I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Desert Dancer on April 20, 2012, 11:25:55 AM
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I don't know what's going on. My echocardiogram was normal but I've gotten to the point where I can barely function. Even with midodrine 3x a day to raise my blood pressure I'm still averaging 70s/40s, even after not dialyzing for three days. I have no strength at all and no stamina whatsoever. I'm dizzy all the time and things that used to take me an hour or two now take all day long because I have to rest every 15-20 minutes. I can't talk or chew for more than a minute or so before my throat seizes up. I'm nauseated all the time.
Nephrologist has ordered thyroid and adrenal function tests. Obviously I don't want them to be anything but normal, but it sure would be nice to have some answers and a possible path back to health. Keep your fingers crossed for me, please. :(
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That sounds just awful. I'm sorry things are this tough for you. Hang in there and keep pushing until someone gives you an answer. :grouphug;
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Everything that can be crossed is crossed for you, DD. Hope they get to the bottom of it soon.
*huggles*
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I am sorry this is going on. Have you had any med changes lately? Any tiny changes in anything? It is hard to even imagine you so weak -- you seem so strong and well, healthy isn't the right word, but in control. When will you have results of the tests? We'll be anxious to hear how they are.
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DD, this is really troubling news. Does anyone have a clue as to what might be causing this? Your bp is awfully low and certainly points to a problem. I hope you find some answers soon. :cuddle;
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oh i so know that feeling of just show me what it is!! You scare me and i hope that this will be solved NOW, today!! My prayers are with you.. :cuddle;
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Having chronic illness sucks! I know you must be scared half to death. It's awful having something going on and no answers. I will pray for you fervently. I hope you're feeling better soon. God Bless, Bill
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I'm sorry to hear about your low blood pressure. I would try drinking a tall Starbucks coffee. But that could be bad for you. Who knows? At least you'd get a taste of some good java. You might try moving around too. That works for me after a dialysis session, when I'm under 100, and have to get it up to get out of the kidney center. I will pray for your recovery. If I were you I would pray for recovery so you would be able to do something good for someone else. God loves a good heart (I hope). As the great poet, Dylan Thomas said, "Do not go gently into the night." Or something like that. I'll be rooting for you.
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I know how bad low BP can make you feel, and to be honest, with it that low, that may be the explanation for all thee symptoms that you are having. i know when mine is low, I can't really function, andmy muscles ache, particularly in my back, which I attribute to my muscles struggling to work with insufficient blood. I also get cramp around my neck muscles. could it be due to you taking off to much fluid because you have gained real weight? Just some thoughts.
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We all know how it feels when blood pressure drops too low, but to have 70/40 all the time--that sounds like a nightmare! I'm so sorry this happening to you. A heart problem could cause this or dehydration, but these are only guesses, and not helpful to you, I realize. I'll be praying for you, desert dancer.
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I clicked on this title and am shocked and dismayed to see that you are the original author, DD.
I am terribly worried right now. You are IHD's rock star of home hemo and dedication to proactive self-care, and this all sounds so debilitating and scary.
Could Amanda be right? Is there any way you need to adjust your dry weight up a notch? Also, are you limiting salt too much? I know barely enough about dialysis to even have the vocabulary for it, but I suffered from low blood pressure for quite a long while, and it seems that I require more salt than the average person. This sounds like a vasovagal event times 10, and the only thing that got me over the nausea and complete incapacitation of one of those was downing a packet of straight salt.
I wish I knew how to help. Let's hope your doctor solves this mystery and that the answer points to a clear and painless path to recovery.
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^
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:grouphug;
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Sounds like fluid is way off, poor girl, so sorry! :cuddle;
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So sad to read this DD....and will keep everything crossed that you will get some answers and of course some resolution really soon.
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I'm so sorry DD, just a suggestion, have you tried to drink Cup-a-soup in stead of any other drinks for a day? it has that stuff in that increases some peoples BP, and heart-rate. I used that when my BP floored, worked for me, but not for everybody.
Good luck, lots of strength, and get better soon.
love Cas
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Cassandra's idea is a good one. At our kidney center they give you chicken broth if you crash like that, and if more fluid doesn't help.
