Guest guest Posted October 11, 2005 Report Share Posted October 11, 2005 yes, my hearing feels clogged up too. I wish I could get some of it back, but I fear I won't. I am on the edge of being able to function in a classroom. I retired from public educatio, but now I work in a junior college (3 classes). I also tutor one on one part time. I am able to handle that. I also babysit my 8 month old grandson full time. He is a good napper - thank God. My hearing loss is in both ears. My vertigo is mild now compared to four years ago. I couldn't walk without support. It is frustrating to deal with now. My hearing dr (today) said nothing about my getting hearing back - just suggested a Kocklear(spelling??) implant in the future. I wish I had a dr I could trust and believe in. Thurs it is off to the neurologist. I don't know who to see to help me. I refuse to see my pulmonary doctor again. He has had me on predisome for four years (no bone density test- no comment on this being a problem - no suggestion for a different medication.) Also, I've been on methotraxate for four years too. The last time I saw him, he did do a blood test for my liver - to see if metho had done any damage. I read on the internet, that test should be done once a year. I am going to find another dr. hopefully one that is more in tune with sarc. I guess today is ramble day - I am so fed up with drs. Maybe I can find some people in Indy who have some helpful info. I look forward to seeing all my sisters Fri night and the conference on Sat. DotNeuroSarcoid66@... wrote: Dear Dot, I apologize for not being up on all my posts and therefore your history etc. The vertigo and hearing loss you describe however sound just like the symptoms that were so very bad for me when I had my initial flare that was so bad way back five years ago. (I had of course been sick long before just hadnt been told what it was and hadnt taken it seriously until it totally took me down so badly). I too am / was a teacher. I teach elementary - usually grade 2, but have taught all grades at this point. I was administration for sometime as well. Since being too ill to work I tutor one on one as I am able to. When it all first hit me back then, I had had bouts of it before, but that time was different and severe. I was probably like you prior to this major attack. The hearing was effected and the vertigo would come and go. Then from one minute literally to the next I couldnt get up anymore and things quickly spiralled out of control. It was cranial nerve involvment and meningitis that caused it and probably way back then as well vascular involvment that was just not included in the diagnosis at the time. The hearing and vertigo and balance problems did get much better with that initial steroid treatment though it took a lot of time, espeicially for the balance and vestibular troubles and they are still things that i struggle with daily, however i am able to walk on a sidewalk and cross the lines or on a patterned floor and cross the colors on it or walk on uneven surfaces like gravel for example without feeling like i am going to walk off an edge constantly or fall over all the time. back then i would literall stop and freeze each time i would come to a break in the pattern on a tiled floor for example, especially if it was a contrasted color like black and white. I would feel i was stepping off of something and not know where i was putting my foot, it was terrible. i couldnt walk without looking down watching my feet or i would be really confused trying to take in my peripheral vision and at the same time not knowing where i was going/where i was stepping. unever surfaces were very scary to me for a long time i just couldnt tell where i was stepping or where things were. doesnt make sense does it? it was so stupid. stairs were out of the question without people on the sides of me. i was terrified of them and sure i was going to tumble down them. my hearing in my left side was totally gone for soemtime as well. it came and went with various flares. but at that time it totally went. but it came back, i have trouble hearing with background noise now, or with low toned voices. i also have trouble sometimes understanding what people are saying, i dont know if that is hearing or something else more cognitive. and i dont think i want to know right now. its not a problem all the time, so i think i am not going to pursue finding this out for the time being ... sometimes you just dont want to know the answer to certain questions. well my point in it all is that this is something that can hopefully be treated if given the right meds, depending on the cause of the problems to start with. i hope they have done all the right testing to find the reasons and that you are getting proper treatment. balance and hearing trouble is an awful thing to live iwth. i hope you are doing alright and get some rest... as for how to alleviate the symptoms quickly....?? is your hearing loss on one side or both?? do you get headaches on one side? this will sound odd but is your vertigo or balance more one sided than the other do you fall to the left for example? does your head feel "swollen and clogged" kind of on one side?? sounds silly doesnt it? but my head feels this way a lot, and at those times I have problems. I dont know that it really helps Dot, but I am known for keeping an ice pack on the side of my head effected most just behind my ear and low down where I feel like its botherinig me most. This is instinct, but it seems to me if soemthing is swollen ice should help. How ridiculous is that? But really in my mind it has helped me many times. Take care, I say call in sick. and rest, after going to the Dr. Kim NS Moderator Yahoo! Music Unlimited - Access over 1 million songs. Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2005 Report Share Posted October 11, 2005 Dot I am sorry for your troubles. How has your prednisone treatment been? What was your initial dose I mean and for how long? and what are you on now? My hearing and the severe vestibular troubles did settle oiut iwth the initial very high doses of pred. , well the hearing quicker than the vestibular troubles as i said before. I decided I had had enough of the pred treatment after sometime and my Dr, Dr Baughman allowed me to tpaer myself off the drug, of course I was on other immunosuppressants at the time and had to move to stronger ones once I was totally off the prednisone. Perhaps I made the wrong decision considering the state of my health today. I do think we owe it to ourselves to search for a second or third opinion however when we are unhappy with our Dr.s Dont overextend yourself Dot and push too much, you will pay for it in the long run. It is best to take on what you can do without exhausting yourself. I can speak from experience when I say overextending will only lead to major flares and damage that can not always be reversed. The hardest thing about being chronically ill, in my mind anyway, is pacing yourself and limiting yourself when you are not feeling totally "done in", not pushing yourself all the wya to your limits to start with. But if I knew then what I know now, I would live by that philosophy, stopping while I still had a lot left over to give. In this way you could perhaps prevent flare ups and damage from occuring. AT the point I am now, I can never stop while having anything left over. No matter what I do it is too much. I did this to myself by always having to push so hard, by never listening to my body both before my dx and afterwards when i knew better. LESSON FOR THE DAY: STOP WHILE YOU STILL HAVE A LOT LEFT OVER TO GIVE. take care and remember the important people and things in your life that you want to give to love kim ns moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Kim, I started off at 100 mg of predisome four years ago. For the last year I am at 7.5 mg. I don't have any other immunosuppressants that I am taking. What are other immunosuppressants that work for sarc? DotNeuroSarcoid66@... wrote: Dot I am sorry for your troubles. How has your prednisone treatment been? What was your initial dose I mean and for how long? and what are you on now? My hearing and the severe vestibular troubles did settle oiut iwth the initial very high doses of pred. , well the hearing quicker than the vestibular troubles as i said before. I decided I had had enough of the pred treatment after sometime and my Dr, Dr Baughman allowed me to tpaer myself off the drug, of course I was on other immunosuppressants at the time and had to move to stronger ones once I was totally off the prednisone. Perhaps I made the wrong decision considering the state of my health today. I do think we owe it to ourselves to search for a second or third opinion however when we are unhappy with our Dr.s Dont overextend yourself Dot and push too much, you will pay for it in the long run. It is best to take on what you can do without exhausting yourself. I can speak from experience when I say overextending will only lead to major flares and damage that can not always be reversed. The hardest thing about being chronically ill, in my mind anyway, is pacing yourself and limiting yourself when you are not feeling totally "done in", not pushing yourself all the wya to your limits to start with. But if I knew then what I know now, I would live by that philosophy, stopping while I still had a lot left over to give. In this way you could perhaps prevent flare ups and damage from occuring. AT the point I am now, I can never stop while having anything left over. No matter what I do it is too much. I did this to myself by always having to push so hard, by never listening to my body both before my dx and afterwards when i knew better. LESSON FOR THE DAY: STOP WHILE YOU STILL HAVE A LOT LEFT OVER TO GIVE. take care and remember the important people and things in your life that you want to give to love kim ns moderator Yahoo! Music Unlimited - Access over 1 million songs. Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2005 Report Share Posted October 13, 2005 Dot, I was thinking you were on methotrexate for some reason, that is another immunosuppresant used in NS. Immuran is another, I have taken Cellcept for sometime now as well. The other drugs such as cytoxin or remicade that some take are stronger and used by IV. 100mg is a strong dose of pred. , did it get things under control for you for a while? have you been on pred this whole time? Take care, I hope you are feeling better, Kim NS Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2005 Report Share Posted October 13, 2005 Dot, we'll be able to talk about some of this in person next weekend, but I did want to make a couple of comments. As for the Cochlear implant, all the research I've done says that they are used for children with