Jenn202 Posted March 28, 2005 Report Share Posted March 28, 2005 hi Guys - I have a new question this week. I was wondering how many of you have trouble keeping your sodium levels up?I have chronic low sodium...and my body is always in a balancing act trying to keep me regulated..... I have to take at least 8 gram salt tabs a day plus heavily salt food, and even then sometimes it will not work...I can feel my sodium dropping bc I get very pale, weak, shaky etc...usually chicken broth and HEAVY salt will reverse some of this.I now have a respiratory virus and feel horrible....having trouble with the hydration and cannot keep salts in check.... I usually need some bags of IV fluid when I get sick b/c my body just cannot get properly evened out itself...I'm just wondering if I am the only one who gets like this, or gets it to this extent...I know many of you have said you have the flu.... Are you able to hydrate on your own....? Thank again!! Quote Link to comment Share on other sites More sharing options...
yogini Posted March 28, 2005 Report Share Posted March 28, 2005 You may want to talk to your dr about trying florinef or licorice root. Both help the body retain sodium. Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted March 28, 2005 Report Share Posted March 28, 2005 Jenn, You are not alone. The things that helped me are using sea salt,and having IV's at home when I am getting bad. Also when they changed my meds to florinef that was for me almost magical, I still have problems but am not at the er everyweek. Blessings for rest. Miriam Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted March 28, 2005 Author Report Share Posted March 28, 2005 Thanks guys Yes I have tried florinef but cannot tolerate it.....and I run a high BP many times, so Licorice root is not the best candidate.....I wish there was some more I could do ...I hate to have to rely on IV forvever.... Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted March 28, 2005 Report Share Posted March 28, 2005 True , however inderal can help as it permeates the brain. Remember this is the beginning, Fuids, salt and compression hose. It helped me during the time I was always in the hospital getting IV's, to think of it as a puzzle, and arent we quite the puzzle, where square pegs can fit into round holes. I wish we could get together ar a Potspa!!!! Miriam Quote Link to comment Share on other sites More sharing options...
Gena Posted March 28, 2005 Report Share Posted March 28, 2005 Just curious if you've talked to a kidney doctor about your sodium retention problems? I have low level sodium, too (although it's still within the bottom of the normal range) even when I'm consuming a LOT of sea salt and salty foods. I am planning to get my kidneys checked out just to see if they're functioning okay, since they have a lot to do with your body's sodium/potassium balance. It might be worth looking into? Something else to consider; excessive urination can also cause you to lose sodium.Gena Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted March 28, 2005 Report Share Posted March 28, 2005 This is a common problem for POTS patients. When my POTS was very severe I had episodes of low sodium. The only thing that helped was IV fluid and taking A LOT of salt. Hopefully this is not a permanent problem for you--most likely it won't be and you will recover to better function eventually. I also had high bp along with the low sodium, btw. What meds are you on?Katherine Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted March 28, 2005 Author Report Share Posted March 28, 2005 Hi Gena and Miriam - Actually my ANS Dr wanted to put me on inderal. I didnt know it had a different effect than normal beta blockers... I react so sensitive to meds that I asked to be on Lopressor b/c I had taken that years ago, and my Dr said it was comprable to Inderal?Anyway, I havent tried it yet..I wonder if I should try the inderal? Is there any article that explains this drug and how it us used for dysautonomia? Thanks so much!!Gena - Yes I had an extensive kidney work up when I was hospitalized last year....Thank God my kidneys do the job needed......I would definetly see a Nephrologist if you have not already to rule in or out that part.And yes I have days of excessive urination...large quanitites at a time...and then some days where I do not urinate more than a "normal" person.Its so crazy! I think I have stopped trying to figure it out every day, but I feel like I am some science project sometimes! LOL Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted March 28, 2005 Author Report Share Posted March 28, 2005 Hi Katherine - Just saw your post. ITs so strange that I have high BP with the low salt......I hope it is not a permanent problem too... Right now I take lots of salt and electrolite drinks...I take a low dose xanax that is my lifesaver every day....and thats about it.Although I did just post my ANS Dr wanted me to try Inderal...Did your low sodium just get better? WHere there any meds that helped?Thank you Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted March 28, 2005 Report Share Posted March 28, 2005 Actually the inderal I was hospitalized when thewy started me on it. It too a week or so to adjust, The reason they believe this works is that it actually goes through your brain. My nephrologist, who diagnosed me tried midrodine first, but no luck. Ask your friendly family pharmacist for info if you are concerned. I too do not tolerate many medications well, but try, try and try again!!!!!Miriam Quote Link to comment Share on other sites More sharing options...
