Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 Hi Jodi. My name is Gwen and I have a soon to be 7 yr old with austism/SPD. Welcome to the group. I am from Louisiana.Sent from my iPhoneGwen HebertOn Sep 25, 2009, at 1:26 PM, "crandjr1999" <crandjr1999@...> wrote: Hello everyone, My name is Jodi. My hubby, Carl and I have an 8 year old son with autism and epilipsy. We also have 4 and 6 boys. We live in Nebraska. I can't wait to get to know everyone JODI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 Jodi, Welcome to the group. You will find lots of wonderful information here. I myself have 6 sons ages 14,10,8,5,4,and 1. My 8 yr old is autistic and my 5 yr old is autistic with epilepsy. Welcome again. Jenni, Fl > > Hello everyone, My name is Jodi. My hubby, Carl and I have an 8 year old son with autism and epilipsy. We also have 4 and 6 boys. We live in Nebraska. I can't wait to get to know everyone > > JODI > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2009 Report Share Posted September 26, 2009 Welcome Jodi! Iam mom to JJ () age 21 with autism. I have a step-daughter named Jodi! LOL! Lois intro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2009 Report Share Posted September 26, 2009 Welcome Jodi! Iam mom to JJ () age 21 with autism. I have a step-daughter named Jodi! LOL! Lois intro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2009 Report Share Posted September 26, 2009 Hi, Jodi...welcome to the group! e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2009 Report Share Posted September 26, 2009 Hi, Jodi...welcome to the group! e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2009 Report Share Posted September 26, 2009 Welcome Jodi. I'm Pat K the grandmother of a 17 year old autistic grandson. I diagnosed him before he was three and did an ABA program with him until he started school. I still have him every day after school; I try to maintain what we taught him berfore he started to school. I think you will find this group very loving, kind, wise, and helpful. intro Hello everyone, My name is Jodi. My hubby, Carl and I have an 8 year old son with autism and epilipsy. We also have 4 and 6 boys. We live in Nebraska. I can't wait to get to know everyone JODI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2009 Report Share Posted September 26, 2009 Welcome Jodi. I'm Pat K the grandmother of a 17 year old autistic grandson. I diagnosed him before he was three and did an ABA program with him until he started school. I still have him every day after school; I try to maintain what we taught him berfore he started to school. I think you will find this group very loving, kind, wise, and helpful. intro Hello everyone, My name is Jodi. My hubby, Carl and I have an 8 year old son with autism and epilipsy. We also have 4 and 6 boys. We live in Nebraska. I can't wait to get to know everyone JODI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2009 Report Share Posted September 26, 2009 Jodi, Welcome to the group! lookinhg forward to getting to know you also.. Lesley -- intro Hello everyone, My name is Jodi. My hubby, Carl and I have an 8 year old son with autism and epilipsy. We also have 4 and 6 boys. We live in Nebraska. I can't wait to get to know everyoneJODI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2009 Report Share Posted September 26, 2009 Jodi, Welcome to the group! lookinhg forward to getting to know you also.. Lesley -- intro Hello everyone, My name is Jodi. My hubby, Carl and I have an 8 year old son with autism and epilipsy. We also have 4 and 6 boys. We live in Nebraska. I can't wait to get to know everyoneJODI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2009 Report Share Posted October 21, 2009 We've traveled to Bahamas, London, Malta, Germany, Holland, Sweden, etc. Never asked for immunizations. Has there been a recent change? Toni Mom to Cyrus, Darius, Remi Rose & WillowSent from my iPhoneNmidaughterseyes@...On Oct 21, 2009, at 1:05 PM, Chappell-Lakin <kchappelllakin@...> wrote: Hello.I've just joined this group, and look forward to learning from you all. We started out vaxing very sporatically, and not until after age 2. We have now come to a point of not vaccinating at all. My oldest daughter was found to have low IgA levels, and was diagnosed with IgA deficiency. I'm curious if anyone else on this list has a child with IgA deficiency and has decided not to vaccinate or has stopped vaccinating. Also, I'd love to hear from anyone who has done some international travel without vaccinating. We are heading to Uruguay with unvaccinated kids in December.Thanks in advance for your input!__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2009 Report Share Posted October 21, 2009 Hello. I've just joined this group, and look forward to learning from you all. We started out vaxing very sporatically, and not until after age 2. We have now come to a point of not vaccinating at all. My oldest daughter was found to have low IgA levels, and was diagnosed with IgA deficiency. I'm curious if anyone else on this list has a child with IgA deficiency and has decided not to vaccinate or has stopped vaccinating. Is her IgA issue after vaccines? What are her symptoms? How did you discover this? No vaccines give immunity anyway - whether you have deficiency or no deficiency - so why bother - you will learn lots on this list Also, I'd love to hear from anyone who has done some international travel without vaccinating. We are heading to Uruguay with unvaccinated kids in December. there are NO vaccine requirements for any country in the world except some for yellow fever vaccine (also polio vax for some children traveling to Brazil, they say - there must be ways out of it though) Uruguay is not in that zone unless arriving from a yellow-fever-infected area in Africa or the Americas http://www.yellowfever.com.au/vaccine.html I travel all over the world and don't vaccinate Welcome Sheri listowner Thanks in advance for your input! Sheri Nakken, R.N., MA, Hahnemannian Homeopath Vaccination Information & Choice Network, Washington State, USA Vaccines - http://www.nccn.net/~wwithin/vaccine.htm or http://www.wellwithin1.com/vaccine.htm Vaccine Dangers, Childhood Disease Classes & Homeopathy Online/email courses - next classes start October 28 & 29 http://www.wellwithin1.com/vaccineclass.htm or http://www.wellwithin1.com/homeo.