Guest guest Posted June 7, 2003 Report Share Posted June 7, 2003 Kim, Where did you do the desen??? If not at Scripps I would second guess the results. I had a terrible reaction and got sick but this was a good sign that it was working. Where and who did you use to do the desen? Dawn Dawn, I did it at Scripps. Dr. son told me I was unique in my reaction. They expect an allergic reaction (which I also had) but not the violent stomach reaction that I also had. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Hi Tom, I really am sorry to hear this. It must be very demoralising after hoping it was your best chance. Obviously I'm no expert, but I would have thought that iut would have sensible to call it a day after you reacted to the 80mg. Then give you 80mg a day for the next week, then up the dose and keep it at that for the next week until you no longer eact, and keep going until you are desensitised. To go up on the same day when you have already reacted seems very strange - but then I know the American way is to do it quickly and the British way (the way I was desens) is to be very cautious and take it slow. The slow way may have suited you better. Regards BeckyTom Schultz <tschultz@...> wrote: I really need some feedback from the group. I have heard so many positive stories about members being desensitized to our aspirin allergy. I just spent 2-1/2 days in the ICU at the University of Minnesota Hospital in an attempt to be desensitized, but it was a failure. They started me out at 20 mg. and 3 hours later went up to 40 mg, and I had no problems. At 80 mg I started to sneeze and get congested, and so 3 hours later they repeated the 80 mg dosage. Still some congestion but no major problems. Three hours later they gave me 162 mg of aspirin and I had a huge reaction. My asthma kicked in, I was sneezing and blowing my nose and developed a rash that was mostly on my face, hands and feet, but also on other parts of my body. My hands and feet became very swollen and my eyes were red and itched. They pumped me full of prednisone and Benadryl through an IV, but by the next morning I was still feeling terrible. After calls to colleagues around the country, the supervising doctor decided to stop the procedure. I hoped that this was my chance to regain my sense of taste and smell after 12 years of misery and 5 surgeries. I have developed Osteopeania from all of the steroids, and really needed the aspirin desensitization to work. Has anyone else had a similar experience? Any suggestions? Tom in St. , MN From: samters [mailto:samters ] On Behalf Of asfysoSent: Sunday, June 08, 2008 1:01 PMsamters Subject: Re: Anyone have heart problems or chest pain? (long post) To be complete, I too have a personal interest in cardiovascularproblems because of a family history of (regular) angina, but not on the"Samter's side", as well as arrythmia on the Samter's side.Diagnosis - Samter's is somewhat under-diagnosed everywhere.Chest pain - I used to have frequent intercostal pain, sometimes severe,but it completely disappeared when I switched the car seat for astiffer, more anatomic model and started driving in a more symetricposition - both arms on the wheel at the same level.Ear problems - I remember reading somewhere that a good number (maybe aquarter?) of Samter's patients have ear problems too ; it is conceivablethat the inflammation of the nasal mucosa can "travel" a little withtime, spreading around, and once it reaches the eustachian tubes, it ispossible that it may cause something from scratch or aggravate anyexisting ear pathology. The idea of inner ear collapse soundsfrightening ; have you searched for this specific condition one-medecine or PubMed?>> "Asfyso",>> I think you did a tremendous and wonderful job finding out all these> things for Becky (and for the rest of us, too). I appreciate your> digging into the subject and sharing your knowledge with us: Thank> you! I hope Becky's situation will improve soon.>> This association/non-association between Samter's and VA just got me> to ponder whether anyone has ever heard that there could be a link> between Samter's triad and sudden deafness? I just got diagnosed with> Sanmter's triad last September after having had this illness for about> 27 years and no one knowing or letting me know about it before. Last> August also my right ear went deaf (this is not conductivity now, the> inner ear just collapsed), and I have had a glue ear problem in both> of my ears for about eleven years prior to becoming (right-ear) deaf..