McBlonde Posted February 12, 2012 Report Share Posted February 12, 2012 The last 8 hours I have been a fabulous moment of reprieve which I am sure won't last much longer. It's the first I have had in almost a year. Anyway.... I am wondering about the mechanisms of this syndrome. Causes dehydration or rather the a problem with reabsorpbsion of electrolytes and minerals..... sorta on the line of recent discussion.....http://barttersite.org/what-is-gitelmans-syndrome/ Quote Link to comment Share on other sites More sharing options...
issie Posted February 12, 2012 Report Share Posted February 12, 2012 Very interesting site and something I will have to take time and read some of the info. on. Thanks for posting this. Could be very relevant.Issie Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 12, 2012 Author Report Share Posted February 12, 2012 It is Issie! For the second day in a row, my mind is absolutely clear (I know it won't last) but while it's clear, I hope to research the above more. Until y'all posted the areas you were researching, I had always thought of the issue in terms of damage (malfunction) to the hypothalmus sending (or not sending) out messages to the receptors...... Quote Link to comment Share on other sites More sharing options...
issie Posted February 13, 2012 Report Share Posted February 13, 2012 It just shows that there can be many malfunctions going on - and the kidney may be one of them - not to mention adrenal function. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 13, 2012 Author Report Share Posted February 13, 2012 I'm of the opinion still that mine is one of hypothalmic problems..... Either the mesaage not being sent every time or at all. BTW, now on my 3rd day.. after 9 months of no relief. Crazy! It feels like a saline high. I know it won't last, but boy is it great! Quote Link to comment Share on other sites More sharing options...
issie Posted February 13, 2012 Report Share Posted February 13, 2012 Feeling better???? What have you done different? Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 13, 2012 Author Report Share Posted February 13, 2012 Feeling better???? What have you done different?YES! Can you believe it? From in my bed to dancing around last night to Whitney. It's crazy. I haven't felt like this since I got an IV after a syncope episode and that was last April! I have been making a list of what happened the day before.... I'll type it up and post it. Quote Link to comment Share on other sites More sharing options...
issie Posted February 13, 2012 Report Share Posted February 13, 2012 Yayyyyyy, so happy for you. Type it up for sure - let us know what you've done different.I'm doing better to, but -not dancing yet.Issie Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 13, 2012 Author Report Share Posted February 13, 2012 It started Thursday... I felt really bad that day so I had 2 large glasses of V8 putting an extra tsp of salt in eachAll that V8 caused me to have diarrheaSo I drank many bottles of GatoradeI took an Epson salt bathFriday afternoon I was in a deep sleep when a loud noise woke me with a startI had continual palpatations and tachycardiaI finally dug out a bottle of my old 5 mg bystollicSaturday when I woke up I felt greatFeels like high vs lowI can take DEEP breaths which I had only been able to do before if I was at the ocean in high humidityThat heaviness on my chest was completely goneHave adrenaline surges that causes peeing and hot flashes but I check my HR and it's normalThe heat covers me in a thin layer of sweateuphoria teary eyesCLEAR thoughtLike a saline highThe only medicines I am on is Levoxyl and Florinef in the AM and a baby dose of Trazadone at nightI am very realistic. I know that any day I will wake up and it will be gone, but oh my goodness how good it feels to feel "normal" if only for a few days!Crazy story isn't it? It's never happened before like this since 2003...I have no idea why. Quote Link to comment Share on other sites More sharing options...
issie Posted February 13, 2012 Report Share Posted February 13, 2012 Maybe it was the Epsom salt bath. That's magnesium and is very relaxing and helps with asthma symptoms too. Just take a bath every few days in it and see if it continues to help.So happy - hope it keeps going. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 13, 2012 Author Report Share Posted February 13, 2012 Thanks Issie! It wasn't the baths, because I've done those before. Maybe it was all of it added together got my ______________ up to the right levels, Quote Link to comment Share on other sites More sharing options...
