new here

[Guest guest]

Hi Kim,

I'm just catching up on posts right now, so I'm not sure who's all responded or what they have said, but I do agree with about finding a Mehta trained dr with the correct casting table. I live in MI and the first ortho dr we went to said he did Mehta casting and I was oh so excited. But, at that time I had only done a few days of research since we had just found out. After that appt I joined this group and a whole new world of discovery opened up for me. I heard a lot of other parents in the same situation as me.....dr's saying they cast, but come to find out it's not the right type of cast. So, after much research and questioning of that first ortho dr I decided it just wasn't right to have her casted that way. You only have one chance to get this right and you have to make sure everything is correctly in place. So, we go to Shriners in Salt Lake City. You have to make sure the dr is Mehta

trained and has the appropriate 3D casting table. This is the only effective and curable treatment for Infantile Scoliosis. A lot of dr's claim to do Mehta casts, but without the correct table they aren't actually applying it correctly which could mean a world of difference. I don't want to add to your anxiety, frustration or nervousness, but you have to be the advocate for your daughter. You have to seek out the best care and do what is proven to work. Her curvature is high and she's a bit older so she doesn't have a whole lot of that main growth spurt time left. Casting can and does do wonders for a child. There are alot of children that have been cured by it, but it's been through the proper technique that this has worked. Hopefully some of those parents with cured children will speak up.

As for the casting....it is a scary and nervous thing to go through bc/it's the unexpected. You've never done anything like it before and you have no idea how your child will react, but it has to be done in order to save their lives. They are resilant and they bounce back so quick. It's actually harder on the parents than on the child at times. It's definitely an adjustment, but it does get easier as time goes on. Everyone adapts and it just becomes part of your life. You have to do this for your daughter and you have to stay strong. I know that's hard, but you are her rock. She'll be fine and thank you one day later on down the road. Please just ask the dr lots of questions about his casting experience. Has he casted a child this young before? Does he have a 3D casting table, usually called the AMIL table? Has he attented and conferences on the Mehta Method?

Hope this helps you some and doesn't add to much more stress to your life. Feel free to ask this group anything. They are truely a wonderful group of people.

(mother to - 13 months old - in 2nd cast from SLC)

From: <kim221998yahoo (DOT) com>Subject: [infantile_scoliosi s] New HereTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, July 15, 2009, 7:00 PM

Hey everyone...I' m Kim...mom to 2 1/2 year old Destiny. She was diagnosed with infantile scoliosis shortly after her first birthday. They put her in a brace for a while to slow down the curving, but it didn't help much. Her last regular appointment she measured at 72 degrees. They were going to do the growing rod surgery on her but because she had problems with bumps on her eyes, they cancelled in. During the time waiting for her eyes to be fixed, she has not been in a brace as they did not prescribe a new one since she was scheduled for surgery, but it ended up taking several months to get anything done. Then one day I ran into her doctor(I work at the hospital) and he said he had sent her films to a doctor's conference a friend of his was attending and they all recommended casting. So we were referred to Children's Hospital in New Orleans(we live in Pensacola, FL). The doctor there believes her to be a great candidate for casting, but says the

casting table they have is to big for her, but he wants to attempt it anyway and just make adustments. So that's where we are now. Tomorrow she is scheduled for her first cast and I'm scared to death. I keep doubting that we made the right choice, but reading some of the stuff I've found online the past few days has been encouraging that maybe it is the right choice. I guess I've come here looking for some support, because this is all really stressing me out. Can't wait to get to know some of you and hear some of your experiences.

Kim

Find me online!

www.myspace. com/kim221998

www.twitter. com/kim221998

[Guest guest]

Hi Kim,Welcome to the group......everyone has given you great advice. I have not read all the posts, but wanted to make sure you did read an article published by Dr. Mehta 2005. Maybe it will give a better understanding of her techniques. You can find it in the FILES section here on the group. It will be the very first one.***Growth as a Corrective Force in the Early Treatment of Progressive Infantile Scoliosis***Long name, but a MUST read when treating your child for Infantile Scoliosis. And this may even be something you want to print out for the doctor. If he is indeed Mehta trained he will very familiar with this article.I think I do remember reading in a post that you could not travel for treatment. It is a far drive, but wanted to tell you that Texas ish Rite Hospital in Dallas does

casting. There are 2 doctors there that are trained and they have the correct frame. This where my son has gone since 2006.And I just wanted to say I am a mom of a child that went to a doctor that was NOT trained and had the big table for casting. If I had known all I do today we would have traveled the world to find a Mehta trained doctor. Fortunately my son, , had great results, BUT I know if his doctor had been trained at the time the outcome would be so different right now......today!Please feel free to call or email me privately if you would like to talk. We all know how overwhelming this in the beginning. It is awful, but we have all been there. We are here for you.....ask any and all questions that come to mind. We will all do our best to answer with the experiences we have had with our own children.TashaMommy of 4 year old twin boys- and Fort

Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantilescoliosis.org/stories.html--- Subject: Re: New HereTo: infantile_scoliosis Date: Thursday, July 16, 2009, 12:01 AM

Just wanted to thank everyone for their support. This has been very difficult to deal with and I just got out of the hospital myself, so there's added stress in my life. As for the casting, I think my mind knows it's a better option than the alternatives, but my heart doesn't want to completely agree. I know it will be a tough adjustment, but I know we'll get through it, especially since I know where I can find support now. Thanks again.

Kim

Find me online!

www.myspace. com/kim221998

www.twitter. com/kim221998

From: <kim221998yahoo (DOT) com>Subject: [infantile_scoliosi s] New HereTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, July 15, 2009, 7:00 PM

Hey everyone...I' m Kim...mom to 2 1/2 year old Destiny. She was diagnosed with infantile scoliosis shortly after her first birthday. They put her in a brace for a while to slow down the curving, but it didn't help much. Her last regular appointment she measured at 72 degrees. They were going to do the growing rod surgery on her but because she had problems with bumps on her eyes, they cancelled in. During the time waiting for her eyes to be fixed, she has not been in a brace as they did not prescribe a new one since she was scheduled for surgery, but it ended up taking several months to get anything done. Then one day I ran into her doctor(I work at the hospital) and he said he had sent her films to a doctor's conference a friend of his was attending and they all recommended casting. So we were referred to Children's Hospital in New Orleans(we live in Pensacola, FL). The doctor there believes her to be a great candidate for casting, but says the

casting table they have is to big for her, but he wants to attempt it anyway and just make adustments. So that's where we are now. Tomorrow she is scheduled for her first cast and I'm scared to death. I keep doubting that we made the right choice, but reading some of the stuff I've found online the past few days has been encouraging that maybe it is the right choice. I guess I've come here looking for some support, because this is all really stressing me out. Can't wait to get to know some of you and hear some of your experiences.

Kim

Find me online!

www.myspace. com/kim221998

www.twitter. com/kim221998

[Guest guest]

Tasha is right ish Rite is a great hospital but they have guidelines and one of them is the child has to be a Texas resident under age 18. Tash, was this rule not in effect when you took there to begin with? It was on our application process.

From: <kim221998yahoo (DOT) com>Subject: [infantile_scoliosi s] New HereTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, July 15, 2009, 7:00 PM

Hey everyone...I' m Kim...mom to 2 1/2 year old Destiny. She was diagnosed with infantile scoliosis shortly after her first birthday. They put her in a brace for a while to slow down the curving, but it didn't help much. Her last regular appointment she measured at 72 degrees. They were going to do the growing rod surgery on her but because she had problems with bumps on her eyes, they cancelled in. During the time waiting for her eyes to be fixed, she has not been in a brace as they did not prescribe a new one since she was scheduled for surgery, but it ended up taking several months to get anything done. Then one day I ran into her doctor(I work at the hospital) and he said he had sent her films to a doctor's conference a friend of his was attending and they all recommended casting. So we were referred to Children's Hospital in New Orleans(we live in Pensacola, FL). The doctor there believes her to be a great candidate for casting, but says the

casting table they have is to big for her, but he wants to attempt it anyway and just make adustments. So that's where we are now. Tomorrow she is scheduled for her first cast and I'm scared to death. I keep doubting that we made the right choice, but reading some of the stuff I've found online the past few days has been encouraging that maybe it is the right choice. I guess I've come here looking for some support, because this is all really stressing me out. Can't wait to get to know some of you and hear some of your experiences.

