Guest guest Posted August 11, 2010 Report Share Posted August 11, 2010 Thanks for your story. The sweats are not common in PA. Other adrenal cause would be pheochromocytoma which I assume has been checked for.Most likely problem is that you have some autonomic instability due to GBS. This can be tested for.Has your K ever been low?Do you get cramps in your hands/feet where you hands "claw up" or toes draw up. If so when and for how long?How many times a night do you get up to pee?You will need a aldo/renin measurement to see what is going onPlease list all meds and doses and reasons for taking as well an any OTC stuff, herbal stuff, etc. CE Grim MDHello,I would like to thank the moderator for allowing me entry to your group. I have a feeling that finding this group is going to be one of the most important things I have ever done in my life. I do not have a dx of hyperaldosteronism as of today but I will be seeing my family doctor next week and will be requesting the correct tests to find out if I do indeed have the condition. I have struggled for so long with symptoms that I have never seen in a single other person, finding the information on Conn's the other day was so overwhelming, it was the first time that each and every symptom fit with what I have been trying to cope with since puberty.I am a 50yr old Guillain-Barre' Syndrome survivor. Ten years ago GBS left me paralyzed head-to-toe over a period of three days, trached and in the ICU for six weeks, in hospital for 6mos, and with a prognosis based on nerve conduction studies that I would never walk again. I was initially treated with IVIG and continued to worsen, it wasn't until I started receiving plasmapheresis that my condition stablized. Although I have had an incomplete recovery with extensive permanent neurological damage (demyelination,conduction blocks, and axonal damage), I consider myself extremely lucky in that I did walk again. It is always nice when you prove the neurologists wrong....The reason I bring up the Guillain-Barre' is that in the weeks leading up to my paralysis I was experiencing the same symptoms that I have going on as I write this. Horrible sweats, anxiety, nausea, weakness, etc. I had had periods of "the sweats" before, especially in the summer months, but eventually things would straighten out, this time it didn't and I continued to become sicker and sicker. I remember sitting in front of my doctor with the sweat streaming off of me and feeling like I was going out of my mind with her telling me that she had no idea what was going on, nothing showed in bloodwork etc. Two weeks after that appointment my feet went numb, eventually leading to complete paralysis and respiratory failure in a three day period. I didn't have any of the "typical" things happen prior to my GBS that are usually attributed to developing the illness. I did not have the flu, a vaccine, food poisoning, a cold, etc. Just this horrible period of feeling ill with "the sweats".The last few summers I have experienced the same "sweats" and illness but eventually things settle down once the temperature starts to cool off. Which means I can go weeks of feeling horrible. You try not to freak yourself out that the Guillain-Barre may strike again but it can be difficult to stay calm about it when the symptoms that you are experiencing once again are exactly like what happened before.Once I came across the Conn's syndrome information I dug out my blood pressure monitor and started taking my bp when the "sweats" hit. I have always had moderately high bp (usually 140/90 even at a healthy weight was the norm for me), and I never thought to check while I was in the middle of a sweating episode.Needless to say I was surprised by the readings. Sitting calm and cool prior to a sweat, my bp has been sitting about 120/80, with my heart rate sitting around 99. During a sweating episode my bp goes to 150/120 on average, with my heart rate going to about 109. A few years ago I discovered that if I ate protein I could stop the sweat in it's tracks...very quickly, like someone threw a switch I go from soaked in oily "sick" sweat, feeling weak, nauseous, anxious, etc. to being calm and cool, within literally minutes. So doing so while taking the bp readings showed that I go from the high number back to normal in about ten minutes.The other thing that helps is just the time of day. I'm not too bad before 8am and after 8pm-ish, but all bets are off in the time in between. Oh, the other thing that happens during a sweat episode is my change of mood. Dramatic, from being fine and calm to angry as hell/enraged with absolutely nothing having happened to provoke that feeling. Once the episode stops (usually by me eating protein) the mood switches back to calm again.Other symptoms that I have had throughout the years that I didn't connect to the sweating episodes are lower back cramps(just seizing right up on me), brutal charlie horses, and muscle weakness. I thought those were symptoms from my incomplete Guillain-Barre recovery but now I can fit the puzzle pieces together and see that it is associated to the sweating episodes.As a teenager I was sent to an endochronologist due to periods that came every ten days and lasted ten days, excess facial hair, and yes, sweating. I was put on the pill to try and correct the "slight hormonal inbalance" that