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   Author  Topic: Help...  (Read 872 times)
catlind
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Help...
« on: Mar 6th, 2004, 4:02pm »
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Please read....
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1078591783;start=0#0
 
Cat
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Re: Help...
« Reply #1 on: Mar 6th, 2004, 5:17pm »
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Get your ass to the doc......now!!
 
Please?
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Re: Help...
« Reply #2 on: Mar 6th, 2004, 6:09pm »
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Cat
I DITTO what Roxy Said !
And I and what the hell would you tell one of us to do ( Think About It) Roll Eyes
Sending Vibes your way!!
TimW Happy Pappy
 
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Re: Help...
« Reply #3 on: Mar 6th, 2004, 6:20pm »
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Good grief woman.....what Roxy said. Safe is way better than sorry. Find one in a bar if ya hafta......at least he/she would have some sober friend that could help ya out.  
 
Sometimes those kids never learn.
 
Mike
 
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Re: Help...
« Reply #4 on: Mar 6th, 2004, 6:40pm »
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CAT - Dont MAKE me come over there~!    
 
Get yer ass to the DR!!   Dont wait until Monday....
 
Dont mess around with your eyes.  You got some cute kids to look at!!!
 
Let us know what happens....  
 
tina Kiss
 
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broomhilda
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Re: Help...
« Reply #5 on: Mar 6th, 2004, 7:41pm »
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Cat, PLEASE go to the doctor ASAP! Please and fast!!!!!
 
Sending you my thoughts and prayers!
 
Andrea
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Re: Help...
« Reply #6 on: Mar 6th, 2004, 8:03pm »
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MD:
 
NOW
 
Waste no time.
 
Charlie
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Mark C
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Re: Help...
« Reply #7 on: Mar 6th, 2004, 8:24pm »
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............and hurry!  Wink
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Re: Help...
« Reply #8 on: Mar 6th, 2004, 8:58pm »
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Cat, Cat Cat...hope you are at the Doc & not reading this....
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Re: Help...
« Reply #9 on: Mar 6th, 2004, 9:12pm »
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hey cat, its been a long time! i'm glad i lurked in today and caught this string so i can say...........
 
I"LL TALK TO YOU AFTER YOU GET BACK FROM THE DOC"S
 
       i still luv ya'll  
           tim
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Re: Help...
« Reply #10 on: Mar 6th, 2004, 9:49pm »
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What everyone else said OR the ER.  
Kip
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catlind
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Re: Help...
« Reply #11 on: Mar 7th, 2004, 1:00am »
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I hate military doctors.   argue
 
I know what the eye pain of a cluster feels like, even though women don't get clusters.
 
And this pain is just like CH eye pain in the pain dept. but that's it.  No eye tearing, no nasal congestion or runny nose, there is no pain anywhere else - none in the temple, none following the trigeminal nerve anywhere.  100% in the eyeball, feeling like it's gonna explode, like I wanna rip it outta my head.  Levels ranging anywhere from....say a kip 4 to a kip 8.   It's no damn cluster though.  
 
Yesterday and the day before, starting at 2p.m. every hour on the hour until about midnight, this pain would be there, O2 didn't work, ice didn't help, imitrex didn't work.  Clark noted the entire pattern of my headaches seemed to change.  Today (Sat. morning), 10 a.m. this eye pain starts up, and it doesn't stop.  By 3 p.m. it's still there, 6 hours later (and still is now 13 hours later).  I don't get attacks lasting that long, and while the intensity has been ranging from shadow to SHIT THIS HURTS, it has not stopped.
 
So on the sound advice of everyone here, and all the stuff I found online, off we went to the base hospital around 5 p.m.  Fucking morons.  I wrote down on my little sheet what was going on - eye pain - what drugs I was on - imitrex, o2, topamax - what drugs I was 'allergic' to - nitro and morphine.
 
Doc checks me over, says the only thing he's aware of to be worried about with Topamax is double vision, nothing out there about eye pain.  Then goes on to say (after I have 3 times told him this is not a CH - because for me the absolute tell tale sign was - I WAS ABLE TO LAY DOWN QUITE COMFORTABLY) this is just a variant of your clusters, we'll get you on an IV and give you some stronger medication.
 
