Guest guest Posted June 12, 2012 Report Share Posted June 12, 2012 As I've been weaning off all the other "useless" BP meds a lot of my symptoms are subsiding but I've had one very undesirable side effect. As many of you know, I have a 5 month old baby boy I'm breastfeeding, and I started having shooting pain deep in my breast that developed about 6 weeks ago and has been getting worse, only on my left side. I started researching on the web and I think I'm having vasospasms due to Raynauds syndrome. http://pediatrics.aappublications.org/content/113/4/e360.fullSince this is the 3rd child I have nursed and I have never experienced anything like this I can't help but wonder if this is caused by PA. Or possibly a "side effect" of being on unnecessary calcium channel blockers then taken off? Thoughts? I think it's very weird that only my left nipple is effected and no extremities. It's also weird that I get the blanching on my right nipple but no pain. I have spoken with Dr Lyssikatos from NIH 2x. Initially we discussed me joining the current study. After meeting with drs at WASHU here in STL I felt comfortable receiving treatment here, and the time & travel would be too difficult right now with a new baby who also has health problems, so I didn't think anything else of it. Dr Lyssikatos called me to follow up and I explained this to him and I mentioned I wished I could just donate my adrenal gland to them after surgery. To my surprise he said I COULD donate a tissue sample! I am working on making that happen. I wanted to make sure the group was aware this is a possibility and see if anyone else has been able to do this? If so any advice on how to make it happen? Thanks!Virginia Wall31 year old femaleDASHingAVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO3 cm adenoma in right adrenalDiagnosed February 2012Low K & High BP since appx. 2007Possible family history of hyperaldosteronismMeds: K Cl 20 meq 2 tabs bidPrenatal vitaminBreastfeeding; 5 month old with G6PDD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2012 Report Share Posted June 12, 2012 I think I hear crickets on my post. Not too many breastfeeding moms out there eh? Lol. I talked about NIH too! What's a girl gotta do to get some attention in this group? PA friends, are you out there? , , Maggie, Mrs , Dr Grim? Anybody? ;-) > > As I've been weaning off all the other " useless " BP meds a lot of my symptoms are subsiding but I've had one very undesirable side effect. As many of you know, I have a 5 month old baby boy I'm breastfeeding, and I started having shooting pain deep in my breast that developed about 6 weeks ago and has been getting worse, only on my left side. I started researching on the web and I think I'm having vasospasms due to Raynauds syndrome. http://pediatrics.aappublications.org/content/113/4/e360.full > > Since this is the 3rd child I have nursed and I have never experienced anything like this I can't help but wonder if this is caused by PA. Or possibly a " side effect " of being on unnecessary calcium channel blockers then taken off? Thoughts? I think it's very weird that only my left nipple is effected and no extremities. It's also weird that I get the blanching on my right nipple but no pain. > > I have spoken with Dr Lyssikatos from NIH 2x. Initially we discussed me joining the current study. After meeting with drs at WASHU here in STL I felt comfortable receiving treatment here, and the time & travel would be too difficult right now with a new baby who also has health problems, so I didn't think anything else of it. Dr Lyssikatos called me to follow up and I explained this to him and I mentioned I wished I could just donate my adrenal gland to them after surgery. To my surprise he said I COULD donate a tissue sample! I am working on making that happen. I wanted to make sure the group was aware this is a possibility and see if anyone else has been able to do this? If so any advice on how to make it happen? Thanks! > > > Virginia Wall > 31 year old female > DASHing > AVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO > 3 cm adenoma in right adrenal > Diagnosed February 2012 > Low K & High BP since appx. 2007 > Possible family history of hyperaldosteronism > Meds: K Cl 20 meq 2 tabs bid > Prenatal vitamin > Breastfeeding; 5 month old with G6PDD > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2012 Report Share Posted June 12, 2012 Wonder if breast pain is related to spiro?CE Grim MDOn Jun 12, 2012, at 11:58 PM, virgwall wrote: I think I hear crickets on my post. Not too many breastfeeding moms out there eh? Lol. I talked about NIH too! What's a girl gotta do to get some attention in this group? PA friends, are you out there? , , Maggie, Mrs , Dr Grim? Anybody? ;-) > > As I've been weaning off all the other "useless" BP meds a lot of my symptoms are subsiding but I've had one very undesirable side effect. As many of you know, I have a 5 month old baby boy I'm breastfeeding, and I started having shooting pain deep in my breast that developed about 6 weeks ago and has been getting worse, only on my left side. I started researching on the web and I think I'm having vasospasms due to Raynauds syndrome. http://pediatrics.aappublications.org/content/113/4/e360.full > > Since this is the 3rd child I have nursed and I have never experienced anything like this I can't help but wonder if this is caused by PA. Or possibly a "side effect" of being on unnecessary calcium channel blockers then taken off? Thoughts? I think it's very weird that only my left nipple is effected and no extremities. It's also weird that I get the blanching on my right nipple but no pain. > > I have spoken with Dr Lyssikatos from NIH 2x. Initially we discussed me joining the current study. After meeting with drs at WASHU here in STL I felt comfortable receiving treatment here, and the time & travel would be too difficult right now with a new baby who also has health problems, so I didn't think anything else of it. Dr Lyssikatos called me to follow up and I explained this to him and I mentioned I wished I could just donate my adrenal gland to them after surgery. To my surprise he said I COULD donate a tissue sample! I am working on making that happen. I wanted to make sure the group was aware this is a possibility and see if anyone else has been able to do this? If so any advice on how to make it happen? Thanks! > > > Virginia Wall > 31 year old female > DASHing > AVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO > 3 cm adenoma in right adrenal > Diagnosed February 2012 > Low K & High BP since appx. 2007 > Possible family history of hyperaldosteronism > Meds: K Cl 20 meq 2 tabs bid > Prenatal vitamin > Breastfeeding; 5 month old with G6PDD > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2012 Report Share Posted June 12, 2012 Hi Virginia - the info about NIH accepting tissue samples is worth repeating, so consider this my attempt to give your post a little attention. When I had my adrenalectomy at UCLA last year, I donated my left adrenal for research since it's a major teaching hospital and research university here. My guess would be that most teaching hospitals have similar programs, but for those who have their surgeries at other facilities, perhaps donating to NIH is an option. I can't personally speak to the breastfeeding bit as I never had kids. There seem to be certain topics that just don't get a response around here, for example the questions I asked about the impact of MCBs on menstruation last year, before I had my tumor removed. Our demographics just don't skew toward menstruating or breastfeeding women, apparently -msmith1928 Left laparoscopic adrenalectomy 10/13/11 > > > > As I've been weaning off all the other " useless " BP meds a lot of my symptoms are subsiding but I've had one very undesirable side effect. As many of you know, I have a 5 month old baby boy I'm breastfeeding, and I started having shooting pain deep in my breast that developed about 6 weeks ago and has been getting worse, only on my left side. I started researching on the web and I think I'm having vasospasms due to Raynauds syndrome. http://pediatrics.aappublications.org/content/113/4/e360.full > > > > Since this is the 3rd child I have nursed and I have never experienced anything like this I can't help but wonder if this is caused by PA. Or possibly a " side effect " of being on unnecessary calcium channel blockers then taken off? Thoughts? I think it's very weird that only my left nipple is effected and no extremities. It's also weird that I get the blanching on my right nipple but no pain. > > > > I have spoken with Dr Lyssikatos from NIH 2x. Initially we discussed me joining the current study. After meeting with drs at WASHU here in STL I felt comfortable receiving treatment here, and the time & travel would be too difficult right now with a new baby who also has health problems, so I didn't think anything else of it. Dr Lyssikatos called me to follow up and I explained this to him and I mentioned I wished I could just donate my adrenal gland to them after surgery. To my surprise he said I COULD donate a tissue sample! I am working on making that happen. I wanted to make sure the group was aware this is a possibility and see if anyone else has been able to do this? If so any advice on how to make it happen? Thanks! > > > > > > Virginia Wall > > 31 year old female > > DASHing > > AVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO > > 3 cm adenoma in right adrenal > > Diagnosed February 2012 > > Low K & High BP since appx. 2007 > > Possible family history of hyperaldosteronism > > Meds: K Cl 20 meq 2 tabs bid > > Prenatal vitamin > > Breastfeeding; 5 month old with G6PDD > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2012 Report Share Posted June 12, 2012 It seems to be getting worse as I've been off the spiro waiting for AVS. (I discontinued spiro 4 weeks ago). And it's worst whenever my breast gets cold (like right after nursing). But I'm not ruling anything out!VirginiaSent from my iPhone On Jun 13, 2012, at 12:17 AM, Clarence Grim <lowerbp2@...