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CHfather

Odd(?) symptoms

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My daughter is in her cycle right now (3-4 weeks into it), and she experiencing some symptoms that I haven't heard/read about.  She's having stronger shadows than she's had in the past, and today the CH side of her face is very red and feels sunburned.  She also gets occasional "lightning-bolt" pain, lasting just a very brief time (less than a second)-- the kind of pain that I think of as being typical of trigeminal neuralgia.

She doesn't have oxygen (I know, believe me, I know!!) and she treats her CH attacks by blowing cool air from a fan onto her CH side, or using ice packs.  She says that it works really well for her . . . but I guess I'm wondering whether maybe she's somehow irritating the trigeminal nerve by doing that, and that's what her symptoms are about.

Anyone get those symptoms?  Any comments?

Thanks, as always.

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the CH side of her face is very red and feels sunburned....using ice packs

What a rare opportunity to offer ideas to CHf! :o I'm jumping on this one! :D

Apparently there is such a thing as a sunburn like ice pack burn, which is actually a bit of frostbite. Maximum 20 minutes is recommended for an ice pack. I found some discussion here:

"..ice pack 'burns'...they look like sunburns and feel warm to the touch still...HOURS later...and they are a deep red, like a sunburn and painful.."

http://answers.yahoo.com/question/index?qid=20080821195210AApVDyd

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Thanks, Jeebs!  That makes sense.  Hoping it's something like that.  Someone else suggested that maybe her face is chapped from being wet and then having cold/cool air blowing at it for an extended period. 

While it makes me nuts that she won't get or accept O2 (which she once had and which worked great for her), she started this cool-air thing after I suggested the air-conditioner trick that you often recommend to people in an O2 pinch.  She says it's surprising how much it helps her (ice pack burns, chapped face, or whatever aside, I guess).

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I get the occasional short burst of lightning bolt pain ..... but I know FOR A FACT that it is light induced.  I have a Horner's and basically wear polarized sunglasses 24 hours a day.  On some days I wear an eye patch over my right eye.  But there have been times that I have been caught off guard (wake up in middle of night to use bathroom, turn on light, get throttled).

Does she have a Horner's?  Showing any symptoms?

I'm not even gonna ask why she wouldn't go back on o2 .... I'm sure you have that one handled :)

Best wishes to the both of you.

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Thanks, b.g.  Nice to see your Tigers doing so well.   

As for her and O2:  I love her and admire her 100 percent, but still . . . .  :-[ :-[ >:( >:( :( :( :'( :'( :-/ :-/ :-[ :-[

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CHf, do some research on 'ice pick headaches'.  I get them. They are more frequent when I'm getting a lot of migraines, but I also experience them around clusters.

They are short, very short, 1-5 seconds usually. I describe them as a lightning bolt across the forehead, although the laymen's medical term is ice pick.

They are like BAMMMM!!! then gone.

http://headaches.about.com/od/otherheadpain/a/ice_picks.htm

MG

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my 2 cents on this: I have been using ice for more than 10 years to abort, and many people, MDs included, told me that I shouldn't do that, including the neuro I used to see  :P they don't know CH, really, and I don't care: ice is my best friend; it usually works pretty good (but not always). Ice packs are not cold enough for me, it's gotta be the thinest plastic pellicule possible over real ice. When the CH is lower than, say Kip 4, it's actually difficult to hold it against my neck and especially temple for it's too cold, so I leave it there 30 sec, one min. It becomes double pain, ice and CH, take it off, rub a little with my hand, then again ice... At Kip 5 and over, I don't feel the pain from the ice anymore, it's only relief (well somewhat), and the ice melts much faster. I have never experienced redness like sunburn, not that I remember anyways, but I noticed recently I can't hold it on my temple very long, even at Kip 5 and over, the cold is hard to take there, too sensible, but also my pain is mostly in the neck these past years.

As for the "lightning-bolt" pain, lasting just a very brief time (less than a second), I get those too. They come in the daytime usually, after a rough night, when I kind of float in a hazy world (sleep deprivation, persistent strong shadows)... it's like a sudden Kip 5 or 6 that lasts, yes, less than a second.

CHfather, I don't remember what are your daughter's reasons for not having o2, but I can relate to that. I never did much effort to get it myself. Having that bottle in the corner would be a constant reminder that I'm sick, and I feel it would depress me more than help me. Ice and coffee (really, strong coffee is amazing to abort) work probably as well from what I read as o2, and I don't feel like I'm hooked on a bottle... the ice bag hides in the freezer unnoticed ^^

I'm not sure about the air blowing though, especially if it's air conditionning, mixed with ice (wet face?) ... I don't know, sounds like a mix for catching a cold... is this air free of bacterias? mixed with a wet skin... I don't know. What kind of machine is it? is it old? I figure this is where the redness could come from, maybe.

