Guest guest Posted July 10, 2008 Report Share Posted July 10, 2008 Sounds like GERD to me. Try some mylanta. on the excellent BP without spiro recall that you must have both salt and aldo to = high blood pressure. Keep up the good work. The swelling suggests the aldo blocker is wearing off. On Jul 10, 2008, at 11:51 AM, Valarie wrote: > > Another interesting thing I've noted is that I break out in sweats > when I > bend over a little, like to empty the dishwasher or get something > out of a > low drawer. I can also bring on the sweats by doing isometric > abdominal > exercises. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2008 Report Share Posted July 11, 2008 > > I have been doing some experimenting. > > I went off spiro on June 24. Five days off, I started taking RX K, 20 mEq + > 1,170 mg K in LS V-8. A couple of days later, I started swelling awfully so > started 12.5 mg HCTZ. Except for the swelling (3 - 4 lbs), I was feeling > really well through last weekend - best I'd felt in a long time. > > I went off potassium for three full days. I am on a heart monitor that goes > off every time I have irregular heartbeats. Beginning yesterday, I started > feeling the " gripping, " brittle feeling again, and my tremor and shakes came > back. Last night my monitor started going off. Each time it goes off, I > have to call and transmit the data. So, I took a K pill, drank low sodium > V-8. and took an Ativan. Within an hour, the brittle feeling started > lifting and I felt better. The monitor hasn't gone off since. > > This shows me that all those months of " gripping " were, in reality, > incidents of irregular heart beats. I was calling it " anxiety " or " feeling > brittle. " I often wondered to myself how long my heart could stand the > stress. All those months, it was low potassium coupled with too much > sodium, causing the " gripping. " I'm now holding my sodium to 850 mg/d but > even then, I'm needing K pills + V-8. > > Another interesting thing I've noted is that I break out in sweats when I > bend over a little, like to empty the dishwasher or get something out of a > low drawer. I can also bring on the sweats by doing isometric abdominal > exercises. > > I've been off spiro just over two weeks. My BP has gone from average > 121/79/83 to 129/83/81. > > Val Dear Val, Good for you for conducting your own experimenting.I have also had irregular heart beats for about 40 years. It would come and go for seemingly no reason. About 10 years ago, it became so unconfortable and kept me from sleeping that my doctor put me on a beta blocker and I now have no palpitations at all (currently on 100mg toprol xl a day). 2 years ago, prior to my adrenalectomy, my cardiologists said my heart showed no disease but there was clearly adosterone present in my heart but should resolve with surgery. He also wants me to stay on a beta blocker to protect my heart.Thankfully, I stayed on the bb as I'm now in trouble with aldosterone again. By keeping careful records like you're doing, I just discovered that elavil lowers my bp. My doctors are in agreement with me (I thought they would say I'm crazy). I've also found that 2 new meds that I've tried raised my bp (lyrica and prednisone). I'm glad I found out but it seems that I'm more and more limited to options for treatment. I hope you get some help from you're new doctors and looking forward to hearing what happens. Good Luck Jan > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2008 Report Share Posted July 11, 2008 Jan: can you give us more details on your return of aldosteronism after surgery. Did you have AVS prior to surgery? May your pressure be low!  CE Grim MS, MD High Blood Pressure Consulting Clinical Professor of Medicine Medical College of Wisconsin Board certified in Internal Med, Geriatrics and Hypertension. Interests: The effect of recent evolutionary forces on high blood pressure in human populations. On Jul 11, 2008, at 8:59 PM, ipscalifornia wrote: > > > > > I have been doing some experimenting. > > > > I went off spiro on June 24. Five days off, I started taking RX K, > 20 mEq + > > 1,170 mg K in LS V-8. A couple of days later, I started swelling > awfully so > > started 12.5 mg HCTZ. Except for the swelling (3 - 4 lbs), I was > feeling > > really well through last weekend - best I'd felt in a long time. > > > > I went off potassium for three full days. I am on a heart monitor > that goes > > off every time I have irregular heartbeats. Beginning yesterday, I > started > > feeling the " gripping, " brittle feeling again, and my tremor and > shakes came > > back. Last night my monitor started going off. Each time it goes > off, I > > have to call and transmit the data. So, I took a K pill, drank low > sodium > > V-8. and took an Ativan. Within an hour, the brittle feeling > started > > lifting and I felt better. The monitor hasn't gone off since. > > > > This shows me that all those months of " gripping " were, in reality, > > incidents of irregular heart beats. I was calling it " anxiety " > or " feeling > > brittle. " I often wondered to myself how long my heart could stand > the > > stress. All those months, it was low potassium coupled with too > much > > sodium, causing the " gripping. " I'm now holding my sodium to 850 > mg/d but > > even then, I'm needing K pills + V-8. > > > > Another interesting thing I've noted is that I break out in sweats > when I > > bend over a little, like to empty the dishwasher or get something > out of a > > low drawer. I can also bring on the sweats by doing isometric > abdominal > > exercises. > > > > I've been off spiro just over two weeks. My BP has gone from > average > > 121/79/83 to 129/83/81. > > > > Val > > Dear Val, > > Good for you for conducting your own experimenting.I have also had > irregular heart beats for about 40 years. It would come and go for > seemingly no reason. About 10 years ago, it became so unconfortable > and kept me from sleeping that my doctor put me on a beta blocker and > I now have no palpitations at all (currently on 100mg toprol xl a > day). 