Kim

Find me online!

www.myspace. com/kim221998

www.twitter. com/kim221998

[Guest guest]

, I totally forgot about that. Sorry Kim. Thank you for pointing that out. I am sure it was in effect when we started our journey. I did look at their website and it says, "should be" a Texas resident. And I am almost positive their is a young lady who's mom is on the group and they live in Florida. Not sure if they lived in Texas at one time. Maybe she will chime. Kim, if you are interested you could always call the hospital and find out for sure.TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantilescoliosis.org/stories.html--- On Thu, 7/16/09, missi sester

wrote:Subject: Re: New HereTo: infantile_scoliosis Date: Thursday, July 16, 2009, 8:23 AM

Tasha is right ish Rite is a great hospital but they have guidelines and one of them is the child has to be a Texas resident under age 18. Tash, was this rule not in effect when you took there to begin with? It was on our application process.

From: <kim221998yahoo (DOT) com>Subject: [infantile_scoliosi s] New HereTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, July 15, 2009, 7:00 PM

Hey everyone...I' m Kim...mom to 2 1/2 year old Destiny. She was diagnosed with infantile scoliosis shortly after her first birthday. They put her in a brace for a while to slow down the curving, but it didn't help much. Her last regular appointment she measured at 72 degrees. They were going to do the growing rod surgery on her but because she had problems with bumps on her eyes, they cancelled in. During the time waiting for her eyes to be fixed, she has not been in a brace as they did not prescribe a new one since she was scheduled for surgery, but it ended up taking several months to get anything done. Then one day I ran into her doctor(I work at the hospital) and he said he had sent her films to a doctor's conference a friend of his was attending and they all recommended casting. So we were referred to Children's Hospital in New Orleans(we live in Pensacola, FL). The doctor there believes her to be a great candidate for casting, but says the

casting table they have is to big for her, but he wants to attempt it anyway and just make adustments. So that's where we are now. Tomorrow she is scheduled for her first cast and I'm scared to death. I keep doubting that we made the right choice, but reading some of the stuff I've found online the past few days has been encouraging that maybe it is the right choice. I guess I've come here looking for some support, because this is all really stressing me out. Can't wait to get to know some of you and hear some of your experiences.

Kim

Find me online!

www.myspace. com/kim221998

www.twitter. com/kim221998

[Guest guest]

My experience from this group is that increase Inspra to 200 and continue K

120 mEq and stop all other drugs ...they don't do anything in PA.

Max.

|

|Hi,

| New to this group, but glad I found it. It's nice to know that my husband

is not

|the only one that had a long road to diagnosis and treatment.

|

|My husband is 42 yo., slightly overweight. Started having severe BP issues

about

|4 years ago out of the blue after being completely healthy. Also started

having

|anxiety and depression at same time. Diagnosed w/ PA 2 years ago after

|undergoing testing/labs for PA. Had to take 120meq of K per day x 6 mo

when

|first dx d/t levels around 2.2. Thankfully His K has been pretty stable

recently on

|20 meq twice daily. He is currently managed by nephrologist. They did a CT

scan

|1.5 years ago and did not see any tumors. Managed w/meds OK (with frequent

|adjustments) until about 6 months ago when nothing he takes seems to work

at

|all except prn clonidine which we recently found out causes rebound

|hypertension. A " good " BP for him lately has been anything below 160/100.

|Spikes often as high as 190 for systolic and 156 for diastolic. Crazy. He

can barely

|make it through the work week, is exhausted and just drained all the time.

|

|His nephrologist order the AVS in Sept. AVS showed the left adrenal

producing

|way excessive amounts of aldosterone. He was referred to surgeon and set

for

|adrenaletcomy in middle of Dec.

|

|So, my only goal in life is to ensure he does not have a stroke between

down and

|then. He has been trying to adapt to the dash diet (admittedly he has some

work

|to do on this). He has a huge family hx of strokes and high BP. HIs

nephrologist

|has been responsive to the need for med changes, but difficulty finding a

combo

|that works. Just added the hydralazine last week which has helped quite a

bit,

|but still having really high spikes. He's currently taking the following

for BP:

|

|inspra 100mg once daily

|atenolol 100mg once daily

|lisinopril 20mg once daily

|imdur 60mg once daily

|hydralazine 40mg three times daily

|clonidine 0.1mg (prn for systolic BP over 160)

|

|Any other recommendations for managing BP until surgery? We are grateful

for

|the light at the end of the tunnel w/adrenalectomy. I read several of the

posts

|here on adrenalectomy stories which have been very helpful.

|

|Thanks!

|

|

|

|

|

[Guest guest]

Yes have Neph check urine Na and K to see what he needs to do on the DASH PLAN. Strong FH of stroke suggests GRA ESP if I bump on adrenal scans. Eplerenone does is low for severe PA WAS HE EVER on Spiro? I can assure you once he begins to DASH TO the max as validAted by urine N and k Bp will become much better and he will feel like a new man. Many of the meds he is on do not work on PA. HAVE you or your Neph not yet read my evolution of PA Article. If not you will not understandThe problem. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension

Hi,

New to this group, but glad I found it. It's nice to know that my husband is not the only one that had a long road to diagnosis and treatment.

My husband is 42 yo., slightly overweight. Started having severe BP issues about 4 years ago out of the blue after being completely healthy. Also started having anxiety and depression at same time. Diagnosed w/ PA 2 years ago after undergoing testing/labs for PA. Had to take 120meq of K per day x 6 mo when first dx d/t levels around 2.2. Thankfully His K has been pretty stable recently on 20 meq twice daily. He is currently managed by nephrologist. They did a CT scan 1.5 years ago and did not see any tumors. Managed w/meds OK (with frequent adjustments) until about 6 months ago when nothing he takes seems to work at all except prn clonidine which we recently found out causes rebound hypertension. A "good" BP for him lately has been anything below 160/100. Spikes often as high as 190 for systolic and 156 for diastolic. Crazy. He can barely make it through the work week, is exhausted and just drained all the time.

His nephrologist order the AVS in Sept. AVS showed the left adrenal producing way excessive amounts of aldosterone. He was referred to surgeon and set for adrenaletcomy in middle of Dec.

So, my only goal in life is to ensure he does not have a stroke between down and then. He has been trying to adapt to the dash diet (admittedly he has some work to do on this). He has a huge family hx of strokes and high BP. HIs nephrologist has been responsive to the need for med changes, but difficulty finding a combo that works. Just added the hydralazine last week which has helped quite a bit, but still having really high spikes. He's currently taking the following for BP:

inspra 100mg once daily

atenolol 100mg once daily

lisinopril 20mg once daily

imdur 60mg once daily

hydralazine 40mg three times daily

clonidine 0.1mg (prn for systolic BP over 160)

Any other recommendations for managing BP until surgery? We are grateful for the light at the end of the tunnel w/adrenalectomy. I read several of the posts here on adrenalectomy stories which have been very helpful.

Thanks!

[Guest guest]

Thanks to all for the great info. My husband was told causally by doctors to cut back on sodium, but it was never linked as a reason to why his BP is so out of control. He started the DASH on his own when we did some research trying to do anything to get it under control. Obviously he needs to take it to whole other level. We'll start at 1500mg daily and see if he tolerates. Will keep you posted on how it goes.

 

The real test is to lower Na intake till you begin to feel faint when standing then add back a little. For some 1500 mg will do it others will need to go lower. 

May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension

 

And Val...you know that NO salt can kill him too, especially if the ticker has some issues. Even all the animals in nature find something to " lick " . So moderate is the key. Now when your urine was so low, did you kind of feel it? I know you had a myriad of things going on, but did your pressure get low, or was it actually good for you?

