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Topic: Help.... (Read 420 times) |
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catlind
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I'm on topamax, started it about 5-6 weeks ago now I guess. Everything I can find online, says that if you experience eye pain to call your doctor immediately.
Well duh, of course I get eye pain. I have cluster headaches, that would be why I'm taking the topamax. The last week I've noticed that the nature of the eye pain has changed though. I thought it was the nature of the headaches, or maybe I just didn't even really notice to be honest. Last night I was telling hubby about it, whining really cause this eye pain is enough to piss me off, but not enough to really get ya rockin and rollin. He said that it sounds like the whole nature of the headaches are changing. It occured to me that he was right and that the CH's really were different of late, there isn't any of the typical traits that I'm used to. This last week has been rather hectic so I haven't really been paying attention to anything - you know not even things like food and stuff.
My question is this, all the data I can find says call you doctor immediately. It's saturday, and my doctor happens to be the military. Not like you can call them on the weekend. What do I do? Do I wait til Monday? Go to the base hospital? You aren't supposed to just stop this drug because it can cause seizures in patients who aren't taking it as an anti seizure. Apparently, from what I can find, the eye pain is an indicator to an ocular disorder that is a precursor to blindness.
What do I do??
Cat
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Cerberus
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Re: Help....
« Reply #1 on: Mar 6th, 2004, 4:17pm » |
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My best advice for an immediate concern such as this...
Go to the base hospital, tell em why you are there and pretty much everything in the post....Unless of course you want to take your chances at a Civilian ER. Depends I suppose also on where your recent and detailed records are....
Do It NOW! And I really really hope you are ok..
Ramon
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fubar
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Re: Help....
« Reply #2 on: Mar 6th, 2004, 4:40pm » |
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Cat,
Don't be foolish. Get to the hospital, explain everything, and I'm sure they'll be able deal with it. You are informed enough... it's not like they're being asked to figure out why you're having eye pain. If this is a toxilogical problem, I'm sure they can do blood tests, or take you off of the meds under supervision.
Just don't mess around with this one. Go now.
-Fu
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Peppermint
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Re: Help....
« Reply #3 on: Mar 6th, 2004, 5:04pm » |
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Hey cat.. pardon my 2 cents, but I really don't think you should think about it too long, I see you're still online.
If it is something related to the drug, better to start getting off the meds sooner rather than later.
At worst, if they need to contact the doctor, I'm sure there is some way that they can get in touch with him, even if you aren't privy to that information.
Just my thought.
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Renee
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Re: Help....
« Reply #4 on: Mar 6th, 2004, 6:54pm » |
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Cat,
you didn't tell me in the p.m. that you were strugglin' with topamax also!!!
I quite cold turkey per dr's orders on friday, but i had only been on it for 3 days when i forgot who, what or where ...uh...what was i talking about?
get to the base hospital!
better safe than sorry....NOW GO,,,PLEASE!!!
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
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catlind
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Taz taught me the cluster dance
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Re: Help....
« Reply #5 on: Mar 7th, 2004, 1:03am » |
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I hate military doctors.
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.
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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A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
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