> wrote: Wonder if breast pain is related to spiro?CE Grim MDOn Jun 12, 2012, at 11:58 PM, virgwall wrote: I think I hear crickets on my post. Not too many breastfeeding moms out there eh? Lol. I talked about NIH too! What's a girl gotta do to get some attention in this group? PA friends, are you out there? , , Maggie, Mrs , Dr Grim? Anybody? ;-) > > As I've been weaning off all the other "useless" BP meds a lot of my symptoms are subsiding but I've had one very undesirable side effect. As many of you know, I have a 5 month old baby boy I'm breastfeeding, and I started having shooting pain deep in my breast that developed about 6 weeks ago and has been getting worse, only on my left side. I started researching on the web and I think I'm having vasospasms due to Raynauds syndrome. http://pediatrics.aappublications.org/content/113/4/e360.full > > Since this is the 3rd child I have nursed and I have never experienced anything like this I can't help but wonder if this is caused by PA. Or possibly a "side effect" of being on unnecessary calcium channel blockers then taken off? Thoughts? I think it's very weird that only my left nipple is effected and no extremities. It's also weird that I get the blanching on my right nipple but no pain. > > I have spoken with Dr Lyssikatos from NIH 2x. Initially we discussed me joining the current study. After meeting with drs at WASHU here in STL I felt comfortable receiving treatment here, and the time & travel would be too difficult right now with a new baby who also has health problems, so I didn't think anything else of it. Dr Lyssikatos called me to follow up and I explained this to him and I mentioned I wished I could just donate my adrenal gland to them after surgery. To my surprise he said I COULD donate a tissue sample! I am working on making that happen. I wanted to make sure the group was aware this is a possibility and see if anyone else has been able to do this? If so any advice on how to make it happen? Thanks! > > > Virginia Wall > 31 year old female > DASHing > AVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO > 3 cm adenoma in right adrenal > Diagnosed February 2012 > Low K & High BP since appx. 2007 > Possible family history of hyperaldosteronism > Meds: K Cl 20 meq 2 tabs bid > Prenatal vitamin > Breastfeeding; 5 month old with G6PDD > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2012 Report Share Posted June 12, 2012 Virginia, are you taking spiro? Didn't see that in the thumbnail so I assumed that the only med you are on is the K. I definitely had shooting pain in my breasts when I took spiro, so if you are taking spiro, Dr. Grim is probably right. I can't recall if it was lateralized to one side though. I do know that the more general, constant breast pain I got was worse on my left side, but it was definitely present on the right as well. > > > > > > As I've been weaning off all the other " useless " BP meds a lot of > > my symptoms are subsiding but I've had one very undesirable side > > effect. As many of you know, I have a 5 month old baby boy I'm > > breastfeeding, and I started having shooting pain deep in my breast > > that developed about 6 weeks ago and has been getting worse, only on > > my left side. I started researching on the web and I think I'm > > having vasospasms due to Raynauds syndrome. http://pediatrics.aappublications.org/content/113/4/e360.full > > > > > > Since this is the 3rd child I have nursed and I have never > > experienced anything like this I can't help but wonder if this is > > caused by PA. Or possibly a " side effect " of being on unnecessary > > calcium channel blockers then taken off? Thoughts? I think it's very > > weird that only my left nipple is effected and no extremities. It's > > also weird that I get the blanching on my right nipple but no pain. > > > > > > I have spoken with Dr Lyssikatos from NIH 2x. Initially we > > discussed me joining the current study. After meeting with drs at > > WASHU here in STL I felt comfortable receiving treatment here, and > > the time & travel would be too difficult right now with a new baby > > who also has health problems, so I didn't think anything else of it. > > Dr Lyssikatos called me to follow up and I explained this to him and > > I mentioned I wished I could just donate my adrenal gland to them > > after surgery. To my surprise he said I COULD donate a tissue > > sample! I am working on making that happen. I wanted to make sure > > the group was aware this is a possibility and see if anyone else has > > been able to do this? If so any advice on how to make it happen? > > Thanks! > > > > > > > > > Virginia Wall > > > 31 year old female > > > DASHing > > > AVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO > > > 3 cm adenoma in right adrenal > > > Diagnosed February 2012 > > > Low K & High BP since appx. 2007 > > > Possible family history of hyperaldosteronism > > > Meds: K Cl 20 meq 2 tabs bid > > > Prenatal vitamin > > > Breastfeeding; 5 month old with G6PDD > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2012 Report Share Posted June 12, 2012 When I discontinued spiro, it took several months for the breast pain to go away, and it seemed at its worst about 3 weeks after I discontinued it. > >> > > >> > As I've been weaning off all the other " useless " BP meds a lot of my symptoms are subsiding but I've had one very undesirable side effect. As many of you know, I have a 5 month old baby boy I'm breastfeeding, and I started having shooting pain deep in my breast that developed about 6 weeks ago and has been getting worse, only on my left side. I started researching on the web and I think I'm having vasospasms due to Raynauds syndrome. http://pediatrics.aappublications.org/content/113/4/e360.full > >> > > >> > Since this is the 3rd child I have nursed and I have never experienced anything like this I can't help but wonder if this is caused by PA. Or possibly a " side effect " of being on unnecessary calcium channel blockers then taken off? Thoughts? I think it's very weird that only my left nipple is effected and no extremities. It's also weird that I get the blanching on my right nipple but no pain. > >> > > >> > I have spoken with Dr Lyssikatos from NIH 2x. Initially we discussed me joining the current study. After meeting with drs at WASHU here in STL I felt comfortable receiving treatment here, and the time & travel would be too difficult right now with a new baby who also has health problems, so I didn't think anything else of it. Dr Lyssikatos called me to follow up and I explained this to him and I mentioned I wished I could just donate my adrenal gland to them after surgery. To my surprise he said I COULD donate a tissue sample! I am working on making that happen. I wanted to make sure the group was aware this is a possibility and see if anyone else has been able to do this? If so any advice on how to make it happen? Thanks! > >> > > >> > > >> > Virginia Wall > >> > 31 year old female > >> > DASHing > >> > AVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO > >> > 3 cm adenoma in right adrenal > >> > Diagnosed February 2012 > >> > Low K & High BP since appx. 2007 > >> > Possible family history of hyperaldosteronism > >> > Meds: K Cl 20 meq 2 tabs bid > >> > Prenatal vitamin > >> > Breastfeeding; 5 month old with G6PDD > >> > > >> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2012 Report Share Posted June 12, 2012 Thanks Mrs :-). With what you've said I wonder if WASHU here in St Louis (doing the surgery) will want my adrenal too, as they are a research and teaching hospital. Dr Lyssikatos made it sound like from the term "tissue sample" perhaps more than one facility can research it. I think it's important to make sure these valuable adenomas don't go to waste!You mentioned spiro on another thread. I was on spiro for almost 2 years prior to my latest pregnancy with no side effects with the breast pain, but it is something to be mindful of if I need to resume it in the future, to see if it worsens the pain. (I was on spiro for 6 weeks before discontinuing it 4 weeks ago in anticipation of AVS). Virginia Wall31 year old femaleDASHingAVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO3 cm adenoma in right adrenalDiagnosed February 2012Low K & High BP since appx. 2007Possible family history of hyperaldosteronismMeds: K Cl 20 meq 2 tabs bidPrenatal vitaminBreastfeeding; 5 month old with G6PDDOn Jun 13, 2012, at 12:25 AM, "msmith_1928" <janeray1940@...