I've been having really debilitating headaches the last 3 weeks (the back of my head feels like its going to explode off, intense pain behind the eyes, neck/shoulder/face pain, fatigue, dizziness, etc) and no pain meds were breaking the headache so my Neuro (only seen her once before) decided to call in a ton of Prednisone for me, starting at 60 mg a day. I have never been on that much Prednisone! It actually helped my headache, even though it made my heart feel awful (I have POTS) and made me shake like a leaf.
After 5 days on prednisone I noticed the vision in my left eye got majorly worse and my pupils were always dilated.
The next day I got down to 40 mg of prednisone my headache started to come back, along with the neck/shoulder pain and dizziness. Ug.
Now my Neuro wants me to stop the prednisone cold turkey and get an emergency appointment with my eye doctor to determine if my vision change is due to a side effect from the prednisone or due to my Chiari. I have an appointment tomorrow with my eye doc and wednesday with my neuro.
I am really freaked out. My vision is not something that I want to play around with. I already have significant peripheral vision loss.
Has anyone else had this reaction to prednisone or similar problems from their Chiari?
I'm sorry you're having such a hard time! I've noticed significant vision loss since I've been diagnosed with Chiari. I haven't take Prednisone with my Chiari though. I had years ago, enough that my face got REALLY fat but don't remember any vision changes then. I like to research meds on Webmd, especially if I'm having side effects? I also really like Conquerchiari.org there is a ton of info there too. What I've noticed with my vision is when I'm looking at something up close it takes awhile for me to be able to focus on something far away, if that makes any sense? I haven't bothered seeing an ophthalmologist because at this point I think it would be a waste. My Chiari has definitely affected my sight so I don't know how I would be able to get an accurate eye test? I wonder with the prednisone since your eyes were dilated that it had the same effect on your headaches? I've been told by a friend that medicinal marijuana in a pill relaxes you so that everything opens up. I'm wondering if that is the same with mega doses of steroids? Definitely not an expert on medicinal marijuana but my friend swears by it. With all the pressure in the neck and eyes, I have that too, it definitely makes sense how releasing that pressure would bring relief. Back to the eyesight I always wondered how dilated pupils would affect my migraines since you're allowing in more light? With the long lasting migraines, I used to be able to break the cycle but I can't anymore. What I have to do is try different meds together that are safe and I usually can find some combo that works for awhile. I'm working with pain blockers right now because I don't like taking painkillers. Let me know if I can help in any other way? Sorry this is so all over the place my teenager called from College because her roommates were keeping her up so I made her take the phone to one of them. I can't show up there so I just have to play Mom on the phone and make sure it doesn't backfire on my daughter. Oh, I do not miss those days! ;) I hope you get some relief soon. Tonight I'm going to try Benadryl, I've heard from some people that it helps with the migraines. Good luck.
I’m glad the optometrist caught that! The last thing any of us need is to get worse! I haven’t tried Topamax yet but it sounds like your reaction is from something else you have? As if having Chiari isn’t enough?! Please keep me updated on how you’re doing. I’m so glad you got the answer so quick.
Also ask your NL about Occipital Neuralgia Headaches. I can't take Topamax either and I have POTS. I can't believe they had you on that much Predisone. 60 mg a day is a lot. I Hope you start to feel better. Do you like your NL? Maybe your eye Dr. could recommend someone better trained in CM and all our issues.
I'm glad that I'm not the only one that thinks that 60 mg of Prednisone was excessive. I am not happy with that as a treatment option, and that is another thing I plan on talking with my NL about during our appointment tomorrow. I haven't seen my NL enough to know if she is as knowledgeable as I want her to be... I'm trying to give her a shot.
Ultimately, though, I am getting my info together to send to the Mayfield Chiari Clinic (I saw a non-chiari NS when I was diagnosed 2 years ago who said that my physical findings were severe enough that I should have surgery if my symptoms were intrusive to my life). I think I am going to end up getting more out of that interaction than my appointment with my NL.
TracyZ said:
Donna,
Also ask your NL about Occipital Neuralgia Headaches. I can't take Topamax either and I have POTS. I can't believe they had you on that much Predisone. 60 mg a day is a lot. I Hope you start to feel better. Do you like your NL? Maybe your eye Dr. could recommend someone better trained in CM and all our issues.