profound hearing loss that isn't correctable with hearing aids, and that the earlier they are implanted, the better. They have been used in older children & adults, but usually the person still needs to learn to read lips & use sign language. In my case, I have nerve damage, so the Cochlear implant wouldn't help. Re: the liver tests. Dr. Baughman of the U. of Cincinnati has done extensive research on sarc. His research has shown that the blood tests do not reflect the actual liver damage. At his clinic, patients on Mtx are evaluated when their total dose has reached 2 grams (2000mg). So if a patient takes 10 mg/week, it would take about 4 years to reach 2 grams. In my case, my doctor had me on 25mg/wk. until after I had seen Baughman, then he decreased it to 15/wk. If I had stayed on the 25, I would have reached 2 grams in about 18 months. Anyway, at the 2 gram point, the patient is evaluated for improvement. If the Mtx. is helping, then a liver biopsy is done to determine if it's safe to continue the drug. So I don't know what dose you have been on, but if it's been 10+ mg/wk, you probably need a liver biopsy. Now this is all assuming that you are taking it orally. Some doctors give it IM, which bypasses the liver. Anyway, we can talk about it at the retreat. Did you get the name of the hotel & the directions? I'm looking forward to meeting you! Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: DOTDate: Tue, 11 Oct 2005 13:37:01 -0700 (PDT) yes, my hearing feels clogged up too. I wish I could get some of it back, but I fear I won't. I am on the edge of being able to function in a classroom. I retired from public educatio, but now I work in a junior college (3 classes). I also tutor one on one part time. I am able to handle that. I also babysit my 8 month old grandson full time. He is a good napper - thank God. My hearing loss is in both ears. My vertigo is mild now compared to four years ago. I couldn't walk without support. It is frustrating to deal with now. My hearing dr (today) said nothing about my getting hearing back - just suggested a Kocklear(spelling??) implant in the future. I wish I had a dr I could trust and believe in. Thurs it is off to the neurologist. I don't know who to see to help me. I refuse to see my pulmonary doctor again. He has had me on predisome for four years (no bone density test- no comment on this being a problem - no suggestion for a different medication.) Also, I've been on methotraxate for four years too. The last time I saw him, he did do a blood test for my liver - to see if metho had done any damage. I read on the internet, that test should be done once a year. I am going to find another dr. hopefully one that is more in tune with sarc. I guess today is ramble day - I am so fed up with drs. Maybe I can find some people in Indy who have some helpful info. I look forward to seeing all my sisters Fri night and the conference on Sat. DotNeuroSarcoid66@... wrote: Dear Dot, I apologize for not being up on all my posts and therefore your history etc. The vertigo and hearing loss you describe however sound just like the symptoms that were so very bad for me when I had my initial flare that was so bad way back five years ago. (I had of course been sick long before just hadnt been told what it was and hadnt taken it seriously until it totally took me down so badly). I too am / was a teacher. I teach elementary - usually grade 2, but have taught all grades at this point. I was administration for sometime as well. Since being too ill to work I tutor one on one as I am able to. When it all first hit me back then, I had had bouts of it before, but that time was different and severe. I was probably like you prior to this major attack. The hearing was effected and the vertigo would come and go. Then from one minute literally to the next I couldnt get up anymore and things quickly spiralled out of control. It was cranial nerve involvment and meningitis that caused it and probably way back then as well vascular involvment that was just not included in the diagnosis at the time. The hearing and vertigo and balance problems did get much better with that initial steroid treatment though it took a lot of time, espeicially for the balance and vestibular troubles and they are still things that i struggle with daily, however i am able to walk on a sidewalk and cross the lines or on a patterned floor and cross the colors on it or walk on uneven surfaces like gravel for example without feeling like i am going to walk off an edge constantly or fall over all the time. back then i would literall stop and freeze each time i would come to a break in the pattern on a tiled floor for example, especially if it was a contrasted color like black and white. I would feel i was stepping off of something and not know where i was putting my foot, it was terrible. i couldnt walk without looking down watching my feet or i would be really confused trying to take in my peripheral vision and at the same time not knowing where i was going/where i was stepping. unever surfaces were very scary to me for a long time i just couldnt tell where i was stepping or where things were. doesnt make sense does it? it was so stupid. stairs were out of the question without people on the sides of me. i was terrified of them and sure i was going to tumble down them. my hearing in my left side was totally gone for soemtime as well. it came and went