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Shadows (Read 2090 times)
steph45
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Shadows
Dec 20th, 2009 at 4:23pm
 
My question - last fw days again shadows (i am nw getting used 2calling em) but since this morning i hav bee havin pains just in my eye, like a headache - since 7pm its been constant, going slightly then bac again pain getin more intense - nw its 3/4
But i hav no other symptoms - no snotty/bungd up nose this time  - just a bad headache pain inside my eye & to my cheek bone - piercing pain.
I have only been diagnosed since beginin nov this yr - though hav had for a long time, misdiagnosed blah blah blah, its taking abit getting used 2not thinkin of it as a infection.
Is it normal with ch just 2hav shadows pain with out the other symptoms that i wud usally get.
I have been readin wat others have written about their shadows..Please excuse spellin its dif 2write wen its kip  Smiley3/4.
Can any of u please tell me about your shadows - r they always the same?
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« Last Edit: Dec 20th, 2009 at 4:30pm by steph45 »  
 
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Mac_Muz
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Re: Shadows
Reply #1 - Dec 20th, 2009 at 4:47pm
 
Shadows can be different, and because you get a shadow, it doesn't mean you have to get a full blown CH either.

Some shadows can linger all day and you might not get a CH.

If you drink 1/2 a beer as you near your season, that may cause a hard shadow and if you stop drinking that beer, you might escape the CH.

I had a shadow last night that didn't develop into a CH, but I thought it might.

I seem to dry out when nearing the end of my season, and so no runny nostril on just the right and no weeping right eye either now.

At the beginning back in early Oct I used rolls of paper towels in a few days.

Seems to me you are typing at kip 5/6.

Are you getting familiar with the side bar menu?

I can type pretty well at up to kip 4. Much past that and my typing gets like yours, only worse since I can't type.

Read up on o2, and get it... Probably you will get most of your life back.
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« Last Edit: Dec 20th, 2009 at 4:50pm by Mac_Muz »  

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Bob Johnson
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Re: Shadows
Reply #2 - Dec 20th, 2009 at 8:45pm
 
Some people have a similar set of syptoms before the onset of a cluster cycle. They have not been serious investigated and I've never seen any real explanation of the meaning of the experience.

I regard "shadows" as the same kind of experience just coming at the other end of a cycle. Sort of like a sore, crampy muscle after too much exercise.

Not to be worried, I'd say....
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steph45
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Re: Shadows
Reply #3 - Dec 21st, 2009 at 1:55am
 
Hi Bob & Mac  Smiley thanks for answering...its 6.55am here & i'm up getting having my breakfast b4 i get ready 4work (i work at a GP medical practice) lol. I had 2get up last nite about 3am because the headache got worse in my eye but managed to get back 2bed & eventually drop back off 2sleep. This morning though the pain still there - like a muscle ache (as bob said above) but have the snottiness coming & going but bearable so far,will go about my day as usual & hope it taper's off.
I cant see the menu bar on the left like you mentioned? Is there a way of getting it to show on my laptop by changing the settings or something, thanks - steph  Roll Eyes
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« Last Edit: Dec 21st, 2009 at 2:17am by steph45 »  
 
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Chad
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Re: Shadows
Reply #4 - Dec 21st, 2009 at 6:40am
 
Shadows to me are a pain in the a$$.  They are like a low Kip CH, but manageable.  I can get them after a full blown hit and it will linger all day long or I may get one before a CH which is short because it's your warning that the beast is coming.  Time to abort.  I've gotten shadow HA a week before a cycle even started.  It use to be tricky because I thought that it was sinus HA's for many years, but now it's a warning that a cycle is coming.  Shadows just suck to put it lightly.
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steph45
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Re: Shadows
Reply #5 - Dec 21st, 2009 at 12:43pm
 
Thanks Chad - do u mind explaining how ur shadows r 4u - ur symptoms - if u dont mind. It helps me by knowing that the symptoms i get are similar 2others and it is "the norm" i know from reading other messages on here that it does vary so much  from person to person & even then it can change.