Subject: RE: new hereTo: hyperaldosteronism

Date: Sunday, November 6, 2011, 9:23 PM

 

And until surgery, he should DASH 100% because his life depends on it.  Salt will kill him.  When I was seriously controlling sodium, I ate <800 mg/day.  That meant I never ate even a slice of bread.  If I had a hamburger, it was without the bun.  I was very serious and my urinary sodium was too low to quantitate.  For right now, rice, potatoes, vegetables, fruit, meat that is not sodium infused (i.e., has about 60 - 70 mg sodium per serving).  I have not found any pork that is not infused and have to look carefully to find chicken and beef that is not infused.  I kept track of everything that went into my mouth with FitDay www.fitday.com

 

Val

 

From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of StudyCircle

My experience from this group is that increase Inspra to 200 and continue K120 mEq and stop all other drugs ...they don't do anything in PA.|Hi,| New to this group, but glad I found it. It's nice to know that my husband

is not|the only one that had a long road to diagnosis and treatment.||My husband is 42 yo., slightly overweight. Started having severe BP issuesabout|4 years ago out of the blue after being completely healthy. Also started

having|anxiety and depression at same time. Diagnosed w/ PA 2 years ago after|undergoing testing/labs for PA. Had to take 120meq of K per day x 6 mowhen|first dx d/t levels around 2.2. Thankfully His K has been pretty stable

recently on|20 meq twice daily. He is currently managed by nephrologist. They did a CTscan|1.5 years ago and did not see any tumors. Managed w/meds OK (with frequent|adjustments) until about

6 months ago when nothing he takes seems to workat|all except prn clonidine which we recently found out causes rebound|hypertension. A " good " BP for him lately has been anything below 160/100.|Spikes often as high as 190 for systolic and 156 for diastolic. Crazy. He

can barely|make it through the work week, is exhausted and just drained all the time.||His nephrologist order the AVS in Sept. AVS showed the left adrenalproducing|way excessive amounts of aldosterone. He was referred to surgeon and set

for|adrenaletcomy in middle of Dec.||So, my only goal in life is to ensure he does not have a stroke betweendown and|then. He has been trying to adapt to the dash diet (admittedly he has somework

|to do on this). He has a huge family hx of strokes and high BP. HIsnephrologist|has been responsive to the need for med changes, but difficulty finding acombo|that works. Just added

the hydralazine last week which has helped quite abit,|but still having really high spikes. He's currently taking the followingfor BP:||inspra 100mg once daily|atenolol 100mg once daily|lisinopril 20mg once daily

|imdur 60mg once daily|hydralazine 40mg three times daily|clonidine 0.1mg (prn for systolic BP over 160)||Any other recommendations for managing BP until surgery? We are gratefulfor|the light at the end of the tunnel w/adrenalectomy. I read several of the

posts|here on adrenalectomy stories which have been very helpful.||Thanks!|||||

[Guest guest]

I recommend at least 1 cup of low Na V-8 a day till doing better.CE Grim MD Thanks to all for the great info. My husband was told causally by doctors to cut back on sodium, but it was never linked as a reason to why his BP is so out of control. He started the DASH on his own when we did some research trying to do anything to get it under control. Obviously he needs to take it to whole other level. We'll start at 1500mg daily and see if he tolerates. Will keep you posted on how it goes. The real test is to lower Na intake till you begin to feel faint when standing then add back a little. For some 1500 mg will do it others will need to go lower. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension And Val...you know that NO salt can kill him too, especially if the ticker has some issues. Even all the animals in nature find something to "lick". So moderate is the key. Now when your urine was so low, did you kind of feel it? I know you had a myriad of things going on, but did your pressure get low, or was it actually good for you? Subject: RE: new hereTo: hyperaldosteronism Date: Sunday, November 6, 2011, 9:23 PM And until surgery, he should DASH 100% because his life depends on it. Salt will kill him. When I was seriously controlling sodium, I ate <800 mg/day. That meant I never ate even a slice of bread. If I had a hamburger, it was without the bun. I was very serious and my urinary sodium was too low to quantitate. For right now, rice, potatoes, vegetables, fruit, meat that is not sodium infused (i.e., has about 60 - 70 mg sodium per serving). I have not found any pork that is not infused and have to look carefully to find chicken and beef that is not infused. I kept track of everything that went into my mouth with FitDay www.fitday.com Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of StudyCircle My experience from this group is that increase Inspra to 200 and continue K120 mEq and stop all other drugs ...they don't do anything in PA.|Hi,| New to this group, but glad I found it. It's nice to know that my husband is not|the only one that had a long road to diagnosis and treatment.||My husband is 42 yo., slightly overweight. Started having severe BP issuesabout|4 years ago out of the blue after being completely healthy. Also started having|anxiety and depression at same time. Diagnosed w/ PA 2 years ago after|undergoing testing/labs for PA. Had to take 120meq of K per day x 6 mowhen|first dx d/t levels around 2.2. Thankfully His K has been pretty stable recently on|20 meq twice daily. He is currently managed by nephrologist. They did a CTscan|1.5 years ago and did not see any tumors. Managed w/meds OK (with frequent|adjustments) until about 6 months ago when nothing he takes seems to workat|all except prn clonidine which we recently found out causes rebound|hypertension. A "good" BP for him lately has been anything below 160/100.|Spikes often as high as 190 for systolic and 156 for diastolic. Crazy. He can barely|make it through the work week, is exhausted and just drained all the time.||His nephrologist order the AVS in Sept. AVS showed the left adrenalproducing|way excessive amounts of aldosterone. He was referred to surgeon and set for|adrenaletcomy in middle of Dec.||So, my only goal in life is to ensure he does not have a stroke betweendown and|then. He has been trying to adapt to the dash diet (admittedly he has somework |to do on this). He has a huge family hx of strokes and high BP. HIsnephrologist|has been responsive to the need for med changes, but difficulty finding acombo|that works. Just added the hydralazine last week which has helped quite abit,|but still having really high spikes. He's currently taking the followingfor BP:||inspra 100mg once daily|atenolol 100mg once daily|lisinopril 20mg once daily |imdur 60mg once daily|hydralazine 40mg three times daily|clonidine 0.1mg (prn for systolic BP over 160)||Any other recommendations for managing BP until surgery? We are gratefulfor|the light at the end of the tunnel w/adrenalectomy. I read several of the posts|here on adrenalectomy stories which have been very helpful.||Thanks!|||||

[Guest guest]

I had a terrible experience with clonidine, rebound as you mentioned. It took me 4 - 5 months to get rid of it. I tapered off about 1/8 of a tablet a week and I noticed that every week high spikes were lower and lower. At first I had 245/145, in the end 160/90. Also you didn't mention anything about his diet. Is he Dashing or is he on low sodium diet? It should help. Natalia Kamneva 67 Russian F with 2 cm left adrenal adenoma, recently diagnosed with PA; diabetic; on 100 mg eplerenone, 80 mg Micardis, 2000 mg metformin, 60 mg Dexilant and 2 mg Lorazepam; Dashing; still have some occasional problems with BP, K and Na; on private consultation with Dr Grim.To: hyperaldosteronism Sent: Sunday, November 6, 2011 6:13 PMSubject: new here

Hi,

New to this group, but glad I found it. It's nice to know that my husband is not the only one that had a long road to diagnosis and treatment.

My husband is 42 yo., slightly overweight. Started having severe BP issues about 4 years ago out of the blue after being completely healthy. Also started having anxiety and depression at same time. Diagnosed w/ PA 2 years ago after undergoing testing/labs for PA. Had to take 120meq of K per day x 6 mo when first dx d/t levels around 2.2. Thankfully His K has been pretty stable recently on 20 meq twice daily. He is currently managed by nephrologist. They did a CT scan 1.5 years ago and did not see any tumors. Managed w/meds OK (with frequent adjustments) until about 6 months ago when nothing he takes seems to work at all except prn clonidine which we recently found out causes rebound hypertension. A "good" BP for him lately has been anything below 160/100. Spikes often as high as 190 for systolic and 156 for diastolic. Crazy. He can barely make it through the work week, is exhausted and just drained all the time.