2 years ago, prior to my adrenalectomy, my cardiologists said > my heart showed no disease but there was clearly adosterone present > in my heart but should resolve with surgery. He also wants me to > stay on a beta blocker to protect my heart.Thankfully, I stayed on > the bb as I'm now in trouble with aldosterone again. > > By keeping careful records like you're doing, I just discovered that > elavil lowers my bp. My doctors are in agreement with me (I thought > they would say I'm crazy). I've also found that 2 new meds that I've > tried raised my bp (lyrica and prednisone). I'm glad I found out but > it seems that I'm more and more limited to options for treatment. > > I hope you get some help from you're new doctors and looking forward > to hearing what happens. > > Good Luck > Jan > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2008 Report Share Posted July 14, 2008 I can assure you that every Dr who has graduated since Dr Conn's first article has heard of Conn's syndrome and seen many cases but has not recognized them. CE Grim MD On Jul 14, 2008, at 3:40 PM, ipscalifornia wrote: > > > > > The record-keeping has been invaluable for me. It's the only way > I've been > > able to isolate some cause and effect. > > > > My doc wants me to take metoprolol when I get to 140/??. I really > hate > > taking it. I get breathless and can't do much, but will take it at > some > > point. > > > > I take Elavil, too. I cry less when on it. > > > > I hate to hear you're having aldo problems again. Refresh me, did > you have > > AVS? > > Val > > Dear Val, > > There are other bbs that you could try. I tried atenalol for awhile > but it made me too sleepy. Toprol seems to work well for me. My doc > just advised my to take the tropol at night instead of morning as he > thought it might be adding to the nausea problem I have in the > morning. So far it seems to be working. > > I did not have AVS before surgery because it was clear that I had do > something right away.Bp was 195-200 over 90/95 and nothing was > getting it down. K was only 3.4 with maximum does of potassium and > sodium dropped to 114. There was a visable tumor on the left gland > (1.7) and my ARR was high plus salt loaded urine collection showed > clearly that there was a problem (don't remember the numbers). I had > tried many bp meds and combinations and none of them helped. Spiro > helped some but even at a low dose,it only helped if I added maxide > and that pushed my k up to 5.8. It also made me nauseous and dizzy > all day every day. Reading other's experience here, my condition > seemed to go downhill very fast but who knows how long I had it(at > least 20 years as that's when I had sudden onset hpt). Surgery was 2 > years ago in August. > > I felt pretty good for about 10 months but I was back on maxide about > 2 months after surgery and the neuropathy came back gradually and now > I'm really struggling to save the other gland. My biggest complaint > is pain and every time I try another drug it raises my bp. I am now > up to 100mg of elavil. Trying to change to another drug is how I > discovered that elavil lowers my bp. > > My husband is very medical and through research, he found a top > endocrinologist at UCSF that we are trying to get an appointment with. > > I believe that the problem for people with this dread disease is that > the medical profession does not fully understand the effects of this > condition. If you read through the posts here you can see the > similarity of problems we all have depending on how advanced we are. > This denies us the treatment we need in order to have some quality of > life. I could go on and on with the wrong diagnosis and meds I have > recieved over the years. This is so complicated and doctors have so > little experience with this that the only hope is a doctor who has > seem some advanced cases. > > Sorry to go on but I'm getting worn out by all of this and I need to > just vent once in awhile. > > Thanks to all here who tell their experiences and help to make us > feel we are not alone. > > Jan > > > > > From: hyperaldosteronism > > [mailto:hyperaldosteronism ] On Behalf Of > ipscalifornia > > > > Dear Val, > > > > Good for you for conducting your own experimenting.I have also had > > irregular heart beats for about 40 years. It would come and go for > > seemingly no reason. About 10 years ago, it became so unconfortable > > and kept me from sleeping that my doctor put me on a beta blocker > and > > I now have no palpitations at all (currently on 100mg toprol xl a > > day). 