Guest guest Posted July 11, 2010 Report Share Posted July 11, 2010 Hi Amy, It will be interesting to know what effect nortryptilline has. However, it is likely that the nerves are irritated by the sinusitis infection itsef (ie germ toxins, inflammation), and that it will completely go away only if the infection can be either cured or toned down. I once had very sensitive nerves in the maxillary sinuses, but this mostly went away when I increased the antibiotic treatment. > > In my continuing saga of dealing with the pain in the right maxillary sinus area - my ENT sent me to a neurologist. The new diagnosis is a type of migraine that used to be classified as a tension headache, but is now classified as migraine. There seems to be a link in that the chronic infections and subsequent inflammation (triggered by exposure to viruses in my classroom full of elementary students) is triggering the trigeminal nerve and thus begins a chronic cycle of infection - inflammation - migraine. So I am now on a 10 mg. per night dose of nortryptiline. We shall see if this alleviates the headache issue. Thought I would share the update in case anyone else is having similar issues. > > Amy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2010 Report Share Posted July 11, 2010 Good point asfy – but my ENT insists there is absolutely no sign of infection. My CT scans are clear and he scoped it and said it looks fine now. Well, that was after 42 straight days of prednisone and a round of Levaquin. He said that even though the dentist saw what looked like a cloudy area at the bottom of my right maxillary sinus, it doesn’t necessarily mean it is infected. He said that dental x-rays are very low resolution. He also said that I may have some mucous there, but if it isn’t infected, then it isn’t a problem. So, I guess we will see. Amy From: samters [mailto:samters ] On Behalf Of asfy Sent: Sunday, July 11, 2010 11:25 AM samters Subject: Re: Follow Up Hi Amy, It will be interesting to know what effect nortryptilline has. However, it is likely that the nerves are irritated by the sinusitis infection itsef (ie germ toxins, inflammation), and that it will completely go away only if the infection can be either cured or toned down. I once had very sensitive nerves in the maxillary sinuses, but this mostly went away when I increased the antibiotic treatment. > > In my continuing saga of dealing with the pain in the right maxillary sinus area - my ENT sent me to a neurologist. The new diagnosis is a type of migraine that used to be classified as a tension headache, but is now classified as migraine. There seems to be a link in that the chronic infections and subsequent inflammation (triggered by exposure to viruses in my classroom full of elementary students) is triggering the trigeminal nerve and thus begins a chronic cycle of infection - inflammation - migraine. So I am now on a 10 mg. per night dose of nortryptiline. We shall see if this alleviates the headache issue. Thought I would share the update in case anyone else is having similar issues. > > Amy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2010 Report Share Posted July 11, 2010 Ah, well, then maybe the nerves need a couple of months to heal properly... > > > > In my continuing saga of dealing with the pain in the right maxillary > sinus area - my ENT sent me to a neurologist. The new diagnosis is a type of > migraine that used to be classified as a tension headache, but is now > classified as migraine. There seems to be a link in that the chronic > infections and subsequent inflammation (triggered by exposure to viruses in > my classroom full of elementary students) is triggering the trigeminal nerve > and thus begins a chronic cycle of infection - inflammation - migraine. So I > am now on a 10 mg. per night dose of nortryptiline. We shall see if this > alleviates the headache issue. Thought I would share the update in case > anyone else is having similar issues. > > > > Amy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2010 Report Share Posted July 11, 2010 Amy, Your e-mail and asfy's response REALLY interested me at this time. I have been a migraine sufferer since I was 8 years old. I am now 51 and the migraines continue. I have been on amitryptaline and neurontine for mingraine control for many years. My Respiratory doctor out of National Jewish Hospital here in Denver has wanted me to see a particular Neurologist for awhile now because he feels there is a connection between my migraines and my Samters. Whenever I get a migraine I also get very congested. My nose gets stuffed up and I start blowing my nose. So, even though I have a neurologist I have been seeing for the last 10 years, I have agreed to see the new neurologist who apparently understands the migraine/Samters connection. I am seeing this doctor on Wednesday and will be very curios as to whether he will think that I need to change any of my migraine preventative medications. Has anyone ever heard of an actual Migraine/Samters connection? Jane From: asfy <asfyso@...