I am just learning 2accept all of this - and gettin used 2calling it and its symptoms by other names...

I am still waiting to try o2 - its very soul rendering not 2get the help 4the pain when its bad - i have been given the  Imigran tablets to try by prof jones at my local hospital (nov 5th) and told to come back this Thursday but they dont work as i guess u wud knw.I did try my own GP but he dismissed the pain and told me i had 2wait and c the proff and let him decide wat i was 2hav next.

I have prev been a seasonal suffer but this year its been every month which has led me at long last 2a correct diagnosis - over the yrs i have seen a eye specialist/teeth took out blah blah - i say blah blah blah becuz it just goes on and on. I thought back in nov that now its been diag corr that it wudb easy frm this point 2get the correct help but wat a load of bollocks.

But i wont give up, i cant.I just want it diagnosed officially and put onto my medical records - to get some o2 2try. And fingers crossed that will help as it seems 2help so many others. I have read up on all the medications an am very wary of trying bcuz of the poss side effects - whereas the o2 does not seem 2hav any.

That 4me wud b my ideal outcome lol but i will hav 2wait and c....i will try the meds if the o2 doesnt wrk....wen i eventually get as far as that, i will hav2 wait4 "the 1's with power" prescribing the correct things that actually will help.
This thursday will tell wen i'v been 4my appointment back at hospital - god knws wat i will feel like if i still get no where.

I am lucky bcuz i do work and i enjoy a full life with my family/partner - i love sports and do yoga ect, all 2help me keep well in mind/body and spirit (though that side is strugglin abit) i always count my blessing everyday - i knw how lucky i am  - but this "thing" can bring me2 my knees, though i dont show or tell no one ....just on here i allow myself a moment of weakness, 2feel alittle sorrow 4myself LOL  LOL LOL.

24yrs its took 2ger this far and by no means thanks 2the dr's, its been many paths 2go dwn and some of them hav been wrong.

I had NEVER heard of CH till nov 5th 2009 when the proff sent home telling me i had Cluster Headaches ( i was gutted 2b told i had a headache - how can a headache b SUCH AGONY)  but as soon has i started researching it on the internet & found this forum and watched the utube videos of those brave souls who let themselves b filmed whilst havin attack - EVERYTHING jus fell in2place - i cried my eyes out..was relieved 2knw it wasnt just me, that this pain was agony, was real and that i wasnt a mardy bugr.

I go on abit dont i - sorry  Roll Eyes its just that i dont mention it 2any1 else so i have no one 2ask becuz they dont knw- dont believe and lets be honest, most dont care!!!

I have been having shadows all day comin and going lasting for over 10/15 mins and has built up2 bout 40 mins - pain 3/4 & 4/5 - just about cope able or bearable which ever way u want 2put it - i'v got red bull in the house now - but dont really know when i should take it?? I if took it wen i'm getting lesser painful shadows - wud that stop any coming at all?

Shadows can hang around for wks - would i b living on red bull and take it at the 1st signs of anything.

Do i take it now 0n 4/5 or wait till it gets worse - do i drink it quick in one go - do i have more than 1can? Dont knw, dont knw, dont knw  Grin  Grin  Grin

I am off 2 LA january 15th 2meet up with a penpal that i have known 4over 35yrs - i am so excited and looking 4ward 2going!!! It will b my 1st time travelling on my own. Will b staying for 16days and she is taking me to Las Vegas/Mexico/Yosemite National Park - wherever we get chance 2go in the short time i have there.

So though i knw i feel shi't now and that i prob hav started another cycle thing (the worst was oct beyond 10 that i will not think about - nov 1ended in kip 8/9) i am hoping this one (if it is 1) will be a lesser1 again (but i really dont knw wat 2expect with this "beast" as u all call it on here) i hav my fingers crossed that i will be PF whilst there.

