salt loading/oedema/sinus problems

[ygwair]

Hi, I'm new here and this is just a quick question as my history is quite complex.

I've been increasing salt and fluid on the recommendation of my consulant, the only treatment he is willing to try until further autonomic tests have been done. I'm currently taking 3 l fluid and 5g salt as tablets which is the minimum amount of salt I find effective to help dizziness and odd leg sensations

Recently I've notice that my sinuses become almost completely blocked within seconds of bending, as if fluid redistributes itself suddenly. Could it be oedema linked to the salt loading? Hard to remember exactly when it started but it was probably after I started the salt treatment.  My face looks a little puffy, especially my eyelids.

Also, I may have to cut back on the salt/fluid as I developed a hiatus hernia after vomiting after a salt tablet got stuck in my throat. I've tried to contact my specialist to tell him that I need some other interventions to raise my blood volume, he hasn't replied so far. The only time I've felt normal in the last couple of year was after I had a 1L IV saline infusion, which suggests to me that all my ills are linked to blood volume issues and I'd be happy to try this again. Would treatment with fludrocortisone improve this? The worst manifestation of my autonomic dysfunction is very painful facial erythromelalgia, flares of which correlates very closely with blood volume levels and I'm absolutely desperate to stop the extreme sympathetically-mediated pain and also ongoing damage to my skin it is causing.

[LivingInHope]

You don't want to be that loaded on salt- that doesn't sound good!  You might need to go to emergent care!  I hope you are pressing for a date to be confirmed and also have scheduled an appointment with your specialist?  I'm sorry your doctors are at a loss.  But the Great Physician knows exactly what's wrong- do you know Him?

[ygwair]

Not just sinuses, legs, feet and arms are now swollen to the extent that my clothes and shoes no longer fit. Clearly I'm now taking more salt than I need, but it's only since I've become noticeably oedemic that my facial burning has eased, which is by far the most serious, and vanishingly rare POTS symptom so I'm nervous about stepping it down as it returned with a vengeance after I stopped completely due to the hernia.

I've tried to get in touch with my specialist but he won't return calls or emails, and my NHS (i.e. free) appointment date hasn't even been confirmed, let alone a date arranged. My combination of POTS and erythromelalgia is so rare that both my POTs and pain specialists admit they have no experience of successfully treating it.

[LivingInHope]

My POTS situation can be different at different times, but my most recent holtor showed that particular time period's highest number of 160 while standing after I'd been sleeping.  I never had any doctor give me salt tablets, but  do a little sprinkling of salt in my hand to eat occasionally when I feel a certain way and/or my urine looks very dilute.  One time, when I ate a number of salty foods, it gave me a migraine, so while I don't tend to limit salt, I don't usually go out of my way to eat salty foods either.

[ygwair]

Thanks DNP47, I have tried taking salt with food (soups, salads) but I find it just takes away my appetite completely in the quantities required. I'm shaking it liberally on every meal in addition to the salt tablets anyway. Until the hernia happened, I actually didn't mind taking it in tablet form (apart from sticking in the throat, which should have been a warning sign for oesophagal damage), taking it via food actually makes me feel more nauseous. Strange how different things can be.

[ygwair]

How much salt are people taking here? I tried spreading my salt tablets throughout the day yesterday today (to help reflux/oesophaghal ills); although taking it late in the day definitely seems to help facial burning through the night, the POTs type symptoms were back with only 2g salt in the morning, rather than 5 or 6g as usual. Today was the first day I noticed my pulse racing on standing in quite a while. I think the massive improvement I had after the drip suggests I must be at the worst end of the spectrum, plus the extreme sympathetically-mediated pain from raised norepinephrine levels means I have to take fairly drastic action.

Husband rang neurovascular prof again today, still no communication about medication despite the acuteness of the problem.

[DNP47]

I would think that the increased blood volume from the salt loading could make your sinuses feel stuffy.

I would suggest speaking with your doctor and informing her/him that you are not tolerating the salt tablets as well as expected. There are alternatives. You can figure out how much salt you have in your regular diet and increase the salt from there. There are great web sites available that have some healthy "lotsasalt" recipes. These dishes are designed so that you dont recognize the big increase in salt. Its actually not as hard as it may seem to increase the salt with simple sea salt/table salt added to your regular food.

Now that its summer time, I add a bit of sea salt to my watermelon which helps with the water intake as well.

I was taking midodrine for my blood volume issue. I am now off of it, but many pots/low blood volume patients find this to be helpful.

There are numerous web sites such as potgirl (I think) that are very very informative related to different strategies for treatment.

Good luck to ya!