> wrote: Hi Virginia - the info about NIH accepting tissue samples is worth repeating, so consider this my attempt to give your post a little attention. When I had my adrenalectomy at UCLA last year, I donated my left adrenal for research since it's a major teaching hospital and research university here. My guess would be that most teaching hospitals have similar programs, but for those who have their surgeries at other facilities, perhaps donating to NIH is an option. I can't personally speak to the breastfeeding bit as I never had kids. There seem to be certain topics that just don't get a response around here, for example the questions I asked about the impact of MCBs on menstruation last year, before I had my tumor removed. Our demographics just don't skew toward menstruating or breastfeeding women, apparently -msmith1928 Left laparoscopic adrenalectomy 10/13/11 > > > > As I've been weaning off all the other "useless" BP meds a lot of my symptoms are subsiding but I've had one very undesirable side effect. As many of you know, I have a 5 month old baby boy I'm breastfeeding, and I started having shooting pain deep in my breast that developed about 6 weeks ago and has been getting worse, only on my left side. I started researching on the web and I think I'm having vasospasms due to Raynauds syndrome. http://pediatrics.aappublications.org/content/113/4/e360.full > > > > Since this is the 3rd child I have nursed and I have never experienced anything like this I can't help but wonder if this is caused by PA. Or possibly a "side effect" of being on unnecessary calcium channel blockers then taken off? Thoughts? I think it's very weird that only my left nipple is effected and no extremities. It's also weird that I get the blanching on my right nipple but no pain. > > > > I have spoken with Dr Lyssikatos from NIH 2x. Initially we discussed me joining the current study. After meeting with drs at WASHU here in STL I felt comfortable receiving treatment here, and the time & travel would be too difficult right now with a new baby who also has health problems, so I didn't think anything else of it. Dr Lyssikatos called me to follow up and I explained this to him and I mentioned I wished I could just donate my adrenal gland to them after surgery. To my surprise he said I COULD donate a tissue sample! I am working on making that happen. I wanted to make sure the group was aware this is a possibility and see if anyone else has been able to do this? If so any advice on how to make it happen? Thanks! > > > > > > Virginia Wall > > 31 year old female > > DASHing > > AVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO > > 3 cm adenoma in right adrenal > > Diagnosed February 2012 > > Low K & High BP since appx. 2007 > > Possible family history of hyperaldosteronism > > Meds: K Cl 20 meq 2 tabs bid > > Prenatal vitamin > > Breastfeeding; 5 month old with G6PDD > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2012 Report Share Posted June 13, 2012 Sometimes no one knows the answers. > > > > > > As I've been weaning off all the other " useless " BP meds a lot of my symptoms are subsiding but I've had one very undesirable side effect. As many of you know, I have a 5 month old baby boy I'm breastfeeding, and I started having shooting pain deep in my breast that developed about 6 weeks ago and has been getting worse, only on my left side. I started researching on the web and I think I'm having vasospasms due to Raynauds syndrome. http://pediatrics.aappublications.org/content/113/4/e360.full > > > > > > Since this is the 3rd child I have nursed and I have never experienced anything like this I can't help but wonder if this is caused by PA. Or possibly a " side effect " of being on unnecessary calcium channel blockers then taken off? Thoughts? I think it's very weird that only my left nipple is effected and no extremities. It's also weird that I get the blanching on my right nipple but no pain. > > > > > > I have spoken with Dr Lyssikatos from NIH 2x. Initially we discussed me joining the current study. After meeting with drs at WASHU here in STL I felt comfortable receiving treatment here, and the time & travel would be too difficult right now with a new baby who also has health problems, so I didn't think anything else of it. Dr Lyssikatos called me to follow up and I explained this to him and I mentioned I wished I could just donate my adrenal gland to them after surgery. To my surprise he said I COULD donate a tissue sample! I am working on making that happen. I wanted to make sure the group was aware this is a possibility and see if anyone else has been able to do this? If so any advice on how to make it happen? Thanks! > > > > > > > > > Virginia Wall > > > 31 year old female > > > DASHing > > > AVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO > > > 3 cm adenoma in right adrenal > > > Diagnosed February 2012 > > > Low K & High BP since appx. 2007 > > > Possible family history of hyperaldosteronism > > > Meds: K Cl 20 meq 2 tabs bid > > > Prenatal vitamin > > > Breastfeeding; 5 month old with G6PDD > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2012 Report Share Posted June 13, 2012 If they are in the PA business and in a Univ. Hosp should be doing PA research as hot topic now.CE Grim MDOn Jun 13, 2012, at 12:25 AM, msmith_1928 wrote: Hi Virginia - the info about NIH accepting tissue samples is worth repeating, so consider this my attempt to give your post a little attention. When I had my adrenalectomy at UCLA last year, I donated my left adrenal for research since it's a major teaching hospital and research university here. My guess would be that most teaching hospitals have similar programs, but for those who have their surgeries at other facilities, perhaps donating to NIH is an option. I can't personally speak to the breastfeeding bit as I never had kids. There seem to be certain topics that just don't get a response around here, for example the questions I asked about the impact of MCBs on menstruation last year, before I had my tumor removed. Our demographics just don't skew toward menstruating or breastfeeding women, apparently -msmith1928 Left laparoscopic adrenalectomy 10/13/11 > > > > As I've been weaning off all the other "useless" BP meds a lot of my symptoms are subsiding but I've had one very undesirable side effect. As many of you know, I have a 5 month old baby boy I'm breastfeeding, and I started having shooting pain deep in my breast that developed about 6 weeks ago and has been getting worse, only on my left side. I started researching on the web and I think I'm having vasospasms due to Raynauds syndrome. http://pediatrics.aappublications.org/content/113/4/e360.full > > > > Since this is the 3rd child I have nursed and I have never experienced anything like this I can't help but wonder if this is caused by PA. Or possibly a "side effect" of being on unnecessary calcium channel blockers then taken off? Thoughts? I think it's very weird that only my left nipple is effected and no extremities. It's also weird that I get the blanching on my right nipple but no pain. > > > > I have spoken with Dr Lyssikatos from NIH 2x. Initially we discussed me joining the current study. After meeting with drs at WASHU here in STL I felt comfortable receiving treatment here, and the time & travel would be too difficult right now with a new baby who also has health problems, so I didn't think anything else of it. Dr Lyssikatos called me to follow up and I explained this to him and I mentioned I wished I could just donate my adrenal gland to them after surgery. To my surprise he said I COULD donate a tissue sample! I am working on making that happen. I wanted to make sure the group was aware this is a possibility and see if anyone else has been able to do this? If so any advice on how to make it happen? Thanks! > > > > > > Virginia Wall > > 31 year old female > > DASHing > > AVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO > > 3 cm adenoma in right adrenal > > Diagnosed February 2012 > > Low K & High BP since appx. 2007 > > Possible family history of hyperaldosteronism > > Meds: K Cl 20 meq 2 tabs bid > > Prenatal vitamin > > Breastfeeding; 5 month old with G6PDD > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2012 Report Share Posted June 13, 2012 I tried nursing my kids but they couldn't get no milk so I have to let my wife do it! I have recently developed raynauds, a year or so - my hands/fingers go numb and white as a sheet, even in mild weather. But back in the day with the low K and Conn's in full undiagnosed force I don't ever recall anything like it. I also have a comes and goes numbness and tingle on my right side face for a couple of years now that is VERY irritating when it hits (seems vibration or sudden heat to cold/cold to heat does it - and starting to mow triggers it every time) and is only right side and makes me want to scratch my face off as it doesn't hurt, but feels like a hair is brushing across my face/cheek that I cannot get to. Happens less frequently when I am on magnesium. It makes my eye water bad so I have to pull over when it hits in the car. Don't recall either of these when my K was always low - unless I just masked it. My doc keeps saying they want me to see a rheumatologist, but they keep messing up the referral so it hasn't been addressed yet. If they think there is a connection I'll write about it and let you know . From: msmith_1928 <janeray1940@...