2 years ago, prior to my adrenalectomy, my cardiologists said > > my heart showed no disease but there was clearly adosterone present > > in my heart but should resolve with surgery. He also wants me to > > stay on a beta blocker to protect my heart.Thankfully, I stayed on > > the bb as I'm now in trouble with aldosterone again. > > > > By keeping careful records like you're doing, I just discovered > that > > elavil lowers my bp. My doctors are in agreement with me (I thought > > they would say I'm crazy). I've also found that 2 new meds that > I've > > tried raised my bp (lyrica and prednisone). I'm glad I found out > but > > it seems that I'm more and more limited to options for treatment. > > > > I hope you get some help from you're new doctors and looking > forward > > to hearing what happens. > > > > Good Luck > > Jan > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2008 Report Share Posted September 19, 2008 Friends, I cannot tell you what good care I've gotten at National Jewish Hospital in Denver. It is a respiratory treatment hospital and research center. People with respiratory problems come from all over the world. Granted, they don't treat PA, but Dr. Grim referred me to a cardiologist there. He did several tests in June and I saw him on Wednesday. My heart is in pretty good shape considering all I've gone through. It is normal sized. It tends to pump a bit too hard but Dr. Weinberger didn't think that was a problem. It was doing that back in 1999 when I first had an echo. I have mild bicuspid and mitral valve dysfunction, probably from fen-phen. Perhaps those valves will last a while longer. My BP is always elevated when I'm there. This time, I took my machine to check and it was only off by one point on the systolic and a few more on the diastolic. I think had I re-checked, the diastolic would have come down. It always gets high when I am nervous. Dr. Weinberger sent me to see a pulmonologist for a consultation on carcinoid. He thinks there is hardly any chance but expressed his desire to not miss anything. I saw that doc yesterday. That doc, Dr. Downey, is going to get me an ultra thin slice CT with contrast. They have one of only a few ultra-thin slice CT machines in the U.S. Something about 128 slices or something??? Both of these doctors have treated me with respect and kindness. That is in stark contrast with my Mayo Clinic experience. They have both expressed a need to leave no stones unturned. That, again, is in start contrast with my Mayo Clinic experience. When I tried to talk about what could be causing my continued, severe sweats and other symptoms, the Mayo doctor barked that I had come for an aldosterone consultation and that is all he would talk about, and that there are no symptoms of hyperaldosteronism. Val Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2008 Report Share Posted September 19, 2008 Hi Val: I've been thinking of going public with all our experiences with doctors online. I think if we post any kind of experience, good or bad will help future patients of any physician. I recently was searching for a good ophtholmologist and found the info online not very helpful even when I paid to get a doctor's background info, the info was not helpful at all. I think the more we place out comments and grade the doctors, the better care patients will receive, so for example, if I type a doctor's name on google, I should be able to see anything that people posted about him/her online. Farah On Fri, Sep 19, 2008 at 8:37 AM, Valarie <val@...> wrote: > Friends, I cannot tell you what good care I've gotten at National Jewish > Hospital in Denver. It is a respiratory treatment hospital and research > center. People with respiratory problems come from all over the world. > Granted, they don't treat PA, but Dr. Grim referred me to a cardiologist > there. He did several tests in June and I saw him on Wednesday. My heart > is in pretty good shape considering all I've gone through. It is normal > sized. It tends to pump a bit too hard but Dr. Weinberger didn't think that > was a problem. It was doing that back in 1999 when I first had an echo. I > have mild bicuspid and mitral valve dysfunction, probably from fen-phen. > Perhaps those valves will last a while longer. My BP is always elevated > when I'm there. This time, I took my machine to check and it was only off > by one point on the systolic and a few more on the diastolic. I think had I > re-checked, the diastolic would have come down. It always gets high when I > am nervous. > > Dr. Weinberger sent me to see a pulmonologist for a consultation on > carcinoid. He thinks there is hardly any chance but expressed his desire to > not miss anything. I saw that doc yesterday. That doc, Dr. Downey, is > going to get me an ultra thin slice CT with contrast. They have one of only > a few ultra-thin slice CT machines in the U.S. Something about 128 slices > or something??? > > Both of these doctors have treated me with respect and kindness. That is in > stark contrast with my Mayo Clinic experience. They have both expressed a > need to leave no stones unturned. That, again, is in start contrast with my > Mayo Clinic experience. When I tried to talk about what could be causing my > continued, severe sweats and other symptoms, the Mayo doctor barked that I > had come for an aldosterone consultation and that is all he would talk > about, and that there are no symptoms of hyperaldosteronism. > > Val > > Quote Link to comment Share on other sites More sharing options...
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