read the original thread and had no idea or personal experience.
However, not one to be left in the dark I guess I had to join the club. The past two nights I have had my eye drip and my nose do it's usual thing at exactly the time I can usually expect a hit. But not even the pressure of a shadow. No discomfort whatsoever.
Weird, but sure beats the real thing.
I wonder, after thinking about it, if I had experienced this before and didn't ever make the connection until I read this thread>
Kim
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| « Last Edit: Oct 25th, 2005, 2:59pm by kimmeesue » |
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Spike_Inmyeye
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Re: Symptoms without Pain
« Reply #16 on: Oct 24th, 2005, 5:50pm » |
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Thanks for all the replies. I am going to tell that neurologist to go pound sand. I have had the "symptoms" so bad I got my o2 out. Worked like a champ and they went away. Hard to say they aren't related to a CH when that happens. I must agree I would rather have the symptoms then the actual HA. Kind of fun when I can show my friends how I sweat and leak on just one side of my face. I tell them the implant is failing . . .
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BobG
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Re: Symptoms without Pain
« Reply #17 on: Oct 25th, 2005, 2:04pm » |
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on Oct 24th, 2005, 5:50pm, Spike_Inmyeye wrote:| I tell them the implant is failing . . . |
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LMAO!
That would be a good time to work on their sympathy and ask them for money.
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Spike_Inmyeye
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Re: Symptoms without Pain
« Reply #18 on: Oct 27th, 2005, 3:39pm » |
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Well, since the symptoms, or the portent headache, seems to go away with more lithium ("aye captain, we need more dilithium crystals . . ." and it can be remediated with O2, I think it is just a very low grade CH. Which makes me think that lithium is truly a wonder salt as it can reduce the intensity and frequency of a CH. But, as I have said in other posts, the taser and a good clubbing also help.
Anybody try Lamictal or other anti-seizure meds?
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| « Last Edit: Oct 27th, 2005, 4:55pm by Spike_Inmyeye » |
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BlueMeanie
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Re: Symptoms without Pain
« Reply #19 on: Oct 27th, 2005, 4:46pm » |
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Welcome to Clusterville Spike
I'm like Unsolved, never had a silent CH. Mine are noisier than hell. 
Hope they go away, and if anything, hope those silent hits at least stay silent.
Take care, see ya around the board.
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JoeKen
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Re: Symptoms without Pain
« Reply #20 on: Oct 28th, 2005, 4:40am » |
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I was diagnosed with CH a few years ago - prior to that I had never heard of CH and so had also never heard of 'silent' attacks. Looking back now I realise that for a few years before I started getting the HAs that finally got me in front of the Neuro I had been having 'silent' attacks and not understood what they were. My 'silent' attacks were often accompanied by a short sneezing fit, during which I would sneeze about 8 or 10 times at 10 to 20 second intervals, always whilst my nose was streaming.
These 'silent' attacks one day developed into a full blown classic Kip 9 CH which lasted 1 to 2 hours. It came on very suddenly and departed just as quick, and this pattern continued for 2 or 3 months. Fortunately the severity of the attacks got less and less and eventually faded all together, only to start up again 4 or 5 months later, but only very rarely hitting Kip 9. Enter the Neuro, followed quickly by Sumatriptan tablets, and eventually oxygen, and life is now more bearable during the on-cycle periods.
I would endorse what others have said here, namely try to get a supply of oxygen and a means of delivering it at around 10 litres per minute, for when and if the beast strikes 'noisily'. Meanwhile let's hope that any attacks continue to be 'silent, but preferably don't happen at all.
JoeKen.
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Not sure I should be here, but it's as near as I'm going to get to finding out what is the correct name for my condition. Usually KIP 5 or below but last up to 16 hours and always one-sided, behind the eye, usually right but ocassionally left.
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