Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        Cluster Headache Help and Support >> Cluster Headache Specific >> GATOR;MONITORS@LIGHT
        
(Message started by: Mr.YL on Mar 7th, 2006, 10:36pm)
Title: GATOR;MONITORS@LIGHT
Post by Mr.YL on Mar 7th, 2006, 10:36pm
:)Hay I have been in contact with a eye Dr. who may have found the research and prescription for the lens we seek to filter out those trigger rays.  Let me know at this post if you want more info a Gator and I have discussed this and I KNOW alot of us suffer from the light thing. Sincerely yours all CH suffers MR.YL
Title: Re: GATOR;MONITORS@LIGHT
Post by tessa_c2 on Mar 7th, 2006, 11:53pm
are you talking about the rose tinted glasses?
Title: Re: GATOR;MONITORS@LIGHT
Post by Mr.YL on Mar 8th, 2006, 10:21am
have not yet picked up the RX glasses yet though I will let you know..The Dr. did alot of research on the subject and our affliction. So the new technology may have just arrived.LETS ALL HOPE...
Title: Re: GATOR;MONITORS@LIGHT
Post by Guiseppi on Mar 8th, 2006, 11:24am
Ummm, do any clusters suffer from a light trigger? This is a new one on me. I suffer from alcohol triggers, sleep deprivation triggers, stress triggers, but I've never heard of a light trigger. Sunglasses to stop my clusters is an interesting angle.

Guiseppi
Title: Re: GATOR;MONITORS@LIGHT
Post by nani on Mar 8th, 2006, 11:25am
Light (into that eye) is a HUGE trigger for me. Even strobe like lights and shadows (like under a ceiling fan).  :-/  
Title: Re: GATOR;MONITORS@LIGHT
Post by Gator on Mar 8th, 2006, 12:02pm
Actually, quite a few people here have reported that they suffer from sensitivity to bright lights.  For me, more than 30 minutes in front of a television or computer screen will trigger an attack.  Bright light (more specifically glare from bright light) during the day or headlights while driving at night seem like lasers beaming straight through my right eye and will trigger a hit.

Here is an article from PubMed about photophobia and phonophobia in cluster headache:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9673803&dopt=Abstract

From the American Family Physician website:

http://www.aafp.org/afp/20050215/717.html


Quote:
The absence of aura, nausea, or vomiting has helped distinguish cluster from migraine headaches, but recent studies indicate that 14 percent of patients with cluster headache experience aura, 51 percent have a personal or family history of migraine, 56 percent report photophobia, 43 percent report phonophobia, and 23 percent report osmophobia.


(osmophobia is an intolerance of odors)

Another PubMed article that says photphobia SHOULD be recognized as part of the clinical spectrum of CH.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12876249&dopt=Abstract

There are lots more out there.
Title: Re: GATOR;MONITORS@LIGHT
Post by ArCane on Mar 8th, 2006, 12:56pm
Ive noticed if I look at a glare from the sun, like on my kitchen floor, it will trigger a CH.  I dont know if its directly from the light or because it just annoys me.  When Im annoyed I get stressed, and when Im stressed I get hit.  The last couple of cycles I have worn sunglasses from when I wake up till the sun sets.  Don't know if its a placebo effect or not but it helps a little.
Title: Re: GATOR;MONITORS@LIGHT
Post by Dragnlance on Mar 8th, 2006, 3:28pm

Quote:
Even strobe like lights and shadows (like under a ceiling fan).


Ditto for me, big time
Title: Re: GATOR;MONITORS@LIGHT
Post by Karla on Mar 8th, 2006, 7:14pm
Thanks for clarifying that I was really confused.  Lights don't effect my ch at all.  They do my migraines but not ch.  Sound is a factor I get real sensative to during ch.
Title: Re: GATOR;MONITORS@LIGHT
Post by MJ on Mar 8th, 2006, 8:52pm
Glaring lights, bright reflected lights or a sudden change in lighting types have allways been a huge trigger for me.

Not sure how a specific lens would correct that though.
Title: Re: GATOR;MONITORS@LIGHT
Post by AussieBrian on Mar 8th, 2006, 9:04pm
I've long relied on glasses in regard to CH, filled to the brim with beer.
Title: Re: GATOR;MONITORS@LIGHT
Post by BlueMeanie on Mar 8th, 2006, 11:21pm

on 03/08/06 at 11:24:09, Guiseppi wrote:
Ummm, do any clusters suffer from a light trigger?