His nephrologist order the AVS in Sept. AVS showed the left adrenal producing way excessive amounts of aldosterone. He was referred to surgeon and set for adrenaletcomy in middle of Dec.

So, my only goal in life is to ensure he does not have a stroke between down and then. He has been trying to adapt to the dash diet (admittedly he has some work to do on this). He has a huge family hx of strokes and high BP. HIs nephrologist has been responsive to the need for med changes, but difficulty finding a combo that works. Just added the hydralazine last week which has helped quite a bit, but still having really high spikes. He's currently taking the following for BP:

inspra 100mg once daily

atenolol 100mg once daily

lisinopril 20mg once daily

imdur 60mg once daily

hydralazine 40mg three times daily

clonidine 0.1mg (prn for systolic BP over 160)

Any other recommendations for managing BP until surgery? We are grateful for the light at the end of the tunnel w/adrenalectomy. I read several of the posts here on adrenalectomy stories which have been very helpful.

Thanks!

[Guest guest]

No, virtually no salt craving.  I cannot even stand the taste of a regular, salted potato chip. I do occasionally have Chinese or something like that but I'm never able to eat it without complaining about the sodium.  Sometimes, I get Chinese and have them put the sauce on the side.  Then, I add just a tiny bit of the sauce. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Natalia Kamneva Val, Do you have some salt craving? I can hold myself for several days and after that eat the whole pickle or the can of marinated mushrooms. Aftermath is not only feeling badly, but feeling also guilty :-) Natalia And Val...you know that NO salt can kill him too, especially if the ticker has some issues. Even all the animals in nature find something to " lick " . So moderate is the key. Now when your urine was so low, did you kind of feel it? I know you had a myriad of things going on, but did your pressure get low, or was it actually good for you? Subject: RE: new hereTo: hyperaldosteronism Date: Sunday, November 6, 2011, 9:23 PM And until surgery, he should DASH 100% because his life depends on it. Salt will kill him. When I was seriously controlling sodium, I ate <800 mg/day. That meant I never ate even a slice of bread. If I had a hamburger, it was without the bun. I was very serious and my urinary sodium was too low to quantitate. For right now, rice, potatoes, vegetables, fruit, meat that is not sodium infused (i.e., has about 60 - 70 mg sodium per serving). I have not found any pork that is not infused and have to look carefully to find chicken and beef that is not infused. I kept track of everything that went into my mouth with FitDay www.fitday.com Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of StudyCircleMy experience from this group is that increase Inspra to 200 and continue K120 mEq and stop all other drugs ...they don't do anything in PA.|Hi,| New to this group, but glad I found it. It's nice to know that my husbandis not|the only one that had a long road to diagnosis and treatment.||My husband is 42 yo., slightly overweight. Started having severe BP issuesabout|4 years ago out of the blue after being completely healthy. Also startedhaving|anxiety and depression at same time. Diagnosed w/ PA 2 years ago after|undergoing testing/labs for PA. Had to take 120meq of K per day x 6 mowhen|first dx d/t levels around 2.2. Thankfully His K has been pretty stablerecently on|20 meq twice daily. He is currently managed by nephrologist. They did a CTscan|1.5 years ago and did not see any tumors. Managed w/meds OK (with frequent|adjustments) until about 6 months ago when nothing he takes seems to workat|all except prn clonidine which we recently found out causes rebound|hypertension. A " good " BP for him lately has been anything below 160/100.|Spikes often as high as 190 for systolic and 156 for diastolic. Crazy. Hecan barely|make it through the work week, is exhausted and just drained all the time.||His nephrologist order the AVS in Sept. AVS showed the left adrenalproducing|way excessive amounts of aldosterone. He was referred to surgeon and setfor|adrenaletcomy in middle of Dec.||So, my only goal in life is to ensure he does not have a stroke betweendown and|then. He has been trying to adapt to the dash diet (admittedly he has somework|to do on this). He has a huge family hx of strokes and high BP. HIsnephrologist|has been responsive to the need for med changes, but difficulty finding acombo|that works. Just added the hydralazine last week which has helped quite abit,|but still having really high spikes. He's currently taking the followingfor BP:||inspra 100mg once daily|atenolol 100mg once daily|lisinopril 20mg once daily|imdur 60mg once daily|hydralazine 40mg three times daily|clonidine 0.1mg (prn for systolic BP over 160)||Any other recommendations for managing BP until surgery? We are gratefulfor|the light at the end of the tunnel w/adrenalectomy. I read several of theposts|here on adrenalectomy stories which have been very helpful.||Thanks!|||||

[Guest guest]

,I think for someone on 6 - 7 BP medicines and raging HTN, waiting for surgery, can afford very, very low salt.  I think the Rice Diet is only 250 mg/d.  He can easily get enough  sodium that naturally occurs in food.  I think celery is pretty high sodium. I have excess aldosterone but I don't know if it is PA and don't know if it is permanent.  On so little sodium, my BP still ran about 152.  Before I got on Lyme treatment, a salty meal caused paralysis in the night and intense anxiety.  Dr. Grim probably remembers how I used to frequently write about being " brittle. " ( I've been here for about a hundred years.)    Now, I can eat quite a bit of salt and have never had the paralysis since.  I still occasionally have " brittles " from eating too much salt.  On Lyme treatment, my BP has nearly constantly fallen and my ingestion of Inspra (spiro) is now only 25% of where it was.  I'm thinking my serious reaction to sodium had something to do with Lyme, but will never know. Val _______________________________________________________________________________________________________Female, hypothyroidism, hyperparathyroidism, hyperaldosterone (all endocrine, BTW), and Lyme + HTN that have responded very well to IV antibiotics; breast cancer caught early and probably cured. From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Bingham And Val...you know that NO salt can kill him too, especially if the ticker has some issues. Even all the animals in nature find something to " lick " . So moderate is the key. Now when your urine was so low, did you kind of feel it? I know you had a myriad of things going on, but did your pressure get low, or was it actually good for you? And until surgery, he should DASH 100% because his life depends on it. Salt will kill him. When I was seriously controlling sodium, I ate <800 mg/day. That meant I never ate even a slice of bread. If I had a hamburger, it was without the bun. I was very serious and my urinary sodium was too low to quantitate. For right now, rice, potatoes, vegetables, fruit, meat that is not sodium infused (i.e., has about 60 - 70 mg sodium per serving). I have not found any pork that is not infused and have to look carefully to find chicken and beef that is not infused. I kept track of everything that went into my mouth with FitDay www.fitday.com ||

[Guest guest]

