High Sodium Intake Bp Still Low!

[jadecat]

High sodium intake BP still low! I am confused and fed up with myself for not understanding this!
My 19 year old son has been mostly housebound over the last 2 years, son's consultant says that son's tilt table test was negative and thus POTS and autonomic nervous system dysfunction have been ruled out. The Dr. did say he thought that my son's constant fatigue and inability to think straight might be EDS related and that my son must start exercising and try getting out! more!!
My poor son try's so hard to function but he just can not, yesterday, we got him out to do some sound recording for his sisters show, today he his totally shattered and will no doubt be like this for the next few weeks as always.

So the main issue I can not get my head around is why would a persons BP stays low to very low constantly even while on prescribed slow sodium tablets 2 taken 4 times per day and a high salt diet while being well hydrated. It does not make sense unless something else is going on but my son's GP just keeps telling us that my son is just very sensitive to his low BP!!!

[DeGenesis]

You might want to look into an aldosterone test for your son.

[DeGenesis]

Here is a excellent video that helps to explain the connection between EDS, autonomic dysfunction, and chronic fatigue. You will not be disappointed.

http://vimeo.com/71903707

[jadecat]

Thak you to both of you.

[SarahA33]

What are his sodium baseline levels in blood work and urine tests?

Has he had IV Saline infusions in the past and retained a higher BP from that therapy?

This is one of articles I've had saved because it explains pretty well why IV therapy works so well with Dysautonomia patients: Scroll towards bottom

http://santamariamedicine.com/2013/04/saline-therapy-hydration-found-to-be-a-powerful-tool-in-treatment-of-dysautonomia-pots/

[jadecat]

My son's serum sodium are 139 with NO slow sodium tablets.

Serum sodium levels 140 while on 8 x 600mg slow sodium tabs ref range 133 - 146

[SarahA33]

Hi Jade,

I'm sorry to hear that you and your son are going through all of this. It sounds like you've got quite a lot on your plate. Hang in there and know that your among friends here.


Take care,
Sarah

[IceLizard]

Hi Jadecat,

Has your son tried fludrocortisone (Florinef)? It acts like aldosterone in the body and causes the body to retain more salt and therefore increase blood volume and blood pressure. I am on this to keep my blood volume up.

Another option for raising blood pressure is midodrine, which causes the blood vessels to constrict.

My doctor also told me that I need to include exercise in my recovery plan. In part to tone the muscles around the blood vessels to keep blood from pooling and my blood pressure from dropping. I had an exercise stress test done that showed I am operating at only 47% of my functional capacity for my age (28). My doctor wrote me a exercise regimen which included what exercises to do when (both strength and aerobic).

The regimen is tailored to the fact that I have POTS and EDS, so I must use low impact exercises and small weights (2 lbs to start). I am supposed to be very careful to not overdo the exercise because I will crash. The goal is to exercise gently and slowly build up myself by adding more reps or more time when I am ready. I do exercises that help prevent blood pooling in the legs such as heel raises and ball squats (squats done up against a wall using an exercise ball to keep knees from bending forward, which can hurt the joint). I also do ab crunches, back extensions and various upper body moves with the small weights.

Since I can't run and the weather is too hot for me to use my recumbent tricycle right now, I have ordered a DeskCycle. It will allow me to do aerobic exercise inside sitting in a chair. I have to keep my heart rate in range of 140-160. Going above that risks triggering symptoms and a crash later.

Our hope is that over time (months really) I will improve my functional capacity to the point where I can get out and do things without paying for it as much afterward.

I hope your son can find a way to feel better!

[looneymom]

My son has low blood pressure but he has POTS. However, there are other things that can cause low blood pressure. Before my son was diagnosised with POTS, CFS was being considered. There is a blood test for this and a rhumatologist can do this test. You mentioned EDS. Does he see a specialist for this? If EDS is part of the problem, I would suggest you see a specialist this area. Exercise is hard for an EDS person. Hang in there, you'll get some answers soon. Just don't let a doctor convience you that its all your son's fault. That's the easy way for them to say " I really don't know how to help you with this problem".

[arizona girl]

Hi Jade,

Does sound a bit like you aren't getting all you could from his doc. Have you actually seen the results of his tilt table? If you have not ask for a copy of all your son's medical records including doctor notes and all tests that were done. You have a right to those. I have a hard time believing that with obvious and acknowledged hypotension that there were not some findings on his tilt table test. Does your son always have low BP whether he is lying down or standing? Or does it only occur when he stands. If it only occurs when he stands then that is the definition of orthostatic hypotension and is just one of the forms of dysautonomia. POTS and syncope are some of the other forms. You can also have more than one form at the same time.

Seems you need some more info. There are a few pediatric doctors that might be good to see. It depends on what part of the country you are in. One of Dinet's medical advisors Julian Stewart is one, the other is a Dr. Boris who also specializes in eds in philly. EDS docs are hard to find and you may have to travel to fine one. Floppy veins in EDS as you know contributes to the low blood pressure. Have they done the eds iv genetic test on him yet?

The other members have given you some good tips and from what you've posted it doesn't appear he has been given all the treatment options available. Orthostatic hypotension causes many symptoms that are hard to overcome. To say just go live your life and if you'd only do some excercise you'll be fine, I feel is almost cruel. Exercise of the legs will strengthen the muscle pumps and help pump the blood back to the head. Your son is not making this up, he does feel as bad as he says he does, which really does make exercise hard to do.

As a patient myself being validated that what I'm dealing with is real, is very helpful to hear. Sounds like you are a good parent and advocate for your child. Also be his cheerleader and acknowledge that you know what he is dealing with is real. So many of us get treated like we are not of right mind, it is a relief when some acknowledges that things are real and we don't keep having to prove to someone like a doctor that it is. He needs some hope that things will improve, and it doesn't sound like he is getting that from this particular doctor. Many of us here have had to move on and find doctors better suited to our needs. It is okay to do that.

[jadecat]

Hi Sarah, my son's potassium seem normal 4.3mmol/L ref range 3.5 - 5.3, he has not had urine sodium checked as far as I can remember!

Hi IceLizard, my son does do light cardio exercise when he can, in the the shape of drumming, TRX and stationary bike on not good days he does leg work with those big elastic bands. My son has tried fludro 2 -3 times to no avail and midrodine (SP?) 2 times bad reaction to it both times.

Hi Rachel, I have booked an appointment with GP to get back on track as it is just not fair to my poor son if I don't try and find out what is going on.

Hi Arizona Girl, you are so right about fighting in my son's corner and I will keep on until we get somewhere. Ha ha poor Dr. does not know what lengths a mother protecting her children will go to.