I'm thinkin ok, this guy's clueless, he steps out, calls the eye doc, comes back in says the eye doc said that the only (ONLY) concern with the topamax is glaucoma, so not to worry.  Sends in the nurse with the IV, then sends in the male nurse with the drugs.  He asks if I've ever had morphine.  I tried to explain (just like it's WRITTEN DOWN) I can't have morphine, it triggers clusters and rebound headaches from hell.  He says that's ok, morphine is a vasodialator, and headaches are a common side effect, if you get one, we can give you something else to get rid of it, and dumps it into the IV.   furious
 
Shift change occurs at 8 p.m. and next doc comes in to see me crying cause of course now I'm really in pain, and not because of my eye.  He sits down with my chart, opens it and the first thing he sees is "allergic to morphine".  He apologized profusely, sent the nurse back in with a shot of demerol and phenergan to take care of the rebound headache and hopefully the eye pain, and then released me with some percocet and phenergan.  
 
Oh yeah, I STILL DON'T KNOW IF I SHOULD STOP THE DAMN TOPAMAX!!
 
Just because I mentioned the CH, they all got hung up on it, and figured I was there for the headaches, not the eye pain, and would not listen to me.  So much for that plan.
 
Anyone have any other ideas?  I need a real doctor.  From what I can find, the eye pain is definitely associated to the topamax, so I do believe I will stop that.
 
Thanks for all the input guys, it's nice to know you can turn to the family for help!!  *hugs*
 
Cat
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Re: Help...
« Reply #12 on: Mar 7th, 2004, 3:16am »
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I looked at some of the pharmacology of Topamax and think you should see a opthamologist. Earlier adverse reactions to Imitrex may also be something to mention to him/her.
 
From Rx list....
"Third, topiramate antagonizes the ability of kainate to activate the kainate/AMPA a-amino-3-hydroxy-5-methylisoxazole-4-propionic acid non-NMDA subtype of excitatory amino acid (glutamate) receptor, ...
 
I understand that there is some concern that ampa kaniate receptor agents may damage the neural elements of the retina, based on the pharmacology.
Whether this would include antagonists and agonists I don't know Cat, but if there is a warning about "eye pain," I don't think that pain killers are what they (they being the researchers that wrote the warnings) would recommend using to treat this pain. I would presume they want you to find out the "cause" of the pain.  
 
Don't want to scare you but just want you to see someone that knows what they are talking about.
 
PF
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Re: Help...
« Reply #13 on: Mar 7th, 2004, 7:40am »
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Hello Kip-Sorry to here about the eye pain and idiot doctors but I would take the advice of pinkfloyd and go see an opthamologist. Do you have a Hunkler eye center or some clinic that deals with all kinds of eye exams.These places can put you through all kinds of tests and have the proper equipment to look at your cornia and nerves and other regions that normal doctors dont have.I have been to these people several times because of my poor vision and they can pretty much spot anything wrong that has to do with your eyes.
Take Care
Randal
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Re: Help...
« Reply #14 on: Mar 7th, 2004, 8:57am »
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Cat,
 
I wish you had my e.r. doc to go to.  He is the one, BELIEVE IT OR NOT, that finally diagnosed my ch.  When I went in on Tuesday, he is the one that gave me the nerve blocks instead of narcotics.
 
Also..he wants OUCH info, brochures, etc.  Where can I get some of them or do we have any at this time?
 
So sorry about your experience yesterday and I'd go with the above posts and go see an eye doc.  I had to quit the topamax this week also...not because of eye pain but because I forgot who, where, when...I was a lost body.
 
Here we are, stuggling day by day in dealing with ch and side effects of meds for ch...only to wake another day with another ch.
 
hope you get to feeling better
renee
 
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Re: Help...
« Reply #15 on: Mar 7th, 2004, 9:04am »
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Bless your heart, Cat....
Please get to the eye doc....ASAP.....
 
How are you today, Sweetie?
 
Love ya,
Jacks Cool
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Re: Help...
« Reply #16 on: Mar 7th, 2004, 9:38am »
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oh MAN Cat.......
 
What a fuck-a-roo.........
 
I'm sorry .........
 
I hope you can get to a GOOD doctor..... SOON.
 
I hope your eye is leavin you alone!!!!!!
 
Check in!!
 
Tina
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catlind
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Re: Help...
« Reply #17 on: Mar 7th, 2004, 2:08pm »
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Thanks folks, I'll do my best to get to an eye doc, but I can't just go to one unless I want to pay the entire bill.  I have to go to the military doc first, let them decide if I need to see an eye doc, rant and rave that I demand to see an eye doc, let them decide if I need to see an eye doc, and then go from there.
 