>Subject: Re: Raynauds syndrome & NIHhyperaldosteronism Date: Wednesday, June 13, 2012, 12:29 AM Virginia, are you taking spiro? Didn't see that in the thumbnail so I assumed that the only med you are on is the K.I definitely had shooting pain in my breasts when I took spiro, so if you are taking spiro, Dr. Grim is probably right. I can't recall if it was lateralized to one side though. I do know that the more general, constant breast pain I got was worse on my left side, but it was definitely present on the right as well.> > >> > > As I've been weaning off all the other "useless" BP meds a lot of > > my symptoms are subsiding but I've had one very undesirable side > > effect. As many of you know, I have a 5 month old baby boy I'm > > breastfeeding, and I started having shooting pain deep in my breast > > that developed about 6 weeks ago and has been getting worse, only on > > my left side. I started researching on the web and I think I'm > > having vasospasms due to Raynauds syndrome. http://pediatrics.aappublications.org/content/113/4/e360.full> > >> > > Since this is the 3rd child I have nursed and I have never > > experienced anything like this I can't help but wonder if this is > > caused by PA. Or possibly a "side effect" of being on unnecessary > > calcium channel blockers then taken off? Thoughts? I think it's very > > weird that only my left nipple is effected and no extremities. It's > > also weird that I get the blanching on my right nipple but no pain.> > >> > > I have spoken with Dr Lyssikatos from NIH 2x. Initially we > > discussed me joining the current study. After meeting with drs at > > WASHU here in STL I felt comfortable receiving treatment here, and > > the time & travel would be too difficult right now with a new baby > > who also has health problems, so I didn't think anything else of it. > > Dr Lyssikatos called me to follow up and I explained this to him and > > I mentioned I wished I could just donate my adrenal gland to them > > after surgery. To my surprise he said I COULD donate a tissue > > sample! I am working on making that happen. I wanted to make sure > > the group was aware this is a possibility and see if anyone else has > > been able to do this? If so any advice on how to make it happen? > > Thanks!> > >> > >> > > Virginia Wall> > > 31 year old female> > > DASHing> > > AVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO> > > 3 cm adenoma in right adrenal> > > Diagnosed February 2012> > > Low K & High BP since appx. 2007> > > Possible family history of hyperaldosteronism> > > Meds: K Cl 20 meq 2 tabs bid> > > Prenatal vitamin> > > Breastfeeding; 5 month old with G6PDD> > >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2012 Report Share Posted June 13, 2012 , didn't you have "breast" pain on spiro? Can you describe it?Ok yeah keep me updated on the rheumatologist. Do your eyes water any other times? That triggered something for me, my eyes water all the time particularly when I'm eating or drinking for the last year. It drives me NUTS!VirginiaSent from my iPhone On Jun 13, 2012, at 12:56 PM, Bingham <jlkbbk2003@...> wrote: I tried nursing my kids but they couldn't get no milk so I have to let my wife do it! I have recently developed raynauds, a year or so - my hands/fingers go numb and white as a sheet, even in mild weather. But back in the day with the low K and Conn's in full undiagnosed force I don't ever recall anything like it. I also have a comes and goes numbness and tingle on my right side face for a couple of years now that is VERY irritating when it hits (seems vibration or sudden heat to cold/cold to heat does it - and starting to mow triggers it every time) and is only right side and makes me want to scratch my face off as it doesn't hurt, but feels like a hair is brushing across my face/cheek that I cannot get to. Happens less frequently when I am on magnesium. It makes my eye water bad so I have to pull over when it hits in the car. Don't recall either of these when my K was always low - unless I just masked it. My doc keeps saying they want me to see a rheumatologist, but they keep messing up the referral so it hasn't been addressed yet. If they think there is a connection I'll write about it and let you know . From: msmith_1928 <janeray1940@...>Subject: Re: Raynauds syndrome & NIHhyperaldosteronism Date: Wednesday, June 13, 2012, 12:29 AM Virginia, are you taking spiro? Didn't see that in the thumbnail so I assumed that the only med you are on is the K.I definitely had shooting pain in my breasts when I took spiro, so if you are taking spiro, Dr. Grim is probably right. I can't recall if it was lateralized to one side though. I do know that the more general, constant breast pain I got was worse on my left side, but it was definitely present on the right as well.> > >> > > As I've been weaning off all the other "useless" BP meds a lot of > > my symptoms are subsiding but I've had one very undesirable side > > effect. As many of you know, I have a 5 month old baby boy I'm > > breastfeeding, and I started having shooting pain deep in my breast > > that developed about 6 weeks ago and has been getting worse, only on > > my left side. I started researching on the web and I think I'm > > having vasospasms due to Raynauds syndrome. http://pediatrics.aappublications.org/content/113/4/e360.full> > >> > > Since this is the 3rd child I have nursed and I have never > > experienced anything like this I can't help but wonder if this is > > caused by PA. Or possibly a "side effect" of being on unnecessary > > calcium channel blockers then taken off? Thoughts? I think it's very > > weird that only my left nipple is effected and no extremities. It's > > also weird that I get the blanching on my right nipple but no pain.> > >> > > I have spoken with Dr Lyssikatos from NIH 2x. Initially we > > discussed me joining the current study. After meeting with drs at > > WASHU here in STL I felt comfortable receiving treatment here, and > > the time & travel would be too difficult right now with a new baby > > who also has health problems, so I didn't think anything else of it. > > Dr Lyssikatos called me to follow up and I explained this to him and > > I mentioned I wished I could just donate my adrenal gland to them > > after surgery. To my surprise he said I COULD donate a tissue > > sample! I am working on making that happen. I wanted to make sure > > the group was aware this is a possibility and see if anyone else has > > been able to do this? If so any advice on how to make it happen? > > Thanks!> > >> > >> > > Virginia Wall> > > 31 year old female> > > DASHing> > > AVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO> > > 3 cm adenoma in right adrenal> > > Diagnosed February 2012> > > Low K & High BP since appx. 2007> > > Possible family history of hyperaldosteronism> > > Meds: K Cl 20 meq 2 tabs bid> > > Prenatal vitamin> > > Breastfeeding; 5 month old with G6PDD> > >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2012 Report Share Posted June 13, 2012 I had breast pain - just the nipples, that is, and it felt like a rock or pebble under my nipples and anything that I bumped into or hit, and even my shirt sometimes, made it hurt like you-know-what. After I begun dashing, even a little bit, I was able to drop it from 50mg to 25mg a day, which was pretty amazing because for years NOTHING else worked and I had started on the spiro while already on 5 other BP meds and it had worked so fast to get my BP from 180/140 to 120/80 in a day. But I still had some breast pain at 25mg a day, then I dropped to 12.5mg a day and the pain stopped. I eventually was able to stop the spiro, though I took some last week because I was sick with a sinus infection and whatever the reason my BP jumped up. None the last couple of days. From: msmith_1928 <janeray1940@...