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2010 Report Share Posted February 12, 2010 *delurk* Christy My episodes are exactly like yours except my blood pressure is high all the time now. My last K was 2.5 (yay me ) and I was off every medication that could rip it down that low. In the past 3 months, I've been to the ER 4 times. I have edema and have to take 12.5mg HCTZ or I can't walk. All the doctors say this could not lower my K that much, and I do eat high K foods, plus black strap molasses plus a supplement. I don't know if it is Conn's or not, but wanted to let you know, you aren't the only one. Nanci-->getting worked up for Conn's, on 0.1mg Catapres and 12.5 mg HCTZ Sent from my Verizon Wireless BlackBerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2010 Report Share Posted February 12, 2010 *delurk* Christy My episodes are exactly like yours except my blood pressure is high all the time now. My last K was 2.5 (yay me ) and I was off every medication that could rip it down that low. In the past 3 months, I've been to the ER 4 times. I have edema and have to take 12.5mg HCTZ or I can't walk. All the doctors say this could not lower my K that much, and I do eat high K foods, plus black strap molasses plus a supplement. I don't know if it is Conn's or not, but wanted to let you know, you aren't the only one. Nanci-->getting worked up for Conn's, on 0.1mg Catapres and 12.5 mg HCTZ Sent from my Verizon Wireless BlackBerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2010 Report Share Posted February 12, 2010 Christy,For got to add this, how did the ER not just blow off your symptoms to lousy eating habits and panic attacks?10 years ago, this mess started for me, and even with the low K, it was just blow off to anxiety/panic attacks. I'm impressed the ER took you seriously. My EKG strips were "normal", except for the 150 heart rate. Or as the ER doctor said, " you're just a little tachy."Didn't matter that I ate a no salt/no junk food diet, and no history of mental illness. I got labeled as a nut. I was told the next time the episode happened to breathe into a bag and eat more bananas (which I'm anaphylactic to- big help) NanciSent from my Verizon Wireless BlackBerryFrom: Christy <christycassius@...>Date: Fri, 12 Feb 2010 21:33:57 -0800 (PST)hyperaldosteronism <hyperaldosteronism >Subject: Intro My name is Christy and I have just been referred to an endocrineologist with a possible dx of Conn's disease. For the past few months, I have been in and out of the ER for near fainting and heart palpatations. Each time my blood pressure has shot up out of the blue and my K has been low. I was put on metropol 25 mg and a k supplement. Even though I am on the k supplement and eat a high k diet my k barely makes it to 3.5. My symptoms seem to come on suddenly. My normal bp is 90/65 with a hr of 78, but with each episode I'll all of a sudden feel faint, get very cold, and my bp jumps to 154/104 with a hr of 150-160. Is this typical for Conn's? I've always had low bp and never had these sypmtoms before. I do urinate like 6 times a night, get facial flushing, never sweat, and am always cold. Because of this I now have a lot of anxiety. Any help and encouragement will be greatly appreciated as I am just starting what looks like a long journey. Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2010 Report Share Posted February 13, 2010 My mom was on hctz and her k was so low her doctor started her by taking 4 potasium pills and increased it to 12/day still low. It took me a good 5 months of asking him to stop her hctz. Once he did within a week her k was normal - her doctor was so surprized.Sent from my iPodOn Feb 12, 2010, at 10:19 PM, lilbatz@... wrote: *delurk* Christy My episodes are exactly like yours except my blood pressure is high all the time now. My last K was 2.5 (yay me ) and I was off every medication that could rip it down that low. In the past 3 months, I've been to the ER 4 times. I have edema and have to take 12.5mg HCTZ or I can't walk. All the doctors say this could not lower my K that much, and I do eat high K foods, plus black strap molasses plus a supplement. I don't know if it is Conn's or not, but wanted to let you know, you aren't the only one. Nanci-->getting worked up for Conn's, on 0.1mg Catapres and 12.5 mg HCTZ Sent from my Verizon Wireless BlackBerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2010 Report Share Posted February 13, 2010 My mom was on hctz and her k was so low her doctor started her by taking 4 potasium pills and increased it to 12/day still low. It took me a good 5 months of asking him to stop her hctz. Once he did within a week her k was normal - her doctor was so surprized.Sent from my iPodOn Feb 12, 2010, at 10:19 PM, lilbatz@... wrote: *delurk* Christy My episodes are exactly like yours except my blood pressure is high all the time now. My last K was 2.5 (yay me ) and I was off every medication that could rip it down that low. In the past 3 months, I've been to the ER 4 times. I have edema and have to take 12.5mg HCTZ or I can't walk. All the doctors say this could not lower my K that much, and I do eat high K foods, plus black strap molasses plus a supplement. I don't know if it is Conn's or not, but wanted to let you know, you aren't the only one. Nanci-->getting worked up for Conn's, on 0.1mg Catapres and 12.5 mg HCTZ Sent from my Verizon Wireless BlackBerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2010 Report Share Posted February 13, 2010 Yes, I also heard that I was having panic attacks when my symptoms started in 2008; which I wasn't - until after my heart started beating fast and hard in my chest out of the blue, my face would flush, and I would feel dizzy; that will bring on some panic! It would happen sitting at my desk, in my car, in the middle of the night to wake me out of sleep, whenever. I have also heard menopause repeatedly; I'm not convinced all or even most of my symptoms are attributable to menopause (my gyn said they are not), but I think it is an easy answer to any woman's symptoms in her late 40s. Christy, I do not have a diagnosis yet either. I also had BP normally very low, 90/60; hr 60s. Until 2 years ago when my symptoms started. My story is posted in Files under Conns Stories. I forgot when I wrote it to mention I had easy bruising when this started in '08; and now I have a low level frontal headache almost all of the time (how could I forget that? I never had headaches until recently, now it is like a way of life). I had a boatload of original labs from 2008 but the file was so big I took it down, don't want to overload the group storage capacity; the notable results related to PA, if I might have that, are that