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Title: Help... Post by catlind on Mar 6th, 2004, 4:02pm 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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Title: Re: Help... Post by Roxy on Mar 6th, 2004, 5:17pm Get your ass to the doc......now!! Please? |
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Title: Re: Help... Post by Tim_w on Mar 6th, 2004, 6:09pm Cat I DITTO what Roxy Said ! And I and what the hell would you tell one of us to do ( Think About It) ::) Sending Vibes your way!! TimW Happy Pappy |
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Title: Re: Help... Post by M.R. on Mar 6th, 2004, 6:20pm 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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Title: Re: Help... Post by Woobie on Mar 6th, 2004, 6:40pm 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 :-* |
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Title: Re: Help... Post by broomhilda on Mar 6th, 2004, 7:41pm Cat, PLEASE go to the doctor ASAP! Please and fast!!!!! Sending you my thoughts and prayers! Andrea |
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Title: Re: Help... Post by Charlie on Mar 6th, 2004, 8:03pm MD: NOW Waste no time. Charlie |
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Title: Re: Help... Post by Mark C on Mar 6th, 2004, 8:24pm ............and hurry! ;) |
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Title: Re: Help... Post by kissmyglass on Mar 6th, 2004, 8:58pm Cat, Cat Cat...hope you are at the Doc & not reading this.... |
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Title: Re: Help... Post by tanner on Mar 6th, 2004, 9:12pm 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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Title: Re: Help... Post by bobkip on Mar 6th, 2004, 9:49pm What everyone else said OR the ER. Kip |
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Title: Re: Help... Post by catlind on Mar 7th, 2004, 1:00am I hate military doctors. [smiley=argue.gif] 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. [smiley=furious.gif] 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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Title: Re: Help... Post by Pinkfloyd on Mar 7th, 2004, 3:16am 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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Title: Re: Help... Post by randal on Mar 7th, 2004, 7:40am 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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Title: Re: Help... Post by Renee on Mar 7th, 2004, 8:57am 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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Title: Re: Help... Post by Jackie on Mar 7th, 2004, 9:04am Bless your heart, Cat.... Please get to the eye doc....ASAP..... How are you today, Sweetie? Love ya, Jacks 8) |
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Title: Re: Help... Post by Woobie on Mar 7th, 2004, 9:38am 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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Title: Re: Help... Post by catlind on Mar 7th, 2004, 2:08pm 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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Title: Re: Help... Post by broomhilda on Mar 7th, 2004, 2:21pm 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 :'( Please keep us posted and I hope it settles down for you real soon! Best wishes Andrea |
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Title: Re: Help... Post by cootie on Mar 7th, 2004, 10:41pm 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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Title: Re: Help... Post by bobkip on Mar 7th, 2004, 10:54pm One 2x4 comin' your way. Stupid docs. Kip |
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Title: Re: Help... Post by Mr.Happy on Mar 8th, 2004, 7:35am Strangely ernough, from a Reflex Sympathetic Dystrophy (http://www.rsdalert.co.uk/drugs/index.html) 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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Title: Re: Help... Post by juvy on Mar 8th, 2004, 7:40am 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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Title: Re: Help... Post by catlind on Mar 8th, 2004, 3:19pm 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:
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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Title: Re: Help... Post by Tiannia on Mar 8th, 2004, 4:35pm 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. ;) 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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Title: Re: Help... Post by PatFan on Mar 8th, 2004, 4:45pm I found this link.....you may have already seen it in your searches, but here it is.... http://www.fda.gov/medwatch/safety/2001/topamax.htm Hope you get better soon! |
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Title: Re: Help... Post by Lizzie2 on Mar 8th, 2004, 4:55pm Hey Cat, Here's another link to info on the eye problems with topamax. I really hope you can get help soon for the eye pain! Scary stuff.... http://headaches.about.com/cs/druginfo/a/topamax_warn.htm Lizzie :) |
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Title: Re: Help... Post by echo on Mar 8th, 2004, 5:07pm Hope that you were able to get in today and the drs are working to resolve this problem. |
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Title: Re: Help... Post by catlind on Mar 9th, 2004, 5:22pm Well another one bites the dust. Topamax is off the list of prevents now. Shame, cause it was working pretty well in the begining. Turns out it's possible I am the 24th (or more) that could fall into the category of Secondary Angle Closure Glaucoma, a few eyeball type tests that numbing drops let them stick something on my eyeballs a few times, made me see spots for hours because of bright lights, and of course the ever popular 'visual acuity' test (can you read this line?) and the conclusion? ..... Stop taking topamax. Boy wish I got paid as much as they did to figure that one out. ::) However I don't have to taper down, I was told to stop it now. I'm to go back in a week to see what we'll do next. So if you are on topamax, be very aware of the eye pain you experience during the first month of your treatment. Cat |
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Title: Re: Help... Post by jonny on Mar 9th, 2004, 5:55pm Im glad you got it look at, Cat....Thats all I need is to be your guide dog the next convention.....LOL ;;D ........................jonny |
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Title: Re: Help... Post by Tiannia on Mar 9th, 2004, 6:20pm Glad you got in to be seen hun. Hope that they can find something that will help you. I cant say that Topomax is high on my list. Tia |
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Title: Re: Help... Post by brain_cramps on Mar 9th, 2004, 8:14pm on 03/08/04 at 15:19:35, catlind wrote:
Why would ya wanna? ;;D Glad you were able to check into it. Thanks for the update! grant |
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Title: Re: Help... Post by catlind on Mar 10th, 2004, 6:37pm Well I think I'd have to say the topamax was actually working to a degree. My head has returned to it's normal pattern of headaches, 10, noon, 5, 9, 4:30a.m and I'm saying my f*ing head again instead of my eyeball. That's the sad part, a med that may well have been able to control this stupid thing would have potentially left me blind. I think it's worth trying for anyone out there, just make sure you or your supporter really pays attention to the normal pattern of your headaches and eye pain that goes with your headaches. There was a definite change for me, I just wasn't really paying attention to it, glad my hubby was. Cat |
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Title: Re: Help... Post by thomas on Mar 10th, 2004, 6:38pm on 03/10/04 at 18:37:03, catlind wrote:
I'm glad he was too, Cat. Sorry you got a shitty deal out of this one :-/ Hopefully you'll find something else that helps........ :) |
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