>Subject: Re: Raynauds syndrome & NIHhyperaldosteronism Date: Wednesday, June 13, 2012, 12:29 AM Virginia, are you taking spiro? Didn't see that in the thumbnail so I assumed that the only med you are on is the K.I definitely had shooting pain in my breasts when I took spiro, so if you are taking spiro, Dr. Grim is probably right. I can't recall if it was lateralized to one side though. I do know that the more general, constant breast pain I got was worse on my left side, but it was definitely present on the right as well.> > >> > > As I've been weaning off all the other "useless" BP meds a lot of > > my symptoms are subsiding but I've had one very undesirable side > > effect. As many of you know, I have a 5 month old baby boy I'm > > breastfeeding, and I started having shooting pain deep in my breast > > that developed about 6 weeks ago and has been getting worse, only on > > my left side. I started researching on the web and I think I'm > > having vasospasms due to Raynauds syndrome. http://pediatrics.aappublications.org/content/113/4/e360.full> > >> > > Since this is the 3rd child I have nursed and I have never > > experienced anything like this I can't help but wonder if this is > > caused by PA. Or possibly a "side effect" of being on unnecessary > > calcium channel blockers then taken off? Thoughts? I think it's very > > weird that only my left nipple is effected and no extremities. It's > > also weird that I get the blanching on my right nipple but no pain.> > >> > > I have spoken with Dr Lyssikatos from NIH 2x. Initially we > > discussed me joining the current study. After meeting with drs at > > WASHU here in STL I felt comfortable receiving treatment here, and > > the time & travel would be too difficult right now with a new baby > > who also has health problems, so I didn't think anything else of it. > > Dr Lyssikatos called me to follow up and I explained this to him and > > I mentioned I wished I could just donate my adrenal gland to them > > after surgery. To my surprise he said I COULD donate a tissue > > sample! I am working on making that happen. I wanted to make sure > > the group was aware this is a possibility and see if anyone else has > > been able to do this? If so any advice on how to make it happen? > > Thanks!> > >> > >> > > Virginia Wall> > > 31 year old female> > > DASHing> > > AVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO> > > 3 cm adenoma in right adrenal> > > Diagnosed February 2012> > > Low K & High BP since appx. 2007> > > Possible family history of hyperaldosteronism> > > Meds: K Cl 20 meq 2 tabs bid> > > Prenatal vitamin> > > Breastfeeding; 5 month old with G6PDD> > >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2012 Report Share Posted June 13, 2012 Interesting. My pain is different, like I had mentioned a sharp pain deep in my breast like electric shocks. It sounds like Mrs had similar on spiro, maybe it is the spiro. Your Raynauds, it's mostly just numbness, not a lot of the vasospasms?Virginia Wall31 year old femaleDASHingAVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO3 cm adenoma in right adrenalDiagnosed February 2012Low K & High BP since appx. 2007Possible family history of hyperaldosteronismMeds: K Cl 20 meq 2 tabs bidPrenatal vitaminBreastfeeding; 5 month old with G6PDDOn Jun 13, 2012, at 3:40 PM, Bingham <jlkbbk2003@...> wrote: I had breast pain - just the nipples, that is, and it felt like a rock or pebble under my nipples and anything that I bumped into or hit, and even my shirt sometimes, made it hurt like you-know-what. After I begun dashing, even a little bit, I was able to drop it from 50mg to 25mg a day, which was pretty amazing because for years NOTHING else worked and I had started on the spiro while already on 5 other BP meds and it had worked so fast to get my BP from 180/140 to 120/80 in a day. But I still had some breast pain at 25mg a day, then I dropped to 12.5mg a day and the pain stopped. I eventually was able to stop the spiro, though I took some last week because I was sick with a sinus infection and whatever the reason my BP jumped up. None the last couple of days. From: msmith_1928 <janeray1940@...>Subject: Re: Raynauds syndrome & NIHhyperaldosteronism Date: Wednesday, June 13, 2012, 12:29 AM Virginia, are you taking spiro? Didn't see that in the thumbnail so I assumed that the only med you are on is the K.I definitely had shooting pain in my breasts when I took spiro, so if you are taking spiro, Dr. Grim is probably right. I can't recall if it was lateralized to one side though. I do know that the more general, constant breast pain I got was worse on my left side, but it was definitely present on the right as well.> > >> > > As I've been weaning off all the other "useless" BP meds a lot of > > my symptoms are subsiding but I've had one very undesirable side > > effect. As many of you know, I have a 5 month old baby boy I'm > > breastfeeding, and I started having shooting pain deep in my breast > > that developed about 6 weeks ago and has been getting worse, only on > > my left side. I started researching on the web and I think I'm > > having vasospasms due to Raynauds syndrome. http://pediatrics.aappublications.org/content/113/4/e360.full> > >> > > Since this is the 3rd child I have nursed and I have never > > experienced anything like this I can't help but wonder if this is > > caused by PA. Or possibly a "side effect" of being on unnecessary > > calcium channel blockers then taken off? Thoughts? I think it's very > > weird that only my left nipple is effected and no extremities. It's > > also weird that I get the blanching on my right nipple but no pain.> > >> > > I have spoken with Dr Lyssikatos from NIH 2x. Initially we > > discussed me joining the current study. After meeting with drs at > > WASHU here in STL I felt comfortable receiving treatment here, and > > the time & travel would be too difficult right now with a new baby > > who also has health problems, so I didn't think anything else of it. > > Dr Lyssikatos called me to follow up and I explained this to him and > > I mentioned I wished I could just donate my adrenal gland to them > > after surgery. To my surprise he said I COULD donate a tissue > > sample! I am working on making that happen. I wanted to make sure > > the group was aware this is a possibility and see if anyone else has > > been able to do this? If so any advice on how to make it happen? > > Thanks!> > >> > >> > > Virginia Wall> > > 31 year old female> > > DASHing> > > AVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO> > > 3 cm adenoma in right adrenal> > > Diagnosed February 2012> > > Low K & High BP since appx. 2007> > > Possible family history of hyperaldosteronism> > > Meds: K Cl 20 meq 2 tabs bid> > > Prenatal vitamin> > > Breastfeeding; 5 month old with G6PDD> > >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2012 Report Share Posted June 13, 2012 Raynauds is a common side effect of BB. On any?May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jun 13, 2012, at 13:54, Virginia Wall <virgwall@...> wrote: , didn't you have "breast" pain on spiro? Can you describe it?Ok yeah keep me updated on the rheumatologist. Do your eyes water any other times? That triggered something for me, my eyes water all the time particularly when I'm eating or drinking for the last year. It drives me NUTS!VirginiaSent from my iPhone On Jun 13, 2012, at 12:56 PM, Bingham <jlkbbk2003@...> wrote: I tried nursing my kids but they couldn't get no milk so I have to let my wife do it! I have recently developed raynauds, a year or so - my hands/fingers go numb and white as a sheet, even in mild weather. But back in the day with the low K and Conn's in full undiagnosed force I don't ever recall anything like it. I also have a comes and goes numbness and tingle on my right side face for a couple of years now that is VERY irritating when it hits (seems vibration or sudden heat to cold/cold to heat does it - and starting to mow triggers it every time) and is only right side and makes me want to scratch my face off as it doesn't hurt, but feels like a hair is brushing across my face/cheek that I cannot get to. Happens less frequently when I am on magnesium. It makes my eye water bad so I have to pull over when it hits in the car. Don't recall either of these when my K was always low - unless I just masked it. My doc keeps saying they want me to see a rheumatologist, but they keep messing up the referral so it hasn't been addressed yet. If they think there is a connection I'll write about it and let you know . From: msmith_1928 <janeray1940@...