When in cycle, I never go anywhere without Trex & Sunglasses.  Yes, light is a big trigger for me, along with aromas and alcohol.  8)

Sounds make no difference at all. In fact, I usually turn up the music during an attack so people in the house can't here me scream and moan.  ;)
Title: Re: GATOR;MONITORS@LIGHT
Post by ivanov on Mar 9th, 2006, 12:00am
I would appreciate any info you can send my way since I am trying to work this same problem out with my eye doctor.
Coincidentally my next appointment is this coming tuesday - to once again try to solve this problem along with a focus double vision thing.
I would really like to know what kind of filter your Dr. has discovered.

Dan
Title: Re: GATOR;MONITORS@LIGHT
Post by jackieg on Mar 10th, 2006, 10:05am
When I enter a store or building where there is a great deal of artificial light, I start to feel shadows.  Natural sunlight actually has a healing effect on me.  I never was sensitive to light during an attack until recently.  Now, when I am in the middle of O2 teatment, I have to be in complete darkness and no one can come near me.  
Title: Re: GATOR;MONITORS@LIGHT
Post by pattik on Mar 10th, 2006, 10:32am

on 03/08/06 at 21:04:21, AussieBrian wrote:
I've long relied on glasses in regard to CH, filled to the brim with beer.

[smiley=laugh.gif] [smiley=laugh.gif]
My glasses are filled with cabernet. ;;D  Light has only been a trigger for my migraines.  After 26  years of CH, the only triggers I have identified is time of year and time of day.
Title: Re: GATOR;MONITORS@LIGHT
Post by Mr.YL on Mar 23rd, 2006, 2:33pm
The RX is a ultraviolet coating with a dark brown tint going to a lighter brown on the bottom. From my understanding by using the brown  this enhences the red and yellow rays of the light spectrum while the UV filters the other light  in the spectrum as to lessen the intensity and strain on the eyes. I have yet to get them as I am having a slight problem finding the proper frames for a full wrap as to not let any of the rays come through the sides or top. I am confident that this may work as my Dr. did alot of research. I reccomend that you speak with your optomitrist regarding any RX for sight adjustment. My vision is near perfect. Hope this helps. Mr.YL
Title: Re: GATOR;MONITORS@LIGHT
Post by Bob P on Mar 23rd, 2006, 4:12pm

Quote:
the lens we seek to filter out those trigger rays.

Well now that explains all those middle of the night (during sleep) attacks that we get.  It's the light rays!
Title: Re: GATOR;MONITORS@LIGHT
Post by LadyElaine on Mar 23rd, 2006, 4:32pm
Light doesn't trigger my clusters but if I am outside and get hit the sun light seems to really bug me. Now when I am in cycle I do keep a black curtain in the bathroom to keep sun from coming in through the window.
Shut Up Bob :-)
Title: Re: GATOR;MONITORS@LIGHT
Post by sailpappy on Mar 23rd, 2006, 4:33pm
;;D Actually, Birght sun light causes me to sneeze repeatedly until my eye's adjust, and pulsating lights trigger my Clusters.  Lately they also trigger seizures!
                          Long Lost Pappy
Ms Elaine, I bought the home in South Augusta, Terri,The Grandkids and I will be moving up there on the 30th!  So  Howdy Neighbor!! ::) ::) [smiley=laugh.gif]
Title: Re: GATOR;MONITORS@LIGHT
Post by LadyElaine on Mar 23rd, 2006, 4:48pm
Pappy check your PM I don't want to hijack this persons thread!
Title: Re: GATOR;MONITORS@LIGHT
Post by Bob P on Mar 23rd, 2006, 6:39pm

Quote:
I don't want to hijack this persons thread!


Why the hell not!  The guy is saying sun glasses will stop your clusters.

Pappy - good to see ya.  Ya'all be careful livin' around that snake killin' babe - Elaine.
Title: Re: GATOR;MONITORS@LIGHT
Post by Jonny on Mar 23rd, 2006, 6:46pm

on 03/23/06 at 16:12:09, Bob P wrote:
Well now that explains all those middle of the night (during sleep) attacks that we get.  It's the light rays!