renin was low and aldo normal. Now renin normal and aldo low; still, my current endo attributes my symptoms to menopause, and recommends I drink less water. So I am going to a new endo on Monday, hope for different testing at least; I saw Dr Grim's file indicating 24 hour urine for NA, K, aldo, and creatinine might be appropriate. My serum K has never been low, except to 3.4 in the first set of labs when this started; it is now high, probalby due to captopril. Suzanne > > Christy, > > For got to add this, how did the ER not just blow off your symptoms to lousy eating habits and panic attacks? > > 10 years ago, this mess started for me, and even with the low K, it was just blow off to anxiety/panic attacks. I'm impressed the ER took you seriously. My EKG strips were " normal " , except for the 150 heart rate. Or as the ER doctor said, " you're just a little tachy. " > > Didn't matter that I ate a no salt/no junk food diet, and no history of mental illness. I got labeled as a nut. I was told the next time the episode happened to breathe into a bag and eat more bananas (which I'm anaphylactic to- big help) > > Nanci > > Sent from my Verizon Wireless BlackBerry > > Intro > > My name is Christy and I have just been referred to an endocrineologist with a possible dx of Conn's disease. For the past few months, I have been in and out of the ER for near fainting and heart palpatations. Each time my blood pressure has shot up out of the blue and my K has been low. I was put on metropol 25 mg and a k supplement. Even though I am on the k supplement and eat a high k diet my k barely makes it to 3.5. My symptoms seem to come on suddenly. My normal bp is 90/65 with a hr of 78, but with each episode I'll all of a sudden feel faint, get very cold, and my bp jumps to 154/104 with a hr of 150-160. Is this typical for Conn's? I've always had low bp and never had these sypmtoms before. I do urinate like 6 times a night, get facial flushing, never sweat, and am always cold. Because of this I now have a lot of anxiety. Any help and encouragement will be greatly appreciated as I am just starting what looks like a long journey. > > Sent from my iPhone > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2010 Report Share Posted February 13, 2010 Yes, I also heard that I was having panic attacks when my symptoms started in 2008; which I wasn't - until after my heart started beating fast and hard in my chest out of the blue, my face would flush, and I would feel dizzy; that will bring on some panic! It would happen sitting at my desk, in my car, in the middle of the night to wake me out of sleep, whenever. I have also heard menopause repeatedly; I'm not convinced all or even most of my symptoms are attributable to menopause (my gyn said they are not), but I think it is an easy answer to any woman's symptoms in her late 40s. Christy, I do not have a diagnosis yet either. I also had BP normally very low, 90/60; hr 60s. Until 2 years ago when my symptoms started. My story is posted in Files under Conns Stories. I forgot when I wrote it to mention I had easy bruising when this started in '08; and now I have a low level frontal headache almost all of the time (how could I forget that? I never had headaches until recently, now it is like a way of life). I had a boatload of original labs from 2008 but the file was so big I took it down, don't want to overload the group storage capacity; the notable results related to PA, if I might have that, are that renin was low and aldo normal. Now renin normal and aldo low; still, my current endo attributes my symptoms to menopause, and recommends I drink less water. So I am going to a new endo on Monday, hope for different testing at least; I saw Dr Grim's file indicating 24 hour urine for NA, K, aldo, and creatinine might be appropriate. My serum K has never been low, except to 3.4 in the first set of labs when this started; it is now high, probalby due to captopril. Suzanne > > Christy, > > For got to add this, how did the ER not just blow off your symptoms to lousy eating habits and panic attacks? > > 10 years ago, this mess started for me, and even with the low K, it was just blow off to anxiety/panic attacks. I'm impressed the ER took you seriously. My EKG strips were " normal " , except for the 150 heart rate. Or as the ER doctor said, " you're just a little tachy. " > > Didn't matter that I ate a no salt/no junk food diet, and no history of mental illness. I got labeled as a nut. I was told the next time the episode happened to breathe into a bag and eat more bananas (which I'm anaphylactic to- big help) > > Nanci > > Sent from my Verizon Wireless BlackBerry > > Intro > > My name is Christy and I have just been referred to an endocrineologist with a possible dx of Conn's disease. For the past few months, I have been in and out of the ER for near fainting and heart palpatations. Each time my blood pressure has shot up out of the blue and my K has been low. I was put on metropol 25 mg and a k supplement. Even though I am on the k supplement and eat a high k diet my k barely makes it to 3.5. My symptoms seem to come on suddenly. My normal bp is 90/65 with a hr of 78, but with each episode I'll all of a sudden feel faint, get very cold, and my bp jumps to 154/104 with a hr of 150-160. Is this typical for Conn's? I've always had low bp and never had these sypmtoms before. I do urinate like 6 times a night, get facial flushing, never sweat, and am always cold. Because of this I now have a lot of anxiety. Any help and encouragement will be greatly appreciated as I am just starting what looks like a long journey. > > Sent from my iPhone > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2010 Report Share Posted February 13, 2010 Christy: you have at least group hyperaldosteronism and you need to have your Endo do the right tests ASAP. See belo: Welcome to the exciting world of Hyperaldosteronism I am Dr. CE Grim a retired Professor of Medicine and Endocrinology. I have had a long standing interest is Primary Aldosteronism since medical school days when I saw my first patient with Primary Aldosteronism in 1963. I trained with Dr. Conn in Endocrinology and Metabolism 1969-70 and have published over 240 papers and book chapters in most areas of the broad discipline of High Blood Pressure. My CV is in our files for details. The goal of our group is to teach you and your health care team about the ins and outs of the causes, diagnosis and control of the many forms of hyperaldosteronism. The steps below will introduce you into the fascinating world of high blood pressure, salt and potassium and the role of the adrenal hormone aldosterone in health and disease. Doing these in sequence will save you time and effort in getting up to speed in taking control of you health and educating your own health care team. While we can’t make you a doctor we will make you into a pretty good BP doctor-a skill that you will have for life. 1. Overview: Read my article in our files on the evolution of PA (Evolution_of_PA-Grim.pdf ) and take to all members of health care team. Tell us what stage you believe you are in. This is a brief review of most causes of hyperaldosteronism, high blood pressure, low potassium (K). 