>Subject: Re: Follow Upsamters Date: Sunday, July 11, 2010, 12:24 PM Hi Amy,It will be interesting to know what effect nortryptilline has. However, it is likely that the nerves are irritated by the sinusitis infection itsef (ie germ toxins, inflammation), and that it will completely go away only if the infection can be either cured or toned down. I once had very sensitive nerves in the maxillary sinuses, but this mostly went away when I increased the antibiotic treatment. >> In my continuing saga of dealing with the pain in the right maxillary sinus area - my ENT sent me to a neurologist. The new diagnosis is a type of migraine that used to be classified as a tension headache, but is now classified as migraine. There seems to be a link in that the chronic infections and subsequent inflammation (triggered by exposure to viruses in my classroom full of elementary students) is triggering the trigeminal nerve and thus begins a chronic cycle of infection - inflammation - migraine. So I am now on a 10 mg. per night dose of nortryptiline. We shall see if this alleviates the headache issue. Thought I would share the update in case anyone else is having similar issues.> > Amy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2010 Report Share Posted July 11, 2010 Hi Jane, I will be very interested to see what this doctor says. I too am having the same issue. I will often get a headache, without an infection, and it will onset with extreme congestion. Then, the infection follows and it becomes a vicious circle. I am also taking 2400 mg. of guaifenisin a day. Let me know what happens. Amy From: samters [mailto:samters ] On Behalf Of Jane Marino Sent: Sunday, July 11, 2010 7:44 PM samters Subject: Re: Re: Follow Up Amy, Your e-mail and asfy's response REALLY interested me at this time. I have been a migraine sufferer since I was 8 years old. I am now 51 and the migraines continue. I have been on amitryptaline and neurontine for mingraine control for many years. My Respiratory doctor out of National Jewish Hospital here in Denver has wanted me to see a particular Neurologist for awhile now because he feels there is a connection between my migraines and my Samters. Whenever I get a migraine I also get very congested. My nose gets stuffed up and I start blowing my nose. So, even though I have a neurologist I have been seeing for the last 10 years, I have agreed to see the new neurologist who apparently understands the migraine/Samters connection. I am seeing this doctor on Wednesday and will be very curios as to whether he will think that I need to change any of my migraine preventative medications. Has anyone ever heard of an actual Migraine/Samters connection? Jane From: asfy <asfyso@...> Subject: Re: Follow Up samters Date: Sunday, July 11, 2010, 12:24 PM Hi Amy, It will be interesting to know what effect nortryptilline has. However, it is likely that the nerves are irritated by the sinusitis infection itsef (ie germ toxins, inflammation), and that it will completely go away only if the infection can be either cured or toned down. I once had very sensitive nerves in the maxillary sinuses, but this mostly went away when I increased the antibiotic treatment. > > In my continuing saga of dealing with the pain in the right maxillary sinus area - my ENT sent me to a neurologist. The new diagnosis is a type of migraine that used to be classified as a tension headache, but is now classified as migraine. There seems to be a link in that the chronic infections and subsequent inflammation (triggered by exposure to viruses in my classroom full of elementary students) is triggering the trigeminal nerve and thus begins a chronic cycle of infection - inflammation - migraine. So I am now on a 10 mg. per night dose of nortryptiline. We shall see if this alleviates the headache issue. Thought I would share the update in case anyone else is having similar issues. > > Amy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Hi, well, the good news is, the shortness of breath is not Ariad. the bad news is, it is atrial fibrillation. He took me off Hydrochlorathiazide and put me on coumadin, doubled the Metoprlol, and put me on Lasix daily. I'll be ship shape in no time. But no one has let me know the scan results yet, will have to wait til Mon. Lottie, you are right, I AM an old broad and I am just falling to pieces in front of my own eyes!! Oh yes, and there is always this to consider, what caused the A fib? could it be the Ariad? Have not talked to Dr. Talpaz but I am hoping it is certainly NOT Ariad and I want back on it ASAP. I am ticked off with my gastro. doctor, he surely had the results yesterday, the scan was done early Thurs. That's it for now, Bobby (the next to oldest broad on the