>Subject: Re: Raynauds syndrome & NIHhyperaldosteronism Date: Wednesday, June 13, 2012, 12:29 AM Virginia, are you taking spiro? Didn't see that in the thumbnail so I assumed that the only med you are on is the K.I definitely had shooting pain in my breasts when I took spiro, so if you are taking spiro, Dr. Grim is probably right. I can't recall if it was lateralized to one side though. I do know that the more general, constant breast pain I got was worse on my left side, but it was definitely present on the right as well.> > >> > > As I've been weaning off all the other "useless" BP meds a lot of > > my symptoms are subsiding but I've had one very undesirable side > > effect. As many of you know, I have a 5 month old baby boy I'm > > breastfeeding, and I started having shooting pain deep in my breast > > that developed about 6 weeks ago and has been getting worse, only on > > my left side. I started researching on the web and I think I'm > > having vasospasms due to Raynauds syndrome. http://pediatrics.aappublications.org/content/113/4/e360.full> > >> > > Since this is the 3rd child I have nursed and I have never > > experienced anything like this I can't help but wonder if this is > > caused by PA. Or possibly a "side effect" of being on unnecessary > > calcium channel blockers then taken off? Thoughts? I think it's very > > weird that only my left nipple is effected and no extremities. It's > > also weird that I get the blanching on my right nipple but no pain.> > >> > > I have spoken with Dr Lyssikatos from NIH 2x. Initially we > > discussed me joining the current study. After meeting with drs at > > WASHU here in STL I felt comfortable receiving treatment here, and > > the time & travel would be too difficult right now with a new baby > > who also has health problems, so I didn't think anything else of it. > > Dr Lyssikatos called me to follow up and I explained this to him and > > I mentioned I wished I could just donate my adrenal gland to them > > after surgery. To my surprise he said I COULD donate a tissue > > sample! I am working on making that happen. I wanted to make sure > > the group was aware this is a possibility and see if anyone else has > > been able to do this? If so any advice on how to make it happen? > > Thanks!> > >> > >> > > Virginia Wall> > > 31 year old female> > > DASHing> > > AVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO> > > 3 cm adenoma in right adrenal> > > Diagnosed February 2012> > > Low K & High BP since appx. 2007> > > Possible family history of hyperaldosteronism> > > Meds: K Cl 20 meq 2 tabs bid> > > Prenatal vitamin> > > Breastfeeding; 5 month old with G6PDD> > >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2012 Report Share Posted June 13, 2012 Dr Grim- I was on labetalol until I weaned off it about 3 weeks ago!!! That might be it. Any guesstimate on this clearing up? Hopefully it's not permanent?Virginia Wall31 year old femaleDASHingAVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO3 cm adenoma in right adrenalDiagnosed February 2012Low K & High BP since appx. 2007Possible family history of hyperaldosteronismMeds: K Cl 20 meq 2 tabs bidPrenatal vitaminBreastfeeding; 5 month old with G6PDDOn Jun 13, 2012, at 9:19 PM, Clarence Grim <lowerbp2@...> wrote: Raynauds is a common side effect of BB. On any?May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jun 13, 2012, at 13:54, Virginia Wall <virgwall@...> wrote: , didn't you have "breast" pain on spiro? Can you describe it?Ok yeah keep me updated on the rheumatologist. Do your eyes water any other times? That triggered something for me, my eyes water all the time particularly when I'm eating or drinking for the last year. It drives me NUTS!VirginiaSent from my iPhone On Jun 13, 2012, at 12:56 PM, Bingham <jlkbbk2003@...> wrote: I tried nursing my kids but they couldn't get no milk so I have to let my wife do it! I have recently developed raynauds, a year or so - my hands/fingers go numb and white as a sheet, even in mild weather. But back in the day with the low K and Conn's in full undiagnosed force I don't ever recall anything like it. I also have a comes and goes numbness and tingle on my right side face for a couple of years now that is VERY irritating when it hits (seems vibration or sudden heat to cold/cold to heat does it - and starting to mow triggers it every time) and is only right side and makes me want to scratch my face off as it doesn't hurt, but feels like a hair is brushing across my face/cheek that I cannot get to. Happens less frequently when I am on magnesium. It makes my eye water bad so I have to pull over when it hits in the car. Don't recall either of these when my K was always low - unless I just masked it. My doc keeps saying they want me to see a rheumatologist, but they keep messing up the referral so it hasn't been addressed yet. If they think there is a connection I'll write about it and let you know . From: msmith_1928 <janeray1940@...>Subject: Re: Raynauds syndrome & NIHhyperaldosteronism Date: Wednesday, June 13, 2012, 12:29 AM Virginia, are you taking spiro? Didn't see that in the thumbnail so I assumed that the only med you are on is the K.I definitely had shooting pain in my breasts when I took spiro, so if you are taking spiro, Dr. Grim is probably right. I can't recall if it was lateralized to one side though. I do know that the more general, constant breast pain I got was worse on my left side, but it was definitely present on the right as well.> > >> > > As I've been weaning off all the other "useless" BP meds a lot of > > my symptoms are subsiding but I've had one very undesirable side > > effect. As many of you know, I have a 5 month old baby boy I'm > > breastfeeding, and I started having shooting pain deep in my breast > > that developed about 6 weeks ago and has been getting worse, only on > > my left side. I started researching on the web and I think I'm > > having vasospasms due to Raynauds syndrome. http://pediatrics.aappublications.org/content/113/4/e360.full> > >> > > Since this is the 3rd child I have nursed and I have never > > experienced anything like this I can't help but wonder if this is > > caused by PA. Or possibly a "side effect" of being on unnecessary > > calcium channel blockers then taken off? Thoughts? I think it's very > > weird that only my left nipple is effected and no extremities. It's > > also weird that I get the blanching on my right nipple but no pain.> > >> > > I have spoken with Dr Lyssikatos from NIH 2x. Initially we > > discussed me joining the current study. After meeting with drs at > > WASHU here in STL I felt comfortable receiving treatment here, and > > the time & travel would be too difficult right now with a new baby > > who also has health problems, so I didn't think anything else of it. > > Dr Lyssikatos called me to follow up and I explained this to him and > > I mentioned I wished I could just donate my adrenal gland to them > > after surgery. To my surprise he said I COULD donate a tissue > > sample! I am working on making that happen. I wanted to make sure > > the group was aware this is a possibility and see if anyone else has > > been able to do this? If so any advice on how to make it happen? > > Thanks!> > >> > >> > > Virginia Wall> > > 31 year old female> > > DASHing> > > AVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO> > > 3 cm adenoma in right adrenal> > > Diagnosed February 2012> > > Low K & High BP since appx. 2007> > > Possible family history of hyperaldosteronism> > > Meds: K Cl 20 meq 2 tabs bid> > > Prenatal vitamin> > > Breastfeeding; 5 month old with G6PDD> > >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2012 Report Share Posted June 13, 2012 Heh heh heh. My beer is on the labetalol.May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jun 13, 2012, at 21:42, Virginia Wall <virgwall@...> wrote: Dr Grim- I was on labetalol until I weaned off it about 3 weeks ago!!! That might be it. Any guesstimate on this clearing up? Hopefully it's not permanent?Virginia Wall31 year old femaleDASHingAVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO3 cm adenoma in right adrenalDiagnosed February 2012Low K & High BP since appx. 2007Possible family history of hyperaldosteronismMeds: K Cl 20 meq 2 tabs bidPrenatal vitaminBreastfeeding; 5 month old with G6PDDOn Jun 13, 2012, at 9:19 PM, Clarence Grim <lowerbp2@...> wrote: Raynauds is a common side effect of BB. On any?May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jun 13, 2012, at 13:54, Virginia Wall <virgwall@...> wrote: , didn't you have "breast" pain on spiro? Can you describe it?Ok yeah keep me updated on the rheumatologist. Do your eyes water any other times? That triggered something for me, my eyes water all the time particularly when I'm eating or drinking for the last year. It drives me NUTS!VirginiaSent from my iPhone On Jun 13, 2012, at 12:56 PM, Bingham <jlkbbk2003@...