I would be terrified to eat a lot of salt.  While I haven't had paralysis since getting Lyme treatment, I still get the " brittles " from too much sodium. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Clarence Grim And that is likely playing a major role in why u are doing so well. Guess you. Could test This by going back on a high salt diet for a few days. But don't recommend this. And until surgery, he should DASH 100% because his life depends on it. Salt will kill him. When I was seriously controlling sodium, I ate <800 mg/day. That meant I never ate even a slice of bread. If I had a hamburger, it was without the bun. I was very serious and my urinary sodium was too low to quantitate. For right now, rice, potatoes, vegetables, fruit, meat that is not sodium infused (i.e., has about 60 - 70 mg sodium per serving). I have not found any pork that is not infused and have to look carefully to find chicken and beef that is not infused. I kept track of everything that went into my mouth with FitDay www.fitday.com From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of StudyCircleMy experience from this group is that increase Inspra to 200 and continue K120 mEq and stop all other drugs ...they don't do anything in PA.|Hi,| New to this group, but glad I found it. It's nice to know that my husbandis not|the only one that had a long road to diagnosis and treatment.||My husband is 42 yo., slightly overweight. St arted having severe BP issuesabout|4 years ago out of the blue after being completely healthy. Also startedhaving|anxiety and depression at same time. Diagnosed w/ PA 2 years ago after|undergoing testing/labs for PA. Had to take 120meq of K per day x 6 mowhen|first dx d/t levels around 2.2. Thankfully His K has been pretty stablerecently on|20 meq twice daily. He is currently managed by nephrologist. They did a CTscan|1.5 years ago and did not see any tumors. Managed w/meds OK (with frequent|adjustments) until about 6 months ago when nothing he takes seems to workat|all except prn clonidine which we recently found out causes rebound|hypertension. A " good " BP for him lately has been anything below 160/100.|Spikes often as high as 190 for systolic and 156 for diastolic. Crazy. Hecan barely|make it through the work week, is exhausted and just drained all the time.||His nephrologist order the AVS in Sept. AVS showed the left adrenalproducing|way excessive amounts of aldosterone. He was referred to surgeon and setfor|adrenaletcomy in middle of Dec.||So, my only goal in life is to ensure he does not have a stroke betweendown and|then. He has been trying to adapt to the dash diet (admittedly he has somework|to do on this). He has a huge family hx of strokes and high BP. HIsnephrologist|has been responsive to the need for med changes, but difficulty finding acombo|that works. Just added the hydralazine last week which has helped quite abit,|but still having really high spikes. He's currently taking the followingfor BP:||inspra 100mg once daily|atenolol 100mg once daily|lisinopril 20mg once daily|imdur 60mg once daily|hydralazine 40mg three times daily|clonidine 0.1mg (prn for systolic BP over 160)||Any other recommendations for managing BP until surgery? We are gratefulfor|the light at the end of the tunnel w/adrenalectomy. I read several of theposts|here on adrenalectomy stories which have been very helpful.||Thanks!|||||

[Guest guest]

I simply meant temporary to test if the spiro works and if he may have been outsalting itSent from my Palm Pre on the Now Network from Sprint

,I think for someone on 6 - 7 BP medicines and raging HTN, waiting for surgery, can afford very, very low salt. I think the Rice Diet is only 250 mg/d. He can easily get enough sodium that naturally occurs in food. I think celery is pretty high sodium. I have excess aldosterone but I don't know if it is PA and don't know if it is permanent. On so little sodium, my BP still ran about 152. Before I got on Lyme treatment, a salty meal caused paralysis in the night and intense anxiety. Dr. Grim probably remembers how I used to frequently write about being "brittle." ( I've been here for about a hundred years.) Now, I can eat quite a bit of salt and have never had the paralysis since. I still occasionally have "brittles" from eating too much salt. On Lyme treatment, my BP has nearly constantly fallen and my ingestion of Inspra (spiro) is now only 25% of where it was. I'm thinking my serious reaction to sodium had something to do with Lyme, but will never know. Val _______________________________________________________________________________________________________Female, hypothyroidism, hyperparathyroidism, hyperaldosterone (all endocrine, BTW), and Lyme + HTN that have responded very well to IV antibiotics; breast cancer caught early and probably cured. From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Bingham And Val...you know that NO salt can kill him too, especially if the ticker has some issues. Even all the animals in nature find something to "lick". So moderate is the key. Now when your urine was so low, did you kind of feel it? I know you had a myriad of things going on, but did your pressure get low, or was it actually good for you? And until surgery, he should DASH 100% because his life depends on it. Salt will kill him. When I was seriously controlling sodium, I ate <800 mg/day. That meant I never ate even a slice of bread. If I had a hamburger, it was without the bun. I was very serious and my urinary sodium was too low to quantitate. For right now, rice, potatoes, vegetables, fruit, meat that is not sodium infused (i.e., has about 60 - 70 mg sodium per serving). I have not found any pork that is not infused and have to look carefully to find chicken and beef that is not infused. I kept track of everything that went into my mouth with FitDay www.fitday.com ||

[Guest guest]

Pts with PA have higher BP when asleep and this gets much better when on a low sodium diet. Keep DASHing and keep up posted. Most of the BP lowering effect is max by 2 weeks.: Keep us posted. What meds is he taking now?CE Grim MD , I had lots of high bp reading in the mornings....when I had tests with the cardo doc my bp was very high...he wanted a stress test, they wouldnt put me in the treadmill because my bp was high.( 160ish/110ish)....they gave me this shot and I didnt like it.....so he told me I could take one of my bp pills then he asked me if I took my bp meds the night before....ummmm yeah!!!!! () Marie51 w f Florida, AVS showed unilateral on the left Adrenal.....Laparoscopy left adrenal December 15, 2010, doing much better...heart valve leakage.... had LVH before surgery do not have it now..... Re: new here Update: My husband has been faithfully doing the DASH diet @1000mg-1200mg/day and V-8 x 2 days (which I know is not long enough to have a huge difference). Tolerating well. Lots of plain baked potatoes, salad, almonds and eggs. It's hard to believe how much sodium is in food until you really look. I have always looked at fat and calories on food labels, but never really gave sodium too much thought. Will try to see if he can tolerate a little less sodium every few days. His BP has been still really high in the morning which it always is (183/121 this morning) but much more stable during the day with fewer spikes (averaging 145/90) which is MUCH improved. Will keep you posted, but thanks for all the great advice. Maybe he can even get off of some of the meds pre-surgery! Anyone else have the issue w/extremely high BP when waking up in the morning? Is that common w/hyperaldosteronism an/or just HTN in general? ,I think for someone on 6 - 7 BP medicines and raging HTN, waiting for surgery, can afford very, very low salt. I think the Rice Diet is only 250 mg/d. He can easily get enough sodium that naturally occurs in food. I think celery is pretty high sodium. I have excess aldosterone but I don't know if it is PA and don't know if it is permanent. On so little sodium, my BP still ran about 152. Before I got on Lyme treatment, a salty meal caused paralysis in the night and intense anxiety. Dr. Grim probably remembers how I used to frequently write about being "brittle." ( I've been here for about a hundred years.) Now, I can eat quite a bit of salt and have never had the paralysis since. I still occasionally have "brittles" from eating too much salt. On Lyme treatment, my BP has nearly constantly fallen and my ingestion of Inspra (spiro) is now only 25% of where it was. I'm thinking my serious reaction to sodium had something to do with Lyme, but will never know. Val _______________________________________________________________________________________________________Female, hypothyroidism, hyperparathyroidism, hyperaldosterone (all endocrine, BTW), and Lyme + HTN that have responded very well to IV antibiotics; breast cancer caught early and probably cured. From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Bingham And Val...you know that NO salt can kill him too, especially if the ticker has some issues. Even all the animals in nature find something to "lick". So moderate is the key. Now when your urine was so low, did you kind of feel it? I know you had a myriad of things going on, but did your pressure get low, or was it actually good for you? And until surgery, he should DASH 100% because his life depends on it. Salt will kill him. When I was seriously controlling sodium, I ate <800 mg/day. That meant I never ate even a slice of bread. If I had a hamburger, it was without the bun. I was very serious and my urinary sodium was too low to quantitate. For right now, rice, potatoes, vegetables, fruit, meat that is not sodium infused (i.e., has about 60 - 70 mg sodium per serving). I have not found any pork that is not infused and have to look carefully to find chicken and beef that is not infused. I kept track of everything that went into my mouth with FitDay www.fitday.com ||

[Guest guest]

No changes to meds yet. Waiting to hear from MD. Good to know the morning BP will go down eventually, too as that is when it is the highest. Thanks again.

 

Pts with PA have higher BP when asleep and this gets much better when on a low sodium diet. Keep DASHing and keep up posted. Most of the BP lowering effect is max by 2 weeks.

:  Keep us posted. What meds is he taking now?

CE Grim MD 

 

,

I had lots of high bp reading in the mornings....when I had tests with the cardo doc my bp was very high...he wanted a stress test, they wouldnt put me in the treadmill because my bp was high.( 160ish/110ish)....they gave me this shot and I didnt like it.....so he told me I could take one of my bp pills then he asked me if I took my bp meds the night before....ummmm yeah!!!!!