2. Other patients with hyperaldosteronism (Conn’s syndrome). Read our Conn's stories in our files and then give us your own in as much detail as you can. Dr. Conn was the first to describe this disease process and the syndrome is named after him. To see others' stories, on the Hyperaldosteronism home page, go to Files/Conn’s Stories. You'll find instructions in "A - How to put your story here.doc " First send us your story in an email and they we may have questions and suggestions before you upload it to our files. 3. Eating Plan to controlling high blood pressure due to hyperaldosteronism and most others with high blood pressure This will reducing your need for medications and in many will get your BP and K to goal without meds.. Get the DASH diet book by T. et al, read it and use it: $8 in paperback at your local bookstore. If they don’t have it ask them to order it for you. Learning to eat the DASH way will play a major role in your road to good BP and K control and, in many of our folks here, will revolutionize your life. Go to chapter 9 and do the 14 day challenge. Tell your Dr you are doing this as your BP may plummet if you are on other meds. or go to http://www.nhlbi.nih.gov/health/public/heart/hbp/dash/new_dash.pdf download this 64 page booklet free and do the Week on the DASH Diet for 2 weeks. If you are on BP meds be prepared for a large fall in BP and let your Dr. know you are doing this. I strongly recommend you get this book and read it. 4. Measure your BP: Measure your BP daily so you can see if it is getting better. If you are taking meds be sure to tell your health care team you are doing this as your BP may plummet to normal quickly. We recommend you use a device you listen to and will help you learn how to do this. If this is not something you want to do we can teach a significant other how to do it. See sharedcareinc.com or email to sharedcare@... to order a video on how to do this. If you already have one we will teach you how to teach your health care team how to validate your device. Your life and health depends on accurate BP measurements. Go to the amricanheart.org and download the Guidelines for Human Blood Pressure Measurement. Insist the your health care team do BP the AHA way. Never trust your life to an automatic BP machine unless you know it is accurate on YOU. 5. Genetics and your BP: Go to familyhistory.hhs.gov and do your detailed family medical history so we can review with you to help Dx familial causes of high blood pressure and heart disease. If BP runs in your family you may save lives in your family by checking their BP yourself. 6. How to DX and treat PA: Go to our file /Conn's Articles of Note/Medications/Bravo spir 1973.pdf and read this article and take to your health care team. It is old but still one of the best in the medical management of PA. Also see our file from the Endocrine Society Guidelines on PA. Dr. Grim's Perfect Primary Aldosteronism Blood and Urine Testing to diagnose PA in one day. 1. Eat a regular to high salt diet for 2 weeks. 2. No BP meds in last 4-12 weeks depending on meds. 3. Collect 24 hr urine for Na, K and creatinine and aldosterone. Do not lose a drop of this liquid gold. It is impossible to interpret the renin and aldo without this. 4. The morning you finish the 24 hr urine have fasting blood drawn for renin, aldo and K using our guidelines to get an accurate K. Try to get this done about 4 hours after you have been out of bed. 5. Send us the results witn the normal values for your lab. 7. Our PA Registry: If you have been Dxed with PA already and are on Rx or have had surgery please go to http://www.kwiksurveys.com/online-survey.php?surveyID=HIJIO_f2685379 and complete our survey with as much information as you know. If there is some information you don't know ask us and we will help. If you need to update this as you journey thru the diagnostic/treatment process you can add another entry but label it as Nameyymmdd. For example today 6/12/09 for me would be Grim090612. This ever increasing number will allow us and you to sort your multiple entries into a dated order. 8. Learn the language: If you are new to medical lingo then download the acroyms from bloodpressureline/message/29186 9. Salt and high blood pressure: To learn the state of the science of salt and blood pressure please spend some time looking at http://www.worldactiononsalt.com/evidence/treatment_trials.htm 10. Become a HBP expert consumer: Expect that it will take at least several weeks to get all this digested and to learn the new language of high blood pressure health care. As most doctors and nurses in practice have had very little training in high blood pressure you must become an expert yourself. For example most have never had anyone listen with them with a double stethoscope to verify that they can hear BP sounds. We cannot make you a doctor but we will make you a pretty good BP doctor. 11. Become a pretty good high blood pressure doctor: How High Blood Pressure should be managed: Go to nih.gov and download and read the Joint National Commission (JNC) Report 7 to get an overview on current guidelines. I ask all my secretaries to read this so they can commuitcate the importance of high blood pressure to my patients. JNC 8 may be out soon. Then: get (and study) the Hypertension Primer from americanheart.org. This is the most up-to-date compendium of what is known about high blood pressure and what every Dr. should know when they graduate from Medical School. Every chapter is only 2-3 pages. Read one chapter every week-night and you will finish it in about a year. I am working on a reading guide for lay people for the Primer. Stay tuned. 