site!!!!!) a ( Bobby ) Doyle, dob 12/17/29 DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.01 11/2009 PCR 0.034 02/2010 PCRU #840 Zavie's Zero Club Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 I hope you get the results you are looking for !!! Warm thoughts and prayers . Eva From: ROBERTA DOYLE Sent: Saturday, January 15, 2011 11:09 AM Subject: [ ] follow up Hi, well, the good news is, the shortness of breath is not Ariad. the bad news is, it is atrial fibrillation. He took me off Hydrochlorathiazide and put me on coumadin, doubled the Metoprlol, and put me on Lasix daily. I'll be ship shape in no time. But no one has let me know the scan results yet, will have to wait til Mon. Lottie, you are right, I AM an old broad and I am just falling to pieces in front of my own eyes!! Oh yes, and there is always this to consider, what caused the A fib? could it be the Ariad? Have not talked to Dr. Talpaz but I am hoping it is certainly NOT Ariad and I want back on it ASAP. I am ticked off with my gastro. doctor, he surely had the results yesterday, the scan was done early Thurs. That's it for now, Bobby (the next to oldest broad on the site!!!!!) a ( Bobby ) Doyle, dob 12/17/29 DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.01 11/2009 PCR 0.034 02/2010 PCRU #840 Zavie's Zero Club Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2011 Report Share Posted January 17, 2011 Hi Bobby, Hang in there!! Age is just a number. How we feel in our hearts is our true age. So live it up when you are feeling better. I will be praying for you. God Bless, Jackie S. From: ROBERTA DOYLE <rcd1929@...> Subject: [ ] follow up " " < > Date: Saturday, January 15, 2011, 10:09 AM  Hi, well, the good news is, the shortness of breath is not Ariad. the bad news is, it is atrial fibrillation. He took me off Hydrochlorathiazide and put me on coumadin, doubled the Metoprlol, and put me on Lasix daily. I'll be ship shape in no time. But no one has let me know the scan results yet, will have to wait til Mon. Lottie, you are right, I AM an old broad and I am just falling to pieces in front of my own eyes!! Oh yes, and there is always this to consider, what caused the A fib? could it be the Ariad? Have not talked to Dr. Talpaz but I am hoping it is certainly NOT Ariad and I want back on it ASAP.  I am ticked off with my gastro. doctor, he surely had the results yesterday, the scan was done early Thurs. That's it for now, Bobby (the next to oldest broad on the site!!!!!) a ( Bobby ) Doyle, dob 12/17/29 DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.01 11/2009 PCR 0.034 02/2010 PCRU #840 Zavie's Zero Club Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2011 Report Share Posted January 18, 2011 Jackie, if I lived every day like I felt in my heart, I would be long gone~!\ Just having a bad patch, now a sinus infection too. You are the trooper of the year, good for you and your success, you are a tough cookie. Bobby On Mon, Jan 17, 2011 at 5:18 PM, jackie schneider <jschneider008@...>wrote: > > > Hi Bobby, > Hang in there!! Age is just a number. How we feel in our hearts is our true > age. So live it up when you are feeling better. I will be praying for you. > > God Bless, > Jackie S. > > > > From: ROBERTA DOYLE <rcd1929@... <rcd1929%40sbcglobal.net>> > Subject: [ ] follow up > " " < <%40>> > Date: Saturday, January 15, 2011, 10:09 AM > > > > Hi, well, the good news is, the shortness of breath is not Ariad. the bad > news is, it is > > atrial fibrillation. He took me off Hydrochlorathiazide and put me on > coumadin, doubled the Metoprlol, and put me on Lasix daily. I'll be ship > shape in no time. But no one has let me know the scan results yet, will > have to wait til Mon. Lottie, you are right, I AM an old broad and I am > just falling to pieces in front of my own eyes!! Oh yes, and there is > always this to consider, what caused the A fib? could it be the Ariad? > Have not talked to Dr. Talpaz but I am hoping it is certainly NOT Ariad and > I want back on it ASAP. I am ticked off with my gastro. doctor, he surely > had the results yesterday, the scan was done early Thurs. > > That's it for now, Bobby (the next to oldest broad on the site!!!!!) > > a ( Bobby ) Doyle, dob 12/17/29 > > DX 5/1995 > > Interferon 9 weeks/Hydroxyurea 5 years > > 02/2000 to 06/2002 Gleevec trial, OHSU > > 06/2002 Gleevec/Trisenox Trial, OHSU > > 06/2003 Gleevec/Zarnestra Trial, OHSU > > 04/2004 Sprycel Trial, MDACC, CCR in 10 months > > 04/2008 XL228 Trial, U of Mich. > > 01/2009 PCR 5.69 > > 04/2009 Ariad Trial AP24534 > > 09/2009 PCR 0.01 > > 11/2009 PCR 0.034 > > 02/2010 PCRU > > #840 Zavie's Zero Club > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2011 Report Share Posted February 6, 2011 a, I'm a little slow in reading posts, hence my late reply. My husband also has CML and a-fib. The CML was diagnosed first and about two months later he got the