Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 Funny you should say that Marie. My sudden hearing loss was from suddenly stopping Prednisone, COLD TURKEY ! Marcus who should know better than to organise his own medication treatments :-( Oh well 15 years too late now................. Marie wrote : > call quickly and get a prescription for steroids; if gotten quickly enough, > sometimes this will reduce swelling and bring hearing back. Marie > -----Original Message----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 NOOOOOOOOOO!!!! not the p word! Marcus, did you have nasty withdrawal when you stopped the deceptive little devil drugs? How long had you been on them before you stopped COLD TURKEY? I'd issue a warning to anyone considering steroids as a means to restoring/preserving hearing: they can turn into a very, very slippery slope without you realizing it until you're in way too deep. They are great the first couple times the hearing takes a dive and they restore it back to a relatively decent level, but then it takes more and more... and the level has to be maintained or it takes another dive... and before you know it, you've been on prednisone for 5 years and then you have to get the tumor out because it's huge and now the surgery's riskier and after you lose your hearing in the surgery, it's time to get weaned off the prednisone... and with that comes the 6 months of nausea and headaches, muscle cramps, steroid myopathy for another few years... intestines that have turned to jelly (didn't even mention the water retention that stressed the body out for a couple years while taking the prednisone...) I can't say don't do it short-term, b/c my memories of the frame of mind of that time is still so vivid (waking up and not understanding voices--so horrifying the first few times) even though that was nearly ten years ago... just please be careful that it doesn't turn into an indefinite period of time (dependent only on the last absolute moment of requiring surgery). My experience is probably unusual, but looking back I know I was just doing what the situation called for using what I knew at that time. Please let V know she's not alone... and many have traveled her path and survived. Wishing you all strength... so a funny... we had some wicked winds go through here last Wednesdays... an outbreak of tornado(e)s in the area... and the beautiful evergreens that lined the west side of our property were blown in towards the house... looked ready to fall... so my Dad and some of his buddies had to take them down before they fell uncontrollably... I ran to Arby's to pick-up lunch for the workers... got 3 sets of the 5 jr's for $5... that's 15 sandwiches... plus 4 lg. fries and another sandwich. I finish the order, it's confirmed (told her I couldn't hear well and she repeated it all very clearly back to me...) and then she says something else... something I wasn't quite expecting... " Is this for here or to go? " .... and she was serious. 8~) Love, Hugs, and Smiles, >> Date: Wed, 31 Oct 2001 20:23:18 +1000 Funny you should say that Marie. My sudden hearing loss was from suddenly stopping Prednisone, COLD TURKEY ! Marcus who should know better than to organise his own medication treatments :-( Oh well 15 years too late now................. Marie wrote : > call quickly and get a prescription for steroids; if gotten quickly enough, > sometimes this will reduce swelling and bring hearing back. Marie > -----Original Message----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 > " Is this for here or to go? " > > ... and she was serious. > > 8~) > Love, Hugs, and Smiles, I wasn't on steriods near as long as describes, maybe just 6 months and still experienced most of the withdrawal symptoms she describes, nasuea.. and worst of all muscle cramps that feel like your muscles are getting pins shoved through them. and .. you must have looked hungry. My lipreading isn't the greatest but if I have an idea of what they are gonna say, I can usually catch it. This works well in restuaraunts and Fast Food places since you usually know what they are gonna ask. My new bane of the world is starbucks since they have little quirky names for everything and I have no idea what they are asking. I JUST WANT HOT CHOCOLATE. Plain hot chocolate.. Pretty much what I kept saying until the girl grabbed some cups and wanted me to point to a size Pete -- Brayman ICQ # 66709621 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 Craig: I haven't had that happen yet, but my doctor described it and said it could happen and IF IT DID to contact him immediately! They can put you on steroids I guess for about 4 days and then operate?! Anyway contact the doctor NOW! Charlotte Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 jAMIE, When I was still trying to save my hearing, it would take a nosedive, I would call Doc, and he would call in ONE prescription of steroids which would last maybe 10 days. Then that was it. This happened about 3 times over 2 years, but no side effects, as I was never on them very long. I would think/hope docs today would know better than to leave you on steroids long term--but you better make sure yourself. Marie Re: Severe overnight hearing loss >NOOOOOOOOOO!!!! >not the p word! Marcus, did you have nasty withdrawal when you stopped the deceptive little devil drugs? How long had you been on them before you stopped COLD TURKEY? I'd issue a warning to anyone considering steroids as a means to restoring/preserving hearing: they can turn into a very, very slippery slope without you realizing it until you're in way too deep. They are great the first couple times the hearing takes a dive and they restore it back to a relatively decent level, but then it takes more and more... and the level has to be maintained or it takes another dive... and before you know it, you've been on prednisone for 5 years and then you have to get the tumor out because it's huge and now the surgery's riskier and after you lose your hearing in the surgery, it's time to get weaned off the prednisone... and with that comes the 6 months of nausea and headaches, muscle cramps, steroid myopathy for another few years... intestines that have turned to jelly (didn't even mention >the water retention that stressed the body out for a couple years while taking the prednisone...) > >I can't say don't do it short-term, b/c my memories of the frame of mind of that