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mollyrose
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BLURED VISION BEFORE & AFTER?? HELP
« on: Mar 26th, 2003, 10:47pm »
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Wow- These clusters are miserable. I am 26 yo female, non smoking- non drinking college student, who is on the computer all day. Just had my first cluster attack last week.
 I have PERFECT vision and this whole thing started with blurred vision for the first few days before the cluster attack. The CH lasted an entire day with extreme sentitivity to light, stabbing eye pain, red eye, and diolated pupil in the CH eye. The next day I was fine, except for the blurred vision continues. Its almost been 2 weeks  since it started. Is this normal for CH??? Please help???Mollyrose
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Re: BLURED VISION BEFORE & AFTER?? HELP
« Reply #1 on: Mar 26th, 2003, 11:16pm »
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G'day mollyrose,
 
A cluster lasting all day seems a little odd. The longest that i've been hit was a little over an hour, but the norm for me is about 20-30 minutes.
Have you taken the Cluster Quiz on this site to gauge whether you are experiencing clusters or migraines? Day long attacks and sensitivity to light sounds more typical of a Migraine, but i'm no doctor.
If they are day long clusters, I suggest you start drinking and smoking.
All the best
 
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Re: BLURED VISION BEFORE & AFTER?? HELP
« Reply #2 on: Mar 26th, 2003, 11:25pm »
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Hey Aussie-
 havent taken the quiz! Will do that now! I actually had a Doc diagnose it as clusters--but docs dont always know everything-- but it does seem to be a combination of a cluster and a migraine-- The "cant sit still thing" is another symptom I experience -- Its miserable--as you all know! I guess when i think about it, I experience the pain in "clusters" all day long-but did have the photosensitivity all day long! I couldnt go outside!
 If anyone knows about the blurred vision thing--please help me!
Thanks
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Re: BLURED VISION BEFORE & AFTER?? HELP
« Reply #3 on: Mar 26th, 2003, 11:28pm »
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Mollyrose, tell us a little more about yourself, such things as, have you seen a Neurologist? If so, what meds does he have you on? Things like this will help us help you. There's a lot of us that have had a real hard time with getting a diagnosis to begin with.
 
Lots of luck to ya, and hope you get to feeling better.
 
Mikey,  Grin
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Re: BLURED VISION BEFORE & AFTER?? HELP
« Reply #4 on: Mar 26th, 2003, 11:32pm »
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And BTW, about the blurred vision thing, I get it with my Migraines, but not with my CH's.  It is before and after, for some time too.
 
Mikey,  ;D
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Re: BLURED VISION BEFORE & AFTER?? HELP
« Reply #5 on: Mar 26th, 2003, 11:34pm »
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Welcome aboard. Never had blurred vision from this horror but they made me no fun to be around. Clusters can last more than two hours, I think but never a day. Did you have some down times between the things?  
 
Stick around and tell us more.
 
Charlie
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Re: BLURED VISION BEFORE & AFTER?? HELP
« Reply #6 on: Mar 26th, 2003, 11:41pm »
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No meds for me! I am scared to take anyhting yet! its alll so new!! havent seen the neuro yet-- The CH just started for me for the first time last week-- do you get the combo of migraines and clusters??? Also how long does the bluriness last ?-- Im going on about almost a week after the Cluster attack with burred vision and hating florescent lights!!
Thanks again
M
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Re: BLURED VISION BEFORE & AFTER?? HELP
« Reply #7 on: Mar 26th, 2003, 11:45pm »
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Can't sit still?  
 
Sounds like clusters to me.
 
Damn sorry but stick around. Lots of goofy ideas here. This thing, made my life a lot easier. It worked well for me:
 
Dr. Wright's Circulatory Technique:
 
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.
 
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head.  This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.  
 
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided.  If you let up or lose concentration, it’s very hard to restart this process.  It may take some time but when this works, the relief is almost immediate.  
 
I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood.  It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.  
 
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
 
When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.  
 
I wish you the best of luck - Charlie Strand
 
 
 
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Re: BLURED VISION BEFORE & AFTER?? HELP
« Reply #8 on: Mar 26th, 2003, 11:58pm »
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Hi Molly,
You probably won't get many answers about blurry vision here...it's not really one of our characteristics.
 
Maybe you could search around on some migraine sites for the blurry vision and how long it lasts.
 
Good luck on your research.
Mast
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Re: BLURED VISION BEFORE & AFTER?? HELP
« Reply #9 on: Mar 27th, 2003, 12:03am »
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Well mollyrose,    us here in clusterville will do more to help you than you can EVER begin to imagine......if you need us.
 
