I would suggest to any with this to see a endrologist. She is the only one I found to have the most up to date knowledge.

I was diagnosed with Bartter Syndrome in my early 30's. At the time I was put on 8,000 mg of potassium and 20 mg of hydroclorithiazide. I swelled like a suckling PIG. I was switched to Amiloride but this still didn't stablize me. I went through a divorce and stopped taking medications when I was 36. Soon after I had 2 children when I was 38 and 39. When I was 41 I got so tired of feeling my heart thunking in my carotid artery and feeling my heart skip beats I went back to the doctor for my kidney. My potassium was 2.8. I was put on 20 mg of spirolactin and presently 4-20mg of Potassium daily. Even most resently I was sent to specialist and was informed he believes I have Gittelmans and not Bartters.
I am doing a 24 hour urine sample and will post more later.

wow, have i been through the ringer? The doctors have mistaken my symptoms with anxiety and sever hyperventialtion....was in the hospital with a 2.7 potassium level...and now that I'm on supplements and STILL having hypokalemic episodes, they are starting to may attention now. I get cardiac arrithymias, I can't breathe, my BP goes down and my eyes dialate..it's getting to be unbearable but my mayo doctor is FINALLY going to try to put me on a medicine amiloide..??? don't know it that's how it's spelled. But it has been a LONG seven months...and it's been very hard emotionally, mentally and physically but hopefully it will come to an end and I will be on the right treatment plan...hang in there all...

Amiloride makes you urinate and robs more Potassium from you. I take Spirolactone (removes excess fluids, but stimulates the kidneys to maintain potassium), I take magnesium and potassium. I am fortunate to get my care (as a Veteran) and the VA Hospital. I have had a long road to still building up my potassium. I have maintained anywhere between a 2.8 to 3.2 (that is chronic low potassium). Try to eat fruits and vegetables with high potassium content and stay away from licorice, beer (in strict moderation-you will pee out your potassium). If I had more time to write I would. More later. Susan

People with GS have magnesium problems too. That's not hte difference in the two the difference is in the age the syndrome shows up and the severity of the two. Barter's effects you development because of problems with your levels at such a young age. But some people with GS do have less problems with mag but there are problems with mag that is why regulating K can be so hard

Hi I am new to this site but decided to join as I feel a little alone on the Gittelmans side of things as no one I know has really ever heard of it.

I was diagnosed about 2years ago, it was a big shock to the system as I have always been very active and into fitness but this has slowed me down completely.

Per day I take 10 Magnesium Glycerphosphate tablets, 4 Amiloride and 6 Sando 'K' and have bloods every 3 months now and Hospital check up every 6 months.

My symptons are aches, pains, blurred vision, heart palputations, hot head, dizzy spells, but as many of you will probably agree it could be a lot worse so in a way i count myself lucky.

Katy

to NSHC27: Dear lord, she sounds in pretty bad shape. I only have to take spirolactone, potassium, and magnesium(used to do amiloride but it stopped working). I don't think you can do all that much. How much potassium is she taking? I take about nine 20 meq tablets a day and I feel fine, though..I still get the leg cramps. I'm guessing it only gets worse or if one is lucky they can stabilize their levels eventually. The only specialists I've meet were Nephrologists. Mine knows a lot about the condition and has helped me a great deal.

It's just bad luck that we have it and it's not like we can do much to cure it besides taking the supplements.

To tray: It took a year for them to diagnose me too. >< Ridiculous. I was like a zombie for one year. Broke down at work too. The mental instability of the disorder is not good for the working world nor school.I missed a lot of school thanks to this stupid thing too. Had to stop all activity in pe. I really miss playing badminton.

to rcamsa: Wow, seizures? That's intense. I never knew that low magnesium could do that to someone. I just knew that without potassium the body would paralyze itself. How is your potassium? I think it's pretty odd to see more magnesium problems. I guess the disorder is different for everyone. The leg cramps, I was told, are due to low potassium. The head problems, like any intense migraines, tend to be magnesium related. At least this is what I experience. My mag levels are fine, yet I still get intense leg problems to the point where my right leg is completely unusable. It's probably low potassium. Have you seen a Nephrologist? The problems lie within the kidneys.

to ibaum2250: I fully agree about the support group idea. I like talking to others who know the pains of everyday life with this uncomfortable disorder.

to ElizabethSue: They diagnosed you at age 30 with Barters? That doesn't sound correct. Kids have barters, not adults. Then again they didn't know too much about it till just recently. Oh sigh for having something so rare that barely any doctors know what it is. My doctors were convinced I was bulimic for a few months.

to Divastar: Ick. I hate the symptoms. I don't get blurred vision or anything but I used to fall asleep randomly due to exhaustion. Twice I fell asleep at the wheel. And the leg problems will never ever stop for me. It hurts so much too. I'm thinking of getting a cane so I can actually walk to my classes next year. I just found out that I get serious heart pain and have trouble breathing if I even miss two doses of meds out of my 3 a day and do not eat all day. I can never miss a meal or I go lethargic and have to be dragged around.