12. Ask us questions: Ask any questions about high blood pressure you want answered. That is what we are here for. 13. If you want individual oneon-one consulting for you and your Doctor contract me directly at lowerbp2@.... May your pressure be low! Clarence E. Grim BS, MS, MD, FACP, FACC Board Certified in Internal Medicine, Geriatrics, and High Blood Pressure Retired Medical School Faculty as Professor of Medicine (U of MO, Indiana, UCLA/DREW,Medical Collge of Wisconsin and Cardiology, Endocrinology, Nephrology, and Epidemiology. Specializing in Primary Aldosteronism and Difficult to Control High Blood Pressure. Clarence E. Grim, BS, MS, MD Specializing in Primary Aldosteronism, Difficult High Blood Pressure and recent evolutionary forces on high blood pressure in populations today. On Saturday, February 13, 2010, at 12:28AM, <lilbatz@...> wrote: > Christy, For got to add this, how did the ER not just blow off your symptoms to lousy eating habits and panic attacks? 10 years ago, this mess started for me, and even with the low K, it was just blow off to anxiety/panic attacks. I'm impressed the ER took you seriously. My EKG strips were "normal", except for the 150 heart rate. Or as the ER doctor said, " you're just a little tachy." Didn't matter that I ate a no salt/no junk food diet, and no history of mental illness. I got labeled as a nut. I was told the next time the episode happened to breathe into a bag and eat more bananas (which I'm anaphylactic to- big help) Nanci Sent from my Verizon Wireless BlackBerry From: Christy <christycassius > Date: Fri, 12 Feb 2010 21:33:57 -0800 (PST) hyperaldosteronism <hyperaldosteronism > Subject: Intro My name is Christy and I have just been referred to an endocrineologist with a possible dx of Conn's disease. For the past few months, I have been in and out of the ER for near fainting and heart palpatations. Each time my blood pressure has shot up out of the blue and my K has been low. I was put on metropol 25 mg and a k supplement. Even though I am on the k supplement and eat a high k diet my k barely makes it to 3.5. My symptoms seem to come on suddenly. My normal bp is 90/65 with a hr of 78, but with each episode I'll all of a sudden feel faint, get very cold, and my bp jumps to 154/104 with a hr of 150-160. Is this typical for Conn's? I've always had low bp and never had these sypmtoms before. I do urinate like 6 times a night, get facial flushing, never sweat, and am always cold. Because of this I now have a lot of anxiety. Any help and encouragement will be greatly appreciated as I am just starting what looks like a long journey. Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2010 Report Share Posted February 13, 2010 Christy: you have at least group hyperaldosteronism and you need to have your Endo do the right tests ASAP. See belo: Welcome to the exciting world of Hyperaldosteronism I am Dr. CE Grim a retired Professor of Medicine and Endocrinology. I have had a long standing interest is Primary Aldosteronism since medical school days when I saw my first patient with Primary Aldosteronism in 1963. I trained with Dr. Conn in Endocrinology and Metabolism 1969-70 and have published over 240 papers and book chapters in most areas of the broad discipline of High Blood Pressure. My CV is in our files for details. The goal of our group is to teach you and your health care team about the ins and outs of the causes, diagnosis and control of the many forms of hyperaldosteronism. The steps below will introduce you into the fascinating world of high blood pressure, salt and potassium and the role of the adrenal hormone aldosterone in health and disease. Doing these in sequence will save you time and effort in getting up to speed in taking control of you health and educating your own health care team. While we can’t make you a doctor we will make you into a pretty good BP doctor-a skill that you will have for life. 1. Overview: Read my article in our files on the evolution of PA (Evolution_of_PA-Grim.pdf ) and take to all members of health care team. Tell us what stage you believe you are in. This is a brief review of most causes of hyperaldosteronism, high blood pressure, low potassium (K). 2. Other patients with hyperaldosteronism (Conn’s syndrome). Read our Conn's stories in our files and then give us your own in as much detail as you can. Dr. Conn was the first to describe this disease process and the syndrome is named after him. To see others' stories, on the Hyperaldosteronism home page, go to Files/Conn’s Stories. You'll find instructions in "A - How to put your story here.doc " First send us your story in an email and they we may have questions and suggestions before you upload it to our files. 3. Eating Plan to controlling high blood pressure due to hyperaldosteronism and most others with high blood pressure This will reducing your need for medications and in many will get your BP and K to goal without meds.. Get the DASH diet book by T. et al, read it and use it: $8 in paperback at your local bookstore. If they don’t have it ask them to order it for you. Learning to eat the DASH way will play a major role in your road to good BP and K control and, in many of our folks here, will revolutionize your life. Go to chapter 9 and do the 14 day challenge. Tell your Dr you are doing this as your BP may plummet if you are on other meds. or go to http://www.nhlbi.nih.gov/health/public/heart/hbp/dash/new_dash.pdf download this 64 page booklet free and do the Week on the DASH Diet for 2 weeks. If you are on BP meds be prepared for a large fall in BP and let your Dr. know you are doing this. I strongly recommend you get this book and read it. 4. Measure your BP: Measure your BP daily so you can see if it is getting better. If you are taking meds be sure to tell your health care team you are doing this as your BP may plummet to normal quickly. We recommend you use a device you listen to and will help you learn how to do this. If this is not something you want to do we can teach a significant other how to do it. See sharedcareinc.com or email to sharedcare@... to order a video on how to do this. If you already have one we will teach you how to teach your health care team how to validate your device. Your life and health depends on accurate BP measurements. Go to the amricanheart.org and download the Guidelines for Human Blood Pressure Measurement. Insist the your health care team do BP the AHA way. Never trust your life to an automatic BP machine unless you know it is accurate on YOU. 5. Genetics and your BP: Go to familyhistory.hhs.gov and do your detailed family medical history so we can review with you to help Dx familial causes of high blood pressure and heart disease. If BP runs in your family you may save lives in your family by checking their BP yourself. 