Ernie Posted March 28, 2005 Report Share Posted March 28, 2005 I don't know if my sodium is low but when it is time to take my salt tab I start shaking.Ernie Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted March 29, 2005 Report Share Posted March 29, 2005 Hi JennYes I also thought it was very odd to have high bp and low sodium at the same time. I also used to produce a lot of urine like you describe. The times that my sodium was low I definitely felt really weak, weird and horrible--almost like I wasn't even in my own body.What helped me eventually, I believe, was a combination of TIME (months and months), a low dose SSRI, a low dose beta blocker, lots of fluids and salt, and SLOWLY stepped up exercise. I also used Xanax to get me through the really rough patches, particuarly when I started the SSRI, which made many symptoms even worse for several weeks. My specialist really pushed me to exercise. He said, I know it seems like you can't do it and feels awful, but start slowly and move slowly and little by little you will see improvements. He particularly recommended floor exercises and any exercise that would strengthen my calves. I never had PT. Eventually I was walking every day and still do and I think walking, for me, really helps in regulating my ANS.I still have minor symptoms, but I am again medication free (at least for now--I have weaned off my SSRI--this is my second attempt to do so and I have been off it for almost 2 months. I still take a beta blocker once in awhile, but I haven't taken one for at least two months either). I do keep the fluids and salt going, and I keep trying to improve my exercise tolerance.I haven't had my electolyte levels measured at any point for the past year and a half, but I haven't had any symptoms bad enough to warrant a work-up.I hope you find some things that help improve your symptoms soon. Take Care,Katherine Quote Link to comment Share on other sites More sharing options...
Radha Posted March 29, 2005 Report Share Posted March 29, 2005 many of you mention IV fluids, i know that drinking so much salt water still doesnt feel like it gives relief, and want to try the IV, but heard the tube thats inserted can get infected easily, and thats what worries me, about getting the fluids at home, does this happen often and are there other things to worry about when having an IV at home? thanksradha Quote Link to comment Share on other sites More sharing options...
funnyfrog Posted March 29, 2005 Report Share Posted March 29, 2005 Hi Jenn - I am on a low dose of florinef - It took me over 3 months in the beginning when I was diagnosed to get used to this drug and my dosage is not a big one because my body cannot handle anything more than 1/2 of a 0.1 tablet in the a.m. - Anything that the doctors tried over that was too much for me, gave me a heavy headed,yet dizzy light headed feeling at the same time. I am also on a beta blocker called pindolol which is not as commonly used as lopressor is, but the cardiologist tried lopressor on me and it brought my heart rate down too low and my bp too low - the pindolol is a beta blocker that works differently in your body than lopressor and since it is hard for me to tolerate most meds, this one seeems to work for me, but in a very small dose though too. I am on midodrine too,5 mg,2x a day - I don't know how much it really helps - my blood pressure on a good day now with all this medicine and salts I add to food is 100/70 and on a day when I am not great is about 80/50-Imagine what it would be without any help from the meds? I hope this info helped you. Have a good night! Beth Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted March 29, 2005 Report Share Posted March 29, 2005 I need to have potassium to retain the sodium as was mentioned. Recently I learned I had to add magnesium to retain the potassium! It may be that you need to add that too.take care, tearose Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted March 29, 2005 Author Report Share Posted March 29, 2005 Good Morning Beth, Tearose, Katherine , and Radha....Thanks for your input. It seems I have not tried many of the things you guys have mentioned..... I know the florinef was completely intolerable..I was on it for almost 4 weeks and each time I took it the whole room spun for hours on end....until the drug got out of my system..it never got better..this was with 1/4 of a pill......Katherine would you mind telling me what SSRI helped you the most with sodium retention?I excerise daily and have for years... It has helped me so much.....I have never lost muscle tone, and I think it has helped me get through the rough times so much easier.....Muscle tone is so important to maintain. I am so glad that you have found walking so beneficial! I