ROTFFLMMFAO!!!!! ;;D ;;D ;;D

"Its the light rays".....LMMFAO!!
Title: Re: GATOR;MONITORS@LIGHT
Post by LadyElaine on Mar 23rd, 2006, 7:03pm
Cause I am a nice person well except when I met a snake ! Then I am a killer ;-)
Title: Re: GATOR;MONITORS@LIGHT
Post by thenucman on Mar 23rd, 2006, 7:03pm
Just because you close your eyes, doesn't mean the photons go away. They keep going and going and going ....

As I have seen all over this forum ..YMMV ;) Good luck YL.
Title: Re: GATOR;MONITORS@LIGHT
Post by Gator on Mar 23rd, 2006, 7:08pm

on 03/23/06 at 18:39:30, Bob P wrote:
Why the hell not!  The guy is saying sun glasses will stop your clusters.

Pappy - good to see ya.  Ya'all be careful livin' around that snake killin' babe - Elaine.


No, what he's saying is that these glasses may help him deal with a particularly bothersome trigger he has.  And in case you hadn't noticed, several others here have said they had the same triggers, not to mention the research that says 56% of cluster headache sufferers report being photosensitive.  If light does not bother you you are in the MINORITY.

The sarcasm was not only misplaced, it was totally unnecessary.  Just because you don't trigger off of light doesn't mean no one else does.  Sheesh
Title: Re: GATOR;MONITORS@LIGHT
Post by Mr.YL on Mar 23rd, 2006, 7:27pm
Hay thanks Gator... We are talkin about triggers and I am just passing along some info that may help some of you... that is if you do your research...Sarcasm gets you no where except for spitein the spit you got with yourself...So chill we got it bad enough rather then spittin in an eye. We all have our ways to deal with the beast as you know alot is mentality on how we deal with it. So you do what you can and I will do what I can for OUR mutual cause. Take care of yourself and PF D@N to all. Mr.YL
Title: Re: GATOR;MONITORS@LIGHT
Post by Jonny on Mar 23rd, 2006, 8:20pm

on 03/23/06 at 19:08:02, Gator wrote:
not to mention the research that says 56% of cluster headache sufferers report being photosensitive.  If light does not bother you you are in the MINORITY.


Id like to see a link to that research study....got one?

I can kill a Kip 5 just by staring to the side of a light buld.....light is my friend (I must be a freak)
Title: Re: GATOR;MONITORS@LIGHT
Post by Gator on Mar 23rd, 2006, 9:41pm

on 03/23/06 at 20:20:05, Jonny wrote:
Id like to see a link to that research study....got one?

I can kill a Kip 5 just by staring to the side of a light buld.....light is my friend (I must be a freak)


I already gave some earlier in the thread, but here we go again.

http://neurology.org/cgi/content/abstract/58/3/354


Quote:
Neurology 2002;58:354-361

Cluster headache
A prospective clinical study with diagnostic implications

Anish Bahra, MRCP, Arne May, MD and Peter J. Goadsby, DSc

Results: The pain characteristics were of a strictly unilateral, predominantly retro-orbital (92%) and temporal pain (70%). Of the cranial autonomic features, lacrimation (91%) was the most common. Nausea (50%), photophobia (56%), and phonophobia (43%) often were noted, as was a sense of agitation or restlessness in 93% of patients.


http://www.aafp.org/afp/20050215/717.html


Quote:
The absence of aura, nausea, or vomiting has helped distinguish cluster from migraine headaches, but recent studies indicate that 14 percent of patients with cluster headache experience aura, 51 percent have a personal or family history of migraine, 56 percent report photophobia, 43 percent report phonophobia, and 23 percent report osmophobia.


http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9673803&dopt=Abstract


Quote:
In response to a questionnaire about their sensitivity, a significantly higher proportion of patients considered themselves sensitive during bout than outside (91% vs 46% for light [chi 2 = 5.9, p < 0.05] and 89% vs 49% for sound [chi 2 = 4.7, p < 0.05]). These results indicate that photophobia and phonophobia are important accompanying phenomena of cluster bouts.


http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12876249&dopt=Abstract


Quote:
CONCLUSION: CH remains unrecognised or misdiagnosed in many cases for many years. Photophobia or phonophobia and nausea were in part responsible for this delay, and should be recognised as part of the clinical spectrum of CH.



You should know me well enough by now to know that when it comes to serious informational threads about CH I don't write it unless I have studied it and can back it.  
Title: Re: GATOR;MONITORS@LIGHT
Post by Jonny on Mar 23rd, 2006, 9:52pm

on 03/23/06 at 21:41:20, Gator wrote:
You should know me well enough by now to know that when it comes to serious informational threads about CH I don't write it unless I have studied it and can back it.  