6. How to DX and treat PA: Go to our file /Conn's Articles of Note/Medications/Bravo spir 1973.pdf and read this article and take to your health care team. It is old but still one of the best in the medical management of PA. Also see our file from the Endocrine Society Guidelines on PA. Dr. Grim's Perfect Primary Aldosteronism Blood and Urine Testing to diagnose PA in one day. 1. Eat a regular to high salt diet for 2 weeks. 2. No BP meds in last 4-12 weeks depending on meds. 3. Collect 24 hr urine for Na, K and creatinine and aldosterone. Do not lose a drop of this liquid gold. It is impossible to interpret the renin and aldo without this. 4. The morning you finish the 24 hr urine have fasting blood drawn for renin, aldo and K using our guidelines to get an accurate K. Try to get this done about 4 hours after you have been out of bed. 5. Send us the results witn the normal values for your lab. 7. Our PA Registry: If you have been Dxed with PA already and are on Rx or have had surgery please go to http://www.kwiksurveys.com/online-survey.php?surveyID=HIJIO_f2685379 and complete our survey with as much information as you know. If there is some information you don't know ask us and we will help. If you need to update this as you journey thru the diagnostic/treatment process you can add another entry but label it as Nameyymmdd. For example today 6/12/09 for me would be Grim090612. This ever increasing number will allow us and you to sort your multiple entries into a dated order. 8. Learn the language: If you are new to medical lingo then download the acroyms from bloodpressureline/message/29186 9. Salt and high blood pressure: To learn the state of the science of salt and blood pressure please spend some time looking at http://www.worldactiononsalt.com/evidence/treatment_trials.htm 10. Become a HBP expert consumer: Expect that it will take at least several weeks to get all this digested and to learn the new language of high blood pressure health care. As most doctors and nurses in practice have had very little training in high blood pressure you must become an expert yourself. For example most have never had anyone listen with them with a double stethoscope to verify that they can hear BP sounds. We cannot make you a doctor but we will make you a pretty good BP doctor. 11. Become a pretty good high blood pressure doctor: How High Blood Pressure should be managed: Go to nih.gov and download and read the Joint National Commission (JNC) Report 7 to get an overview on current guidelines. I ask all my secretaries to read this so they can commuitcate the importance of high blood pressure to my patients. JNC 8 may be out soon. Then: get (and study) the Hypertension Primer from americanheart.org. This is the most up-to-date compendium of what is known about high blood pressure and what every Dr. should know when they graduate from Medical School. Every chapter is only 2-3 pages. Read one chapter every week-night and you will finish it in about a year. I am working on a reading guide for lay people for the Primer. Stay tuned. 12. Ask us questions: Ask any questions about high blood pressure you want answered. That is what we are here for. 13. If you want individual oneon-one consulting for you and your Doctor contract me directly at lowerbp2@.... May your pressure be low! Clarence E. Grim BS, MS, MD, FACP, FACC Board Certified in Internal Medicine, Geriatrics, and High Blood Pressure Retired Medical School Faculty as Professor of Medicine (U of MO, Indiana, UCLA/DREW,Medical Collge of Wisconsin and Cardiology, Endocrinology, Nephrology, and Epidemiology. Specializing in Primary Aldosteronism and Difficult to Control High Blood Pressure. Clarence E. Grim, BS, MS, MD Specializing in Primary Aldosteronism, Difficult High Blood Pressure and recent evolutionary forces on high blood pressure in populations today. On Saturday, February 13, 2010, at 12:28AM, <lilbatz@...> wrote: > Christy, For got to add this, how did the ER not just blow off your symptoms to lousy eating habits and panic attacks? 10 years ago, this mess started for me, and even with the low K, it was just blow off to anxiety/panic attacks. I'm impressed the ER took you seriously. My EKG strips were "normal", except for the 150 heart rate. Or as the ER doctor said, " you're just a little tachy." Didn't matter that I ate a no salt/no junk food diet, and no history of mental illness. I got labeled as a nut. I was told the next time the episode happened to breathe into a bag and eat more bananas (which I'm anaphylactic to- big help) Nanci Sent from my Verizon Wireless BlackBerry From: Christy <christycassius > Date: Fri, 12 Feb 2010 21:33:57 -0800 (PST) hyperaldosteronism <hyperaldosteronism > Subject: Intro My name is Christy and I have just been referred to an endocrineologist with a possible dx of Conn's disease. For the past few months, I have been in and out of the ER for near fainting and heart palpatations. Each time my blood pressure has shot up out of the blue and my K has been low. I was put on metropol 25 mg and a k supplement. Even though I am on the k supplement and eat a high k diet my k barely makes it to 3.5. My symptoms seem to come on suddenly. My normal bp is 90/65 with a hr of 78, but with each episode I'll all of a sudden feel faint, get very cold, and my bp jumps to 154/104 with a hr of 150-160. Is this typical for Conn's? I've always had low bp and never had these sypmtoms before. I do urinate like 6 times a night, get facial flushing, never sweat, and am always cold. Because of this I now have a lot of anxiety. Any help and encouragement will be greatly appreciated as I am just starting what looks like a long journey. Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2010 Report Share Posted February 13, 2010 Nanci,Oh my goodness! I left that out in order to just get to the point, but yes, i was told it was panic attacks at 1st. Same scenario as you. I was given Ativan and told to eat more bananas at the hospital. It wasn't until after the 4th visit that I went into SVT with a heart rate of 245 and was admitted to the hospital for a week that they paid attention. The cardiologist I saw there has been wonderful and he is the one who gave me the potential dx of Conn's. It took 4 months and countless tests. I've had the 24 hr and 1 month event monitor, MRI and CT for the brain (for the dizziness & near fainting), kidney ultrasound, etc... I have always followed a very healthy diet as well and my base went from 110 pounds to 120 in a matter of days from the water retention :(From: "lilbatz@..." <lilbatz@...