> Any comments and ideas are wellcomed.>> Best regards,>> No virus found in this incoming message.Checked by AVG.Version: 7.5.524 / Virus Database: 270.0.0/1489 - Release Date: 6/7/2008 11:17 AM No virus found in this outgoing message.Checked by AVG.Version: 7.5.524 / Virus Database: 270.0.0/1489 - Release Date: 6/7/2008 11:17 AM Sent from . A Smarter Email. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 1. The interval is a little tight. I think 4 hours at least is necessary to allow for a reaction. Less than that, you may be piling on to a reaction that is already coming down the tracks at you. (Something like taking a next drink when you are already about to become drunk in a few minutes from first 3 shots.) 2. Once you have a reaction, you should let it totally subside before repeating. Taking a repeat dose before the earlier dose has " spent " seems like a different procedure than I understand to be sensible desensitization. Taking a double dose while still reacting to the previous one seems foolhardy. You could consider doing it again, although I am sure you will not be looking forward to it. If so, I suggest doing as before, but with longer intervals and with complete recovery before repetition. I will withhold my comments about a doctor who has to call colleagues around the country IN THE MIDDLE OF A PROCEDURE. -- From: " Tom Schultz " <tschultz@...> Date: Sun, 8 Jun 2008 15:58:23 -0500 Subject: Failed Desensitization I really need some feedback from the group. I have heard so many positive stories about members being desensitized to our aspirin allergy. I just spent 2-1/2 days in the ICU at the University of Minnesota Hospital in an attempt to be desensitized, but it was a failure. They started me out at 20 mg. and 3 hours later went up to 40 mg, and I had no problems. At 80 mg I started to sneeze and get congested, and so 3 hours later they repeated the 80 mg dosage. Still some congestion but no major problems. Three hours later they gave me 162 mg of aspirin and I had a huge reaction. My asthma kicked in, I was sneezing and blowing my nose and developed a rash that was mostly on my face, hands and feet, but also on other parts of my body. My hands and feet became very swollen and my eyes were red and itched. They pumped me full of prednisone and Benadryl through an IV, but by the next morning I was still feeling terrible. After calls to colleagues around the country, the supervising doctor decided to stop the procedure. I hoped that this was my chance to regain my sense of taste and smell after 12 years of misery and 5 surgeries. I have developed Osteopeania from all of the steroids, and really needed the aspirin desensitization to work. Has anyone else had a similar experience? Any suggestions? Tom in St. , MN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 Yes - slower seems to be the general process for success...and i was on 40 mg of predisone during the 3 week desens process (to lesson the reactions).... sorry to hear your trouble...probably worth finding a doctor more experienced if you try again... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 Hi Tom, Actually, I slightly disagree with the other responses you've gotten so far. I did my desensitization in two days, at 3 hour intervals. Yes, the reaction was horrible, but as far as I know, its a necessary evil. I too had to be pumped full of benadryl and prednisone (not to mention some lovely Epi shots), but once I had the reaction, then I was in essence, desensitized. Let me ask you this, how long ago did this process happen? If you are within a 3-4 day window, then you are probably safe to attempt the desensitization again and the reaction WON'T occur. Honestly, you are probably desensitized! Now, I'm not recommending you start taking aspirin, but if you handled the 80 mg dose okay, and you are within the 3-4 day window, there's a pretty good chance that you will tolerate it. And then you can always up it on your own from there. That's just my opinion. I too had the experience of my allergist wanting to give up and calling her colleagues for advice. It sucks, I know. Kate > > > > " Asfyso " , > > > > I think you did a tremendous and wonderful job finding out all these > > things for Becky (and for the rest of us, too). I appreciate your > > digging into the subject and sharing your knowledge with us: Thank > > you! I hope Becky's situation will improve soon. > > > > This association/non-association between Samter's and VA just got me > > to ponder whether anyone has ever heard that there could be a link > > between Samter's triad and sudden deafness? I just got diagnosed with > > Sanmter's triad last September after having had this illness for about > > 27 years and no one knowing or letting me know about it before. Last > > August also my right ear went deaf (this is not conductivity now, the > > inner ear just collapsed), and I have had a glue ear problem in both > > of my ears for about eleven years prior to becoming (right-ear) deaf.. > > Any comments and ideas are wellcomed. > > > > Best regards, > > > > > > > > > > No virus found in this incoming message. > Checked by AVG. > Version: 7.5.524 / Virus Database: 270.0.0/1489 - Release Date: 6/7/2008 > 11:17 AM > > > No virus found in this outgoing message. > Checked by AVG. > Version: 7.5.524 / Virus Database: 270.0.0/1489 - Release Date: 6/7/2008 > 11:17 AM > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 > From: " kateatcu " <katea98@...> > Actually, I slightly disagree with the other responses you've gotten > so far. I did my desensitization in two days, at 3 hour intervals. > Yes, the reaction was horrible, but as far as I know, its a necessary > evil. Yes, the reaction is absolutely necessary, but I interpret Tom's narrative as meaning that the aggressive schedule, especially the doubling too soon after the initial reactions, made his ultimate reaction more dangerous than necessary. > 'I too had to be pumped full of benadryl and prednisone (not to > mention some lovely Epi shots), but once I had the reaction, then I > was in essence, desensitized. > > Let me ask you this, how long ago did this process happen? If you > are within a 3-4 day window, then you are probably safe to attempt > the desensitization again and the reaction WON'T occur. Honestly, > you are probably desensitized! I agree, that Tom is probably desensitized, having gone through what he did. Does he want to take that chance? I hope to hear. > Now, I'm not recommending you start > taking aspirin, but if you handled the 80 mg dose okay, and you are > within the 3-4 day window, there's a pretty good chance that you will > tolerate it. My suggestion to Tom would be to catch his breath, regroup, and then try it with longer intervals and full recovery from any reaction. Then he will know what to expect should he need to do it again in future. > And then you can always up it on your own from there. Yes, once desensitized, it is an easy thing to manage. > > That's just my opinion. > > I too had the experience of my allergist wanting to give up and > calling her colleagues for advice. It sucks, I know. How many people in this group have had good experiences with allergists? I don't recall too many. > > Kate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 I done the desentisation the same as you said and experienced a extreme reaction. It’s way too fast and although I should have stopped after my reaction I continued on a low dose for a day then added to it each day. You should span over a week to 10 days. From: samters [mailto:samters ] On Behalf Of Tom Schultz Sent: 08 June, 2008 17:58 samters Subject: Failed Desensitization I really need some feedback from the group. I have heard so many positive stories about members being desensitized to our aspirin allergy. I just spent 2-1/2 days in the ICU at the University of Minnesota Hospital in an attempt to be desensitized, but it was a failure. They started me out at 20 mg. and 3 hours later went up to 40 mg, and I had no problems. At 80 mg I started to sneeze and get congested, and so 3 hours later they repeated the 80 mg dosage. Still some congestion but no major problems. Three hours later they gave me 162 mg of aspirin and I had a huge reaction. My asthma kicked in, I was sneezing and blowing my nose and developed a rash that was mostly on my face, hands and feet, but also on other parts of my body. My hands and feet became very swollen and my eyes were red and itched. They pumped me full of prednisone and Benadryl through an IV, but by the next morning I was still feeling terrible. After calls to colleagues around the country, the supervising doctor decided to stop the procedure. I hoped that this was my chance to regain my sense of taste and smell after 12 years of misery and 5 surgeries. I have developed Osteopeania from all of the steroids, and really needed the aspirin desensitization to work. Has anyone else had a similar experience? Any suggestions? Tom in St. , MN From: samters [mailto:samters ] On Behalf Of asfyso Sent: Sunday, June 08, 2008 1:01 PM samters Subject: Re: Anyone have heart problems or chest pain? (long post) To be complete, I too have a personal interest in cardiovascular problems because of a family history of (regular) angina, but not on the " Samter's side " , as well as arrythmia on the Samter's side. Diagnosis - Samter's is somewhat under-diagnosed everywhere. Chest pain - I used to have frequent intercostal pain, sometimes severe, but it completely disappeared when I switched the car seat for a stiffer, more anatomic model and started driving in a more symetric position - both arms on the wheel at the same level. Ear problems - I remember reading somewhere that a good number (maybe a quarter?) of Samter's patients have ear problems too ; it is conceivable that the inflammation of the nasal mucosa can " travel " a little with time, spreading around, and once it reaches the eustachian tubes, it is possible that it may cause something from scratch or aggravate any existing ear pathology. The idea of inner ear collapse sounds frightening ; have you searched for this specific condition on e-medecine or PubMed? > > " Asfyso " , > > I think you did a tremendous and wonderful job finding out all these > things for Becky (and for the rest of us, too). I appreciate your > digging into the subject and sharing your knowledge with us: Thank > you! I hope Becky's situation will improve soon. > > This association/non-association between Samter's and VA just got me > to ponder whether anyone has ever heard that there could be a link > between Samter's triad and sudden deafness? I just got diagnosed with > Sanmter's triad last September after having had this illness for about > 27 years and no one knowing or letting me know about it before. Last > August also my right ear went deaf (this is not conductivity now, the > inner ear just collapsed), and I have had a glue ear problem in both > of my ears for about eleven years prior to becoming (right-ear) deaf.. > Any comments and ideas are wellcomed. > > Best regards, > > No virus found in this incoming message. Checked by AVG. Version: 7.5.524 / Virus Database: 270.0.0/1489 - Release Date: 6/7/2008 11:17 AM No virus found in this outgoing message. Checked by AVG. Version: 7.5.524 / Virus Database: 270.0.0/1489 - Release Date: 6/7/2008 11:17 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2008 Report Share Posted June 11, 2008 After reading the Mixed results posted to this group regarding aspirin desensitizing I made this a primary topic today when I was meeting with my allergist. He gave me a somewhat non-supportive answer. He didn't recommend it because he didn't feel that I would actually realize my expectations from the procedure and that any improvement may not be long lasting. -----Original Message-----From: samters [mailto:samters ]On Behalf Of Tom SchultzSent: Sunday, June 08, 2008 3:58 PMsamters Subject: Failed Desensitization I really need some feedback from the group. I have heard so many positive stories about members being desensitized to our aspirin allergy. I just spent 2-1/2 days in the ICU at the University of Minnesota Hospital in an attempt to be desensitized, but it was a failure. They started me out at 20 mg. and 3 hours later went up to 40 mg, and I had no problems. At 80 mg I started to sneeze and get congested, and so 3 hours later they repeated the 80 mg dosage. Still some congestion but no major problems. Three hours later they gave me 162 mg of aspirin and I had a huge reaction. My asthma kicked in, I was sneezing and blowing my nose and developed a rash that was mostly on my face, hands and feet, but also on other parts of my body. My hands and feet became very swollen and my eyes were red and itched. They pumped me full of prednisone and Benadryl through an IV, but by the next morning I was still feeling terrible. After calls to colleagues around the country, the supervising doctor decided to stop the procedure. I hoped that this was my chance to regain my sense of taste and smell after 12 years of misery and 5 surgeries. I have developed Osteopeania from all of the steroids, and really needed the aspirin desensitization to work. Has anyone else had a similar experience? Any suggestions? Tom in St. , MN From: samters [mailto:samters ] On Behalf Of asfysoSent: Sunday, June 08, 2008 1:01 PMsamters Subject: Re: Anyone have heart problems or chest pain? (long post) To be complete, I too have a personal interest in cardiovascularproblems