Your kidding, right?

Do you think a study of 50 clusterheads holds water?

Quantitative evaluation of photophobia and phonophobia in cluster headache.

Vingen JV, Pareja JA, Stovner LJ.

Department of Neurology, University Hospital of Trondheim, Norway.

In order to evaluate photophobia and phonophobia in cluster headache (CH), light and sound-induced discomfort and pain thresholds were measured quantitatively in 50 patients and 50 sex-matched and age-matched headache-free controls. During bout (i.e., during the active period with attacks), CH patients were more sensitive to light and sound than controls (p < 0.001). Outside bout they did not differ significantly from controls except for binaural stimulation. Patients were more photophobic and phonophobic during bout than in the remission period (p < or = 0.05). However, for those tested during bout, the sensitivity to light and sound was not related to the presence of pain during test, usual pain intensity, or pain laterality. In response to a questionnaire about their sensitivity, a significantly higher proportion of patients considered themselves sensitive during bout than outside (91% vs 46% for light [chi 2 = 5.9, p < 0.05] and 89% vs 49% for sound [chi 2 = 4.7, p < 0.05]). These results indicate that photophobia and phonophobia are important accompanying phenomena of cluster bouts.

PMID: 9673803 [PubMed - indexed for MEDLINE]

Gimme a break, Mike.
Title: Re: GATOR;MONITORS@LIGHT
Post by Gator on Mar 23rd, 2006, 10:37pm
It's not just one study.  There are multiple studies out there, including the one you didn't quote from the ch god himself, Dr. Goadsby.  Not to mention the posts of some very well known, long term posters from this forum who say they get it as well.

If the researchers in Norway, the Netherlands and Dr. Goadsby himself aren't enough, how about Dr. Todd Rozen?  I'm not quoting the entire thing, but it's there if you want to read it.

http://jnnp.bmjjournals.com/cgi/content/full/70/5/613


Quote:
Neurol Neurosurg Psychiatry 2001;70:613-617 ( May )

Cluster headache in women: clinical characteristics and comparison with cluster headache in men

T D Rozen, R M Niknam, A L Shechter, W B Young, S D Silberstein

Photophobia occurred in 75% of women and 81.2% of men, and phonophobia occurred in 50% of women and 47.8% of men.


Title: Re: GATOR;MONITORS@LIGHT
Post by Redd715 on Mar 23rd, 2006, 11:01pm
I've read the studies, and I'm convinced that much of the issues with misdiagnosis has to do with symtoms that don't fit the "stereotype".  

I want to make one thing very very clear here...I'm NOT taking sides.  I'm only voiceing my opinion here.

I feel certain, in my heart of hearts, that it's due to the dilligence of us sufferers that more and more is becoming known of the complexities of CH that were never realised in years past.  The more studies that performed the better understanding there is and the closer we get to better treatment options.

It's a baby step approach, I'll agree, but the better understood, and less ridged the criteria gets due to the studies,  the closer we will get to more effective treatments.


I'll refrain from further comment at this time but reserve the right to re-open my commentary if need be.

Now play nice boys before I come open a can of whoop azz on ya'll.


Pegg
Title: Re: GATOR;MONITORS@LIGHT
Post by BlueMeanie on Mar 24th, 2006, 12:14am

on 03/23/06 at 23:01:40, Redd715 wrote:
I've read the studies, and I'm convinced that much of the issues with misdiagnosis has to do with symtoms that don't fit the "stereotype".  

the better understood, and less ridged the criteria gets due to the studies,  the closer we will get to more effective treatments.


I kinda know what you mean as far as the "stereotype" goes, but I have to disagree. It seems to me that the more differences between us, make it harder and harder to truly distinguish weather someone has Cluster Headaches or another type of the zillion headaches out there. If you change the criteria, doctors would be mis-diagnosing even more than they already are. It is truly an amazing field of study.
Title: Re: GATOR;MONITORS@LIGHT
Post by Gator on Mar 24th, 2006, 12:50am
I understand leaving out lesser experienced phenomenon from the diagnostic criteria, but when somewhere between 56% and 91% (depending on the study) of sufferers say they experience a particular associated symptom, then it should be included in the criteria or at the very least having that symptom should not be used to rule out the disorder.

