# Starting salt treatment tomorrow.



## wanderingstar (Dec 1, 1999)

Hi guys. Long time no post. I am starting salt treatment tomorrow. Yay!







It's for low blood pressure and fast heart rate on standing (Neurally Mediated Postural Hypotension, or Orthostatic Intolerance). Finally. I've had symptoms for 18 months and am only just starting treatment, some 2 months after the latest testing. It's just common salt (Sodium Chloride) but in a tablet form to get the dosage right. I'm going to try it for 2 months and if that doesn't work my doctor said there is something else to try. She is hoping it will help with dizziness, black outs, loss of vision on standing, and also a little with the general fatigue (I have CFS). The thyroid is still being investigated - why does everything take so long?Does anyone else take salt loading therapy? What has your experience of it been?Best wishes to all of you, ------------------susanIBS D/C type & M.E/CFS


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## weener (Aug 15, 2000)

Hi Susan:It has been a long time, but I catch you over at the General Meeting Place.I have no experience with salt loading therapy. I'm the exact opposite - high blood pressure. I have it under control now with medication.I can relate to the waiting game. I'm going through the same thing right now. I guess they can't run all these tests at once. They do one, wait for the results and then try something else. Meanwhile, we've been feeling crappy for so long all we want is relief and answers. I hope the salt treatment will help. Please let us know.


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## moldie (Sep 25, 1999)

Hi susan,I have heard the theory that we may need more salt. I would wager that is not for everyone, especially if they have a tendency to retain too much fluid and may have a heart condition. I know that I feel thirsty all the time, no matter what I eat/drink, have dry skin and poor skin turgor, don't seem to retain fluids, feel weak and light-headed a lot. I can't say for sure if it is a lack of sodium in my system. I would think this should show up on a blood test. I know that even when I consume a lot to salty foods, it doesn't make too much difference in how I feel. Then, again, I don't do it in a scientificly measured fashion. I do believe that there is a blood-flow/volume problem with our condition. It has been written about, and is how I do feel. I don't know whether or not the salt issue will take care of that. Sometimes I feel as if it were a nerve-response issue, and that if the nerves were responding well to the messages and the messages my body were giving/getting were accurate, that it would take care of the blood flow issue. I also feel as if some of the minerals and other nutrients my body receives are not being utilized to their normal capacity. Does that make sense? Who knows?. At any rate, sincerely, I wish you good luck with the salt treatment. I hope it helps. Let us know how it turns out for you.M.


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## AZmom1 (Dec 6, 1999)

Susan,Where did you hear about this treatment? Are you being monitered by a Dr? I'm concerned because living in the desert we used to be told to take salt pills to help cope with the heat. It turns out that taking salt tablets can cause all sorts of problems with your kidneys. It is vital to drink lots of water with the pills to keep the kidneys flushed. Please be careful. AZ


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## wanderingstar (Dec 1, 1999)

Hi Az. I am under the care of two doctors - a rhematologist who deals with M.E patients, and my GP. The problem is that my kidneys are excreting too much salt. I was told not to drink extra water by both doctors, although I do take a whole glass with each sodium tablet. I am urinating less in volume which must be doing me some good (keeping up blood volume) although I'm not feeling any improvement in symptoms yet. Thanks for your concern







Hi weener! Sorry you are playing the waiting game too - it's no fun is it!Hi Moldie! You can find out if you have orthostatic intolerance by going to your doctor and asking about a 'tilt-table test' which measures your BP in different positions. You can find out about possible problems with blood volume by asking your doctor about a 24 hour sodium urinary analysis which will check how much sodium your kidneys are excreting into your urine. If they are excreting a lot, your doctor will probably put you on salt treatment. I was told to increase the amount of sodium in my diet whilst waiting for the salt tablets. But I think one would have to consume a vast amount of salt in one's food to get enough sodium - I'm taking 1200 mg per day, which I imagine if I just put on my food, would taste vile







------------------susanIBS D/C type & M.E/CFS[This message has been edited by wanderingstar (edited 10-18-2001).]


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## AZmom1 (Dec 6, 1999)

Susan,This is an interesting treatment. I hope it works for you.I just switched from Zoloft to Celexa, and my fibro symptoms came right back. So it's back to the Zoloft for me. I've had great success with the Zoloft for the fibro pain, although it did nothing for my IBS symptoms for which it was originally prescribed.AZ


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## wanderingstar (Dec 1, 1999)

Az, what sort of medications are Zoloft and Celexa? Are they different classifications? Does the Zoloft help with your sleep patterns or pain, or... ?best wishes, ------------------susanIBS D/C type & M.E/CFS


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## AZmom1 (Dec 6, 1999)