because of a family history of (regular) angina, but not on the"Samter's side", as well as arrythmia on the Samter's side.Diagnosis - Samter's is somewhat under-diagnosed everywhere.Chest pain - I used to have frequent intercostal pain, sometimes severe,but it completely disappeared when I switched the car seat for astiffer, more anatomic model and started driving in a more symetricposition - both arms on the wheel at the same level.Ear problems - I remember reading somewhere that a good number (maybe aquarter?) of Samter's patients have ear problems too ; it is conceivablethat the inflammation of the nasal mucosa can "travel" a little withtime, spreading around, and once it reaches the eustachian tubes, it ispossible that it may cause something from scratch or aggravate anyexisting ear pathology. The idea of inner ear collapse soundsfrightening ; have you searched for this specific condition one-medecine or PubMed?>> "Asfyso",>> I think you did a tremendous and wonderful job finding out all these> things for Becky (and for the rest of us, too). I appreciate your> digging into the subject and sharing your knowledge with us: Thank> you! I hope Becky's situation will improve soon.>> This association/non-association between Samter's and VA just got me> to ponder whether anyone has ever heard that there could be a link> between Samter's triad and sudden deafness? I just got diagnosed with> Sanmter's triad last September after having had this illness for about> 27 years and no one knowing or letting me know about it before. Last> August also my right ear went deaf (this is not conductivity now, the> inner ear just collapsed), and I have had a glue ear problem in both> of my ears for about eleven years prior to becoming (right-ear) deaf..> Any comments and ideas are wellcomed.>> Best regards,>> No virus found in this incoming message.Checked by AVG.Version: 7.5.524 / Virus Database: 270.0.0/1489 - Release Date: 6/7/2008 11:17 AM No virus found in this outgoing message.Checked by AVG.Version: 7.5.524 / Virus Database: 270.0.0/1489 - Release Date: 6/7/2008 11:17 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2008 Report Share Posted June 11, 2008 You are 100% right on the money with your comment. ANOTHER thing this group knows is that Allergists are no more informed about Samters than are ENTs, which is to say that most of them are useless. The collected wisdom of this group will be more helpful than 95% of the medical professionals into whose offices you may, unfortunately, stumble, and who will profit from your misery regardless of their ignorance. In 1992 Allergists and ENT's had made curative recommendations for my problems that didn't make sense to me. I checked with other physician and national medical resources and they agreed that the recommended solutions didn't seem correct. Finally I talked to an acquaintance that was director of medicine at a four campus hospital group, and his response was that " my health was to important to ENTRUST to a physician " . So for the last sixteen years I've conducted my own research and I think that even though I hadn't realized an actual cure, I'm still much better off than if I would have taken the advice of these previous BOO ZOO's The input from this group has provided more USEFUL curative information than all of the educated geniuses that I've talked to. FW: Failed Desensitization > From: Ekren <ekren@...> > > After reading the Mixed results posted to this group regarding aspirin > desensitizing I made this a primary topic today when I was meeting with my > allergist. He gave me a somewhat non-supportive answer. He didn't recommend > it because he didn't feel that I would actually realize my expectations from > the procedure and that any improvement may not be long lasting. He may be right that your expectations may not be realized, but that depends in part on your expectations. Everyone here knows there is no silver bullet for us, ie., knows not to expect a total, miracle cure, but various things help in one way or the other. ANOTHER thing this group knows is that Allergists are no more informed about Samters than are ENTs, which is to say that most of them are useless. The collected wisdom of this group will be more helpful than 95% of the medical professionals into whose offices you may, unfortunately, stumble, and who will profit from your misery regardless of their ignorance. