barbvh Posted July 22, 2009 Share Posted July 22, 2009 Hi Everyyone, Have had a handful of phantom smells (olfactory halluciantions) and increased headaches over the last 3 weeks or so. I am tapering off prednisone, which I have been on for a bit over 3 months for lung inflammation. I have had some side effects from the predinsone, so I figured the smells which are kind of skunk like and increased headaches were from tapering off the prednisone. When I told my neurologist friend yesterday, he said I needed a brain MRI and soon. I had MRI done last night. Question - Has anyone ever experienced phantom smells? If so what were they from? My personal experience is two-fold. My daughter gets them sometimes along with aura when she has a migraine and my son had these and they were found to be seizure from a brain tumor. Hope to get the results tomorrow, but am a bit concerned. Thanks, Quote Link to comment Share on other sites More sharing options...
fillise Posted July 23, 2009 Share Posted July 23, 2009 Barb, I think your own experience with your daughter and son shows the smells may be coming from a wide variety of causes. I'm glad you got the MRI and will hopefully know soon. My mom gets "headacheless" migranes that cause a wide variety of symptoms. The first time she experienced it after Dx we were scared to death, but it turned out not to be anything but the migranes. I hope that's what you find out too. Susan ps--again, the strangeness of LC world when we are rooting for the migrane! Quote Link to comment Share on other sites More sharing options...
jaminkw Posted July 23, 2009 Share Posted July 23, 2009 Barb, sound like you all have a genetic predisposition to a peculiar symptom to a variety of causes. So why can't it be tapering off the prednisone? I'm for that, if not I'll go with Susan on the migraines. I'm putting this thread on my "watch" list so be sure to let us know those results. Sending many hopeful wishes your way. Judy in Key West Quote Link to comment Share on other sites More sharing options...
Patti B Posted July 23, 2009 Share Posted July 23, 2009 Barb- I have heard that tapering off prednisone can be a little weird. Thats why they have you do it gradually. I will hope for that, and if not, I vote for migraines!!!! (Like Susan said, only here....) Let us know the results of the MRI as soon as you find out. Will be thinking of you. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
barbvh Posted July 23, 2009 Author Share Posted July 23, 2009 GREAT NEWS!!! My MRI was fine. He said the smells and headaches are probably from tapering off the prednisone. I actually had more side effects during the taper than at my full dose. Tomorrrow is my last dose. I imagine it will take my body a while to get back to normal:) Thanks for the support!! Quote Link to comment Share on other sites More sharing options...
Patti B Posted July 23, 2009 Share Posted July 23, 2009 YEAH!!!!! CONGRATS ON BEING AN OFFICIAL MEMBER OF THE EMPTY HEAD CLUB!!!!!! I am so happy for you - may you continue to feel better each day!!!!! Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
barbvh Posted July 23, 2009 Author Share Posted July 23, 2009 Patti, Thanks for the welcome to the EMPTY HEAD CLUB! My family would probably say I've been like that for years:) Quote Link to comment Share on other sites More sharing options...
Patti B Posted July 23, 2009 Share Posted July 23, 2009 Barb- Even though I failed to get in the club, I am SURE my husband and Nick think I belong there!!! Actually, all my friends, too!!!! Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
fillise Posted July 23, 2009 Share Posted July 23, 2009 Woo Hoo for the EMPTY HEAD CLUB!!!!!!! Susan Quote Link to comment Share on other sites More sharing options...
jaminkw Posted July 24, 2009 Share Posted July 24, 2009 YEEEAAAHHH Barb. Couldn't be happier about the news. You don't even have to deal with migraines. Judy In Key West Quote Link to comment Share on other sites More sharing options...
dahknee Posted July 24, 2009 Share Posted July 24, 2009 Yay Barb, I'm just starting to taper off the dreadnisone too but not experiencing anything wierd,, Yet. About 8 or 9 years ago I was put on Effexor for depression and I had a wierd smell hallucination that lasted until I was off of it. I just think the human body can do and conjur up alot of wierdness. I guess we all are unique and have our own sets of side effects to life. By the way Barb is your lung inflammation all cleared up? Mine still seems to be very bad but the doc just wants to get me off the pred and I have to say I agree, it doesn't seem to help much with the breathing issues anyway but my head has sure gotten round. Just wierd stuff. Donny Quote Link to comment Share on other sites More sharing options...
barbvh Posted July 24, 2009 Author Share Posted July 24, 2009 Hi Donny, As of mid June when I had completed 7 weeks at 30mg the PET showed the mass had reduced by about 75% and all my lymph nodes were normal for the first time in 2 years. Today I complete my taper. YEAH!!! The hope is when they repeat the PET mid Sept the inflammation will not have returned. Today I celebrate not only the normal MRI,but the end of this round of prednisone, or as you say dreadnisone. LOL Can't wait for the side effects to subside. Hope that your taper goes with ease:) Quote Link to comment Share on other sites More sharing options...
Eileen Posted July 26, 2009 Share Posted July 26, 2009 Glad your MRI turned out great--here's wishing nothing but good results for you from now on !! best, Quote Link to comment Share on other sites More sharing options...
barbvh Posted July 26, 2009 Author Share Posted July 26, 2009 Thanks Eileen:) Quote Link to comment Share on other sites More sharing options...
fillise Posted July 26, 2009 Share Posted July 26, 2009 Horray for the good MRI results! Susan Quote Link to comment Share on other sites More sharing options...
Barb73 Posted July 26, 2009 Share Posted July 26, 2009 Barb, The very best news is that you have an EMPTY HEAD. Congratulations! I love good news. It must have given you a great big smile. Barbara Quote Link to comment Share on other sites More sharing options...
Carleen Posted July 27, 2009 Share Posted July 27, 2009 Congratulations Barb!!! I'm so happy to hear you are a member of the empty headed club. That is such GREAT news! ((((BARB))) Quote Link to comment Share on other sites More sharing options...
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