() Marie51 w f Florida, AVS showed unilateral on the left Adrenal.....Laparoscopy left adrenal December 15, 2010, doing much better...heart valve leakage.... had LVH before surgery do not have it now.....

Re: new here

 

Update: My husband has been faithfully doing the DASH diet @1000mg-1200mg/day and V-8 x 2 days (which I know is not long enough to have a huge difference). Tolerating well. Lots of plain baked potatoes, salad, almonds and eggs. It's hard to believe how much sodium is in food until you really look. I have always looked at fat and calories on food labels, but never really gave sodium too much thought. Will try to see if he can tolerate a little less sodium every few days. His BP has been still really high in the morning which it always is (183/121 this morning) but much more stable during the day with fewer spikes (averaging 145/90) which is MUCH improved. Will keep you posted, but thanks for all the great advice. Maybe he can even get off of some of the meds pre-surgery!

Anyone else have the issue w/extremely high BP when waking up in the morning? Is that common w/hyperaldosteronism an/or just HTN in general?

 

,

I think for someone on 6 - 7 BP medicines and raging HTN, waiting for surgery, can afford very, very low salt.  I think the Rice Diet is only 250 mg/d.  He can easily get enough  sodium that naturally occurs in food.  I think celery is pretty high sodium.

 

I have excess aldosterone but I don't know if it is PA and don't know if it is permanent.  On so little sodium, my BP still ran about 152.  Before I got on Lyme treatment, a salty meal caused paralysis in the night and intense anxiety.  Dr. Grim probably remembers how I used to frequently write about being " brittle. " ( I've been here for about a hundred years.)    Now, I can eat quite a bit of salt and have never had the paralysis since.  I still occasionally have " brittles " from eating too much salt.  On Lyme treatment, my BP has nearly constantly fallen and my ingestion of Inspra (spiro) is now only 25% of where it was.  I'm thinking my serious reaction to sodium had something to do with Lyme, but will never know.

 

Val

 

_______________________________________________________________________________________________________

Female, hypothyroidism, hyperparathyroidism, hyperaldosterone (all endocrine, BTW), and Lyme + HTN that have responded very well to IV antibiotics; breast cancer caught early and probably cured.

 

 

From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Bingham

 

And Val...you know that NO salt can kill him too, especially if the ticker has some issues. Even all the animals in nature find something to " lick " . So moderate is the key. Now when your urine was so low, did you kind of feel it? I know you had a myriad of things going on, but did your pressure get low, or was it actually good for you?

And until surgery, he should DASH 100% because his life depends on it.  Salt will kill him.  When I was seriously controlling sodium, I ate <800 mg/day.  That meant I never ate even a slice of bread.  If I had a hamburger, it was without the bun.  I was very serious and my urinary sodium was too low to quantitate.  For right now, rice, potatoes, vegetables, fruit, meat that is not sodium infused (i.e., has about 60 - 70 mg sodium per serving).  I have not found any pork that is not infused and have to look carefully to find chicken and beef that is not infused.  I kept track of everything that went into my mouth with FitDay www.fitday.com

 

||

[Guest guest]

That assumes you eat a DASH diet. CE Grim MD No changes to meds yet. Waiting to hear from MD. Good to know the morning BP will go down eventually, too as that is when it is the highest. Thanks again. Pts with PA have higher BP when asleep and this gets much better when on a low sodium diet. Keep DASHing and keep up posted. Most of the BP lowering effect is max by 2 weeks. : Keep us posted. What meds is he taking now? CE Grim MD , I had lots of high bp reading in the mornings....when I had tests with the cardo doc my bp was very high...he wanted a stress test, they wouldnt put me in the treadmill because my bp was high.( 160ish/110ish)....they gave me this shot and I didnt like it.....so he told me I could take one of my bp pills then he asked me if I took my bp meds the night before....ummmm yeah!!!!! () Marie51 w f Florida, AVS showed unilateral on the left Adrenal.....Laparoscopy left adrenal December 15, 2010, doing much better...heart valve leakage.... had LVH before surgery do not have it now..... Re: new here Update: My husband has been faithfully doing the DASH diet @1000mg-1200mg/day and V-8 x 2 days (which I know is not long enough to have a huge difference). Tolerating well. Lots of plain baked potatoes, salad, almonds and eggs. It's hard to believe how much sodium is in food until you really look. I have always looked at fat and calories on food labels, but never really gave sodium too much thought. Will try to see if he can tolerate a little less sodium every few days. His BP has been still really high in the morning which it always is (183/121 this morning) but much more stable during the day with fewer spikes (averaging 145/90) which is MUCH improved. Will keep you posted, but thanks for all the great advice. Maybe he can even get off of some of the meds pre-surgery! Anyone else have the issue w/extremely high BP when waking up in the morning? Is that common w/hyperaldosteronism an/or just HTN in general? ,I think for someone on 6 - 7 BP medicines and raging HTN, waiting for surgery, can afford very, very low salt. I think the Rice Diet is only 250 mg/d. He can easily get enough sodium that naturally occurs in food. I think celery is pretty high sodium. I have excess aldosterone but I don't know if it is PA and don't know if it is permanent. On so little sodium, my BP still ran about 152. Before I got on Lyme treatment, a salty meal caused paralysis in the night and intense anxiety. Dr. Grim probably remembers how I used to frequently write about being "brittle." ( I've been here for about a hundred years.) Now, I can eat quite a bit of salt and have never had the paralysis since. I still occasionally have "brittles" from eating too much salt. On Lyme treatment, my BP has nearly constantly fallen and my ingestion of Inspra (spiro) is now only 25% of where it was. I'm thinking my serious reaction to sodium had something to do with Lyme, but will never know. Val _______________________________________________________________________________________________________Female, hypothyroidism, hyperparathyroidism, hyperaldosterone (all endocrine, BTW), and Lyme + HTN that have responded very well to IV antibiotics; breast cancer caught early and probably cured. From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Bingham And Val...you know that NO salt can kill him too, especially if the ticker has some issues. Even all the animals in nature find something to "lick". So moderate is the key. Now when your urine was so low, did you kind of feel it? I know you had a myriad of things going on, but did your pressure get low, or was it actually good for you? And until surgery, he should DASH 100% because his life depends on it. Salt will kill him. When I was seriously controlling sodium, I ate <800 mg/day. That meant I never ate even a slice of bread. If I had a hamburger, it was without the bun. I was very serious and my urinary sodium was too low to quantitate. For right now, rice, potatoes, vegetables, fruit, meat that is not sodium infused (i.e., has about 60 - 70 mg sodium per serving). I have not found any pork that is not infused and have to look carefully to find chicken and beef that is not infused. I kept track of everything that went into my mouth with FitDay www.fitday.com ||

[Guest guest]

Suspect he needs more eplere and diet K and less Na. Many of themeds uHe is on don't work IN. PA and most can control BP WITH only MCB and DASHMay your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension

Thanks for your response. He's never been on spiro. Only reason is he was given choice by MD to go w/spiro or inspra and inspra seemed to have less side effects.Did read your article which was helpful in understanding PA, however have not had an opportunity to share w/his neph. Plan to this week.

Will ask neph for the urine Na and K to see what he needs to on the dash plan and have him start V8.Thank you for getting the info needed to start conversation w/his doctor!

Yes have Neph check urine Na and K to see what he needs to do on the DASH PLAN. Strong FH of stroke suggests GRA ESP if I bump on adrenal scans. Eplerenone does is low for severe PA WAS HE EVER on Spiro?

I can assure you once he begins to DASH TO the max as validAted by urine N and k Bp will become much better and he will feel like a new man. Many of the meds he is on do not work on PA. HAVE you or your Neph not yet read my evolution of PA Article. If not you will not understand

The problem. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension

Hi,

New to this group, but glad I found it. It's nice to know that my husband is not the only one that had a long road to diagnosis and treatment.

