Heather_T Posted September 20, 2007 Share Posted September 20, 2007 I am feeling worse now since my treatments are done and I am off the decadron. I have been really dizzy and it is most of the day. My ears are so sensitive. I can hardly stand any loud noise and I have 2 little ones . My muscles are so achey and sensitive to the touch. Horrible headaches which I am sure that is from the decadron and my face looks like a blowfish. When does the swelling go down from the steroids??? Anyways has anyone had any of these side effects or whatever they are or should I call the doc? Thanks for any info. Quote Link to comment Share on other sites More sharing options...
recce101 Posted September 20, 2007 Share Posted September 20, 2007 Hi, Heather: Yes, I'd call the doc. You might have been taken off the Decadron faster than your body can handle. They might want to put you on a low dose for a while, then taper down from that. I haven't had radiation or an extended experience with Decadron, but that's what I've heard from others. The sensitive ears I do know something about, since (unrelated to cancer) I've had Meniere's syndrome since 1994. The sudden disabling attacks of vertigo and nausea are finally under control with medication, but the damage to hearing, primarily in the left ear, will be permanent. The hearing loss in that ear is somewhere between "severe" and "profound," but at the same time it's very sensitive to noise, or more accurately, to sound pressure waves. I carry a couple of foam earplugs in my pocket (you can get a dozen for a dollar or two) and stick one in my bad ear anytime I'm in a noisy environment -- helps a lot. If it's REALLY noisy, like a loud movie or screeching kids or a large gathering, I put one in my good ear also. It cuts out the bothersome noise and sound waves, but (surprisingly) allows normal conversation to come through nicely. I doubt if this problem will be permanent for you, but you might want to try the earplugs for now. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
mary colleen Posted September 20, 2007 Share Posted September 20, 2007 Heather, my husband completed WBR in late June. He has had a lot of trouble with the ear sensitivity, headaches, and dizziness. He did not take any Decadron with or after his treatment, so did not have the side effects associated with that. For the headaches, he prefers OTC meds and finds that aceteminophen works better than ibuprofen. We have also found that it is better to stay a bit ahead of them, and just take low doses of Tylenol 3-4 times daily. For the ears, he was diagnosed with fluid and inflammation in his ears (common with WBR),and was given steroid drops to use 3x daily. We saw a neurologist last week regarding (in addition to other things) the dizziness. He said that this is just going to take months to subside and that there is not a lot to do about it. I know this must be so hard for you with little ones at home. My husband is struggling with his recovery, and he gets to rest quietly at home all day. (Our kids are kinda sorta grown). I cannot imagine the willpower it takes you to mother young children right now. I really hope that you have some assistance. I say this especially because the neurologist stressed to us that rest and sleep are very important in this recovery period. Take good care of yourself, and yell out to friends and family for help if you need it. MC Quote Link to comment Share on other sites More sharing options...
raneyf Posted September 20, 2007 Share Posted September 20, 2007 My first day off decadron I had a horrible headache and started throwing up. They had me come to the ER for a quick scan and then gave me more decadron. I'm still tapering off of that, down to 1/2 mg per day. It was really no fun, so you might want to call the doc. Once I got the decadron and some Zofran and Morphine, I was o.k. and released that same day. I hope you feel better. Raney Quote Link to comment Share on other sites More sharing options...
fight Posted September 24, 2007 Share Posted September 24, 2007 Heather, Sorry I don't have any advice but I wanted to let you know I'm thinking of you and sending prayers that you feel better soon. Take Care, Rachel Quote Link to comment Share on other sites More sharing options...
donaght Posted September 29, 2007 Share Posted September 29, 2007 I had 15 days of wbr in January, 2007 to treat three brain tumours in the cerebellum. I was prescribed 4 mg, 4 times a day. When the radiation was completed, I was gradually weaned off the steroid. By that time, the drug had seriously affected my mental health. I was irritable, edgy, impulsive, ocasionally reckless. I was down to sleeping a maximum of 4 hours a night, even with sedatives. When I was awake, I was fully alert. So while a lot of overlooked chores were taken care off, I was building towards a serious crash. I as also waiting for radiation fatigue to manifest. As I reduced the intake of decadron, I began experiencing swelling (edema) in the face, neck, lower legs and arms. I also suffered from swollen hip and kneee joints. I was told the steroid caused the blood vessels to constrict creating pressure on the joints. As I feared the worst of the radiation fatigue and steroid withdrawl overlapped and I was left with little to do but manage the pain with Tylenol 3 and Advil. It seems to have worked; at least I was free of tumour trouble until the begining of September and was able to salvage a canoe trip and other summer activities with my two children (9 and 2). Good luck, Tom Quote Link to comment Share on other sites More sharing options...
alexan Posted September 29, 2007 Share Posted September 29, 2007 Dear Heather, I will call the dr. right away I did not have to use the decadron, but my face was swalen every morning,not other problems until 3 month latter tha I became really tired & not hungry at all. But now I am Ok. Hugs & a big pray for you bucky Quote Link to comment Share on other sites More sharing options...
DrWest Posted September 29, 2007 Share Posted September 29, 2007 Heather, It's pretty common to have headaches and other symptoms right after coming off of decadron for brain radiation. I usually have my patients go back up to the minimum dose of steroids they need to control the symptoms and then have them taper the steroids more slowly. Steroids are a great treatment for situations like brain swelling, so many times people just can't come off them that quickly, and I just have people take as little as they can get by with, and taper in as timely a way as possible. But some people need to be on steroids for a lot longer than others. It's absolutely worth being in close communication with my doctor. It's not uncommon for me to work for a long time with a patient and have them become sophisticated enough to be able to know exactly what they need and whether they need to increase their decadron (or potentially other steroid) dose. They just keep in good communication with me and my office, and we individualize the plan. -Dr. West Quote Link to comment Share on other sites More sharing options...
ursol Posted October 6, 2007 Share Posted October 6, 2007 heather, I'm sorry I don't have any advice on the topic to help, but I want you to know I'm thinking of you. I hope you feel better soon. Lilly Quote Link to comment Share on other sites More sharing options...
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