> wrote: I tried nursing my kids but they couldn't get no milk so I have to let my wife do it! I have recently developed raynauds, a year or so - my hands/fingers go numb and white as a sheet, even in mild weather. But back in the day with the low K and Conn's in full undiagnosed force I don't ever recall anything like it. I also have a comes and goes numbness and tingle on my right side face for a couple of years now that is VERY irritating when it hits (seems vibration or sudden heat to cold/cold to heat does it - and starting to mow triggers it every time) and is only right side and makes me want to scratch my face off as it doesn't hurt, but feels like a hair is brushing across my face/cheek that I cannot get to. Happens less frequently when I am on magnesium. It makes my eye water bad so I have to pull over when it hits in the car. Don't recall either of these when my K was always low - unless I just masked it. My doc keeps saying they want me to see a rheumatologist, but they keep messing up the referral so it hasn't been addressed yet. If they think there is a connection I'll write about it and let you know . From: msmith_1928 <janeray1940@...>Subject: Re: Raynauds syndrome & NIHhyperaldosteronism Date: Wednesday, June 13, 2012, 12:29 AM Virginia, are you taking spiro? Didn't see that in the thumbnail so I assumed that the only med you are on is the K.I definitely had shooting pain in my breasts when I took spiro, so if you are taking spiro, Dr. Grim is probably right. I can't recall if it was lateralized to one side though. I do know that the more general, constant breast pain I got was worse on my left side, but it was definitely present on the right as well.> > >> > > As I've been weaning off all the other "useless" BP meds a lot of > > my symptoms are subsiding but I've had one very undesirable side > > effect. As many of you know, I have a 5 month old baby boy I'm > > breastfeeding, and I started having shooting pain deep in my breast > > that developed about 6 weeks ago and has been getting worse, only on > > my left side. I started researching on the web and I think I'm > > having vasospasms due to Raynauds syndrome. http://pediatrics.aappublications.org/content/113/4/e360.full> > >> > > Since this is the 3rd child I have nursed and I have never > > experienced anything like this I can't help but wonder if this is > > caused by PA. Or possibly a "side effect" of being on unnecessary > > calcium channel blockers then taken off? Thoughts? I think it's very > > weird that only my left nipple is effected and no extremities. It's > > also weird that I get the blanching on my right nipple but no pain.> > >> > > I have spoken with Dr Lyssikatos from NIH 2x. Initially we > > discussed me joining the current study. After meeting with drs at > > WASHU here in STL I felt comfortable receiving treatment here, and > > the time & travel would be too difficult right now with a new baby > > who also has health problems, so I didn't think anything else of it. > > Dr Lyssikatos called me to follow up and I explained this to him and > > I mentioned I wished I could just donate my adrenal gland to them > > after surgery. To my surprise he said I COULD donate a tissue > > sample! I am working on making that happen. I wanted to make sure > > the group was aware this is a possibility and see if anyone else has > > been able to do this? If so any advice on how to make it happen? > > Thanks!> > >> > >> > > Virginia Wall> > > 31 year old female> > > DASHing> > > AVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO> > > 3 cm adenoma in right adrenal> > > Diagnosed February 2012> > > Low K & High BP since appx. 2007> > > Possible family history of hyperaldosteronism> > > Meds: K Cl 20 meq 2 tabs bid> > > Prenatal vitamin> > > Breastfeeding; 5 month old with G6PDD> > >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2012 Report Share Posted June 13, 2012 If you were breastfeeding labetolol was it. They don't use any others. From: msmith_1928 <janeray1940@...>Subject: Re: Raynauds syndrome & NIHhyperaldosteronism Date: Wednesday, June 13, 2012, 12:29 AM Virginia, are you taking spiro? Didn't see that in the thumbnail so I assumed that the only med you are on is the K.I definitely had shooting pain in my breasts when I took spiro, so if you are taking spiro, Dr. Grim is probably right. I can't recall if it was lateralized to one side though. I do know that the more general, constant breast pain I got was worse on my left side, but it was definitely present on the right as well.> > >> > > As I've been weaning off all the other "useless" BP meds a lot of > > my symptoms are subsiding but I've had one very undesirable side > > effect. As many of you know, I have a 5 month old baby boy I'm > > breastfeeding, and I started having shooting pain deep in my breast > > that developed about 6 weeks ago and has been getting worse, only on > > my left side. I started researching on the web and I think I'm > > having vasospasms due to Raynauds syndrome. http://pediatrics.aappublications.org/content/113/4/e360.full> > >> > > Since this is the 3rd child I have nursed and I have never > > experienced anything like this I can't help but wonder if this is > > caused by PA. Or possibly a "side effect" of being on unnecessary > > calcium channel blockers then taken off? Thoughts? I think it's very > > weird that only my left nipple is effected and no extremities. It's > > also weird that I get the blanching on my right nipple but no pain.> > >> > > I have spoken with Dr Lyssikatos from NIH 2x. Initially we > > discussed me joining the current study. After meeting with drs at > > WASHU here in STL I felt comfortable receiving treatment here, and > > the time & travel would be too difficult right now with a new baby > > who also has health problems, so I didn't think anything else of it. > > Dr Lyssikatos called me to follow up and I explained this to him and > > I mentioned I wished I could just donate my adrenal gland to them > > after surgery. To my surprise he said I COULD donate a tissue > > sample! I am working on making that happen. I wanted to make sure > > the group was aware this is a possibility and see if anyone else has > > been able to do this? If so any advice on how to make it happen? > > Thanks!> > >> > >> > > Virginia Wall> > > 31 year old female> > > DASHing> > > AVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO> > > 3 cm adenoma in right adrenal> > > Diagnosed February 2012> > > Low K & High BP since appx. 2007> > > Possible family history of hyperaldosteronism> > > Meds: K Cl 20 meq 2 tabs bid> > > Prenatal vitamin> > > Breastfeeding; 5 month old with G6PDD> > >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2012 Report Share Posted June 14, 2012 Not permanent. Due to unapposed alpha effect when Betas are blocked. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jun 13, 2012, at 23:48, Bingham <jlkbbk2003@...> wrote: If you were breastfeeding labetolol was it. They don't use any others. From: msmith_1928 <janeray1940@...>Subject: Re: Raynauds syndrome & NIHhyperaldosteronism Date: Wednesday, June 13, 2012, 12:29 AM Virginia, are you taking spiro? Didn't see that in the thumbnail so I assumed that the only med you are on is the K.I definitely had shooting pain in my breasts when I took spiro, so if you are taking spiro, Dr. Grim is probably right. I can't recall if it was lateralized to one side though. I do know that the more general, constant breast pain I got was worse on my left side, but it was definitely present on the right as well.> > >> > > As I've been weaning off all the other "useless" BP meds a lot of > > my symptoms are subsiding but I've had one very undesirable side > > effect. As many of you know, I have a 5 month old baby boy I'm > > breastfeeding, and I started having shooting pain deep in my breast > > that developed about 6 weeks ago and has been getting worse, only on > > my left side. I started researching on the web and I think I'm > > having vasospasms due to Raynauds syndrome. http://pediatrics.aappublications.org/content/113/4/e360.full> > >> > > Since this is the 3rd child I have nursed and I have never > > experienced anything like this I can't help but wonder if this is > > caused by PA. Or possibly a "side effect" of being on unnecessary > > calcium channel blockers then taken off? Thoughts? I think it's very > > weird that only my left nipple is effected and no extremities. It's > > also weird that I get the blanching on my right nipple but no pain.> > >> > > I have spoken with Dr Lyssikatos from NIH 2x. Initially we > > discussed me joining the current study. After meeting with drs at > > WASHU here in STL I felt comfortable receiving treatment here, and > > the time & travel would be too difficult right now with a new baby > > who also has health problems, so I didn't think anything else of it. > > Dr Lyssikatos called me to follow up and I explained this to him and > > I mentioned I wished I could just donate my adrenal gland to them > > after surgery. To my surprise he said I COULD donate a tissue > > sample! I am working on making that happen. I wanted to make sure > > the group was aware this is a possibility and see if anyone else has > > been able to do this? If so any advice on how to make it happen? > > Thanks!