Think you need to take the time to READ, READ, READ, READ, READ, READ, READ, READ, READ,  
 
and then.........READ SOME MORE
 
see, there are ppl before you that have gathered info especially for us cluster heads and have been generous to put it here FREE FOR THE USING....so please USE IT
 
After you know more, come back and tell us what you've discovered...........
 
and .....question.......you're on the puter all day EVEN during a ch attack???  seems very odd
 
do some research and post to us again
EDNA
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Re: BLURED VISION BEFORE & AFTER?? HELP
« Reply #10 on: Mar 27th, 2003, 12:03am »
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G'day Charlie,
 
Just read you circulatory technique, Ive been doing something very similar for many years getting relief without knowing why. I have this little smooth black rock about the size of a golf ball that I roll around and squeeze in my left palm until the pain goes away. It makes a little more sense now. Thank you.
 
Steve
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Re: BLURED VISION BEFORE & AFTER?? HELP
« Reply #11 on: Mar 27th, 2003, 12:10am »
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Deja Vu time here. I remember back around 1977-1978 or so I used to have really bad headaches almost everyday. They were always around my right eye... so I saw an opthamologist a few times. He decided I had astigmatism and that was probably the reason for the headaches... and prescribed strong glasses (which made me see better, but never did anything for the headaches).
From 1982 to 1989 I went on a cocaine binge... don't remember having any cluster during that time. Maybe keeping my nose numb prevented them. Around four months or so after I quit that, I started having what I now recognize as cluster headaches... have been ever since... but not diagnosed as such until around 1995.
Your post has me wondering now... did I have cluster headaches way back in 1977-78... and not get it diagnosed properly until 18 years later? And I wonder... do clusters really affect only 70 of 100,000 people? How many people have them and never know it?
 
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Re: BLURED VISION BEFORE & AFTER?? HELP
« Reply #12 on: Mar 27th, 2003, 12:17am »
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   Hi,  
 
    Since I am, right now, between headaches.....I realize I may not be reading your posts correctly.
 
  Did you say you have cluster headaches and then also say you haven't YET seen a Neuro?????
 
 O.K. I'll bite.   How did you come to the conclusion you have clusters?  
 
     Some of what you say sounds like clusters, ie..Not being able to stand or sit still.  And yet the rest does not fit.   I think I would love for you to post again after you've seen a reputable Neuro.    
 
   Please let us know what he/she says, O.K.?
 
       LindaH
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Re: BLURED VISION BEFORE & AFTER?? HELP
« Reply #13 on: Mar 27th, 2003, 1:18am »
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Thanks for all the help! Will continue researching this stuff. My doc diagnoded the Cluster headache. I dont think hes a neurosurgeon? I may have some rare form of migraine/cluster headache or something - I had symptoms of both durring my one day attack - but symptoms of a CH (dialated pupil, red eye, stabbing throbbing pain behind my eye, couldnt sit still, awoke in the AM with the symptoms, etc..)were dominant over migraine (no nausea, severly photosensitive, burred vission before and after)-- which was an entire day.
Thanks again
M
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Re: BLURED VISION BEFORE & AFTER?? HELP
« Reply #14 on: Mar 27th, 2003, 8:08am »
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Mollyrose, we don't get the throbbing pain during a CH attack, our pain is constant and non relenting.  Yes I do have both Meegrains (thats what we call Migraines) and CH attacks, and believe me you can tell the difference between the two.  Is that what you were asking me about?
 
The Blurred vision is not consistant with CH.  You could have both Meegraines and CH.  lord I hope not for your sake.
 
Mikey,  ???
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Re: BLURED VISION BEFORE & AFTER?? HELP
« Reply #15 on: Mar 27th, 2003, 1:55pm »
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Nope, its never happen to me in all the time ive had to deal with CH.
 
..............................jonny
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Re: BLURED VISION BEFORE & AFTER?? HELP
« Reply #16 on: Mar 27th, 2003, 9:14pm »
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I'm with jonny, I get blurred vision from lots of things, but not from CH. Linda also makes a very good point about the Neurologist, it's a good idea. I will attach a favorite link to aid your search. Let us know how it goes.
 
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Re: BLURED VISION BEFORE & AFTER?? HELP
« Reply #17 on: Mar 27th, 2003, 9:30pm »
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Blurry vision for a week??  You've got something else going on...I'm not saying you DON"T have clusters, but if you do it's unrelated to the blurry vision.  
 
Eighteen years of clusters, no blurry vision.  Also, no throbbing pain.  Pain is steady & constant.  Definitely see a neurologist & get all the standard tests done.
 
Let us know what happens with the Doc.  Smiley
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Re: BLURED VISION BEFORE & AFTER?? HELP
« Reply #18 on: Mar 27th, 2003, 9:49pm »
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Ouch....sounds like you've got a shitty deal right now.
 
