Possible Warning For Us "seniors"....

[mkoven]

Hard to know what to make of this. I have been on florinef for almost three years, and could not function without it. I was in awful shape before I started,could not sit up, walk around, exercise, work and now I function almost normally. The effect was pretty immediate after I started taking it. I am 44 and do wonder about long-term effects. I have a yearly echocardiogram, which has not changed significantly in 3 years. I do not go out of my way to salt load, but do use more salt if I'm feeling potsier. I take a LOT of magnesium (1600mgs/day, under doctor's supervision), which also balances out my potassium. All of those test in range. My sodium tests at 140 now, my potassium at 4.4 which is in the middle of the normal range. My quality of life matters here.

I don't think the salt/florinef issue is one-size-fits-all. I will continue seeing my cardiologist and getting yearly echocardiograms. I also have eds and we are monitoring a slightly enlarged aorta-- which was enlarged before I started meds, and is not any bigger now. I don't think it makes sense to tell all POTS patients to stop using salt and florinef. That may be the case for some of us. I do think we all need careful monitoring, especially as we age, as it seems like long term info on POTS patients is sketchy.

BTW, the carotid can look occluded for different reasons. On MRA, mine look a little narrowed, but are fine on ultraound. With the two different tests, it was concluded that my carotid is fine. The doctors said that "turbulent flow" can be misread as stenosis.

[yogini]

Julie, I'm so glad that you found something to help - and especially that it involves yoga. Yay for yoga!

Julie/issie, do you think that the heart faliure is caused by the increase blood pressure or other side effects of salt? Do you think processed foods play a part?

I agree with mkoven. I drink 1-2 cups of organic chicken broth per day. It helps me function, and as a result I am off medication which probably would have other long-term damage. We each have to do what works for us. Incidentally I started the broth after I saw a nutritionist. She said that I wasn't getting as much salt as the normal person - since I don't eat too many processed foods.

[juliegee]

Yogini, from what I've been able to discern, I think the heart failure is caused by the increase in BP, which in turn may have been caused by the salt. It's tricky as our BP's flucuate dramatically throughout the day. While I was salt & fluid loading, my readings were always well below normal until recently when they started creeping up only when I was at the doctor's office- feeling nervous. That made me realize that any time during the day that I was stressed or felt overwhelmed (most of the time ) my BP was probably high. My former practice had only been to take a BP reading when I was fully relaxed, had my feet up, etc.- not indicative of true readings.

Mkoven, I couldn't agree more with what you've posted and never stated that it WAS a one-size-fits-all. This was my warning to the "elders" among us to carefully watch their BP's as they age. This was NOT meant as a prohibition against salt and florinef across the board. My son & I have greatly benefited from both and had to pay careful attention to our vitals and symptoms to know when it was time to reduce and cut back. I'm glad that your echos are relatively normal and pray that they remain so. It was terrifying and shocking for me to find that I was in heart failure. I don't want that to happen to you. GOOD for you for taking magnesium- a great way to protect your heart from the stiffening caused by accidental hypertension. WHY do you take it? WHO recommended it? WHAT type? And WHY such a high dose? Forgive my questions, I just want a chance to learn from you.

Issie, no fear that I have cut out all salt. I still eat the occasional Lean Cuisine or Kashi frozen meal- loaded with sodium. I use prepared hummus, eat pickles, soy sauce, whole wheat crackers, etc. I have just stopped ADDING salt to my cooking and food. Huge step for me. My diet is still probably a middle-of-the-road/high sodium diet. I KNOW I need salt to keep all of my electrolytes in balance and even more to boost my blood volume.

Reen, no worries . I DO occasionally overdo exercise and was probably in the BEST shape of my life when I was DXed with heart failure. That's part of why it was so shocking. I am learning to keep it up, at my own pace and, and trying to listen to my heart. Some days it tells me to soar with the eagles and other days waddle with the turkeys I recently pushed myself in a local 5K and earned 3rd place in my old lady category. For my efforts, I had a good 5 minutes of dry heaves- STUPID. No more races for me

Sarah, great point. I wonder if ANS doctors/researchers would be interested in hearing our experiences?

Jennifer, thanks for sharing the articles. I knew diabetes was a risk factor for diastolic dysfunction. Makes sense that a high salt diet that could contribute to hypertension would contribute to this phenomenon, but a low salt diet as well??? Goes to show that it's all about keeping it in balance...

Keep the dialogue going. To my knowledge there are no long term studies looking at this. We all have to pay close attention to our bodies to carefully determine what is best for us.

Julie

[issie]

[quote name='mkoven' timestamp='1299939386' post='153464

My quality of life matters here.

I don't think the salt/florinef issue is one-size-fits-all. I will continue seeing my cardiologist and getting yearly echocardiograms.

I don't think it makes sense to tell all POTS patients to stop using salt and florinef. That may be the case for some of us. I do think we all need careful monitoring, especially as we age, as it seems like long term info on POTS patients is sketchy.

I knew that some would think that we were telling all POTS patients to stop the florinef - but that's NOT the case. For some people who have adrenal dysfunction and need the support of aldosterone - it is important. I wonder though if a compounded form of aldosterone would be better than a synthetic version (flornif) in that it would eliminate the processing that the liver has to do to use the aldosterone. But, from the research I did if aldosterone is used it could have horrible consequences to use salt with it. Aldosterone is what is supposed to balance the ratio of salt in the kidneys and therefore throughout the body. It makes the body hold on to it (salt). It is supposed to help the body retain fluids to up blood pressure. (Please refer back to the topic - Renin/Aldosterone - the Article).

