Re: Re: Pre-AVS advice/Tips? What is the 4 weeks without Spiro like?

[Guest guest]

Everyone is different so follow closelyMay your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jul 23, 2012, at 13:44, crzylnebkr <smort@...> wrote:

Max,

Have you had an AVS already? What was your experience like? I am being treated at Wash U in St. Louis. Dr. Picus does all of the AVS procedures. My endo at Mayo is comfortable with me getting the AVS done in St. Louis.

How much did your BP shoot up before AVS (not on meds)? Did the doctor prescribe any BP meds during this time?

Thanks,

>

> Couple of things:

>

> . Do they use ACTH during AVS? If not then.see what Dr. Grim says J

>

> . Is the AVS radiologist experienced? How many AVS had he to repeat?

> How many failed? How many successful? If you don't check it out they put you

> under a new radiologist and he cannot find the right side vein and has to

> redo the AVS L

>

> . Quit Spirono for 6 weeks to be on the safe side J

>

> . Make sure post AVS full results because Dr. Grim has noticed many

> unbelievable dumb misinterpretations by AVS specialists L

>

> . If AVS done properly, you can walk same day.but not too much

> activity for a week in advised L

>

> . ..

>

> . Good luck.

>

>

>

> Max.

>

>

>

> | Pre-AVS advice/Tips? What is the 4 weeks

>

> |without Spiro like?

>

> |

>

> |I just got a call to schedule my AVS procedure on August 23rd. This 4 1/2

> weeks

>

> |from now. Before everyone lets me know about the 6 weeks off spiro, the

>

> |Wash U/ protocol is to wait 4 weeks. My endo at Mayo did not seem to

>

> |think this would be a problem and told me that many publications state 4

> week

>

> |waiting period.

>

> |

>

> |Anyway, I am wondering what are the rules or tips to live by during the

> weeks

>

> |leading up to the AVS? I am wondering about the following:

>

> |

>

> |Exercise

>

> |I love to exercise and run 3-4 times per week. I lift weights off and on

> and play

>

> |basketball after work throughout the work week. Is exercise off limits

> without

>

> |meds? Do I need to take it easy? What have others been told? What have

>

> |your experiences been like?

>

> |

>

> |Potassium

>

> |I kind of DASH (eat enough servings of veg and fruit), but tend to eat more

> red

>

> |meat, poultry, and nuts than prescribed by the DASH serving sizes/daily

>

> |requirements. Do I need to have my potassium checked frequently? Do I

> need

>

> |to up my intake of my tasty Low Sodium V8?

>

> |

>

> |Spiro

>

> |Do you have to taper Spiro like a beta blocker? Or is it best to stop cold

> turkey?

>

> |Any doctors tell you to taper?

>

> |

>

> |Post AVS - Surgery

>

> |This is more selfish than anything, but I have a golf trip scheduled for

> September

>

> |19th. I am wondering if my AVS is conclusive and I am a candidate for

> surgery,

>

> |if it hurts anything to postpone surgery after AVS. My plan would be to go

> back

>

> |on the Spiro after AVS and have surgery in December if I am a candidate.

> Any

>

> |disadvantages to this? Any danger in this? Any advantages to doing

> surgery

>

> |right away?

>

> |

>

> |Risk of Stroke/Heart Attack

>

> |Before I was diagnosed I had crazy, out of control, anxiety! The Spiro and

>

> |exercise has eliminated this to the point that my former psychiatrist (now

>

> |friend) told me I didn't need to visit her anymore after on the Spiro for 3

> weeks.

>

> |My attitude changed and anxiety subsided. Well, I have to admit that I am

>

> |having some anxiety issues with being off the meds for 4 weeks. I am

>

> |wondering if my BP will sky rocket. I am wondering if I am going to have a

> heart

>

> |attack while running, lifting, or playing basketball.

>

> |

>

> |Thank you in advance for anyone who has experience dealing with the weeks

>

> |leading up to AVS. This site is so valuable.

>

> |

>

> |

>

> |35yr old male. Diagnosed 04/2011. 50mg Spiro (25 morning/25 night).