> > >> > >> > > Virginia Wall> > > 31 year old female> > > DASHing> > > AVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO> > > 3 cm adenoma in right adrenal> > > Diagnosed February 2012> > > Low K & High BP since appx. 2007> > > Possible family history of hyperaldosteronism> > > Meds: K Cl 20 meq 2 tabs bid> > > Prenatal vitamin> > > Breastfeeding; 5 month old with G6PDD> > >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2012 Report Share Posted June 14, 2012 Hi Virginia, Could the pain be thrush/yeast? If you or the baby have had antibiotics since the birth you could be passing yeast infection back and forth. Pain can be immense if it is in the ducts. Try eliminating all sugar from your diet and getting gentian violet at a pharmacy or nystatin from ob prescription. 40 yr old mom to six diagnoses w/ PA in 2007 currently breastfeeding 5 mo old daughter not on spiro > > > > As I've been weaning off all the other " useless " BP meds a lot of my symptoms are subsiding but I've had one very undesirable side effect. As many of you know, I have a 5 month old baby boy I'm breastfeeding, and I started having shooting pain deep in my breast that developed about 6 weeks ago and has been getting worse, only on my left side. I started researching on the web and I think I'm having vasospasms due to Raynauds syndrome. http://pediatrics.aappublications.org/content/113/4/e360.full > > > > Since this is the 3rd child I have nursed and I have never experienced anything like this I can't help but wonder if this is caused by PA. Or possibly a " side effect " of being on unnecessary calcium channel blockers then taken off? Thoughts? I think it's very weird that only my left nipple is effected and no extremities. It's also weird that I get the blanching on my right nipple but no pain. > > > > I have spoken with Dr Lyssikatos from NIH 2x. Initially we discussed me joining the current study. After meeting with drs at WASHU here in STL I felt comfortable receiving treatment here, and the time & travel would be too difficult right now with a new baby who also has health problems, so I didn't think anything else of it. Dr Lyssikatos called me to follow up and I explained this to him and I mentioned I wished I could just donate my adrenal gland to them after surgery. To my surprise he said I COULD donate a tissue sample! I am working on making that happen. I wanted to make sure the group was aware this is a possibility and see if anyone else has been able to do this? If so any advice on how to make it happen? Thanks! > > > > > > Virginia Wall > > 31 year old female > > DASHing > > AVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO > > 3 cm adenoma in right adrenal > > Diagnosed February 2012 > > Low K & High BP since appx. 2007 > > Possible family history of hyperaldosteronism > > Meds: K Cl 20 meq 2 tabs bid > > Prenatal vitamin > > Breastfeeding; 5 month old with G6PDD > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2012 Report Share Posted June 14, 2012 But was on Spiro? It takes some time for pain to go away but check with your team. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jun 14, 2012, at 14:08, mmcandmcc <mmcandmcc@...> wrote: Hi Virginia, Could the pain be thrush/yeast? If you or the baby have had antibiotics since the birth you could be passing yeast infection back and forth. Pain can be immense if it is in the ducts. Try eliminating all sugar from your diet and getting gentian violet at a pharmacy or nystatin from ob prescription. 40 yr old mom to six diagnoses w/ PA in 2007 currently breastfeeding 5 mo old daughter not on spiro > > > > As I've been weaning off all the other "useless" BP meds a lot of my symptoms are subsiding but I've had one very undesirable side effect. As many of you know, I have a 5 month old baby boy I'm breastfeeding, and I started having shooting pain deep in my breast that developed about 6 weeks ago and has been getting worse, only on my left side. I started researching on the web and I think I'm having vasospasms due to Raynauds syndrome. http://pediatrics.aappublications.org/content/113/4/e360.full > > > > Since this is the 3rd child I have nursed and I have never experienced anything like this I can't help but wonder if this is caused by PA. Or possibly a "side effect" of being on unnecessary calcium channel blockers then taken off? Thoughts? I think it's very weird that only my left nipple is effected and no extremities. It's also weird that I get the blanching on my right nipple but no pain. > > > > I have spoken with Dr Lyssikatos from NIH 2x. Initially we discussed me joining the current study. After meeting with drs at WASHU here in STL I felt comfortable receiving treatment here, and the time & travel would be too difficult right now with a new baby who also has health problems, so I didn't think anything else of it. Dr Lyssikatos called me to follow up and I explained this to him and I mentioned I wished I could just donate my adrenal gland to them after surgery. To my surprise he said I COULD donate a tissue sample! I am working on making that happen. I wanted to make sure the group was aware this is a possibility and see if anyone else has been able to do this? If so any advice on how to make it happen? Thanks! > > > > > > Virginia Wall > > 31 year old female > > DASHing > > AVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO > > 3 cm adenoma in right adrenal > > Diagnosed February 2012 > > Low K & High BP since appx. 2007 > > Possible family history of hyperaldosteronism > > Meds: K Cl 20 meq 2 tabs bid > > Prenatal vitamin > > Breastfeeding; 5 month old with G6PDD > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2012 Report Share Posted June 14, 2012 Hi , Thanks so much for the suggestion. My PCP considered thrush but considering I have not been on antibiotics or any other symptoms of thrush she did not think that was the case. But you're right, thrush can definitely cause vasospasms like I'm experiencing and perhaps shouldn't be ruled out too quickly! I will take your suggestions, thank you again. VirginiaSent from my iPhone On Jun 14, 2012, at 2:08 PM, "mmcandmcc" <mmcandmcc@...> wrote: Hi Virginia, Could the pain be thrush/yeast? If you or the baby have had antibiotics since the birth you could be passing yeast infection back and forth. Pain can be immense if it is in the ducts. Try eliminating all sugar from your diet and getting gentian violet at a pharmacy or nystatin from ob prescription. 40 yr old mom to six diagnoses w/ PA in 2007 currently breastfeeding 5 mo old daughter not on spiro > > > > As I've been weaning off all the other "useless" BP meds a lot of my symptoms are subsiding but I've had one very undesirable side effect. As many of you know, I have a 5 month old baby boy I'm breastfeeding, and I started having shooting pain deep in my breast that developed about 6 weeks ago and has been getting worse, only on my left side. I started researching on the web and I think I'm having vasospasms due to Raynauds syndrome. http://pediatrics.aappublications.org/content/113/4/e360.full > > > > Since this is the 3rd child I have nursed and I have never experienced anything like this I can't help but wonder if this is caused by PA. Or possibly a "side effect" of being on unnecessary calcium channel blockers then taken off? Thoughts? I think it's very weird that only my left nipple is effected and no extremities. It's also weird that I get the blanching on my right nipple but no pain. > > > > I have spoken with Dr Lyssikatos from NIH 2x. Initially we discussed me joining the current study. After meeting with drs at WASHU here in STL I felt comfortable receiving treatment here, and the time & travel would be too difficult right now with a new baby who also has health problems, so I didn't think anything else of it. Dr Lyssikatos called me to follow up and I explained this to him and I mentioned I wished I could just donate my adrenal gland to them after surgery. To my surprise he said I COULD donate a tissue sample! I am working on making that happen. I wanted to make sure the group was aware this is a possibility and see if anyone else has been able to do this? If so any advice on how to make it happen? Thanks! > > > > > > Virginia Wall > > 31 year old female > > DASHing > > AVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO > > 3 cm adenoma in right adrenal > > Diagnosed February 2012 > > Low K & High BP since appx. 2007 > > Possible family history of hyperaldosteronism > > Meds: K Cl 20 meq 2 tabs bid > > Prenatal vitamin > > Breastfeeding; 5 month old with G6PDD > > > Quote Link to comment Share on other sites More sharing options...
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