Susan,They are both SSRIs (Selective Serotonin Reuptake Inhibitors) which are actually antidepressants. At low dosages they can help with IBS, anxiety, fibro symptoms, and other IBS related illnesses. As I understand it they work on serotonin in the brain and gut. Unfortunately there is no way to tell which neurotransmitter in the gut it will affect, so it comes down to trial and error. These drugs are similar to Lotronex and Zelnorm, except for those two were developed specifically to work on certain neurotransmitters. With these SSRIs it comes down to trial and error.Celexa is a bit newer and is supposed to have fewer side effects, but it didn't for me. I'm back to the Zoloft tonight. I'd forgotten what it felt like to be in pain all day with every move I make, and at night being unable to sleep. How did I do it for so many years?Anyways, the Zoloft works great for me for my fibro, and I'll just have to deal with the side effects.AZ


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## wanderingstar (Dec 1, 1999)

Thanks for the info AZ. The SSRI side-effects can be quite unpleasant can't they. Glad you have found some relief from your aching though.







I wish my antidepressant (Remeron, I can't tolerate SSRIs) helped with CFS pain! ------------------susanIBS D/C type & M.E/CFS


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## AZmom1 (Dec 6, 1999)

Susan,The only side effect I have from the Zoloft is decrease in sex drive. I can live with it, but my husband...well you know. He takes offense that I'm not taking initiative. He just has to understand that it is nothing personal, just chemical, and that he'll just have to take charge. Just one day back on Zoloft and I can feel the difference already. It will probably be a couple of weeks til I'm pain-free again. How is your treatment going?AZ


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## weener (Aug 15, 2000)

I've been on zoloft for the past 7 yrs and have been thinking about changing over to Celexa. A friend changed over to Celexa and she says that it has done wonders for her. Now after reading AZ's post I'm not sure. One of the problems I have with the zoloft is digesting it. AZ does it ever feel like it gets stuck in the pit of your stomach? I agree that zoloft definitely decreases your sex drive. One of the side effects. The other anti-depressant that I thought about is called Serzone. Apparently it doesn't affect your sex drive as much. Unfortunately, I'm not pain free or ibs free, so I'm wondering if it is time to change.


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## wanderingstar (Dec 1, 1999)

Az, it's a shame about the side-effects. I suppose it's a balancing act of what's good for your fibro pain and the side effects. If it makes you feel better, then that's an important factor. Maybe you could ask your husband to take the Zoloft for a couple of weeks so he knows what it feels like and that it's nothing personal







Weener, have you tried other SSRIs, I wonder if they have less side-effects? ------------------susanIBS D/C type & M.E/CFS


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## Mio (Dec 19, 1999)

Hi,Iï¿½m not on any antidepressant now but I was a couple of years ago when I had a depression. I agree that it effects the sex drive. But when I switched from Celexa to Paxil it changed. Paxil actually increased my sex drive! Iï¿½m not sure if this was the medication itself or me getting out of my depression...but it made me and my husbandï¿½s life more fun again







Susan: Hope your salt treatment will help you!/Mio


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## weener (Aug 15, 2000)

Susan, I haven't tried other anti-depressants. In the spring of this year I approached my doctor about changing to celexa, but he said that I should stay on the zoloft and increase the dosage. I told him that I have a difficult time digesting the pills and taking 2 would be difficult. I'm wondering if after being on it so long that I'm becoming immune to it. I'll be seeing a new doctor in December and hopefully she will try something else.I just want to say big "HI" to Mio. Hope you are doing well. It was a hot, hot summer in Ontario.


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## atp (Jan 18, 2001)

That's an interesting theory about the salt. I grew up in a house where we pretty much didn't use salt, and prefer the taste of saltless pretzels and that sort of thing...so there really isn't a lot of salt in my diet. I usually have low BP too, and sometimes have problems with the dizziness when standing up, from the BP.I'll be interested to hear how the salt works out for you.As for the Zoloft, I noticed that irritating side effect at first, but it seemed like it got less troublesome with time...maybe I learned to overcome it? Or maybe I'm just not noticing it as much...


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## wanderingstar (Dec 1, 1999)

I thought I'd give you all a little update.I've been on the salt 2 weeks and just increased my dose. The past few days I have felt different. Happy for the first time in several months. Also, mentally 'brighter' - more alert. That must be due to increased blood flow to the brain, which in turn is due to increased blood volume from the salt and the water my body is now holding on to. I am passing a hell of a lot less urine - at least half as much, even though I am drinking slightly more - about 9 glasses of water and a few cups of tea. The low BP symptoms haven't eased yet, but there's time yet. This is really exciting. Something so simple can make me feel mentally better. I'm so happy. I hope it lasts.


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## AZmom1 (Dec 6, 1999)

Susan, how is the treatment going? Time for an update. BTW, you're doing a terrific job as moderator in this forum.AZ


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## Susan Purry (Nov 6, 2001)

Hi AZ. No more news since my last addition to this thread. But the great thing is that the improvement is being maintained - mood is far, far better, speech quite a lot better some of the time, and still not weeing as much ! LOL I'm at a constant dose now for another month. Thanks for the comments about moderating. You're very kind.