My husband is 42 yo., slightly overweight. Started having severe BP issues about 4 years ago out of the blue after being completely healthy. Also started having anxiety and depression at same time. Diagnosed w/ PA 2 years ago after undergoing testing/labs for PA. Had to take 120meq of K per day x 6 mo when first dx d/t levels around 2.2. Thankfully His K has been pretty stable recently on 20 meq twice daily. He is currently managed by nephrologist. They did a CT scan 1.5 years ago and did not see any tumors. Managed w/meds OK (with frequent adjustments) until about 6 months ago when nothing he takes seems to work at all except prn clonidine which we recently found out causes rebound hypertension. A "good" BP for him lately has been anything below 160/100. Spikes often as high as 190 for systolic and 156 for diastolic. Crazy. He can barely make it through the work week, is exhausted and just drained all the time.

His nephrologist order the AVS in Sept. AVS showed the left adrenal producing way excessive amounts of aldosterone. He was referred to surgeon and set for adrenaletcomy in middle of Dec.

So, my only goal in life is to ensure he does not have a stroke between down and then. He has been trying to adapt to the dash diet (admittedly he has some work to do on this). He has a huge family hx of strokes and high BP. HIs nephrologist has been responsive to the need for med changes, but difficulty finding a combo that works. Just added the hydralazine last week which has helped quite a bit, but still having really high spikes. He's currently taking the following for BP:

inspra 100mg once daily

atenolol 100mg once daily

lisinopril 20mg once daily

imdur 60mg once daily

hydralazine 40mg three times daily

clonidine 0.1mg (prn for systolic BP over 160)

Any other recommendations for managing BP until surgery? We are grateful for the light at the end of the tunnel w/adrenalectomy. I read several of the posts here on adrenalectomy stories which have been very helpful.

Thanks!

[Guest guest]

Did already complete the data base. He's 42 yo. He wants to try the surgery and see if it works since he young (ish), otherwise in good health and we have good medical coverage.  We were always concerned if it didn't work for some reason what would happen w/his BP. He understands he would need to still DASH post-op even it successful. We were told the AVS was definitive that the left adrenal gland was the issue. Not sure if that makes a difference or not.

 

You understand the success of ADX is prob less than 50% for a cure.  Reason we recommend surgery only if DASH and MCBs fail to get to goal. I do not recall age in his thumbnail. 

Trust you have filled out our database so you can help us help future patients.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 4/20/11 for me would be Grim110420.  This way of writing the date is an ever increasing number and will allow us and you to sort your multiple entries into a dated order. We are working on a more extensive database.

CE Grim MD

Welcome to the exciting world of Hyperaldosteronism You are in the right place! 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 as a 4th year medical student.  I did a Nephrology Fellowship at Duke and an Endocrinology and Metabolism Fellowship with Dr. Conn (1969-70).  I have been on the faculty of the University of MO, Indiana Univ, UCLA/ R. Drew, and the Medical College of Wisconsin in Divisions of Nephrology, Endocrinology, Hypertension, Cardiology and Epidemiology.

 I 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).

 Be certain that you and your health care team understand the key role of excess diet salt in HTN and especially in PA. Go to:   http://www.worldactiononsalt.com/evidence/treatment_trials.htm

 For a state of the art and science discussion of salt and health. 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 "

Then send us your story in an email and then we will likely ask more questions and make suggestions before you upload it to our files. 3.     Hyperaldosteronism and Salt:  The deadly Duo. 

  Eating Plan to control high blood pressure due to hyperaldosteronism and most others with high blood pressure.   This will reduce 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 in only 2-3 days. 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.

 Or go to  (but costs money) DASH Diet for Health ProgramThe DASH Diet for Health Program is designed to help you improve your eating and exercise habits. Twice each week we will provide you with information on our website about food, food preparation, eating out, losing weight, getting fit and much more. In addition to providing new information each week on our website, we create a web page specially for you where you can track progress in areas such as your weight, blood pressure, and exercise.

http://www.dashforhealth.com/ I strongly recommend you get the book and read it now!

 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.  Your life is in the hands of those who measure your BP.  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.  There is a brief discussion of this in my Evolution Article.

 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 high salt diet for 2 weeks-at least 4000 mg of Na  a day.2. No BP meds in last 4-12 weeks depending on meds and Drs advice.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 1-4 hours after you have been out of bed.

5. Send us the results with the normal values for your lab.6. If you ever have a salt (saline) infusion test for PA be certain to ask them to measure how much you pee during the 4 hours of the infusion. If it is 1-1.5 liter of urine it strongly suggests that you may have PA.  If more tha 1.5 L you almost certainly have PA.  I call this Dr. Grim’s “Quick Pee Test” for PA.

 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 4/20/11 for me would be Grim110420.  This way of writing the date is an ever increasing number and will allow us and you to sort your multiple entries into a dated order. We are working on a more extensive database.

 8.     Learn the language:  If you are new to medical lingo then download the acroyms from  http://health.groups.yahoo.com/group/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. 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 communicate the importance of high blood pressure to my patients.  JNC 8 will 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.     One-on-one Consulting:  I can provide individual consulting if you do not want to go public.  If you want individual one-on-one consulting for you and your Doctor contract me directly at lowerbp2@....

May your pressure be low!Clarence E. Grim BS, MS, MD, FACP, FACCBoard Certified in Internal Medicine, Geriatrics, and High Blood Pressure

 Specializing in Primary Aldosteronism and Difficult to Control High Blood Pressure.  

  Husband is on day 6 of DASH, V8, high K diet. Highest morning BP (upon waking) has been 140/100 (down from 170/115). Daytime BP's for the first time in YEARS in the 120-130/80-90 range (was rarely below 160/100 during the day). He feels great I am SO relieved that his BP is stable. Working on weaning off of BP meds (except Inspra). Less than a month until adrenalectomy and grateful his BP is now stable going into surgery. Will keep you posted, but wanted to update and thank you!

  Suspect he needs more eplere and diet K and less Na. Many of themeds uHe is on don't work IN. PA and most can control BP WITH only MCB and DASH

May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension

  Thanks for your response. He's never been on spiro. Only reason is he was given choice by MD to go w/spiro or inspra and inspra  seemed to have less side effects.

Did read your article which was helpful in understanding PA, however have not had an opportunity to share w/his neph. Plan to this week. Will ask neph for the urine Na and K to see what he needs to on the dash plan and have him start V8.

Thank you for getting the info needed to start conversation w/his doctor!

  Yes have Neph  check urine Na and K to see what he needs to do on the DASH PLAN.  Strong FH of stroke suggests GRA ESP if  I bump on adrenal scans. 

Eplerenone does is low for severe PA WAS HE EVER on Spiro?   I can assure you once he begins to DASH TO the max as validAted by urine N and k Bp will become much better and he will feel like a new man. Many of the meds he is on do not work on PA. HAVE you or your Neph  not yet read my evolution of PA Article. If not you will not understand

The problem. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension

 

Hi, New to this group, but glad I found it. It's nice to know that my husband is not the only one that had a long road to diagnosis and treatment. My husband is 42 yo., slightly overweight. Started having severe BP issues about 4 years ago out of the blue after being completely healthy. Also started having anxiety and depression at same time. Diagnosed w/ PA 2 years ago after undergoing testing/labs for PA. Had to take 120meq of K per day x 6 mo when first dx d/t levels around 2.2. Thankfully His K has been pretty stable recently on 20 meq twice daily. He is currently managed by nephrologist. They did a CT scan 1.5 years ago and did not see any tumors. Managed w/meds OK (with frequent adjustments) until about 6 months ago when nothing he takes seems to work at all except prn clonidine which we recently found out causes rebound hypertension. A " good " BP for him lately has been anything below 160/100. Spikes often as high as 190 for systolic and 156 for diastolic. Crazy. He can barely make it through the work week, is exhausted and just drained all the time.