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 Tom, You might have your doctors check you for mastocytosis. I, too, have this bad reaction. I think we have Samter's and something else going on. The key is to figure what else is going on. Michele From: Tom Schultz <tschultz@...>Subject: Failed Desensitizationsamters Date: Sunday, June 8, 2008, 4:58 PM I really need some feedback from the group. I have heard so many positive stories about members being desensitized to our aspirin allergy. I just spent 2-1/2 days in the ICU at the University of Minnesota Hospital in an attempt to be desensitized, but it was a failure. They started me out at 20 mg. and 3 hours later went up to 40 mg, and I had no problems. At 80 mg I started to sneeze and get congested, and so 3 hours later they repeated the 80 mg dosage. Still some congestion but no major problems. Three hours later they gave me 162 mg of aspirin and I had a huge reaction. My asthma kicked in, I was sneezing and blowing my nose and developed a rash that was mostly on my face, hands and feet, but also on other parts of my body. My hands and feet became very swollen and my eyes were red and itched. They pumped me full of prednisone and Benadryl through an IV, but by the next morning I was still feeling terrible. After calls to colleagues around the country, the supervising doctor decided to stop the procedure. I hoped that this was my chance to regain my sense of taste and smell after 12 years of misery and 5 surgeries. I have developed Osteopeania from all of the steroids, and really needed the aspirin desensitization to work. Has anyone else had a similar experience? Any suggestions? Tom in St. , MN From: samters@groups .com [mailto:samters] On Behalf Of asfysoSent: Sunday, June 08, 2008 1:01 PMsamters@groups .comSubject: Re: Anyone have heart problems or chest pain? (long post) To be complete, I too have a personal interest in cardiovascularproblems because of a family history of (regular) angina, but not on the"Samter's side", as well as arrythmia on the Samter's side.Diagnosis - Samter's is somewhat under-diagnosed everywhere.Chest pain - I used to have frequent intercostal pain, sometimes severe,but it completely disappeared when I switched the car seat for astiffer, more anatomic model and started driving in a more symetricposition - both arms on the wheel at the same level.Ear problems - I remember reading somewhere that a good number (maybe aquarter?) of Samter's patients have ear problems too ; it is conceivablethat the inflammation of the nasal mucosa can "travel" a little withtime, spreading around, and once it reaches the eustachian tubes, it ispossible that it may cause something from scratch or aggravate anyexisting ear pathology. The idea of inner ear collapse soundsfrightening ; have you searched for this specific condition one-medecine or PubMed?>> "Asfyso",>> I think you did a tremendous and wonderful job finding out all these> things for Becky (and for the rest of us, too). I appreciate your> digging into the subject and sharing your knowledge with us: Thank> you! I hope Becky's situation will improve soon.>> This association/ non-association between Samter's and VA just got me> to ponder whether anyone has ever heard that there could be a link> between Samter's triad and sudden deafness? I just got diagnosed with> Sanmter's triad last September after having had this illness for about> 27 years and no one knowing or letting me know about it before. Last> August also my right ear went deaf (this is not conductivity now, the> inner ear just collapsed), and I have had a glue ear problem in both> of my ears for about eleven years prior to becoming (right-ear) deaf..> Any comments and ideas are wellcomed.>> Best regards,>> No virus found in this incoming message.Checked by AVG.Version: 7.5.524 / Virus Database: 270.0.0/1489 - Release Date: 6/7/2008 11:17 AM No virus found in this outgoing message.Checked by AVG.Version: 7.5.524 / Virus Database: 270.0.0/1489 - Release Date: 6/7/2008 11:17 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2008 Report Share Posted August 8, 2008 Hi Tom, sorry to hear about your bad experiences. To me it sounds like they were trying to desens you too fast. I'm sure a lot of us would have reacted in the same way...that's what ASA is all abouit! In Englad I was desens much more slowly. I reacted to 60mg so I stayed on that dose for 1 week, once/day, then went up to 150mg, to which I reacted badly, so I was stabilised and stayed on 150mg every day for the week then ent up again in small steps until I became safely desens at 600mg and that's what I still take. I'm sure the key to this is to take things slowly. For me I had to take prednisolone every day in the early stages to dampen the effects whiler I went through the desens process. Don't give up hope...i hope you can find another way of doing this. Beckymichele <truekindandhappy@...