showed in the tests that were done. When I was 25 I underwent surgical menopause when I had to undergo a complete hysterectomy with removal of both ovaries. I have been on estrogen replacement therapy ever since. At one point I remember being sent for an ultrasound in the late 80's and the tech telling me that she could only find one of my adrenal glands. When I underwent an ultrasound recently I asked the tech if she could find "both" of my adrenals and she said that you shouldn't be able to find them unless something was wrong and they were swollen for some reason. So perhaps that is another clue to me perhaps having Conn's. Anyways, I have babbled on more than enough for my first post, it's late, I'm exhausted from another day of drenching sweats, and I have a big night of constantly running to the bathroom ahead of me (post 9pm-ish is when my bladder "kicks in"....have to go during the day but do not produce much....evening a different story).Thank-you again for allowing me into your group, thank-you to anyone who has read my posting, and I do apologize for rambling....best wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2010 Report Share Posted August 12, 2010 Hello Dr. Grim, Thank-you for your quick reply to my post, I appreciate it very much. The only thing in regards to these horrible episodes of illness and "the sweats" is that prior to my contracting GBS I was having the same sweats and illness happening. So although autonomic instability could absolutely be causing some of the symptoms I am going through currently, I had the same symptoms prior to Guillain-Barre'. I did read info re: how low K can induce a state of paralysis that mimics GBS, but although I may have had low K going into the GBS, one would think that the low K would have been picked up early on with the multitude of tests that were given once I collapsed in the ER, and if I had low K it would have been corrected quickly. I have not been tested for a pheochrocytoma, but yes reading symptoms of that condition also resemble what I have going on. Currently in my "sweaty state" I am urinating about every two hours during the day (post-8am and pre-8pm-ish), the urge is insistent but I am not producing a lot despite keeping my fluid intake up. After about 8:30pm I am going about once an hour, or even every 45minutes (I'm exhausted) and the urine output is much greater. It hasn't done it for over a week now but there have been times when as strange as this sounds, my urine has the distinct strong smell of perm solution......strange yes. The only time I have noticed this happening before was if I had eaten licorice, but I have not been anywhere near licorice in months. The meds that I am on are : Estrogel (HRT due to bi-lateral salpingo oophorectomy w/complete hysterectomy in 1986), the dose is one or two "pumps" of the gel per day, which is applied directly to the skin. I am also on Ursodiol, one pill 3x per day, and Viokase 16 due to pancreatic insuffiency caused by chronic pancreatitis due to recurrent acute attacks. (I do not drink and have not had alcohol since 1997...I had a stone get stuck in my common bile duct and consequently had acute pancreatitis with sepsis five years ago). Other than that I take Gravol for nausea, and Benadryl for multiple allergies when needed. (the allergies are confirmed and my IgE is very high, also prior to my Guillain-Barre my ANA was very high, but it has been tested very recently again and is currently negative). My C-Reactive is double the high end of normal (but my ESR is normal), but this is being attributed to my autoimmune diseases, I also have Lichen Sclerosis that has been confirmed by multiple vulvar biopsies. One thing I am really curious about and so far no physician has been able to explain to me is how I can be in a full out sweat and feel horrible and then eat a small amount of either chicken, beef, or egg...the protein type foods and within minutes the sweating stops.....like someone waved a magic wand. My blood glucose is perfect and I do have the tools to monitor it at home, so I have taken it when I am sweating and having an episode and there is never anything but a normal reading. I do not take any herbal supplements, prior to Guillain-Barre' I had taken things such as Echinacea, but once you have been stomped by GBS you don't take anything that potentially can stir the immune system up and into an inappropriate reaction. I do take a B6/B12 supplement once a day, and a Calcium/Magnesium with D supplement. I am a water drinker and have never had a cup of coffee in my life. I do not know if my K has been low before, I do not remember ever being told that it was. When I went to the ER last week, tests were done once again and I presume if low K was happening then it would have showed??? I do not have cramps whereby my hands or feet claw or draw up. What I am experiencing at times is involuntary muscle movement, sometimes fasciculations, especially in the evening. I have always explained those away as being part of my post-GBS body. I have had am/pm Cortisol tests done, and I think every hormone has been tested except for aldosterone, with everything coming up fine. There is a definite rhythm to whatever is going on, I am much better before 8am, and much better after 8pm. Thank-you for taking the time to reply Dr. Grim, I will sign off