His nephrologist order the AVS in Sept. AVS showed the left adrenal producing way excessive amounts of aldosterone. He was referred to surgeon and set for adrenaletcomy in middle of Dec. So, my only goal in life is to ensure he does not have a stroke between down and then. He has been trying to adapt to the dash diet (admittedly he has some work to do on this). He has a huge family hx of strokes and high BP. HIs nephrologist has been responsive to the need for med changes, but difficulty finding a combo that works. Just added the hydralazine last week which has helped quite a bit, but still having really high spikes. He's currently taking the following for BP:

inspra 100mg once daily atenolol 100mg once daily lisinopril 20mg once daily imdur 60mg once daily hydralazine 40mg three times daily clonidine 0.1mg (prn for systolic BP over 160) Any other recommendations for managing BP until surgery? We are grateful for the light at the end of the tunnel w/adrenalectomy. I read several of the posts here on adrenalectomy stories which have been very helpful.

Thanks!

[Guest guest]

Hi. I am newly diagnosed with hyperaldo. My primary Dr. started me on 25mg of

Spiro. I've only been taking it for a few days. Is this dosage enough to start

lowering my aldo. He also told me to stop my potassium supplements but I'm

nervous about my potassium dropping even though spiro is a potassium sparing

diuretic. I don't want to end up back in ER with 2.5 potassium. I'm praying this

medicine actually works for me as my bp has been very high. I also have my first

appt. with an Endo Dr., what to expect?

Thanks.

[Guest guest]

Greetings!

I am about 3 weeks behind you in starting spiro. 25 mg wasn't enough for me and

I had to up mine to 100 mg. But, only by monitoring my bp daily and keeping in

touch with my nephorologist did I have to do that. And, I personally do take k

supplementation along with magensium and when I was last in had did blood work

and it showed I was in the normal range.

Keep up the good work and be sure to ask lots of questions. We all can learn

from each others experiences.

>

> Hi. I am newly diagnosed with hyperaldo. My primary Dr. started me on 25mg of

Spiro. I've only been taking it for a few days. Is this dosage enough to start

lowering my aldo. He also told me to stop my potassium supplements but I'm

nervous about my potassium dropping even though spiro is a potassium sparing

diuretic. I don't want to end up back in ER with 2.5 potassium. I'm praying this

medicine actually works for me as my bp has been very high. I also have my first

appt. with an Endo Dr., what to expect?

>

> Thanks.

>

[Guest guest]

And to DASH and have medical team check your urine for spot Na and K to see how well u are DASHING. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension

Greetings!

I am about 3 weeks behind you in starting spiro. 25 mg wasn't enough for me and I had to up mine to 100 mg. But, only by monitoring my bp daily and keeping in touch with my nephorologist did I have to do that. And, I personally do take k supplementation along with magensium and when I was last in had did blood work and it showed I was in the normal range.

Keep up the good work and be sure to ask lots of questions. We all can learn from each others experiences.

>

> Hi. I am newly diagnosed with hyperaldo. My primary Dr. started me on 25mg of Spiro. I've only been taking it for a few days. Is this dosage enough to start lowering my aldo. He also told me to stop my potassium supplements but I'm nervous about my potassium dropping even though spiro is a potassium sparing diuretic. I don't want to end up back in ER with 2.5 potassium. I'm praying this medicine actually works for me as my bp has been very high. I also have my first appt. with an Endo Dr., what to expect?

>

> Thanks.

>

[Guest guest]

My bp sky rocketed right at the same time as I started on a very low dose of

spiro so the doc had put me on Lisinopril, 10 mg. But now that the spiro is

working at a higher dose so well I began to experience some dizziness. I

contacted my dr and he told me I could lower the lisinopril dosage to half.

My goal has always been to be on as few meds as possible.

So, in my quest for lower bp I lost 35 pounds, exercise regularly and eat only

real whole non-processed foods. I maintain that life style and my goal is to

only be on spiro and at the lowest possible dosage that maintains my bp.

I have a .1 cm cyst on my right adrenal gland and at this time I chose to keep

my adrenals where they are and see how things go. Things may change down the

road, but that's my plan for now.

HTH!

>

> Are you taking other meds to control your bp? I am currently taking 2 others.

They may end up increasing the spiro...idk. I'm just hoping my potassium doesn't

drop really low b/c I was told to stop taking the supplement w/the spiro. I go

for lab on Monday.

>

>

>

[Guest guest]

I'm with u on that. I hate being on 3 different meds to control my bp. Maybe at

my next appt. I will talk to dr. about increasing spiro to 50mg and maybe going

off one of my other meds...idk. I've only been on spiro 5 days and my bp average

is better than before but still have muscle spasms and headaches. I didn't

think the spiro would start lowering my bp so soon. Just gotta see what it's

doing to my potassium level. Thank God I decided to change primary dr b/c my old

one wasn't treating me properly and just didn't seem to know what to do...smh.

Re: new here

My bp sky rocketed right at the same time as I started on a very low dose of

spiro so the doc had put me on Lisinopril, 10 mg. But now that the spiro is

working at a higher dose so well I began to experience some dizziness. I

contacted my dr and he told me I could lower the lisinopril dosage to half.

My goal has always been to be on as few meds as possible.

So, in my quest for lower bp I lost 35 pounds, exercise regularly and eat only

real whole non-processed foods. I maintain that life style and my goal is to

only be on spiro and at the lowest possible dosage that maintains my bp.

I have a .1 cm cyst on my right adrenal gland and at this time I chose to keep

my adrenals where they are and see how things go. Things may change down the

road, but that's my plan for now.

HTH!

>

> Are you taking other meds to control your bp? I am currently taking 2 others.

They may end up increasing the spiro...idk. I'm

[Guest guest]

Dash to need fewer meds. Remind your Dr that lisinopril will not work in PA. TAKE him my evolution article after u have read it and it will become clear. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension

My bp sky rocketed right at the same time as I started on a very low dose of spiro so the doc had put me on Lisinopril, 10 mg. But now that the spiro is working at a higher dose so well I began to experience some dizziness. I contacted my dr and he told me I could lower the lisinopril dosage to half.

My goal has always been to be on as few meds as possible.

So, in my quest for lower bp I lost 35 pounds, exercise regularly and eat only real whole non-processed foods. I maintain that life style and my goal is to only be on spiro and at the lowest possible dosage that maintains my bp.

I have a .1 cm cyst on my right adrenal gland and at this time I chose to keep my adrenals where they are and see how things go. Things may change down the road, but that's my plan for now.

HTH!

>

> Are you taking other meds to control your bp? I am currently taking 2 others. They may end up increasing the spiro...idk. I'm just hoping my potassium doesn't drop really low b/c I was told to stop taking the supplement w/the spiro. I go for lab on Monday.

>

>

>

[Guest guest]

Dash and it will go down faster and lower. You can out salt Spiro. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension

I'm with u on that. I hate being on 3 different meds to control my bp. Maybe at my next appt. I will talk to dr. about increasing spiro to 50mg and maybe going off one of my other meds...idk. I've only been on spiro 5 days and my bp average is better than before but still have muscle spasms and headaches. I didn't think the spiro would start lowering my bp so soon. Just gotta see what it's doing to my potassium level. Thank God I decided to change primary dr b/c my old one wasn't treating me properly and just didn't seem to know what to do...smh.

Re: new here

My bp sky rocketed right at the same time as I started on a very low dose of spiro so the doc had put me on Lisinopril, 10 mg. But now that the spiro is working at a higher dose so well I began to experience some dizziness. I contacted my dr and he told me I could lower the lisinopril dosage to half.

My goal has always been to be on as few meds as possible.

So, in my quest for lower bp I lost 35 pounds, exercise regularly and eat only real whole non-processed foods. I maintain that life style and my goal is to only be on spiro and at the lowest possible dosage that maintains my bp.

I have a .1 cm cyst on my right adrenal gland and at this time I chose to keep my adrenals where they are and see how things go. Things may change down the road, but that's my plan for now.

HTH!

>

> Are you taking other meds to control your bp? I am currently taking 2 others. They may end up increasing the spiro...idk. I'm