>

> |

>

> |

>

> |

>

> |------------------------------------

>

> |

>

> |

[Guest guest]

, · I stopped Spiro for 6 weeks for pre AVS tests and I knew bp shoots up so doc gave me a lot of pills of an alpha-blocker so that I started from 1 mg/d and increase as bp was going up. So after 4th week I had to increase it to 3 mg/d and 6th week to 4 mg/d…it was somehow effective in lowering bp but not as good as Spiro.· The Report From Someone’s AVS · Post-AVS report.· Results of bilateral AVS· http://radiographics.rsna.org/content/25/suppl_1/S143.full.pdf· … Max. | Pre-AVS advice/Tips? What is the 4|> |weeks|>|> |without Spiro like?|>|> ||>|> |I just got a call to schedule my AVS procedure on August 23rd. This|> |4 1/2|> weeks|>|> |from now. Before everyone lets me know about the 6 weeks off spiro,|> |the|>|> |Wash U/ protocol is to wait 4 weeks. My endo at Mayo did not|> |seem to|>|> |think this would be a problem and told me that many publications|> |state 4|> week|>|> |waiting period.|>|> ||>|> |Anyway, I am wondering what are the rules or tips to live by during|> |the|> weeks|>|> |leading up to the AVS? I am wondering about the following:|>|> ||>|> |Exercise|>|> |I love to exercise and run 3-4 times per week. I lift weights off|> |and on|> and play|>|> |basketball after work throughout the work week. Is exercise off|> |limits|> without|>|> |meds? Do I need to take it easy? What have others been told? What|> |have|>|> |your experiences been like?|>|> ||>|> |Potassium|>|> |I kind of DASH (eat enough servings of veg and fruit), but tend to|> |eat more|> red|>|> |meat, poultry, and nuts than prescribed by the DASH serving|> |sizes/daily|>|> |requirements. Do I need to have my potassium checked frequently? Do|> |I|> need|>|> |to up my intake of my tasty Low Sodium V8?|>|> ||>|> |Spiro|>|> |Do you have to taper Spiro like a beta blocker? Or is it best to|> |stop cold|> turkey?|>|> |Any doctors tell you to taper?|>|> ||>|> |Post AVS - Surgery|>|> |This is more selfish than anything, but I have a golf trip scheduled|> |for|> September|>|> |19th. I am wondering if my AVS is conclusive and I am a candidate|> |for|> surgery,|>|> |if it hurts anything to postpone surgery after AVS. My plan would be|> |to go|> back|>|> |on the Spiro after AVS and have surgery in December if I am a candidate.|> Any|>|> |disadvantages to this? Any danger in this? Any advantages to doing|> surgery|>|> |right away?|>|> ||>|> |Risk of Stroke/Heart Attack|>|> |Before I was diagnosed I had crazy, out of control, anxiety! The|> |Spiro and|>|> |exercise has eliminated this to the point that my former psychiatrist|> |(now|>|> |friend) told me I didn't need to visit her anymore after on the Spiro|> |for 3|> weeks.|>|> |My attitude changed and anxiety subsided. Well, I have to admit that|> |I am|>|> |having some anxiety issues with being off the meds for 4 weeks. I am|>|> |wondering if my BP will sky rocket. I am wondering if I am going to|> |have a|> heart|>|> |attack while running, lifting, or playing basketball.|>|> ||>|> |Thank you in advance for anyone who has experience dealing with the|> |weeks|>|> |leading up to AVS. This site is so valuable.|>|> ||>|> ||>|> |35yr old male. Diagnosed 04/2011. 50mg Spiro (25 morning/25 night).|>|> ||>|> ||>|> ||>|> |------------------------------------|>|> ||>|> |

[Guest guest]