for now, best wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2010 Report Share Posted August 13, 2010 Never assume anything when it comes to your health. Unless they told you they tested your K and you have seen the results. they may not have even tested it. If the lab person isn't trained to on the right way to draw blood to test K then the test can give a much higher reading of K then you really have. If you read many posting on here you will soon see that many are are misdiagnosed by many Dr. You may want to look around on this site http://www.columbia-lyme.org/ also this link. http://search.cumc.columbia.edu/search?q=cache:y0eNj7_O9NgJ:www.columbia-lyme.or\ g/research/docs/HumanHerpesVirus6revDiver2007.doc+Guillain-Barre & access=p & ou\ tput=xml_no_dtd & ie=UTF-8 & lr= & client=lymedisease & site=lymedisease & proxystylesheet\ =lymedisease & oe=UTF-8 > > > Hello Dr. Grim, > > Thank-you for your quick reply to my post, I appreciate it very much. > > The only thing in regards to these horrible episodes of illness and " the > sweats " is that prior to my contracting GBS I was having the same sweats > and illness happening. So although autonomic instability could > absolutely be causing some of the symptoms I am going through currently, > I had the same symptoms prior to Guillain-Barre'. > > I did read info re: how low K can induce a state of paralysis that > mimics GBS, but although I may have had low K going into the GBS, one > would think that the low K would have been picked up early on with the > multitude of tests that were given once I collapsed in the ER, and if I > had low K it would have been corrected quickly. > > I have not been tested for a pheochrocytoma, but yes reading symptoms of > that condition also resemble what I have going on. > > Currently in my " sweaty state " I am urinating about every two hours > during the day (post-8am and pre-8pm-ish), the urge is insistent but I > am not producing a lot despite keeping my fluid intake up. After about > 8:30pm I am going about once an hour, or even every 45minutes (I'm > exhausted) and the urine output is much greater. It hasn't done it for > over a week now but there have been times when as strange as this > sounds, my urine has the distinct strong smell of perm > solution......strange yes. The only time I have noticed this happening > before was if I had eaten licorice, but I have not been anywhere near > licorice in months. > > The meds that I am on are : Estrogel (HRT due to bi-lateral salpingo > oophorectomy w/complete hysterectomy in 1986), the dose is one or two > " pumps " of the gel per day, which is applied directly to the skin. I am > also on Ursodiol, one pill 3x per day, and Viokase 16 due to pancreatic > insuffiency caused by chronic pancreatitis due to recurrent acute > attacks. (I do not drink and have not had alcohol since 1997...I had a > stone get stuck in my common bile duct and consequently had acute > pancreatitis with sepsis five years ago). Other than that I take Gravol > for nausea, and Benadryl for multiple allergies when needed. (the > allergies are confirmed and my IgE is very high, also prior to my > Guillain-Barre my ANA was very high, but it has been tested very > recently again and is currently negative). My C-Reactive is double the > high end of normal (but my ESR is normal), but this is being attributed > to my autoimmune diseases, I also have Lichen Sclerosis that has been > confirmed by multiple vulvar biopsies. > > One thing I am really curious about and so far no physician has been > able to explain to me is how I can be in a full out sweat and feel > horrible and then eat a small amount of either chicken, beef, or > egg...the protein type foods and within minutes the sweating > stops.....like someone waved a magic wand. My blood glucose is perfect > and I do have the tools to monitor it at home, so I have taken it when I > am sweating and having an episode and there is never anything but a > normal reading. > > I do not take any herbal supplements, prior to Guillain-Barre' I had > taken things such as Echinacea, but once you have been stomped by GBS > you don't take anything that potentially can stir the immune system up > and into an inappropriate reaction. I do take a B6/B12 supplement > once a day, and a Calcium/Magnesium with D supplement. I am a water > drinker and have never had a cup of coffee in my life. > > I do not know if my K has been low before, I do not remember ever being > told that it was. When I went to the ER last week, tests were done once > again and I presume if low K was happening then it would have showed??? > > I do not have cramps whereby my hands or feet claw or draw up. What I > am experiencing at times is involuntary muscle movement, sometimes > fasciculations, especially in the evening. I have always explained > those away as being part of my post-GBS body. > > I have had am/pm Cortisol tests done, and I think every hormone has been > tested except for aldosterone, with everything coming up fine. There is > a definite rhythm to whatever is going on, I am much better before 8am, > and much better after 8pm. > > Thank-you for taking the time to reply Dr. Grim, I will sign off for > now, > > best wishes, > > > Quote Link to comment Share on other sites More sharing options...
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