I see my doctors constantly. x.x; Just had my prescription upped and new meds. This has not helped me with being a hypochondriac. I've become one somewhat because if anything is wrong I freak out now.

I even got an ultrasound of my kidneys done too. I guess it's better to be safe then sorry?

I wish everyone the best of luck. I'm gonna head to bed now or I'll pass out at the keyboard.

Hello,
I do agree with whoever said it on the last page; we do need a support group for Gitelman's Syndrome. I think we are all kind of lost and confused when we first get diagnosed and then it's an up and down rollercoaster ride for most of us after the diagnosis.

I was diagnosed with Gitelman's when I was 18 and it was the summer before my first semester of college. I am now 21 and the past few years have been absolutely horrible with my disease. I started by only taking a few 20 klor con and amiloride off the back. My doses increased more and more and now I am up to 12 20klor con a day, 2 amiloride, 1 spironlactone, 3 400mag ox (I know my spelling is off, I don't think it matters). Which each increase of klor-con dosages I experienced weight gain. I've gained 30 lbs since being diagnosed and I have tried everything from eating healthy to working out and the weight will not come off. Even when I do eat total crap I only experience water weight gain not regular weight gain. I feel like it directly correlates with all the medication. For two and a half years I went to the doctors to get my blood tested EVERY week. When the blood levels would come back low, I'd have to go sit in the ER for 8 hours and receive infusions of potassium and magnesium and I don't know if any of you have had IV's of these fluids but potassium burns your veins it's absolutely terrible. My diet usually doesn't have anything to do with my levels but I do crave salt more than the average person. I think people with Gitelman's are always flirting with the line of not enough salt or too much salt. My levels used to be in the 2.9 range but now I've been spacing my visits out every two weeks to get my blood taken and my levels have increased to normal levels. We believe with age, my body has gotten used to making up for the low levels and taking the pills into my system and not dumping them out... finally.

My brother also has Gitelman's and when we found out that he did, I was tested. Turns out my experience has been ten times worse than his. He is 24 and is taking only 2 klor con and 1 amiloride a day and his levels are perfectly normal. My nephorologist said they don't know anyone in their 40's with Gitelman's but from this forum I think that's a lie. Someone really should make a support group. Maybe we can all share our stories and find coinciding trends?

I just realized I misspelled the disorder. heh, I feel silly.

Thanks you to all who have shared your story. I was finally able to figure out what it is that I have. I was miss-diagnosed 26yrs ago and know able to get the proper treatment and hopefully begin feeling better soon.
Good Luck to all. It's defiantly been a long journey for me.

Aw! I'm glad we could help. 26 years? That's crazy! I hope you'll feel better with the right meds. :3 Good luck!

Well where do I begin? It's awesome to know that were not alone! I have been dealing with Gitelman's for over 13 years now. I have been receiving magnesium infusions on a daily basis since I was 20 am now 34. I have had at least 10 ports implanted into my chest to have direct access to my vein for continous infusions. I have also contracted multiple blood infections due to ports they have placed and removed in my chest. With all this said I still can not get my magnesium levels to normal.I also take K-Dur 40 MEQ's a day. I currently am in the hospital for this very reason.

Dear lord! That's horrible. Can't you just take the magnesium oxide pills? You are still in the hospital? Jeeze. That sucks. I haven't even been to one yet. I say yet because I'm sure I'll have to go there some day.

My nephrologist was against infusions because he says they don't work. He said I'd always have to be in the hospital to receive them as well. Taking the supplement pills and spironolactone( or amiloride ) has made it possible for me to live a normal life. Are you taking or have you taken magnesium supplements and spironolactone before? I would ask a kidney doctor about them.

Yes, I have taken mag oxide pills up to at least 24 pills a day with no response. I have not yet tried the ahmiloride I will be sure to discuss that with my nephrologist, but then again who knows maybe I have and I just don't remember. Yes your right in regards to being stuck in the hospital for infusions. The way I administer my medication now is thru home infusions which are done on a daily basis at home thru a shunt that is implanted in my chest cuz as we all know mag and potassium HURT! If anyone out there has the same problem please let me know and this is also hereditary by the way!