IndexMy Adrenal Vein Sampling ExperienceThe Failure Of My Adrenal Vein Sampling ExperienceThree Steps To Avoiding AVS FailuresThe Report From My Adrenal Vein SamplingRecommended LinksAVS: A Patient Perspective by blogger Flower SpyAVS: How to make it quick, easy, and successful (Daunt, N)What are the keys to successful AVS . . . (Young, WF) | Pre-AVS advice/Tips? What is the 4|> |weeks|>|> |without Spiro like?|>|> ||>|> |I just got a call to schedule my AVS procedure on August 23rd. This|> |4 1/2|> weeks|>|> |from now. Before everyone lets me know about the 6 weeks off spiro,|> |the|>|> |Wash U/ protocol is to wait 4 weeks. My endo at Mayo did not|> |seem to|>|> |think this would be a problem and told me that many publications|> |state 4|> week|>|> |waiting period.|>|> ||>|> |Anyway, I am wondering what are the rules or tips to live by during|> |the|> weeks|>|> |leading up to the AVS? I am wondering about the following:|>|> ||>|> |Exercise|>|> |I love to exercise and run 3-4 times per week. I lift weights off|> |and on|> and play|>|> |basketball after work throughout the work week. Is exercise off|> |limits|> without|>|> |meds? Do I need to take it easy? What have others been told? What|> |have|>|> |your experiences been like?|>|> ||>|> |Potassium|>|> |I kind of DASH (eat enough servings of veg and fruit), but tend to|> |eat more|> red|>|> |meat, poultry, and nuts than prescribed by the DASH serving|> |sizes/daily|>|> |requirements. Do I need to have my potassium checked frequently? Do|> |I|> need|>|> |to up my intake of my tasty Low Sodium V8?|>|> ||>|> |Spiro|>|> |Do you have to taper Spiro like a beta blocker? Or is it best to|> |stop cold|> turkey?|>|> |Any doctors tell you to taper?|>|> ||>|> |Post AVS - Surgery|>|> |This is more selfish than anything, but I have a golf trip scheduled|> |for|> September|>|> |19th. I am wondering if my AVS is conclusive and I am a candidate|> |for|> surgery,|>|> |if it hurts anything to postpone surgery after AVS. My plan would be|> |to go|> back|>|> |on the Spiro after AVS and have surgery in December if I am a candidate.|> Any|>|> |disadvantages to this? Any danger in this? Any advantages to doing|> surgery|>|> |right away?|>|> ||>|> |Risk of Stroke/Heart Attack|>|> |Before I was diagnosed I had crazy, out of control, anxiety! The|> |Spiro and|>|> |exercise has eliminated this to the point that my former psychiatrist|> |(now|>|> |friend) told me I didn't need to visit her anymore after on the Spiro|> |for 3|> weeks.|>|> |My attitude changed and anxiety subsided. Well, I have to admit that|> |I am|>|> |having some anxiety issues with being off the meds for 4 weeks. I am|>|> |wondering if my BP will sky rocket. I am wondering if I am going to|> |have a|> heart|>|> |attack while running, lifting, or playing basketball.|>|> ||>|> |Thank you in advance for anyone who has experience dealing with the|> |weeks|>|> |leading up to AVS. This site is so valuable.|>|> ||>|> ||>|> |35yr old male. Diagnosed 04/2011. 50mg Spiro (25 morning/25 night).|>|> ||>|> ||>|> ||>|> |------------------------------------|>|> ||>|> |

[Guest guest]

, I don't have testicular pain but I have noticed a few men, as opposed to women who never seem to, do report this symptom. I wonder if there is a commonality somewhere - like I can't recall but do you have a confirmed adenoma on a gland? I do not so far, and no pain in the netherregions, and I wonder if the size or location of it could be a factor. Just thinking out loud again.........

From: <jclark24p@...>Subject: Re: Pre-AVS advice/Tips? What is the 4 weeks without Spiro like?hyperaldosteronism Date: Monday, July 23, 2012, 5:00 PM

, Let me take a stab at BP. I stopped Spironolactone in December. Started 180 mg Verapamil bid and 10 mg Hydralazine bid until I went to NIH. (You can see a period where I didn't record when I was at NIH.) I was trying to DASH during the whole period but that was impossible at NIH! They got aggessive and I came out of there at 240 mg Verapamil bid and 5 mg Terazosin bid until I got the results of AVS (late Apr./Early May). At that point I started Eplerenone at 25 mg bid and soon after stopped the Terazosin. We have just recently increased the Eplerenone to 50 mg bid to see if we can eliminate the flank & testis pain. I plan to back Verapamil down once I get my PCP's BP under control! (She's so happy she doesn't want to do a thing!)

It really wasn't too bad but then, I was back at the BP I had run for 10+ years when I was on 7 BP meds! I'll share some other thoughts in another post but I'm here if you have questions!

.....