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DD, would you mind terribly if I posted the link to this thread over on Home Dialysis Central? Dr. Agar over there is an expert on dialysis, particularly home dialysis, and he might have some ideas. I know he can't diagnose you over the web and wouldn't even try, but maybe he had a patient like you at one time or another. I won't post the link until I have your permission to do so.
I hope you are feeling better today. I've been thinking about you all day and have been very concerned.
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Thanks for all your responses and concern. Sorry I haven't checked in sooner but I just haven't felt very well.
I am sorry this is going on. Have you had any med changes lately? Any tiny changes in anything?
This all started happening early in January. The only change at that time was my parathyroid surgery in December. Everything else is exactly the same.
Could Amanda be right? Is there any way you need to adjust your dry weight up a notch? Also, are you limiting salt too much?
Naturally the very first thing I thought to do was adjust my dry weight up. My weight has been 58 kilos the whole time so I adjusted it up to 60. Then 61. Then 62. Finally I just deliberately fluid overloaded myself up to 66 kilos AND didn't dialyze for four days so it would stay there AND stopped taking my atenolol; the highest my BP went was 90s/50s. The thing is, if I'd gained that much real weight - 17.6 pounds or more -I wouldn't be able to get into my jeans and it would be apparent to everyone. Even the neph finally admitted it wasn't my dry weight.
I asked about sodium modeling and she doesn't want to do that, though my chloride is low and they suggested I get more salt in my diet. The thing is, though, is that sodium would just make me retain fluid and I've already demonstrated that doesn't work.
Hi DD - I've experienced the same.
Seems as though they never found the cause for you, either. That is not encouraging. Did they ever do adrenal or thyroid function tests on you? My EKG and echocardiogram both came back normal and that's what they're doing now, plus blood cultures. I've looked up hypothyroid symptoms and it all seems to match up. Obviously I don't want a diagnosis like that but at least I could do something about it if it is.
I'm scared to death about this affecting my fistula or - like you - vision or something even worse. I'm the only one who seems to have any sense of urgency about this. I thought it had only been going on for two months but when I went back and looked at my old flowsheets it seems the last time my BP was normal was just after I had my parathyroids out - in December. It didn't start really affecting me until February. That's when I started logging symptoms.
I'm so sorry DD, just a suggestion, have you tried to drink Cup-a-soup in stead of any other drinks for a day?
No, but at this point I'll try anything. I love ramen noodles and they're something like 1000% sodium.
DD, would you mind terribly if I posted the link to this thread over on Home Dialysis Central?
MM, don't mind at all. Any thoughts or ideas are welcome at this point. My neph says she's seen this happen with some of her other patients but they were long-term patients. I've not even been on D for two years yet.
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Hi again! Apologies for being so dense, DD - it says right in your first post that you tried skipping dialysis treatments, so obviously extra fluid is not the answer. I feel like rather a dolt. :embarassed:
OK, so I did a bit of googling. It seems that there is not much agreement on this due to conflicting data, but there is evidence that some patients DO experience prolonged hypotension following parathyroidectomy, and one abstract I read stated that this started a few months after the initial operation (and the population was hemo patients). The suspicion is that it is down to hypocalcemia. Has your nephrologist checked your calcium levels? A few reports I read did mention "debilitating" hypotension, but as you've suggested, these were in longterm dialysis patients who then went on to have parathyroidectomies. This abstract suggests that there is an as-yet undetermined link between calcium and blood pressure: http://www.ncbi.nlm.nih.gov/pubmed/8651246 (http://www.ncbi.nlm.nih.gov/pubmed/8651246) Oh, and an antihypertensive (Nifedopine) seemed to be able to drop blood pressure much more effectively in post-parathyroidectomy patients, and again, low serum calcium seem to be behind this finding.
Additionally, I looked up natural remedies for hypotension. These answers came back repeatedly: epsom salt bath (I would not recommend this as hot baths tend to lower my pressure, and I think the same result could be had from ingesting sodium) or beetroot juice. I don't know if beets are safe on the renal diet, seem to think they are. If you think you can choke down beetroot juice, they suggest that people see improvement in 1-2 weeks of taking it twice daily.
Beyond that, I hope your nephrologist or Dr. Agar has something enlightening to offer. I'll be thinking of you and hope to hear that you are the improve soon.