You really are flying pretty blind right now (pardon the pun seeing as you are having trouble with your vision heheh) with not having seen a professional regarding your headaches.  General practicioners CAN be helpful but cluster headaches are so special, they really need a neuro to diagnose them to make sure it's not something different.  Some headaches can resemble clusters in some ways but be very different in one or two ways, and thus, they become an entirely different diagnosis.  It's important to recognize the difference, and that won't be done until you get a few opinions (get a few different opinions if you can!).
 
I know how frustrating it can be to know that something is wrong with your body and not be able to get to the doctor "soon enough" for your liking to get it figured out, but keep doing your research.  In the meantime, try to find some relief and start a headache diary if you can so that when you do see a doctor you can tell him exactly what is going on.  Have you looked at the kip levels of pain?  there is a kip scale bar on your left that you should look at.  When you have a headache, note the time it took for the attack to hit, and how painful the attack is on a kip scale.  Note what you ate (to rule out triggers in case it's a migraine) or if you were sleeping and just woke up from an attack, etc.  These are all things the doctor will ask you, and if you know before you get there, it will help you help him in your diagnosis.
 
From the sounds of it, you've only had one headache?  If that's the case, you may well have just suffered a really intense migraine.  My friend had one once that made her left side numb.  They can do really messed up things and take a while to dissipate.  Having one headache one day does not qualify as a cluster headache.  They need to happen for a period of weeks or months, usually daily or every couple of days.  Most notice some sort of pattern to the madness, but some don't.  While everyone is different, the diagnosis for cluster headaches in this case sounds premature.  For your sake, I hope it's something more easily treatable.
 
Keep looking around and ask questions if you find anything that doesn't make sense to you.  Have you looked at O.U.C.H. yet?  Also, emedicine.com has some good journals on the difference between headaches.  www.headaches.org I think is another one.  
 
Wishing you healthier days Smiley
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Re: BLURED VISION BEFORE & AFTER?? HELP
« Reply #19 on: Mar 27th, 2003, 9:54pm »
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Mollyrose,
     The discriptions of your symtoms sounds exactly like Migrain/cluster syndrome. Your statement of "No meds for me! I am scared to take anything yet!" tells me that your pain is more on the migraine level. If your pain was the intense boring pain of a cluster then you would gladly drink terpentine if it was the treatment. Unfortunatly it is even rarer than CH. It is important to get the proper diagnoses becouse the preventatives used to treat are for migraines. Try Google. the links I have are dead. I have a PDF I can send you if you want. The following is from the OUCH library.
    Opus  Tongue
 
The cluster-migraine syndrome is diagnosed when elements of migraine headache occur simultaneously in patients suffering with cluster headache. Solomon and Kappa[111] instituted arbitrary diagnostic criteria to establish the diagnosis of this uncommon syndrome. According to their criteria, the diagnosis of cluster-migraine syndrome was given to patients who had symptoms of one headache predominantly (either migraine or cluster), but in whom four or five features of the other headache also were present. Patients who experienced cluster headache with nausea, vomiting, photophobia, or phonophobia would receive this diagnosis, as would patients with migraine who experienced ipsilateral autonomic features. The criteria employed by Solomon and Kappa[111] were not precise; the required number of associated symptoms was picked arbitrarily. Other clinicians have reported patients with two distinct headache disorders. Graham[34] described patients who suffered from recurrent bouts of migraine headaches that recurred daily for days or weeks at a time, then entered a period of pain-free remissions. It is important to recognize the cluster-migraine syndrome because of the unique treatment strategies that need to be implemented. Patients suffering from this syndrome have been reported to respond to inhalation of 100% oxygen as an abortive strategy for acute attacks and lithium carbonate as prevention. This combination would not be expected to be helpful in patients suffering from typical migraine. Alternatively, beta-blockers occasionally may help in this syndrome, whereas these agents would not be useful in the treatment of cluster headaches.
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Re: BLURED VISION BEFORE & AFTER?? HELP
« Reply #20 on: Mar 27th, 2003, 9:57pm »
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Occasionally I'll get some weird symptoms... totally "un-cluster-like". Not blurry vision... but like my sight will be dimmer or seem dark on the side where I get the cluster pain...  Like things aren't normal brightness. Sometimes lasts for hours after an attack.
Another weird one... I'll feel a shooting stabbing pain in my right temple or just to the right of my nose, or under my eye. The ones under my eye... I can feel the muscles twitching. They will only last like 1-2 seconds at a time, but may occur maybe a dozen times in an hour.  Maybe once in a week or two.
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