> > > > > I just got a call to schedule my AVS procedure on August 23rd. This 4 1/2 weeks from now. Before everyone lets me know about the 6 weeks off spiro, the Wash U/ protocol is to wait 4 weeks. My endo at Mayo did not seem to think this would be a problem and told me that many publications state 4 week waiting period.> > > > > > Anyway, I am wondering what are the rules or tips to live by during the weeks leading up to the AVS? I am wondering about the following:> > > > > > Exercise> > > I love to exercise and run 3-4 times per week. I lift weights off and on and play basketball after work throughout the work week. Is exercise off limits without meds? Do I need to take it easy? What have

others been told? What have your experiences been like?> > > > > > Potassium> > > I kind of DASH (eat enough servings of veg and fruit), but tend to eat more red meat, poultry, and nuts than prescribed by the DASH serving sizes/daily requirements. Do I need to have my potassium checked frequently? Do I need to up my intake of my tasty Low Sodium V8?> > > > > > Spiro> > > Do you have to taper Spiro like a beta blocker? Or is it best to stop cold turkey? Any doctors tell you to taper?> > > > > > Post AVS - Surgery> > > This is more selfish than anything, but I have a golf trip scheduled for September 19th. I am wondering if my AVS is conclusive and I am a candidate for surgery, if it hurts anything to postpone surgery after AVS. My plan would be to go back on the Spiro after AVS and have surgery in December if I am a candidate. Any

disadvantages to this? Any danger in this? Any advantages to doing surgery right away?> > > > > > Risk of Stroke/Heart Attack> > > Before I was diagnosed I had crazy, out of control, anxiety! The Spiro and exercise has eliminated this to the point that my former psychiatrist (now friend) told me I didn't need to visit her anymore after on the Spiro for 3 weeks. My attitude changed and anxiety subsided. Well, I have to admit that I am having some anxiety issues with being off the meds for 4 weeks. I am wondering if my BP will sky rocket. I am wondering if I am going to have a heart attack while running, lifting, or playing basketball. > > > > > > Thank you in advance for anyone who has experience dealing with the weeks leading up to AVS. This site is so valuable.> > > > > > > > > 35yr old male. Diagnosed 04/2011. 50mg Spiro (25 morning/25 night).

> > > > > >> >>

[Guest guest]

I feel lucky that I had my AVS done at The University of Michigan Hospital, where they do not require you to go off any medications, I don't think I'd have made it 4-6 weeks without spiro. I know most sources say you should be off MCB's before AVS but they've done a lot of them, their IR who does them is great and it didn't seem to interfere with my results. Potassium was wnl before and after but again, I took my spiro the morning of the procedure. I got there at 6AM and was out the door by noon, it was little more than an inconvenience for me. I had some mild conscious sedation and was awake and watched the procedure on the fluoro screen. There was slight pressure when the trocar was inserted but I felt no pain during the

procedure. I had no pain afterwards and when I took the bandaid off my groin the next day I could barely see the insertion site and I went back to work 24 hours later. The only thing I remember them telling me was watch for bleeding, no lifting over 10 pounds for 3 days and tylenol if I needed anything for pain.

Good luck,

a

From: crzylnebkr <smort@...>hyperaldosteronism Sent: Monday, July 23, 2012 3:07 PMSubject: Re: Pre-AVS advice/Tips? What is the 4 weeks without Spiro like?Thank you Dr. G. I did go to them and they answered most questions. However, my endo also advised me to try to talk/communicate with other people that have had the procedure done. The advise

I received from my team so far:ExerciseAerobic = good and encouragedanaerobic = not advised with no meds. So no weight lifting, sprinting, basket ball, etc. in his opinion. This is many precautionary he admitted. PotassiumIt was advised that I continue to eat a high K diet. He told me not to go too overboard though. Just continue to do the V8, spinach salad, etc. Basically DASH.Blood PressureI have been advised to track my BP each day and call/e-mail him if I get over 160-170/100-90. He might go with a calcium channel blocker if necessary.I am looking for experiences of others who have had an AVS. My doctor did give me guidance. However, he is an athlete with very low BP and no PA. He has never had an AVS. What does the 4 weeks feel like with no meds? Did you go too low on k? Did you have to go to the ER? Any heart

problems? Strokes, Heart Attacks? Did you have to start other BP meds? Did you go back on Spiro after the AVS/before surgery? Did anyone lift weights when not on the meds?Thanks,> > > I just got a call to schedule my AVS

procedure on August 23rd. This 4 1/2 weeks from now. Before everyone lets me know about the 6 weeks off spiro, the Wash U/ protocol is to wait 4 weeks. My endo at Mayo did not seem to think this would be a problem and told me that many publications state 4 week waiting period.> > > > Anyway, I am wondering what are the rules or tips to live by during the weeks leading up to the AVS? I am wondering about the following:> > > > Exercise> > I love to exercise and run 3-4 times per week. I lift weights off and on and play basketball after work throughout the work week. Is exercise off limits without meds? Do I need to take it easy? What have others been told? What have your experiences been like?> > > > Potassium> > I kind of DASH (eat enough servings of veg and fruit), but tend to eat more red meat, poultry, and nuts than prescribed by the DASH serving sizes/daily