I am going 2stock up on Melatonin whislt there as well - i buy mine frm Biova and its cost around £20 (with postage)for 240 3mg tablets & now i'v started takin 9mg every night i will soon go through them.
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« Last Edit: Dec 28th, 2009 at 4:35am by steph45 »  
 
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LeLimey
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Re: Shadows
Reply #6 - Dec 21st, 2009 at 2:15pm
 
Steph - explain to your neuro that you will be travelling and ask for frovatriptan as it's invaluable as a preventative.
You might want to ask for a prednisolone taper to prevent hits while you're away too.
Also if you use oxygen, give air products a call and ask them to arrange travel o2 for you where' you're going. (Air products being the local supplier where you are!)

Hope that helps!
Helen
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steph45
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Re: Shadows
Reply #7 - Dec 21st, 2009 at 2:30pm
 
Hi Helen, thanks 4the info - i have taken note and will ask prof jones when i see him this thur 9am QMC hospital. He has only prescribed the imigran tabs so far and obv they have no effect at all. Prof jones is otorhinologist NOt neurologist and i am waiting to be referred. Did ask my own gp but he will not untill this dr has finished treating me.....very frustrating. I have emailed/faxed and sent by post a 4page letter going through everything and am hoping that he will have read it betime i c him fri 4my 15 min app.
Can i ask you - wud it do any good 2take Taurine 1000mg as a supplement on a reg basis like i now 9mg melatonin every night , instead of the red bull? Thanks again, steph  Shocked
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Mac_Muz
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Re: Shadows
Reply #8 - Dec 21st, 2009 at 5:25pm
 
Steph, Your writting style is giving me a head ache.... Maybe you can add a few spaces between the lines to atleast help me out huh?

If you don't i will start tawkin like a Mountain Man from 1825  Grin

Thisn' heya Chil gits some shadoes, wicket fiercly C?

Oh, so you asked what shadows are and what they do, how folks think of them.

Well, the way I think of them is a warning pain before a full blown ch starts.

I don't record much of anything, know what day or week it is most of the time either. I live by the sun and the seasons.

So I don't know wghen a CH season will start. What happens that way, is being me I tend to drink 2 beers a day, and as I enter the season the first beer will give me a unmistakable shadow.

I give the rest of that beer to anyone else who wants it, and know I am done with beers for awhile. So that warning has a use.

In Ch season sometimes I just get mad.. I got a wicked Scottish Temper and I will take it out on me when I get that mad.

Other warning shadows can happen any time in a given day. This time the CH gas been a night thing. So I tend to wake up after mid night with a shadow. In a few minutes time the CH is ramping up hard, so I get dressed and to my o2 out in a barn pretty fast if i am not in any mood to suffer.

I can have an all day shadow, but I just consider that a pain in ass.. it is like a hangover, and so i don't really call it a shadow. There is easy pain to deal with, not that I like it any.

After days of Ch this lighter pain tends to hang around, and so far I haven't tried to stop it. Usually I get busy and forget it untill I am not busy, or a real shadow hits and I must get movin' to o2.

It is probably wise to do what  LeLimey says.

On the otherhand when I was crossing the USA, more or less the CK's skipped messing with me. I am not sure why, but felt like warmer places when I would normally be nearing winter in New Hampshire might have been a part of why.

My wife and I wanted to see the USA and places like Yellowstone, and so we did on a kawii Nomad motorcycle both ways.

I am not into drugs of any kind, and so all I will ever say on the topic for that is Get O2. Just get it!
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Rivkid73
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Re: Shadows
Reply #9 - Dec 21st, 2009 at 8:05pm
 
I hate the shadows worse than a full blown hit most of the time. I usually get muscle ache in my neck at the base of my skull like I was head banging too hard for too long. And then when the shadow is gone, the ache takes as long as any normal muscle ache to go away.
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steph45
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Re: Shadows
Reply #10 - Dec 22nd, 2009 at 3:48am
 
Thanks guys for replying to me  Roll Eyes

Well last nite wuz shit - real bad frm mid evening, having few mins of lesser pain but hittin 8/9 all nite - agony.

I tried red bull & strong coffee but no effect, took 15mg of melatonin - managed to go 2bed about 1am and eventually nodded off abit but bac dwn stairs at 3am. Been up all night, sat here till 7.15 b4 finally makin the decision not 2go in2 wrk 2dy. Really wonted2 but though its better and the pain has gone bac just 2my eye, varyin btween 2/3 & 5/6 -  i'm still bungd up/droopy eye & intense .....am exhausted.