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OK, I've posted this to Dr. Agar...
http://forums.homedialysis.org/threads/3368-Mysterious-hypotension?p=22291#post22291
Maybe he will have some ideas. This just strikes me as very odd. I'm sure there is an explanation, it's just a matter of discovering it.
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this makes me so sad.... :cuddle;
I haven't been able to post or read much here lately and it was hard to come back ans see this. DD, I hope you can get this sorted soon.
Aleta
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DD, Dr. Agar has posted a "hypothesis" for you over here...
http://forums.homedialysis.org/threads/3368-Mysterious-hypotension?p=22291
Have a read and see what you think. We all realize that it is unethical to diagnose a patient over the internet, sight unseen, so his answer is, while well thought out and very comprehensive, just one more possibility to consider and something to discuss with your neph.
I hope you get this sorted. PLEASE keep the reports coming in.
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I have just posted my own response to Dr. Agar and here it is:
Dr. Agar, I must thank you from the bottom of my heart for taking so much time out of your day to provide such a long and detailed response. I cannot tell you how much I appreciate it and I think you have some very lucky patients.
I just wanted to let you know that I copied the bulk of your response to my nephrologist via email this morning, less than three hours ago. Apparently you made quite the convincing argument because she is increasing the calcium in my bath from 2.5 to 3.0 as of today! It has always been 2.5 and I was only on calcium supplements for one week following my parathyroidectomy. So we will get to test the calcium-based theory.
A fervent thanks also to MooseMom for posting my dilemma here and getting the ball rolling. If this increase in calcium takes care of my hypotension both you and she will deserve all the credit for it.
Keep your fingers crossed! Thank you so much, MooseMom. I don't know why I never think to go over to homedialyis.org.
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This is a great example of helping your fellow kidney friend. :2thumbsup; Thanks Moosemom for going above and beyond. DD, maybe this will be the answer. At least they are looking into this instead of dismissing it. Good luck.
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DD, I'm really glad that your neph doesn't have such an inflated ego that she'd immediately pooh pooh any hypotheses offered by a fellow doctor. If upping your sodium bath doesn't do the trick, at least you know she has tried and has been openminded.
If this IS the answer, how long will it be before you will begin to see improvement in your bp? Any idea?
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DD, I'm really glad that your neph doesn't have such an inflated ego that she'd immediately pooh pooh any hypotheses offered by a fellow doctor. If upping your sodium bath doesn't do the trick, at least you know she has tried and has been openminded.
If this IS the answer, how long will it be before you will begin to see improvement in your bp? Any idea?
You can't imagine how relieved I was, too; I tried to word my email very carefully to make it plain I was NOT going behind her back and NOT actively trying to seek out a diagnosis from someone else.
If this is the answer, the question of how long is a very good one. I'm not sure anyone will have the answer to that, though. It seems the problem itself is rare and unstudied and the solution even less so. I guess I just have to hope for the best.
(PS: My nephrologist just called me. She thanked me for the new data and said if this is the answer it should take about a week to show results.)
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:thumbup; Good for your nephrologist. Love a doctor that listens. :2thumbsup;
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DD, I'm sorry this is happening to you, and I hope the calcium increase helps! Please keep us posted, and feel better soon.
Take care, saying a prayer for you.
Momo
:pray;
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Sorry that I have only just seen this. I am happy that something seems to be happening, and I look forward to great results, as you keep us posted. Been having some challenges of my own. :cuddle;
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this warms my heart ( sending much thanks to our MM) and i hope this will be your answer. God bless you and our angel friends who give of their time and hearts to help...
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Great MM, I really hope the calcium will do the trick DD,
lots of love Cas
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I'm so sorry to hear you are going through this DD. In my short time here, I've followed you because I love your down to earth, straight forward approach. I truly hope that the calcium resolves things and you can go back to dancing, and having mind blowing sex while connected. :)
Jen
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I hope the calcium change has a positive effect, DD. Thinking about you and sending positive wishes.
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^
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D D how are things going?
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Let us know if increase in calcum works.
Info I found gave low blood pressure as symptom of hypocalcemia. Most people who have had this surgery have to take calcium supp for rest of life.
If this is found to be your problem,I would want to know how she could have missed it.