requirements. Do I need to have my potassium checked frequently? Do I need to up my intake of my tasty Low Sodium V8?> > > > Spiro> > Do you have to taper Spiro like a beta blocker? Or is it best to stop cold turkey? Any doctors tell you to taper?> > > > Post AVS - Surgery> > This is more selfish than anything, but I have a golf trip scheduled for September 19th. I am wondering if my AVS is conclusive and I am a candidate for surgery, if it hurts anything to postpone surgery after AVS. My plan would be to go back on the Spiro after AVS and have surgery in December if I am a candidate. Any disadvantages to this? Any danger in this? Any advantages to doing surgery right away?> > > > Risk of Stroke/Heart Attack> > Before I was diagnosed I had crazy, out of control, anxiety! The Spiro and exercise has eliminated this to the point that my former psychiatrist (now

friend) told me I didn't need to visit her anymore after on the Spiro for 3 weeks. My attitude changed and anxiety subsided. Well, I have to admit that I am having some anxiety issues with being off the meds for 4 weeks. I am wondering if my BP will sky rocket. I am wondering if I am going to have a heart attack while running, lifting, or playing basketball. > > > > Thank you in advance for anyone who has experience dealing with the weeks leading up to AVS. This site is so valuable.> > > > > > 35yr old male. Diagnosed 04/2011. 50mg Spiro (25 morning/25 night). > > > >>------------------------------------

[Guest guest]

You do not want to know how he feels. You want to see the numbers.When they did overnight dex did they also test aldo? Quick way to Dx GRA.CE Grim MDOn Jul 24, 2012, at 10:50 AM, crzylnebkr wrote:

I had this tested at Mayo and then at Wash U. I have had overnight dex test, 24 hour urine, etc. to test for cushings. I mentioned this to my doctor after your posts a while back. He let me know about the tests they have done so far and why he didn't feel I had cushings.

> > >

> > > I just got a call to schedule my AVS procedure on August 23rd. This 4 1/2 weeks from now. Before everyone lets me know about the 6 weeks off spiro, the Wash U/ protocol is to wait 4 weeks. My endo at Mayo did not seem to think this would be a problem and told me that many publications state 4 week waiting period.

> > >

> > > Anyway, I am wondering what are the rules or tips to live by during the weeks leading up to the AVS? I am wondering about the following:

> > >

> > > Exercise

> > > I love to exercise and run 3-4 times per week. I lift weights off and on and play basketball after work throughout the work week. Is exercise off limits without meds? Do I need to take it easy? What have others been told? What have your experiences been like?

> > >

> > > Potassium

> > > I kind of DASH (eat enough servings of veg and fruit), but tend to eat more red meat, poultry, and nuts than prescribed by the DASH serving sizes/daily requirements. Do I need to have my potassium checked frequently? Do I need to up my intake of my tasty Low Sodium V8?

> > >

> > > Spiro

> > > Do you have to taper Spiro like a beta blocker? Or is it best to stop cold turkey? Any doctors tell you to taper?

> > >

> > > Post AVS - Surgery

> > > This is more selfish than anything, but I have a golf trip scheduled for September 19th. I am wondering if my AVS is conclusive and I am a candidate for surgery, if it hurts anything to postpone surgery after AVS. My plan would be to go back on the Spiro after AVS and have surgery in December if I am a candidate. Any disadvantages to this? Any danger in this? Any advantages to doing surgery right away?

> > >

> > > Risk of Stroke/Heart Attack

> > > Before I was diagnosed I had crazy, out of control, anxiety! The Spiro and exercise has eliminated this to the point that my former psychiatrist (now friend) told me I didn't need to visit her anymore after on the Spiro for 3 weeks. My attitude changed and anxiety subsided. Well, I have to admit that I am having some anxiety issues with being off the meds for 4 weeks. I am wondering if my BP will sky rocket. I am wondering if I am going to have a heart attack while running, lifting, or playing basketball.

> > >

> > > Thank you in advance for anyone who has experience dealing with the weeks leading up to AVS. This site is so valuable.

> > >

> > >

> > > 35yr old male. Diagnosed 04/2011. 50mg Spiro (25 morning/25 night).

> > >

> >

>