As others here have reminded me a couple times, this beast changes its tactics over time. I get very little pain in the eye now, as opposed to most of the pain 30 years ago... so it wouldn't be surprising that she experiences changes in how the pain shows up. I see no reason for her to suddenly develop trigeminal neuralgia, do you?

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Interesting how different clusters are for different people.

For me, ice (or anything cold) is a trigger. Having a KFC Krushems will give me a cluster for sure! Far to cold.

But, if you want to make a REALLY cold ice pack, here's how.

Put a mixture of Water and Alcohol (e.g. Vodka) in a zip lock bag at a ratio of about 50/50 (maybe 60/40 in favour of the water), and freeze.

Well, attempt to freeze. The alcohol doesn't get cold enough to freeze, so the water turns to slush, slush that is colder than normal ice. And, because it's slush, it moulds to the contours of the body better than hard ice.

I usually double-bag mine with 2 zip-locks, making sure to get as much air out as possible.

MG

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CHfather, I don't remember what are your daughter's reasons for not having o2, but I can relate to that. I never did much effort to get it myself.  Having that bottle in the corner would be a constant reminder that I'm sick, and I feel it would depress me more than help me.
Appreciate your whole post, Purp. Thank you. About this specific thing I just want to say that for her, when she had it, O2 was a very quick, very effective abortive.  I've mentioned at this forum before that it was seeing that "miracle" happen -- seeing the look on her face as the pain melted away the first time she used O2 -- that made me want to be sure that everyone who should have oxygen gets it.  People who choose not to, of course that's up to them.  I don't believe, though, that any abortive, just in terms of practical effectiveness without side effects (setting aside any other aspects, such as the important "psychological" one you mention), is as effective as O2.   

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My reply is something that you can probably dismiss right away but I thought I'd share since this brought it to my mind. I know 3 people who have had paralysis in their face and at least 2 of them have had trigeminal symptoms either prior or during it. All of them related the cause in some way to "air breeze", 2 were passengers in a car with a window open and 3rd bicycling. I think all were fairly healthy and it was a surprise getting it. I think it is this in english: http://en.wikipedia.org/wiki/Bell%27s_palsy

I am not saying your daughter has it, I just thought that maybe some of the mechanisms might "ring a bell" or maybe it's not anything like this at all. We are complex beings, one of these cases is the man who services my car and though his paralysis healed, he always says he has not been well for 1 day since, that this "started it" and he avoids all kind of air breeze on his face anyway he can.

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Thanks very much, TO.  I've known people with Bell's palsy, but never really thought about it in this situation.  Another reason for her to get oxygen and stop messing around.

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My Husband gets the sharp short stab ,, I never knew what it was until my son started having his CH's and found SUNCT Syndrome. you might want to check that out. maybe she experiences both at  the same time ,, mabye (God willing) its changing for her and that she will only get these short bursts.   I know my son put ice on the nerve back behind his molars (inside his mouth) last attack and he said it helped.

as for the burn ,,, i get wind burns every time i ski ,, it looks just like sunburn ..   from cold air blowing over skin.  sun block doesnt help.. mabye she can try putting vasoline on her skin before blowing the cold air on it .. her skin is getting "chapped" from the air and ice.

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Hi, well I have them all- my Nero says I have Intractable headaches. Which means I get migraines, clusters and a host of self named pains. Ice burns me now and heat is my friend. 20yrs plus of insane torture has led me around the block with everything tried.. Im chronic and sometime ice works then most times its heat in the shower.

3 time switcher, first 10yrs right side starts in back of neck in the artery then in to right eye. 

2nd time after 10yrs starts in left side back molar then into the eye.

3rd time and current: Screaming RED HOT ARTERY Right side then SCREAMING HOT right eye. Feels like my eyeball is bleeding out into my brain.  Artery and eye can not be touched with a feather without even more pain. lasts 2hrs of the most insane evil torture. ICE HURTS IT worse, heat only..

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Had 3 episodes of Trigeminal Neuralgia on left temple, 2-3 years apart, that lasted 3 months. Never went to a doctor cause it was not so bad! Only after starting CCH 3yrs ago, on the right side, eye, molar and neck, I raelized it could have been ECH!

Now everything is changing again! An "ice pick" now and then, say twice a week, on the normal side,  but also 3 times CH on the other side!!!

Cold running tap water over my head during the day helps, but stress at work also helps!!

During the night O2 helps for first 2 but normally not for the 3rd one!!

Haven't busted lately, both licorice and mushrooms give me terrible oedema, but I think its time again!

Can't think why your daughter chose not to use O2, it is what keeps me alive!!!

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