know when I get done with my resistence training and stretching I feel improved as far as circulation, strength and overall sense of well being.I hope Mayo clinic or Dr Grubb will be able to direct me to some of these meds you guys have brought up.Radha - IV lines are always at risk for infection, but so is everything that is invasive to a certain extent. I have had more Iv lines in me than I can count and have never had one problem..... The people who are at risk for infection are the ones who do not take care of thier lines....... But its really not a probelm at all Tearose - I take lost of potassium and MAgnesium every day ...I add it to everything I drink, plus take supplements.... I guess my body has a hard time retaining it...espiecially when I have the episodes where I urinate large quanitites.... I feel me best when I have a little water bloating in me. GO figure! Thank you guys for all your help... ! I am defiently armed with new knowledge for my Dr visits!! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted March 29, 2005 Report Share Posted March 29, 2005 Jenn--the SSRI my doctor prescribed was Prozac. I took 20 mg/day. (I think I was given Prozac b/c it is one of the safer ones to use when breast-feeding. However, my daughter's pediatrician felt I should not use any SSRI while breastfeeding, so in desperation to get better, I weaned her.) I don't think it helped me retain sodium per se. I think what it did was help regulate my ANS, which in turn relieved the electrolyte-loss problem caused by blood pooling in my abdomen. This is my understanding of how it works. My doctor told me that about 50% of POTS patients see significant improvement with a low dose SSRI, so it is worth giving it a chance!Katherine Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted March 29, 2005 Author Report Share Posted March 29, 2005 Thank you again Katherine! My DR wanted to try me on Zoloft but I was nervous to take it b/c I had a horrible experience years ago with Prozac.... I kept passing out on it and was bedridden..so SSRI's are a bad memory for me, but maybe they might work differently now.It could of been back then I was not properly diagnosed..I had undiagnised/untreated Lyme Disease at that time also....Thanks for sharing what helped you. I;m so glad to hear that you are functional now even though you are weaned off of many of your meds...thats wonderful to hear and gives me some hope! Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted March 29, 2005 Report Share Posted March 29, 2005 Jenn, I take Zoloft. About the IV, I had someone a nurse come and give me the Iv at home, so I didn't need a fuse a port. This really helped until I was on meds that worked. All you need is a script from your doc. I would get 4 bags at a time., weekly it seemed for months. This might be a good alternative till you see the doc, plus the nurse will document whats happening. I live in pittsburgh suburb and havn't had problems. I also had this set up for my mother who lives in the middle of nowhere and the nurses were able to come start the IV see another patient and add another bag or stop it. Miriam Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted March 29, 2005 Author Report Share Posted March 29, 2005 hi Miriam - Yes I have at home IV..I go through an IV infusion company...its so nice to have them b/c I need to fluids when I get a bug, or my slats go too low....So much better than the ER or Hospital stay!I had a nephrologist last time I was in the hospital tell me I was harming myself by gettng so many IV's and that I didnt need any of this...I just had to stop drinking and stop taking so much salt ...!!!!!!My husband almost punched him....The sheer ignorance of these Dr's !Anyway, thank you for the info Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted March 29, 2005 Report Share Posted March 29, 2005 The irony is that I was diagnosed by a nephrologist, who gave me the script for the home IS's. Just know how your body feels and what it needs, the only was these can hurt is if you stop and your kidneys shut down. I had that happen 4x in 6 mos. last year. As long as you do the 24 hr. urine. And your sodiun is (DR.LOW 177) you are o..k. At least you know. I only knew when I woke up in a strange E.R.!!!!!!! Miriam Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted March 29, 2005 Author Report Share Posted March 29, 2005 Miriam - Do you mean to make sure my sodium is below 177? Having your kidneys shut down is very scary.... I am nervous this could happen... WHat shuld I look for?Sorry for so many questions today... I appreciate everyone's time in helping me! Quote Link to comment Share on other sites More sharing options...
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