> wrote: Tom, You might have your doctors check you for mastocytosis. I, too, have this bad reaction. I think we have Samter's and something else going on. The key is to figure what else is going on. Michele From: Tom Schultz <tschultzubpideas>Subject: Failed Desensitizationsamters Date: Sunday, June 8, 2008, 4:58 PM I really need some feedback from the group. I have heard so many positive stories about members being desensitized to our aspirin allergy. I just spent 2-1/2 days in the ICU at the University of Minnesota Hospital in an attempt to be desensitized, but it was a failure. They started me out at 20 mg. and 3 hours later went up to 40 mg, and I had no problems. At 80 mg I started to sneeze and get congested, and so 3 hours later they repeated the 80 mg dosage. Still some congestion but no major problems. Three hours later they gave me 162 mg of aspirin and I had a huge reaction. My asthma kicked in, I was sneezing and blowing my nose and developed a rash that was mostly on my face, hands and feet, but also on other parts of my body. My hands and feet became very swollen and my eyes were red and itched. They pumped me full of prednisone and Benadryl through an IV, but by the next morning I was still feeling terrible. After calls to colleagues around the country, the supervising doctor decided to stop the procedure. I hoped that this was my chance to regain my sense of taste and smell after 12 years of misery and 5 surgeries. I have developed Osteopeania from all of the steroids, and really needed the aspirin desensitization to work. Has anyone else had a similar experience? Any suggestions? Tom in St. , MN From: samters@groups .com [mailto:samters] On Behalf Of asfysoSent: Sunday, June 08, 2008 1:01 PMsamters@groups .comSubject: Re: Anyone have heart problems or chest pain? (long post) To be complete, I too have a personal interest in cardiovascularproblems because of a family history of (regular) angina, but not on the"Samter's side", as well as arrythmia on the Samter's side.Diagnosis - Samter's is somewhat under-diagnosed everywhere.Chest pain - I used to have frequent intercostal pain, sometimes severe,but it completely disappeared when I switched the car seat for astiffer, more anatomic model and started driving in a more symetricposition - both arms on the wheel at the same level.Ear problems - I remember reading somewhere that a good number (maybe aquarter?) of Samter's patients have ear problems too ; it is conceivablethat the inflammation of the nasal mucosa can "travel" a little withtime, spreading around, and once it reaches the eustachian tubes, it ispossible that it may cause something from scratch or aggravate anyexisting ear pathology. The idea of inner ear collapse soundsfrightening ; have you searched for this specific condition one-medecine or PubMed?>> "Asfyso",>> I think you did a tremendous and wonderful job finding out all these> things for Becky (and for the rest of us, too). I appreciate your> digging into the subject and sharing your knowledge with us: Thank> you! I hope Becky's situation will improve soon.>> This association/ non-association between Samter's and VA just got me> to ponder whether anyone has ever heard that there could be a link> between Samter's triad and sudden deafness? I just got diagnosed with> Sanmter's triad last September after having had this illness for about> 27 years and no one knowing or letting me know about it before. Last> August also my right ear went deaf (this is not conductivity now, the> inner ear just collapsed), and I have had a glue ear problem in both> of my ears for about eleven years prior to becoming (right-ear) deaf..> Any comments and ideas are wellcomed.>> Best regards,>> No virus found in this incoming message.Checked by AVG.Version: 7.5.524 / Virus Database: 270.0.0/1489 - Release Date: 6/7/2008 11:17 AM No virus found in this outgoing message.Checked by AVG.Version: 7.5.524 / Virus Database: 270.0.0/1489 - Release Date: 6/7/2008 11:17 AM Not happy with your email address? Get the one you really want - millions of new email addresses available now at Quote Link to comment Share on other sites More sharing options...
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