>hyperaldosteronism Sent: Fri, February 12, 2010 10:28:11 PMSubject: Re: Intro Christy,For got to add this, how did the ER not just blow off your symptoms to lousy eating habits and panic attacks?10 years ago, this mess started for me, and even with the low K, it was just blow off to anxiety/panic attacks. I'm impressed the ER took you seriously. My EKG strips were "normal", except for the 150 heart rate. Or as the ER doctor said, " you're just a little tachy."Didn't matter that I ate a no salt/no junk food diet, and no history of mental illness. I got labeled as a nut. I was told the next time the episode happened to breathe into a bag and eat more bananas (which I'm anaphylactic to- big help) NanciSent from my Verizon Wireless BlackBerryFrom: Christy <christycassius> Date: Fri, 12 Feb 2010 21:33:57 -0800 (PST)hyperaldosteronism<hyperaldosteronism>Subject: [hyperaldosteronism ] Intro My name is Christy and I have just been referred to an endocrineologist with a possible dx of Conn's disease. For the past few months, I have been in and out of the ER for near fainting and heart palpatations. Each time my blood pressure has shot up out of the blue and my K has been low. I was put on metropol 25 mg and a k supplement. Even though I am on the k supplement and eat a high k diet my k barely makes it to 3.5. My symptoms seem to come on suddenly. My normal bp is 90/65 with a hr of 78, but with each episode I'll all of a sudden feel faint, get very cold, and my bp jumps to 154/104 with a hr of 150-160. Is this typical for Conn's? I've always had low bp and never had these sypmtoms before. I do urinate like 6 times a night, get facial flushing, never sweat, and am always cold. Because of this I now have a lot of anxiety. Any help and encouragement will be greatly appreciated as I am just starting what looks like a long journey. Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2010 Report Share Posted February 13, 2010 Nanci,Oh my goodness! I left that out in order to just get to the point, but yes, i was told it was panic attacks at 1st. Same scenario as you. I was given Ativan and told to eat more bananas at the hospital. It wasn't until after the 4th visit that I went into SVT with a heart rate of 245 and was admitted to the hospital for a week that they paid attention. The cardiologist I saw there has been wonderful and he is the one who gave me the potential dx of Conn's. It took 4 months and countless tests. I've had the 24 hr and 1 month event monitor, MRI and CT for the brain (for the dizziness & near fainting), kidney ultrasound, etc... I have always followed a very healthy diet as well and my base went from 110 pounds to 120 in a matter of days from the water retention :(From: "lilbatz@..." <lilbatz@...>hyperaldosteronism Sent: Fri, February 12, 2010 10:28:11 PMSubject: Re: Intro Christy,For got to add this, how did the ER not just blow off your symptoms to lousy eating habits and panic attacks?10 years ago, this mess started for me, and even with the low K, it was just blow off to anxiety/panic attacks. I'm impressed the ER took you seriously. My EKG strips were "normal", except for the 150 heart rate. Or as the ER doctor said, " you're just a little tachy."Didn't matter that I ate a no salt/no junk food diet, and no history of mental illness. I got labeled as a nut. I was told the next time the episode happened to breathe into a bag and eat more bananas (which I'm anaphylactic to- big help) NanciSent from my Verizon Wireless BlackBerryFrom: Christy <christycassius> Date: Fri, 12 Feb 2010 21:33:57 -0800 (PST)hyperaldosteronism<hyperaldosteronism>Subject: [hyperaldosteronism ] Intro My name is Christy and I have just been referred to an endocrineologist with a possible dx of Conn's disease. For the past few months, I have been in and out of the ER for near fainting and heart palpatations. Each time my blood pressure has shot up out of the blue and my K has been low. I was put on metropol 25 mg and a k supplement. Even though I am on the k supplement and eat a high k diet my k barely makes it to 3.5. My symptoms seem to come on suddenly. My normal bp is 90/65 with a hr of 78, but with each episode I'll all of a sudden feel faint, get very cold, and my bp jumps to 154/104 with a hr of 150-160. Is this typical for Conn's? I've always had low bp and never had these sypmtoms before. I do urinate like 6 times a night, get facial flushing, never sweat, and am always cold. Because of this I now have a lot of anxiety. Any help and encouragement will be greatly appreciated as I am just starting what looks like a long journey. Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2010 Report Share Posted February 13, 2010 Suzanne,I just turned 34, so the doctors' haven't used menopause as an excuse, YET. I did get the whole "your an emotional little woman" bit though. I have always suffered from migraines and continue to do so, so I'm not sure if that can be a symptom attributed to the new Conn's dx. I get a lot of anxiety now too. I have a period of a couple of weeks when everything gets better and then I get hit with the dizziness and feel like I am going to pass out. For me the whole fainting thing is what really gets my heart racing, it totally freaks me out! From: smkushka <smkushka@...>hyperaldosteronism Sent: Sat, February 13, 2010 7:49:57 AMSubject: Re: Intro Yes, I also heard that I was having panic attacks when my symptoms started in 2008; which I wasn't - until after my heart started beating fast and hard in my chest out of the blue, my face would flush, and I would feel dizzy; that will bring on some panic! It would happen sitting at my desk, in my car, in the middle of the night to wake me out of sleep, whenever. I have also heard menopause repeatedly; I'm not convinced all or even most of my symptoms are attributable to menopause (my gyn said they are not), but I think it is an easy answer to any woman's symptoms in her late 40s. Christy, I do not have a diagnosis yet either. I also had BP normally very low, 90/60; hr 60s. Until 2 years ago when my symptoms started. My story is posted in Files under Conns Stories. I forgot when I wrote it to mention I had easy bruising when this started in '08; and now I have a low level frontal headache almost all of the time (how could I forget that? I never had headaches until recently, now it is like a way of life). I had a boatload of original labs from 2008 but the file was so big I took it down, don't want to