So hav had 2ring in sick but wil b bac in2morrow, shud b alot betr by then - hopefully as the day goes on the intensity wil lesson & i will get some sleep.

Its the 1st day i'v had off wrk in nearly 3yrs - usually its shadows hat wrk - bearable - the worst usually comes at night - and at the wkends so somehow i can find strength 2make it in2 wrk.

Feel guilty though!!! But i wudnt b able 2do my job. I wrk in a GP's surgery, so even if i didnt deal with the general public 2dy, which obv is part of my job. But we move round stations every 2hrs & i also issue all prescriptions, inc CD's, medications updates/ammendments/heatlh chks/blds/summarising - deal with with D/N & social services/corners/pharmacies/referrals etc etc i cud go on but i think u get the drift lol. There is a very gd chance i  wud make a major blunder bcuz cant concentrate - so am sat here nw 8.38pm gettin this off my chest lol

Feel betr 3/4 - am gona go get dressd and potr bout - cant sit here all day doin nothin - so i guess the house will get a gd clean 2dy. Would like 2exercise a little if i can and go on my cross trainer latr, wil c how it goes.

My partner brought his medical grade o2 in last nite and wonted me 2try it (he is a diver and also trained 4med help with diver 4the bends etc/ also marine life rescuer) but it has the normal valve on it for 4/5 flow and eveerythigg i'v read on here said it  has 2b at least 15 flow rate so i wudnt try it - he got abit grump with me - said how do i knw if i dont try, which i suppose is true. He does hav a re-breather mask - i did try that on my face and i cant stand it, just too painful - i now know i will hav 2try the thing/mouth piece u put directly in2 ur mouth.

Hav took sum pictures at the tale end of the night & video 2show the Prof Dr Jones wen i go on thursday - i do feel embarrassed by seein myself like that but i am now desperate and if i go on thur and get no help i do not knw how i will cope - i HAV 2GET ACROSS TO HIM HOW BAD its been this year - i cant come away with out a script 4o2 or something that will help.

Well mardy arse will go & get some chores done now LOL  Cheesy
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Mac_Muz
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Re: Shadows
Reply #11 - Dec 22nd, 2009 at 6:53pm
 
Well, Steph first off i would go to work and play pirate and get on o2. And with that bottle, if you couldn't get straight 100% out of what ever regulator was on it, I would yank that mess off and breath right off the bottle valve.

If this happens again, turn the knob on at the bottle and turn it off a few times.. LEARN how that bottle works for flow.

When you finally get on with this progam and get out of your own way, the last bad pain you get will be kickin' yerself in the butt...

I would be willing to beat anyone who denided me o2 with a big bat.. That way I would consider the little damage i could do to still be less than equal to a hard kip 9/10.

get o2, get it now!  Ask this marine guy, about oxegen acetelene garage torches set up to gas weld and cut steel..

He has to know about the equiment. I can kill a CH if I move fast to get on it 10psi. Talking with Marc, I ramped the psi up to 45, which just flows out of the torch grip.

i wrap my hand around the cold brass, so I don't freeze to it. The tank is in a barn, and the temps here are close to 0 degrees F.

What was inside that bottle was the right stuff.. To me this is like refusing tea, because it's in a beer mug..

BTW I refuse to drink beer in a tea cup  Wink

I am sorry you hurt.. Get o2 get o2 Get o2.
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Re: Shadows
Reply #12 - Dec 28th, 2009 at 1:59am
 
Wow, i didnt know shadows cause such problems.

In a cycle i always get a shadow just before the beast attack. After the cycle is over i get shadows constantly for a month or two without the following beast.

For me its like someone lays a warm hand over my left cheek and eye. Often results in a twitching eyelid.
Sometimes causes a headache, but nothing some regular painkillers couldnt handle.

I hate the spikes more. They come without a warning hitting you like a lightning from the sky  Shocked
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