Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
I have had a few people ask if I am OK since I have not been online in a while. I have been on antibiotics twice in the last 4 weeks. My ear will has lots of pressure and it simply will not clear. It got so bad at one point that I could not move even an inch without the room spinning and being nauseous. I have been exhausted. I am getting my infusion right now so I thought I could send a note to just let everyone know I am still here.
I have an appointment with a neck/throat specialist to see if there is something structurally wrong that is causing the blockage problems. I am on floanse,benadryl, Muchinex-D,and zyrtec. I leave for Florida a week from today so hopefully the doctor will have some idea of how to get rid of the pressure that has been a constant for over 3 weeks The pressure goes from mild to moderately severe (severe is just before a rupture) and everywhere in between. When it is on the more severe side my neck, jaw and temple all start to ache as well. Both times my ear drum ruptured it started like this and I don't want that to happen again. I have had it treated with steroids previously and that helped reduce the pressure but they are reluctant to give them since the CVID diagnosis.
I feel sure my hearing has been affected by the infections and ruptures so I am happy to have my hearing tested. I really hope I start feeling better before we get to Disney. My sitter is going with us on this trip so I am going to try to listen to my body and not push too hard. We have a time share at Disney (my sister lives close by) so I don't have the same pull to do everything and stay at the parks all day everyday. However, I usually like to do more than I should so I really need to remember to slow down and take care of myself. I am still getting use to this new way of thinking. My goal on this trip is to come back and be able to relax at home instead of making an appointment to see the doctor before I unpack.
Thanks, for listening.
Marilyn
I got the name of this specialist from someone else on this board with similar sinus/ear problems so I am hopeful. I could not get in with the doctor on short notice but I am with her physicians assistant and the Dr. is available if the PA wants her to step in. They will also have me see their audiologist before I see the PA.
I have an appointment with a neck/throat specialist to see if there is something structurally wrong that is causing the blockage problems. I am on floanse,benadryl, Muchinex-D,and zyrtec. I leave for Florida a week from today so hopefully the doctor will have some idea of how to get rid of the pressure that has been a constant for over 3 weeks The pressure goes from mild to moderately severe (severe is just before a rupture) and everywhere in between. When it is on the more severe side my neck, jaw and temple all start to ache as well. Both times my ear drum ruptured it started like this and I don't want that to happen again. I have had it treated with steroids previously and that helped reduce the pressure but they are reluctant to give them since the CVID diagnosis.
I feel sure my hearing has been affected by the infections and ruptures so I am happy to have my hearing tested. I really hope I start feeling better before we get to Disney. My sitter is going with us on this trip so I am going to try to listen to my body and not push too hard. We have a time share at Disney (my sister lives close by) so I don't have the same pull to do everything and stay at the parks all day everyday. However, I usually like to do more than I should so I really need to remember to slow down and take care of myself. I am still getting use to this new way of thinking. My goal on this trip is to come back and be able to relax at home instead of making an appointment to see the doctor before I unpack.
Thanks, for listening.
Marilyn
I got the name of this specialist from someone else on this board with similar sinus/ear problems so I am hopeful. I could not get in with the doctor on short notice but I am with her physicians assistant and the Dr. is available if the PA wants her to step in. They will also have me see their audiologist before I see the PA.
Steroids is the only thing that reduces the inflammation and swelling of the eustation tubes so the fluid build up can drain properly down the back of your throat. I have had to have my left ear drum ruptured surgically several time due to the pressure. Never once has anyone suggested tubes. Go figure. That would be awesome. Jealous.