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Well, it's been 10 days since I started the new bath and two weeks since I started the OTC calcium. It seems to be helping, if only marginally. Two weeks ago my BP bottomed out at 54/38 at a weight of 64.3. Now I can go down to 61.5 and still have a BP of about 85/52, sometimes getting up to the 90s/60s. It's not much, but it's a start. At least I'm feeling better and functionality is slowing starting to return.
I had my rounds with the doctor yesterday and she arrived in the middle of a conversation with the dietician. The dietician wasn't in the loop for this decision since I went straight to the doctor with my request for more calcium, and she's pretty unhappy about it. She's convinced I'm getting too much calcium and was really focused on the serum calcium. The doctor interjected and made it clear this was just an experiment since nothing else seemed to be working and it seemed worth a shot. That comment made me a bit nervous because I don't know how soon she'll want to see results before she changes my prescription back and personally I think it needs to be given a go for at least 3 months or so.
Patty, quite frankly I have a lazy doctor who's not the least bit proactive. Every change that's been made over the course of my treatment has come at my prompting. Her default is to 1) assume whatever's happening is not kidney-related, and thus not her problem, and 2) throw prescriptions at it to cover the symptoms when it's determined that (x) IS kidney-related. There's no one in my clinic who goes actively digging for answers; they're all quite passive. If I want root causes addressed it's up to me to do so. I do have to give her credit in that she's very good at listening to my suggestions and allowing me to take the lead in making my own decisions about things like medication changes. Looking back at the aftermath of the surgery, though, it's actually quite shocking (knowing what I know now) that I only supplemented with calcium for one week post-surgery. I didn't have any way of knowing that serum calcium didn't tell the whole story, but she or the dietician should have known.
Guess I'm just going to keep plugging along with my fingers crossed.
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DD,
I'm glad you're starting to feel better and that your BP is slightly better. They may be baby steps, but at least they're going in the right direction! :thumbup;
MJ
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Thinking about you, DD, and hoping your doing better.
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I'm having the same issues so would like DD to update a year later.
My bp is low going on Dialysis, and so they can only pull so much before they have to turn my UF off. My fluid is pooling in my FACE and I am miserable. I wish it was my legs. I finally got a Rx for Midodrine and will take 5mg tonight before dialysis. Reading on here it doesn't help much. It helps me to sit and think about dying and who will take care of Tia and how my boss will find out that I'm dead. I get so stressed out my Bp jumps to 115. But then I'll fall asleep and it drops. I can also go to the YMCA's Sauna and sweat some off but that is no way to live. I try and limit limit limit my fluid. I swear to God I don't know how I can gain fluid. I don't eat much because that makes me thirsty. So, I end up losing dry weight and I have no idea what my dry weight should be. The low BP plus full of fluid face is affecting my vision. Pressures in my eyes today at the eye Doc was 33 in each eye. He wants my pressures in my eyes in the teens before considering cateract surgery. Yes, I'm on eye drops.
I just need to get some fluid off. I'm thinking I have about 3kilos on and it is just hard for my heart to push that around.
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i ment to get in on the post about the "sauna" but just reading this i thought i'd add here..... Bo's dr would not let him do a sauna *due* to his low blood pressure. He said it would be dangerious. As i think of it now, i thought it was due to extreme heat, but dont know that that was it. Bos bp goes to 89/38/60's at times during D and though it worries me, his norm is only 90's/40's/70's so oddly enough, this is something (probably wrongly) that hasnt concerned me horrably. What is 'low' for you?
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I'm at a clinic so it scares them when I hit 70/... But I feel fine. They shut me off. I know the Sauna is probably dangerous but I need to lose fluid and I'm just plain desperate! I'm going to take a 5mg tablet of midodrine here in about 2 minutes. I will expect a miracle.
:waiting;
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Did you get your miracle? :pray;
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It's been 4 minutes.. I'm still waiting.
:rofl;
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Gosh, Rerun, this drug sounds a little scary. At what kind of clinic are you?
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Best of luck and I hope this puts an end to it. Low BP is nasty feeling, and scary too.
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Rerun, don't you do nocturnal? Calcium requirements for nocturnal are generally higher than they are for conventional dialysis.
1) You tend to lose more calcium the longer you dialyze
2) If you're no longer taking any binders then you've lost that as a source of calcium as well
I wish I could do a more in-depth update but I want to answer you as quickly as possible. Keep in mind that my calcium issues were precipitated by my parathyroidectomy but even so, being on nocturnal may have eventually put me in the same position anyway.