overload the group storage capacity; the notable results related to PA, if I might have that, are that renin was low and aldo normal. Now renin normal and aldo low; still, my current endo attributes my symptoms to menopause, and recommends I drink less water. So I am going to a new endo on Monday, hope for different testing at least; I saw Dr Grim's file indicating 24 hour urine for NA, K, aldo, and creatinine might be appropriate. My serum K has never been low, except to 3.4 in the first set of labs when this started; it is now high, probalby due to captopril. Suzanne > > Christy, > > For got to add this, how did the ER not just blow off your symptoms to lousy eating habits and panic attacks? > > 10 years ago, this mess started for me, and even with the low K, it was just blow off to anxiety/panic attacks. I'm impressed the ER took you seriously. My EKG strips were "normal", except for the 150 heart rate. Or as the ER doctor said, " you're just a little tachy." > > Didn't matter that I ate a no salt/no junk food diet, and no history of mental illness. I got labeled as a nut. I was told the next time the episode happened to breathe into a bag and eat more bananas (which I'm anaphylactic to- big help) > > Nanci > > Sent from my Verizon Wireless BlackBerry > > [hyperaldosteronism ] Intro > > My name is Christy and I have just been referred to an endocrineologist with a possible dx of Conn's disease. For the past few months, I have been in and out of the ER for near fainting and heart palpatations. Each time my blood pressure has shot up out of the blue and my K has been low. I was put on metropol 25 mg and a k supplement. Even though I am on the k supplement and eat a high k diet my k barely makes it to 3.5. My symptoms seem to come on suddenly. My normal bp is 90/65 with a hr of 78, but with each episode I'll all of a sudden feel faint, get very cold, and my bp jumps to 154/104 with a hr of 150-160. Is this typical for Conn's? I've always had low bp and never had these sypmtoms before. I do urinate like 6 times a night, get facial flushing, never sweat, and am always cold. Because of this I now have a lot of anxiety. Any help and encouragement will be greatly appreciated as I am just starting what looks like a long journey. > > Sent from my iPhone > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2010 Report Share Posted February 13, 2010 Suzanne,I just turned 34, so the doctors' haven't used menopause as an excuse, YET. I did get the whole "your an emotional little woman" bit though. I have always suffered from migraines and continue to do so, so I'm not sure if that can be a symptom attributed to the new Conn's dx. I get a lot of anxiety now too. I have a period of a couple of weeks when everything gets better and then I get hit with the dizziness and feel like I am going to pass out. For me the whole fainting thing is what really gets my heart racing, it totally freaks me out! From: smkushka <smkushka@...>hyperaldosteronism Sent: Sat, February 13, 2010 7:49:57 AMSubject: Re: Intro Yes, I also heard that I was having panic attacks when my symptoms started in 2008; which I wasn't - until after my heart started beating fast and hard in my chest out of the blue, my face would flush, and I would feel dizzy; that will bring on some panic! It would happen sitting at my desk, in my car, in the middle of the night to wake me out of sleep, whenever. I have also heard menopause repeatedly; I'm not convinced all or even most of my symptoms are attributable to menopause (my gyn said they are not), but I think it is an easy answer to any woman's symptoms in her late 40s. Christy, I do not have a diagnosis yet either. I also had BP normally very low, 90/60; hr 60s. Until 2 years ago when my symptoms started. My story is posted in Files under Conns Stories. I forgot when I wrote it to mention I had easy bruising when this started in '08; and now I have a low level frontal headache almost all of the time (how could I forget that? I never had headaches until recently, now it is like a way of life). I had a boatload of original labs from 2008 but the file was so big I took it down, don't want to overload the group storage capacity; the notable results related to PA, if I might have that, are that renin was low and aldo normal. Now renin normal and aldo low; still, my current endo attributes my symptoms to menopause, and recommends I drink less water. So I am going to a new endo on Monday, hope for different testing at least; I saw Dr Grim's file indicating 24 hour urine for NA, K, aldo, and creatinine might be appropriate. My serum K has never been low, except to 3.4 in the first set of labs when this started; it is now high, probalby due to captopril. Suzanne > > Christy, > > For got to add this, how did the ER not just blow off your symptoms to lousy eating habits and panic attacks? > > 10 years ago, this mess started for me, and even with the low K, it was just blow off to anxiety/panic attacks. I'm impressed the ER took you seriously. My EKG strips were "normal", except for the 150 heart rate. Or as the ER doctor said, " you're just a little tachy." > > Didn't matter that I ate a no salt/no junk food diet, and no history of mental illness. I got labeled as a nut. I was told the next time the episode happened to breathe into a bag and eat more bananas (which I'm anaphylactic to- big help) > > Nanci > > Sent from my Verizon Wireless BlackBerry > > [hyperaldosteronism ] Intro > > My name is Christy and I have just been referred to an endocrineologist with a possible dx of Conn's disease. For the past few months, I have been in and out of the ER for near fainting and heart palpatations. Each time my blood pressure has shot up out of the blue and my K has been low. I was put on metropol 25 mg and a k supplement. Even though I am on the k supplement and eat a high k diet my k barely makes it to 3.5. My symptoms seem to come on suddenly. My normal bp is 90/65 with a hr of 78, but with each episode I'll all of a sudden feel faint, get very cold, and my bp jumps to 154/104 with a hr of 150-160. Is this typical for Conn's? I've always had low bp and never had these sypmtoms before. I do urinate like 6 times a night, get facial flushing, never sweat, and am always cold. Because of this I now have a lot of anxiety. Any help and encouragement will be greatly appreciated as I am just starting what looks like a long journey. > > Sent from my iPhone > Quote Link to comment Share on other sites More sharing options...
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