with various flares. but at that time it totally went. but it came back, i have trouble hearing with background noise now, or with low toned voices. i also have trouble sometimes understanding what people are saying, i dont know if that is hearing or something else more cognitive. and i dont think i want to know right now. its not a problem all the time, so i think i am not going to pursue finding this out for the time being ... sometimes you just dont want to know the answer to certain questions. well my point in it all is that this is something that can hopefully be treated if given the right meds, depending on the cause of the problems to start with. i hope they have done all the right testing to find the reasons and that you are getting proper treatment. balance and hearing trouble is an awful thing to live iwth. i hope you are doing alright and get some rest... as for how to alleviate the symptoms quickly....?? is your hearing loss on one side or both?? do you get headaches on one side? this will sound odd but is your vertigo or balance more one sided than the other do you fall to the left for example? does your head feel "swollen and clogged" kind of on one side?? sounds silly doesnt it? but my head feels this way a lot, and at those times I have problems. I dont know that it really helps Dot, but I am known for keeping an ice pack on the side of my head effected most just behind my ear and low down where I feel like its botherinig me most. This is instinct, but it seems to me if soemthing is swollen ice should help. How ridiculous is that? But really in my mind it has helped me many times. Take care, I say call in sick. and rest, after going to the Dr. Kim NS Moderator Yahoo! Music Unlimited - Access over 1 million songs. Try it free. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2005 Report Share Posted October 13, 2005 Dot, aren't you on Methotrexate? That's an immune suppressant. What did your doctor tell you it was for? Or do I have you all mixed up with someone else? Very possible! Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: DOTDate: Wed, 12 Oct 2005 09:21:02 -0700 (PDT) Kim, I started off at 100 mg of predisome four years ago. For the last year I am at 7.5 mg. I don't have any other immunosuppressants that I am taking. What are other immunosuppressants that work for sarc? DotNeuroSarcoid66@... wrote: Dot I am sorry for your troubles. How has your prednisone treatment been? What was your initial dose I mean and for how long? and what are you on now? My hearing and the severe vestibular troubles did settle oiut iwth the initial very high doses of pred. , well the hearing quicker than the vestibular troubles as i said before. I decided I had had enough of the pred treatment after sometime and my Dr, Dr Baughman allowed me to tpaer myself off the drug, of course I was on other immunosuppressants at the time and had to move to stronger ones once I was totally off the prednisone. Perhaps I made the wrong decision considering the state of my health today. I do think we owe it to ourselves to search for a second or third opinion however when we are unhappy with our Dr.s Dont overextend yourself Dot and push too much, you will pay for it in the long run. It is best to take on what you can do without exhausting yourself. I can speak from experience when I say overextending will only lead to major flares and damage that can not always be reversed. The hardest thing about being chronically ill, in my mind anyway, is pacing yourself and limiting yourself when you are not feeling totally "done in", not pushing yourself all the wya to your limits to start with. But if I knew then what I know now, I would live by that philosophy, stopping while I still had a lot left over to give. In this way you could perhaps prevent flare ups and damage from occuring. AT the point I am now, I can never stop while having anything left over. No matter what I do it is too much. I did this to myself by always having to push so hard, by never listening to my body both before my dx and afterwards when i knew better. LESSON FOR THE DAY: STOP WHILE YOU STILL HAVE A LOT LEFT OVER TO GIVE. take care and remember the important people and things in your life that you want to give to love kim ns moderator Yahoo! Music Unlimited - Access over 1 million songs. Try it free. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2005 Report Share Posted October 16, 2005 Hi Rose, If the nerve is the problem then yes, the cochlear implant probably won't work. The implant by-passes the cochlear and attached to the auditory nerve. But new stuff is coming and who knows what will happen. Let's hope. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2005 Report Share Posted October 16, 2005 Hi Rose, If the nerve is the problem then yes, the cochlear implant probably won't work. The implant by-passes the cochlear and attached to the auditory nerve. But new stuff is coming and who knows what will happen. Let's hope. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2005 Report Share Posted October 16, 2005 Hi Rose, If the nerve is the problem then yes, the cochlear implant probably won't work. The implant by-passes the cochlear and attached to the auditory nerve. But new stuff is coming and who knows what will happen. Let's hope. Janet Quote Link to comment Share on other sites More sharing options...
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