issie Posted February 13, 2012 Report Share Posted February 13, 2012 Well, now you have the receipe and you can repeat it - if you need to. Let's hope this is something that will last. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 13, 2012 Author Report Share Posted February 13, 2012 Well, now you have the receipe and you can repeat it - if you need to. Let's hope this is something that will last.Thanks so much! I know I will wake up back where I was any day now, but it was nice to remember "normal". Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 14, 2012 Report Share Posted February 14, 2012 Barrter syndrome was recently mentioned in an article about POTS where similarities were mentioned. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 14, 2012 Author Report Share Posted February 14, 2012 Barrter syndrome was recently mentioned in an article about POTS where similarities were mentioned.Really? Huh... I didn't see it, but it was probably when I was under the brain cloud! Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 14, 2012 Author Report Share Posted February 14, 2012 Can't take that deep breath any more. Hope I am not going to wake up tomorrow with all my symptoms back. Yikes! Quote Link to comment Share on other sites More sharing options...
issie Posted February 14, 2012 Report Share Posted February 14, 2012 Okay, repeat your receipe and see if it pulls you back up. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 15, 2012 Author Report Share Posted February 15, 2012 It seems to have been PRETZELS that almost pulled me back! Additives. Wheat? I don't know. The previous nights I had had rice, beans, potato soup, and grilled vegetables with my big glasses of V8 & salt. Quote Link to comment Share on other sites More sharing options...
issie Posted February 15, 2012 Report Share Posted February 15, 2012 I forsee a glutten free diet in your future. Glad you figured that out. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 15, 2012 Author Report Share Posted February 15, 2012 well, I don't know if I figured it out, but it's the only thing that was different and I can breath deep again. I wonder if it's wheat or glutten or just some additive? I had potato soup out of the can that didn't bother me a bit. So hard to know anything.I was thinking earlier, when a remission or flare for that matter hits, we go through our minds and think what did I do.... I back track over all the exact steps and yet sometimes, the answers is "I really didn't do anything. It just happen. Again. For the upteenth time.How are YOU feeling? Quote Link to comment Share on other sites More sharing options...
issie Posted February 15, 2012 Report Share Posted February 15, 2012 I'm actually doing well. The new stuff I'm taking I would say has given me about an 80% improvement. I hope it continues. I will post about it soon. Thanks for asking. Quote Link to comment Share on other sites More sharing options...
Wendy C. Posted February 15, 2012 Report Share Posted February 15, 2012 Thanks for the great website, McBlonde! I read all of the articles related to magnesium and they were helpful. I have been experimenting with reducing my magnesium supplementation this week and while it did eliminate my diarrhea, it caused a noticeable increase in my PVC's and tachycardia. I'll be mentioning this to my Cardiologist on Friday. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 28, 2012 Author Report Share Posted February 28, 2012 If I wasn't so undisciplined, I would have updated this thread each day to document! Still moving s l o w l y along. Trying to hold back the Type A personality is hard! Every day I walk a tiny bit farther. The sunshine is GREAT. My husband started out driving me around the neighborhood (One of my big issues is symptoms happening while sitting) I am up to riding for 36 minutes before POW... I feel the blood pooling in my stomach and the nausea starting. If I don't lie back immediately, I get those AWFUL orthostatic headaches with nausea. I can't push through it....and keep riding ( i just throw up and almost pass out if I push it). My plan is to keep adding a few minutes a day in walking and riding. Question.... I am scared to eat anything other than what I talked about above... Even restricted ... I feel very full fast and sorta bloated, but then oddly enough... hungry again a few hours later... and at that point, I don't know what to eat. Any suggestions? Quote Link to comment Share on other sites More sharing options...
McBlonde Posted June 17, 2012 Author Report Share Posted June 17, 2012 So now it's June 17, 4 months later. The "hit by a truck" fatigue that kept me in bed has not come back. I continue to walk every day....from the above 1 lap around the living room to 29 minutes outside every day. BUT, that's it. I still cannot sit up in even a recliner for more than 1 and 1/2 hours... One day I sat for 2 hours and had a relapse the next day. I still can't concentrate so I can't read!!! That's awful considering how isolating POTS is. I am really, really down. This is as good as it gets, I guess. I couldn't even go see my 80 year old dad today for Father's Day. I feel very, very sad and I can't snap out of it, no matter how hard I try. I don't understand the 2 side effects I had from Midodrine (couldn't read at all when on it & then position vertigo started)... The Midodrine worked perfectly other than those 2 side effects that make it impossible. I don't know what is "Like" Midodrine, but without the side effects. I just don't know what to do any more. Quote Link to comment Share on other sites More sharing options...
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