time is still so vivid (waking up and not understanding voices--so horrifying the first few times) even though that was nearly ten years ago... just please be careful that it doesn't turn into an indefinite period of time (dependent only on the last absolute moment of requiring surgery). My experience is probably unusual, but looking back I know I was just doing what the situation called for using what I knew at that time. Please let V know she's not alone... and many have traveled her path and survived. Wishing you all strength... > > >so a funny... we had some wicked winds go through here last Wednesdays... an outbreak of tornado(e)s in the area... and the beautiful evergreens that lined the west side of our property were blown in towards the house... looked ready to fall... so my Dad and some of his buddies had to take them down before they fell uncontrollably... I ran to Arby's to pick-up lunch for the workers... got 3 sets of the 5 jr's for $5... that's 15 sandwiches... plus 4 lg. fries and another sandwich. I finish the order, it's confirmed (told her I couldn't hear well and she repeated it all very clearly back to me...) and then she says something else... >something I wasn't quite expecting... > " Is this for here or to go? " > >... and she was serious. > >8~) >Love, Hugs, and Smiles, > >>> >Date: Wed, 31 Oct 2001 20:23:18 +1000 > > >Funny you should say that Marie. My sudden hearing loss was from suddenly >stopping Prednisone, COLD TURKEY ! >Marcus who should know better than to organise his own medication treatments >:-( >Oh well 15 years too late now................. > >Marie wrote : > >> call quickly and get a prescription for steroids; if gotten quickly >enough, >> sometimes this will reduce swelling and bring hearing back. Marie >> -----Original Message----- > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 here here. I was on prednisone for a SHORT period and hated it thoroughly. My dog was on it too for severe arthritis, he lost his bowel and bladder control from the med (when he was off it he d have control but in severe pain, makes me wonder what it wud do to people) and we put him to sleep. Lori Phibbs wrote: You poor thing you are sure tough in the fibre to go thru all that. Ive had bad luck with steriods too but i only took them a bit so weight gain was my prob. I actually blame Predisone for G'ma cancer and death, it is a powerful antiflammitory and stifles your bodies own protection mechanisms leaving you vunerable to EVERYTHING~~Lowi----- Original Message -----From: L. Przybysz To: <NF2_Crew >Sent: Wednesday, October 31, 2001 5:51 AMSubject: Re: Severe overnight hearing loss > NOOOOOOOOOO!!!! > not the p word! Marcus, did you have nasty withdrawal when you stopped the deceptive little devil drugs? How long had you been on them before you stopped COLD TURKEY? I'd issue a warning to anyone considering steroids as a means to restoring/preserving hearing: they can turn into a very, very slippery slope without you realizing it until you're in way too deep. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 Hi Marie, I didn't mean to sound like your suggestion was a bad one. I'm glad you suggested the option because it brought out other people's experiences, which gives a good range of things to consider in deciding whether it's the path someone really wants to take. I don't think I would have roused the prednisone ghosts if Marcus hadn't used the name. lol! It is still an option and I think it's realistic to take advantage of it as long as people are aware of the less positive aspects that could accompany it. I do wonder if other steroids would be somewhat effective in doing the same with less damage as we've seen can occur even in the short-term. Since I can no longer tolerate prednisone, my post-op steroid is dexamethasone. (Jennette's description of the healing period she got using prednisone post-op was similar to mine with dexamethasone after my last surgery--really great and no withdrawal effects!) Anyhow, the way your experience was is how mine started. We never intended to use it as long as we did, it just happened. Looking back now, it's sort of scary how natural it seemed to use it as long as it was allowing me to retain some usable hearing. While I was taking the prednisone, after awhile of being on it, it seemed like the main side effects were weight gain (like for Lori), " the runs " after eating meals, and then my mental workings were kind of clouded (I think I could've gotten the college Calculus if it hadn't been for that! lol) That whole phase of hearing fluctuation/loss is such an uncertain period of time. I don't think we expected the hearing to stick around (even at a pretty bad level) for 5 more years. One huge good thing that came out of it was that I got 3 years more of playing the bari sax in concert, marching, pep, and jazz bands. Since I discontinued sports b/c of the spinal tumors and decline in health while on the prednisone, I think playing an instrument was a very important stress reliever for me at that time. Hugs and Smiles, >> Date: Wed, 31 Oct 2001 15:35:45 -0500 jAMIE, When I was still trying to save my hearing, it would take a nosedive, I would call Doc, and he would call in ONE prescription of steroids which would last maybe 10 days. Then that was it. This happened about 3 times over 2 years, but no side effects, as I was never on them very long. I would think/hope docs today would know better than to leave you on steroids long term--but you better make sure yourself. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2001 Report Share Posted November 1, 2001 Herro , I think I was on the P drug for around 12 months. It was a long time ago but I think I did reduce the dose for a few months. I just got tired of it, and it gives you a little HUMP BACK just below the neck. Standard symptom I'm told. So one day I just stopped. ZAP hearing went down in one ear by around 50 % in an instant within a day of stopping. This was the first sign of AN's so I guess I had it coming sooner or later. I was 26 I think at the time. M whos so tired hes off to bed at 9PM. > NOOOOOOOOOO!!!! > not the p word! Marcus, did you have nasty withdrawal when you stopped the deceptive little devil drugs? How long had you been on them before you stopped COLD TURKEY? Quote Link to comment Share on other sites More sharing options...
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