- I tried Midodrine. It did nothing whatsoever.
- I tried discontinuing my atenolol. That did nothing except cause tachycardia so I restarted it but at half the dose.
- I tried lowering the temperature on my machine. That didn't help either.
- I had my thyroid and adrenal glands checked. Nothing.
- I had a full body MRI with contrast to make sure I didn't have any tumors. I didn't.
- I finally said "Enough" when the doctor - who flat admitted she had no idea what was going on or what to do about it - referred me to a neurologist.
Though the doc and the dietician went into flying hyperventilating fits I insisted the calcium in my bath be raised. In-center conventional usually uses 2.5 CA and my goal was to raise that to the 3.5 CA bath. The doc started me off on the 3.0 bath in May 2012 and it did nothing. I finally flat out demanded it be raised again and she did so last August. Within a month things had begun to improve marginally, and within six months (this past January) my BP was just as normal as it gets.
I'm still on the 3.5 CA bath and have maintained normal BP ever since January. I am always just mildly hypercalcemic - around 10.5 or so - and there's a lot of pearl-clutching over that fact but they just have to get over it. The new doc - at the very first appointment - decided he wanted to re-invent the wheel in regard to the whole issue. He even called me at home after rounds, insisting it was my original disease that caused the low BP and that surely my other family members had low BP, too. I finally had to tell him "I AM NOT REVISITING THIS ISSUE AT THIS TIME. PERIOD".
It may not be the solution you need, but it surely was the answer for me. Just thought I'd throw that out there. If you want supporting documentation or anything else just PM me and let me know.
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Rerun I am having the same problem with the low BP at nocturnal dialysis. May be we need to go back to four hours for awhile drag those BPs back up.
I love my nocturnal though. I do not have fluid pooling but my dry weight is going up and up because of low BP crashes.
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The Midodrine did work for me. PTL !!! I took it at 5pm and got on the machine at 7pm. So in 2 hours I started to feel chills. I get the same reaction with sudephed. Chills like you are getting sick but I didn't feel sick... just felt weird. But, My BP was up about 20pts just enough that they could keep my UF on. All I needed was 300 an hour off. We have not been able to even get that off. But, thanks to my Tech Tyler.... we got it off. There was a time when I did drop down to the 50's and the nurse insisted on giving me 200 back. I was not awake for that or I would have had a fit.
So now I have to be really careful over the weekend. Maybe sit in my hot car of it is good weather. 8) I'm sure I have another 1500 extra on.
I will keep the calcium in mind DD, and ask my neph. This low BP sucks. Thank you for your response DD.
:cheer:
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Over the weekend I put on 2000. I swear I don't know where it came from. I did stand in the rain for a few minutes. Makes a person wonder. Anyway, I got on the machine and I was 104/70 so I waited an hour and it was just going down so I took a Midodrine and it just never worked. They got 1300 off is all. So now I'm really "careful" again. Makes me so mad. So I will look into raising my calcium. Give it a try.
I just had a bad day thinking about all this. Then I just have to hand it over to God. I'm worrying about things that I can't control.
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So sorry to hear this, Rerun. Low BP is a scary, scary thing and just as dangerous as high BP (and not nearly as well-researched). Mine averaged about 60/40 so I was pretty much couch-locked and that's no kind of life at all.
I hope you can find a solution.
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I have heard sometimes adding a bit of salt might help. Does anyone ever recommend this?
Jenna was still on BP meds and they forgot to take her off them as her blood pressure went down. Crazy.
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I had my nurse tell me to eat ramen noodles a few times a week, but that was because my sodium was low, not for the BP. I barely ever use salt at all anymore.
One of the things - actually the very first thing - I tried was raising my dry weight... oh gosh, it's normally around 58kg but I think I let it get all the way up to 68kg. It didn't do anything but make it hard to breathe and my legs felt like overstuffed sausages about to burst. Had no effect on my BP whatsoever.
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One day my friend Lori had low BP and her doctor said - eat some saltines! She was being so cautious about salt that she wasn't getting enough. Your body needs only 500 mg of sodium per day to function under normal circumstances. This amount is all you need to maintain the electrolyte balance that your body's cells require for normal functioning.