Question on Cardiomyopathy

[Lisa33167]

I've read so much about cardiomyopathy causes and risk factors that it's scary.

I have to have 6,000 - 10,000 mg of sodium daily due to neurocardiogenic syncope & orthostatic intolerance (NCS & OI - autonomic nervous system problems)  plus I take midodrine to raise my bp on top of bisoprolol for heart, along with lexapro for ANS.

how likely is it that the salt loading and bp raising meds will make me go farther into cardiomyopathy? anyone had this happen?

Before you ask, I already asked my dr - she said it CAN and probably likely; yeah I figured that out myself and no medical degree lol  

I go back to my EP in Dec for a checkup so I'm going to ask him also.

[grendslori]

High levels of sodium cause water retention and that in turn causes the heart and kidneys to work harder which can cause a cardiomyopathy to worsen. The type of cardiomyopathy also plays into the picture (Dilated Cardiomyopathy, Hypertrophic Cardiomyopathy, Restrictive Cardiomyopathy or Alcoholic Cardiomyopathy) Sodium is important, but IMO it shouldn't be taken to such high levels to make a Cardiomyopathy worse.  

[kenkeith]

Salt also robs calcium from the body and attacks the mucous lining of our gastrointestinal tract, thus affecting the system's ability to absorb nutrients from our food over time.  It doesn't seem wise to increase your sodium intake to raise your blood pressure as the possible injury from the excessive sodium certainly out weighs any possible benefits.

The American Heart Association limits sodium intake to 2200-2300 milligrams per day.

[Lisa33167]

Thanks :)  that's some of my concerns, especially since I've just been dx and trying to get all my treatments in order.

For the treatment of Dysautonomia - autonomic nervous system problems one of the treatments is salt loading :(  NCS and OI  are devastating and mine are getting worse, so the cardiologist is a bit strict with keeping up those levels.

I've never even used a salt shaker other than special occasions, so it's a huge shock to my system, I'm trying to weight the pros/cons of both conditions and treatments.

My cardiac cath said I had no plaque, or anything wrong with my arteries and I want to keep it that way...but I'm wondering if that's even possible.

[Lisa33167]

[weight] is supposed to be weigh the pros/cons

no one else has CM NCS or OI together?

I would love some input from someone who has gone through this :)  and if you have a solution

[grendslori]

My daughter had severe Hypertrophic Cardiomyopathy and NCS along with kidney isuues. During her Tilt Table Test she went into shock. Dehydration was also a real problem and weighing the sodium issues wasn't easy. Too much sodium and she went into diastolic heart failure/systolic heart failure. I guess you caould say we went through this.

[Lisa33167]

Thanks grendslori

yes, very similar and I've had kidney issues for the past 5 years and never dx with anything even through tons of testing

I had a horrible HUTT also and when I passed out had no palpable pulse and bp.

what did you do for your daughter or what did she do with the sodium issue?  Did her CM get worse if she kept the uptake?

I get a sick stomach every time I use salt and I've upped my foods with salt alot, but I still can't function some days or I pass out and don't realize it

There's no easy answers to this problem is there?  

[kenkeith]

QUOTE: "[weight] is supposed to be weigh the pros/cons".
What is that supposed to mean?  Are you confused because I didn't type weight?

Anyway why don't you get the opinion of the experts?.  If you and your doctor do not realize the significance of excessive sodium intake on the system, and if your doctor doesn't abide with the AHA guidelines, what do expect to hear from this forum?, You raise an interesting question and it would be interesting to hear from an expert?  I suggest you ask a professional on their forum.

[Lisa33167]

[QUOTE]
by Lisa33167, Nov 03, 2009 06:11PM
(notice my post? that's where my typo was - the second one I put up top)
[QUOTE]

[QUOTE]
"[weight] is supposed to be weigh the pros/cons".
What is that supposed to mean?  Are you confused because I didn't type weight
[QUOTE]

NOT at all, I was correcting MY typo...that's all; please dont read anything into it; didn't see any typos in yours :P

Are you familiar with dyautonomia? Autonomic Nervous Dysfunction? NCS or OI? CM? Do you suffer from any of these conditions? Have any sage advice as a patient who is living and dealing with any of this?

I wanted experience from real live patients; who have actually lived with these symptoms and choices and what happened and how they dealt with those choices & issues

Isn't that what a community; forum or support group is for? to ask questions, seek advice and help others who have ACTUALLY experienced things that you have?

I have an opinion from 2 doctors as I stated before; opinions to what MAY or MAY NOT happen... If I wanted medical advice, I would have put it in the doctor forum or just simply waited until Dec for an appt with my EP.

[QUOTE:
Before you ask, I already asked my dr - she said it CAN and probably likely; yeah I figured that out myself and no medical degree lol

I go back to my EP in Dec for a checkup so I'm going to ask him also.
QUOTE]

[Lisa33167]

The AHA also suggests a HIGH SALT DIET - for syncope (NCS) & hypotension (OI) patients, but they don't give totals...or that I've found yet.

[quote] To help prevent syncope, people should be on a high-salt diet and drink plenty of fluids to avoid dehydration and maintain blood volume [quote]

[Lisa33167]

Another thing I'll bring up to my EP in Dec is this from Merck:

[quote]  Increasing Na intake may expand intravascular volume and lessen symptoms. In the absence of heart failure or hypertension, Na intake can be increased 5 to 10 g above the usual dietary level by liberally salting food or taking NaCl tablets.

This approach risks heart failure, particularly in elderly patients and patients with impaired myocardial function; development of dependent edema without heart failure does not contraindicate continuing this approach.
[quote]

maybe because I just developed CM and it's not terrible is the reason they're salt loading, either way, still makes me antsy to eat so much salt.

[grendslori]

Another thing you have to be aware of is that in order to prevent dehydration you must eat plenty of protein because just drinking plenty of fluids does not keep you from getting dehydrated. The protein is what keeps the fluid in the right places and keeps the hydration in order. Sometimes the doctors fail to mention that; they only say: drink plenty of fluids.

[Lisa33167]

oh wow thanks for that info; I'm going to make sure I ask about the protein too when I go back, I'll have to watch how much protein I'm taking in - probably not enough

yes that would be one thing they forgot to mention and I haven't read that anywhere else, it's all just been salt &  fluids

[grendslori]

That was one thing they told me to pay close attention to with my daughter because of the dehydration and also my mother when she was fighting cancer.

[Lisa33167]

I'm so sorry to hear about your mother; cancer is such a rough thing to deal with.  My mother had breast cancer at 38, 44 and then died at 52 from it.