As for salt. We all need it. The question is "HOW MUCH". This heavy salt loading that many POTS patients are doing - can be detrimental - in the long run. It very well will be a quick fix if fluids are immediately needed. In this case, I personally, drink either a G2 with water or use an Emergen C to balance out electrolytes. If all you drink is water, you will imbalance the electrolytes even more. There needs to be a balance between potassium, salt and sugar. That's what helps your body to balance out your electrolytes and increase fluid. Not just a heavy dose of salt. Minerals in their proper balance is the answer.

It is up to each individual person, what you take and do with your body. You need to carefully weigh the results vs. the possible long term consequences. I agree that quality of life - now, is important. But, what about that quality later. Will your decision affect that? Base your decisions on KNOWLEDGE. Don't just take a doctors word for it. Make informed decisions and pay close attention to your body.

[mkoven]

When I started taking florinef, my doc told me that supplementing magnesium was important and would also be a safer way to keep potassium up, rather than take potassium directly. All those minerals work in concert, I guess.

My then cardio recommended I boost mg higher, while I was having a lot of pvcs/pacs. She told me that she was comfortable with my going up to 2,000, if my bowels could handle it. My eds doctor also thought that, within limits, a lot of edsers need extra mg. I take magnesium glycinate that doesn't give me diarrhea. My serum and intra-cellular mg are always mid-range.

BTW, from what I understand, diastolic dysfunction is tricky to diagnose in stage 1. One doc told me I had it three years ago, before starting florinef. But no other doc (5 echos since) has seen it. I think there may be inter-observer reliability problems with measuring it, when/if it's subtle. I have also had slightly high pulmonary artery systolic pressure-- again before florinef, but it has not gone up, and could be normal for me. It's around 29, 30. I think connective tissue disorders might predispose to that. Again, I will continue to get monitored.

Otherwise, the multiple echos and cardiologists I have seen since tell me that my ejection fraction (60-65) is totally normal, my heart is normal sized, and I have small amounts of tricuspid regurgitation, but nothing to write home about. Everyone's heart will have some minor variation. Nothing about the structure of my heart can explain my ans synptoms. And I've had my heart tested every which way, including a catheterization.

The main thing I need to watch is the size of my aortic root. It is currently 3.4, and concern grows when it goes over 3.7. It was mismeasured by non eds docs, as it is only 2.6 a little higher up. On edsers, one has to measure at the very base of the root, as that's where most aneurysms occur. Ever so slightly higher, and the number goes down, as that's where the enlargement ends. I now have my echoes done always at the same facility that specializes in connective tissue disorders, where the techs all know exactly where to measure on stretchy types.

I was initially concerned about the safety of florinef, given my aorta. After talking to numerous docs, we decided that right now, the benefits vastly outweigh the risks. I would have no life if I went off florinef. My average bps are higher, but I also have far fewer swings both low and high on it. Before florinef I would go between 70/30 to 170/100 in minutes. Now I'm consistently 115/75. Those fluctuations could not have been good for my aorta either.

As I said, I don't hold back on salt, but I don't usually salt load, unless I'm having a rough day.

BTW, I have never shown up as aldoseterone deficient. I take florinef because of its volume-boosting effects. All my adrenal testing was normal, before florinef. But it was really a miracle drug for me.I initially did not want to take it, as I feared it would be too much like prednisone (which I HATE!0, but the results speak for themselves.

I know I may actually have to be more mindful of blood sugar and weight as I age. My fasting values are at the top of normal, and I can tell I don't handle carbs very well. There is T2 diabetes in my family. I try to exercise and avoid refined carbs. But I think sugar may be more damaging to my heart as I age than salt.

Sorry if I seem to have reacted strongly. I think long term research and monitoring on us is very important. But I wouldn't want someone to avoid a potentially helpful treatment.

[yogini]

We all need to monitor ourselves and question what doctors tell us. Many doctors assume that salt loading and florinef will help everyone, but that is certainly not the case - especially for those with normal or high BP.

But I think many people with dysautonomia/POTS can benefit from salt loading and/or florinef. It might not be everyone, or even most people, but those who can benefit from it shouldn't hesitiate to try it out. That a decision that needs to be made between patient and dr. (There are a lot of incompetent docs out there, so it is important to have a good one and to educate yourself and make an informed decision) I also think studies of the effects of salt on the general population don't totally translate over to POTS patients - our bodies are just different.

Personally, my BP is on the low side of "normal". There are days when I feel too weak to get out of bed but then when I put on compression hose and or have a cup of broth I am much better right away. In terms of salt and compression I use less than what is "recommended" for POTS patients and even less than what my doc told me to use. I feel comfortable with this - I would be open to more salt and compression if my body needed it. I also pushed my docs to go off florinef after a year b/c it didn't feel right for me. Paxil is the right drug for me right now, which is also controversial on this forum and among POTS doctors...lol. What can you do? We are in a no-win situation. Whatever we do for our medical condition might have unwanted short or long term side effects.