Title: Re: GATOR;MONITORS@LIGHT
Post by Bob P on Mar 24th, 2006, 8:40am

Quote:
You should know me well enough by now to know that when it comes to serious informational threads about CH I don't write it unless I have studied it and can back it.  

Except those studies deal with being light sensitive during an attack not as a trigger for an attack.

I don't mind some light and sound during an attack but I don't want bright light or harsh/loud sounds during an attack.  Bugs the heck out of me when I'm in an attack and one of those hip hop, high energy commercials comes on the TV.

Phot and phono phobia during an attack along with the lacrimination and other autonomic features but not as a trigger.
Title: Re: GATOR;MONITORS@LIGHT
Post by nani on Mar 24th, 2006, 8:43am
Light is a HUGE trigger for me. Sometimes, just a second of sun or bright light in my eye will have me headbanging within minutes. If there are better shades to wear, I wanna know. Thanks Mr.YL
Title: Re: GATOR;MONITORS@LIGHT
Post by seasonalboomer on Mar 24th, 2006, 8:53am
I find that I become senistive to mottled light coming through trees (as an example) at the first sensations that a CH is hitting. Strangely, like Jonny, light used to, at one time, be my friend and I could stare at a bright light which would cause heavy tear flow and it seem to help push the iht through. But the sensitivity rules now. I don't think it is a trigger FOR ME. But I don't like it anyway.

Sadly, when hit, I really can't stand to have my glasses on, so putting on special glasses doesn't sound all that great to me either.

Scott
Title: Re: GATOR;MONITORS@LIGHT
Post by Sean_C on Mar 24th, 2006, 10:14am
I didn't want to post to this, but Gators my bro so I will.

I'm sensitive to light. It can trigger an attack, some great examples were the light shining through the leaves of the trees, some brighter headlights of an oncoming vehicle, the sun glaring through my windshield if its dirty. My computer monitor has done it. Or maybe its none of the above and I'm just getting a hit and blaming something.

I also am sensitive to light and sound during a hit. I need darkness, and quiet. I've stood in the mirror many times and my pupil on my cluster side only, will dialate open and closed, not quickly either, but my normal eye stays the same dialation so it is noticable when it does it.

The sound thing happens usually only after a kip 8. I might not be sound sensitive at all, and its endorphins kicking in I have no idea. But sounds do intensify, or at least they seem too.

I do know others that this happens too. I assume its all related to the nerves, everythings all bunched together in there, so why not. Some of us, our nose runs like a faucett, others thier nose shuts down completely. Some have sensitive eyes, others may not. Some get clusters in the right eye, some do not. Some take meds that work that others get no benefit from.

We're all the same guys, let Mike do his thing, he's trying to help with someones hurt. We can all appreciate what he's trying to do.

Cheers  [smiley=me&mb.gif]

Sean.............................................
Title: Re: GATOR;MONITORS@LIGHT
Post by Bob P on Mar 24th, 2006, 10:30am
Sean,

It's not about Mike.  It's a discussion re triggers.
Title: Re: GATOR;MONITORS@LIGHT
Post by kcopelin on Mar 24th, 2006, 11:36am
I have always disliked strobing lights, and florescent lights.  Never really thought about them as triggers, but yes, they can trigger.  Seems these days though, bout everything is a trigger, including exercise.  How obnoxious.  And yes, Johnny, you are a freak...can't believe nobody responded to that open invitation ;;D
PFDAN
kathy
Title: Re: GATOR;MONITORS@LIGHT
Post by Mr.YL on Apr 4th, 2006, 10:09pm
Good news... the uv glasses may have been a  beneficial. I was able to tolorate flourscent lights for 4 hours the other day... now that was a first... Maybe a coincidece thuogh if they work for me inside by lesseninig the trigger rays then it may work for someone else... Time will tell on my behalf , though it is a trial time for me and could mean a benifit to a new outlook if they work. So many places these days have those bothersome lights/ I am not gonna let this thread go if the specs work for me... wishing you all PFDAN... Mr YL     ...who knows could be a whole new beginning for me
Title: Re: GATOR;MONITORS@LIGHT
Post by SteveY on Apr 13th, 2006, 3:26pm
I've said it before, and I'll say it again.

The only thing we all have in common is the pain!

Eposodics, chronics, triggers, we're all different.

Out of interest, light does not trigger an attack for me.

Steve


Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1!
YaBB © 2000-2003. All Rights Reserved.