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## Nina M (Feb 10, 2001)

Wanderingstar, ask your doctor if she/he can get a complete test of your amino acid levels. Most CFS/FM/ME people have a low abundance of amino acids. They are generally deficient in minerals, magnesium, sodium etc., and particularly whole body potassium. Have a look at the following site, www.bioscreen.com.au and then click on 'testing info'then under the list of tests click on 'urine test'. You will come up with an unidentified patients amino acid profile and info on what it is supposed to indicate. E.g. if 'lysine' is above 12% check for neurally mediated hypotension, (your problem) etc., etc. One can also get amino acid supplementation to address the imbalances. Either a biochemist to make them up for you, or maybe your doctor can arrange it. If neither of these is possible most good health food stores stock or can get in for you individual amino acid supplements and you can do your own mix. Start very small, a 1/4 tsp at a time and gradually build up to maybe 1 tsp a day. It should help you enormously, you just have to remember to take it slow.


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## Guest (Dec 3, 2001)

Hi,Have any of you tried alterantive methods at all? I've been reading this forum for a couple of months and all I read are stories about prescription drugs, and when one doesn't work you are perscribed another. What about getting to the root of the problems? There has to be a safer way.The internet has so much information.God luckBT


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## snoopy (Jun 24, 1999)

Susan,I have very low blood pressure (90/60) and am tired and dizzy most of the time. I can't seem to get my doctor to push for a proper diagnosis, so I am curious if doctors in the US are different than doctors in Canada?! Are your salt tablets only available through your doctor? Any suggestions on how I can push this thing? I feel weak upon awakening, after eating, when going from standing to seated position, after exercise-you name it! My head is in a constant fog it seems. Many thanks for any help you can give me!Jane


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## Susan Purry (Nov 6, 2001)

Oh Jane, I'm so sorry you're feeling so awful from such a low blood pressure. Have you specifically talked to your doctor about your generally low BP, and also BP which drops when you change your posture?Do you not have a diagnosis of the problem because the picture isn't clear and there are complicating factors?To answer your questions, and to clarify something, I am in the UK. My salt (sodium) tablets are on prescription from my GP, authorised by my rheumatologist. I tried increasing the salt in my diet last year whilst waiting (oh, how I waited!) for a diagnosis and proper treatment, but it didn't help. At the moment I am taking 1200mg of slow-release sodium hydrochloride twice a day. The tablets are coated and are swallowed whole. They are not the dissolvable ones. Can you imagine trying to eat this much as part of your diet! LOL I certainly can't. But, the dose really depends on the individual. It is not something you should try on your own, and I only gave you my dose to give you an idea of just how much salt it is I take!. I really believe you need to press your doctor for help with your blood pressure. It is something that *may* be easily treated, and you may find quite an improvement in your symptoms - BP symptoms and your mental and physical fatigue. It is clear it is giving you problems. The condition has a few names depending on what country you're in and what term the doctor prefers. It is known as 'Orthostatic Intolerance', 'Postural Orthostatic Tachycardia Syndrome', but I know it as , 'Neurally Mediated Postural Hypotension'! It is properly diagnosed by doing a *24 hour urinary sodium analysis* and a *tilt-table test*.The urine test is when you collect all your urine over a 24 hour period from the *second* time you empty your bladder in the morning. It is tested for the amount of sodium it contains (salt). If you have a lot of sodium in your urine it means your body isn't holding on to it. This affects the amount of liquid you hold onto, which affects blood volume and blood pressure. I have always felt that everything I drink goes 'straight through me' - that whatever I drink gets excreted as urine and doesn't help with maintaining blood volume. Since starting salt therapy, I urinate about 50% less now, whilst drinking the same amount - possibly more - than usual. It must be doing me some good!I did the 24 hour urinary sodium test. I was found to have a higher than normal amount of salt in my urine and so am on salt (sodium) replacement therapy. At the moment it is just plain sodium. I may switch it for fludrocortisone which is sometimes used instead. The tilt-table test I haven't done because I felt too ill to withstand it. You lie on a table, and your BP is measured on lying down and standing up - over a period of time - and this may result in your fainting. My rheumatologist did a crude form of this test - he measured my BP on lying down, then got me to stand up over a period of a couple of minutes and measured the BP. By the end of it I was close to fainting!Here are some links for you: http://www.healthcyclopedia.com/postural_o...a_syndrome.html This particular page on the about site relates to POTS and CFS: http://www.nymc.edu/fhp/centers/syncope/POTS.htm This is from the National Dysautonomia Research Foundation: http://ndrf.org/orthostat.htm Happy reading!I really hope you can get some help with this problem. I had to wait 18 months, but finally I am getting some relief. Some people believe that this problem is the cause of CFS. I don't think it is the cause, but it can be a contributing factor which may worsen symptoms. Best wishes,


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## Susan Purry (Nov 6, 2001)

Bev (and others), I have started a new thread to answer your question.


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