Eye pain is better today, tolerable, but still there, I cut back on the topamax and will stay at a lower dose until I see the doc tomorrow.
 
It occured to me that the ER docs didn't even ask me what dose of topamax I was on *sigh*
 
We'll get these folks educated one way or another...it would be nice if we could do it without having to beat them over the head with a 2 x 4 though LOL.
 
Cat
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Re: Help...
« Reply #18 on: Mar 7th, 2004, 2:21pm »
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LOL Cat, funny how the patients have to educate... sorry they did not even ask the dosage, yikes!!!!!!
 
I hope your ranting leads you to an eye doc soon, its scary to know this could be going on Cry
 
Please keep us posted and I hope it settles down for you real soon!
 
Best wishes
Andrea
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Re: Help...
« Reply #19 on: Mar 7th, 2004, 10:41pm »
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I'm no doctor but would think that the cuttin back on the med a bit would 'maybe' be a good idea till ya got into a doc......suppose it would depend on how long ya been on it and at how high a dose too and how much ya cut back to. High blood pressure thru the years have damaged Brad's blood vessels in his eyes and he didn't even know he had it......so.....make sure ya get it checked out......cuz unknown damage will someday be known Pam  
 
Hope yer feelin better now !!!!?
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Re: Help...
« Reply #20 on: Mar 7th, 2004, 10:54pm »
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One 2x4 comin' your way. Stupid docs.
Kip
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Re: Help...
« Reply #21 on: Mar 8th, 2004, 7:35am »
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Strangely ernough, from a Reflex Sympathetic Dystrophy site, which I never heard of:
 
TOPOMAX WARNING
A warning for those Topomax users who are having trouble with eye pain and blurriness:
Your eye pain and blurred vision is a reaction from the Topomax. Your eye pressure is high and if it stays high for a short period of time you will damage your optic nerve and become blind! I am not joking. Last week my husband started using Topomax. 1 week later he almost lost his eyesight as a reaction to it. The Topomax raised his eye pressure to the high fifties (normal is around 10) and no one knew how to treat it. Fortunately he was sent to the Mass Eye and Ear Infirmary in Boston who is currently researching this side effect. His still cannot see and they are hoping he will regain his ability to see within 2 weeks.
If you start using Topomax and feel irritation in your eyes no matter how minor stop using and go to your doctors immediately!!! Not many doctors are aware of this newly discovered problem so refer them to the Mass Eye and Ear Infirmary's research. Valerie - Boston, Massachusetts USA

 
It was the "Not many doctors are aware of this newly discovered problem " that caught my Eye, so to speak.
 
A new one to me.......
RJ
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Re: Help...
« Reply #22 on: Mar 8th, 2004, 7:40am »
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Cat,
 
Hang in there and keep us updated.  I've got a steady supply of 2X4s so don't worry on that account.
 
Cheers,
Juvy
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Re: Help...
« Reply #23 on: Mar 8th, 2004, 3:19pm »
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Well, after following a few links, and ending up at the the site for Research to Prevent Blindness and recognizing the words "secondary acute angle glaucoma" I did a google search and immediately located this site:
http://www.hc-sc.gc.ca/hpfb-dgpsa/tpd-dpt/topamax_e.html
 
Quote:
Acute Myopia and Secondary Angle Closure Glaucoma
 
Patients taking TOPAMAX should be told to immediately contact their doctor and/or go to the Emergency Room if they/their child experience(s) sudden worsening of vision, blurred vision or painful/red eye(s).  

 
Sooooo if you are on Topamax, read the information on that link.  Going to the ER was absolutely the smartest thing to do.  The doctors being ignorant was not in my favo(u)r. (I just can't get the Canadian outta me hehe).
 
I wasn't able to get an appt today, but I will get one tomorrow if I have to create the biggest damn scene they've ever had in that hospital.  They will NOT NOT NOT screw around with MY eyesight.
 
Thanks everyone for the info and support.  You would think the doctors that prescribe this stuff would be smart enough to pay attention to the warnings that are issued with it.
 
Cat
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Re: Help...
« Reply #24 on: Mar 8th, 2004, 4:35pm »
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Give them hell, Cat.  Or you can punch someone in the eye and end up in the Brig (or whatever the military calls their jail) and then get your eye exam.  Wink
 
Sweetie, just get in and make sure that you get seen, by someone with an active braincell. Please let us know how you are doing.  
 
Tiannia
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