a-fib diagnosis. I'm sure he had a-fib even before CML dx. Just couldn't find it. My point is that I am sure it was not Gleevec which he was taking at that time that brought on the a-fib, because he had it before he started on Gleevec. But I have wondered about any CML-a-fib connection. Wonder how many CML patients also have a-fib. I know you are on Ariad, but I assume these drugs are similar. Good luck with the a-fib. My hubby suffers more from a-fib than from CML. But he has been relatively symptom free for over a month now after a change in meds. Best of luck. Joyce in IL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2011 Report Share Posted February 6, 2011 Hi Joyce, I doubt A fib is caused by Ariad, it just comes along with age in my case, and high blood pressure and high cholesterol. Lottie told me about another drug, but I saw my dr. last week and they are going to do a cardioversion, which is shocking the heart into beating normally. Hopefully this will correct it, and yes, it is more worrisome than CML, much more so, I never even think about CML. Good luck to your husband, thank you, Bobby a ( Bobby ) Doyle, dob 12/17/29 DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.01 11/2009 PCR 0.034 02/2010 PCRU #840 Zavie's Zero Club From: Joyce Mesnarich <joyway@...> Subject: [ ] Re: follow up Date: Sunday, February 6, 2011, 2:01 AM  a, I'm a little slow in reading posts, hence my late reply. My husband also has CML and a-fib. The CML was diagnosed first and about two months later he got the a-fib diagnosis. I'm sure he had a-fib even before CML dx. Just couldn't find it. My point is that I am sure it was not Gleevec which he was taking at that time that brought on the a-fib, because he had it before he started on Gleevec. But I have wondered about any CML-a-fib connection. Wonder how many CML patients also have a-fib. I know you are on Ariad, but I assume these drugs are similar. Good luck with the a-fib. My hubby suffers more from a-fib than from CML. But he has been relatively symptom free for over a month now after a change in meds. Best of luck. Joyce in IL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2011 Report Share Posted February 7, 2011 Dear Bobby, Is that something they implant under the skin? I have a friend that had that done and she is doing really good. She says she feels so much better. I'm not sure what her diagnosis is. I hope you get to feeling better very SOON. Stay positive - we're here for you  You're in my thoughts and prayers, Jackie S. From: Joyce Mesnarich <joyway@...> Subject: [ ] Re: follow up Date: Sunday, February 6, 2011, 2:01 AM  a, I'm a little slow in reading posts, hence my late reply. My husband also has CML and a-fib. The CML was diagnosed first and about two months later he got the a-fib diagnosis. I'm sure he had a-fib even before CML dx. Just couldn't find it. My point is that I am sure it was not Gleevec which he was taking at that time that brought on the a-fib, because he had it before he started on Gleevec. But I have wondered about any CML-a-fib connection. Wonder how many CML patients also have a-fib. I know you are on Ariad, but I assume these drugs are similar. Good luck with the a-fib. My hubby suffers more from a-fib than from CML. But he has been relatively symptom free for over a month now after a change in meds. Best of luck. Joyce in IL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2011 Report Share Posted February 7, 2011 Hi Jackie, no, I don't think so. they put you to sleep and I think use paddles to shock you with, or electrodes like in an ekg? I actually did not ask, the less i know the better, just do it and get it over with is my motto. I have read both good and not so good on it, but I know two people that it worked well with, so I'm game. Bobby a ( Bobby ) Doyle, dob 12/17/29 DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.01 11/2009 PCR 0.034 02/2010 PCRU #840 Zavie's Zero Club From: Joyce Mesnarich <joyway@...> Subject: [ ] Re: follow up Date: Sunday, February 6, 2011, 2:01 AM  a, I'm a little slow in reading posts, hence my late reply. My husband also has CML and a-fib. The CML was diagnosed first and about two months later he got the a-fib diagnosis. I'm sure he had a-fib even before CML dx. Just couldn't find it. My point is that I am sure it was not Gleevec which he was taking at that time that brought on the a-fib, because he had it before he started on Gleevec. But I have wondered about any CML-a-fib connection. Wonder how many CML patients also have a-fib. I know you are on Ariad, but I assume these drugs are similar. Good luck with the a-fib. My hubby suffers more from a-fib than from CML. But he has been relatively symptom free for over a month now after a change in meds. Best of luck. Joyce in IL Quote Link to comment Share on other sites More sharing options...
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