[Healthgirl]

As far as the extra dizziness, over working heart, and hard to breath issues, the salt is not helping. I happened to be watching the news for my area and it said that the mold count is at a max high!! I am very allergic to mold, but wasn't having rhinitis, so allergies didn't occur to me. NO wonder I can't go outside.
At least I understand why I'm taking a turn for the worse right now.

I just went onto the asthma and allergy website and it says that allergies can cause blood pressure to lower.... well I didn't know that, and it explains what is going on. I can't afford to have my blood pressure any lower or I'll pass out.
What should I do? Antihistamine, albuterol, or steroid inhaler? All this garbage is new to me.

[en bloc]

Get to your doctor and ask for medications to properly treat your low BP!! If you have documented orthostatic hypotension and marked low BP, then you should be treated with medication to help you if your symptoms are as severe as you report.

[Healthgirl]

Originally Posted by en bloc

Get to your doctor and ask for medications to properly treat your low BP!! If you have documented orthostatic hypotension and marked low BP, then you should be treated with medication to help you if your symptoms are as severe as you report.

I'm coming to terms with that. I went yesterday to my cardiologist and discussed options. He said we can try to up my salt to 6 grams and to call him with in a few days to if I'd like to try the meds. I'm preparing myself with knowledge. I'm a little worried about taking florinef. Since I feel that I could be compromised by a pathogen being that several of us are effected with this at the same time, I am worried about putting a steroid in my body.
He mentioned midrodrine, but I think he uses just the florinef, and adds the midrodrine if necessary. Anything you can share about this topic is very welcome!

[stillHoping]

I think that Florinef might help you to feel a lot better.
Florinef is very different than Prednisone, it is a different type of steroid (mainly mineralocorticoid), it doesn’t have all the horrible side effects of prednisone and usually it isn’t immunosuppressive.
The dosage for POTS/NMH is very low 0.1-0.2mg.
From my experience the effect of increasing the fluids and salt intake is very limited without the Florinef. Florinef increases the fluids retention and does the difference.
It might take time to adjust the dosage, sometimes it is necessary to add other medications as midodrine, beta blockers, etc..
It took me about 2 months to find the right combination. During that period I had to monitor closely my HR & BP and try miniature changes of the meds.
It is important to monitor the potassium levels, because Florinef might affect it.

[en bloc]

The Florinef (as Still Hoping said) is very different than prednisone. Florinef will help you retain fluids better.

The Midodrine is a vaso-constrictor and works by compressing the blood vessels to keep the blood from pooling in your feet/legs. It works very quickly (within 15-20 minutes) but is short lasting (about 3-4 hours, then starts to wear off), so has to be taken 3 times a day (only during daytime hours). I take it at 6 am, noon and 5 PM. Nothing at night, as you don't want it to increase BP while you are laying down...and possibly cause hypertension at night.

Typically you start with one medication, then add the other if you still need help in reducing symptoms. You are obviously way beyond sodium helping you, and need other intervention. So talk to your doctor about which one to start and go for it. Your symptoms of lightheadedness/dizziness, etc are from not getting enough blood to your brain. This is not good to deprive your brain of necessary oxygen rich blood.

[Healthgirl]

enbloc and stillhoping, I really appreciate the information.

I am trying to figure out what to do first.

Since I am sure that my autonomic problems are being flared by the mold spores in my area, I'm wondering if I should try singulair first. I've done some reading on allergy websites and allergens can cause a drop in blood pressure and dizziness. What do you think?

Also, I went to the cardiologist and he said I should try 6 grams of salt, which I was way under, so I'm not sure if I've given that a fair trial yet.

What do you all think?

[stillHoping]

I'm not familiar with mold allergy and its treatments, but if you believe there is a chance that this is what causing your drop in BP than I would try to treat the allergy first, because I prefer to treat the cause and not just the symptoms.

From my experience (and I don't know how is it to others) the effect of high fluids and salt intake is very limited without Florinef. From what you wrote it seems that increasing the salt intake won't be enough. But I might be wrong... this is only my experience. When I try to increase the salt intake (without florinef) the POTS gets better for a few days and then my body probably adjust to it and it stops helping.

Take into account that when taking florinef it is important to get ~3gr sodium (~7-8gr salt), otherwise it won’t be effective. I found it very difficult, since I don’t eat processed food, meat and dairy, and I couldn’t tolerate it, had GI problems, lost appetite (so it was even harder to increase the salt intake), stomach ache nausea, etc. And it caused my iron levels to drop so I was very tired and weak.
When I took florinef many years ago, before I started to keep on a healthy nutrition, I didn’t have a problem with the salt, and I continued this treatment for 2+ years.

Regarding Florinef vs Midodrine, I tried just the florinef, a friend who has POTS is taking Midodrine and it helped her considerably.
Have you done tilt with catecholamine (norepinephrine, epinephrine, dopamine) tests, vaslava etc. ?
My friend and I went to the same POTS doctor and according to these tests he recommended on the Florinef for me and the Midodrine for her (and in both cases he was right, although I couldn’t tolerate the high amounts of salts when I did get enough of it my POTS symptoms were great).

Anyway the good side of all of these treatments is that although it might take a while to adjust the dosage and find the right combination and timing, it is pretty fast to know if they are helpful.

[Healthgirl]

Originally Posted by stillHoping

I'm not familiar with mold allergy and its treatments, but if you believe there is a chance that this is what causing your drop in BP than I would try to treat the allergy first, because I prefer to treat the cause and not just the symptoms.

From my experience (and I don't know how is it to others) the effect of high fluids and salt intake is very limited without Florinef. From what you wrote it seems that increasing the salt intake won't be enough. But I might be wrong... this is only my experience. When I try to increase the salt intake (without florinef) the POTS gets better for a few days and then my body probably adjust to it and it stops helping.

Take into account that when taking florinef it is important to get ~3gr sodium (~7-8gr salt), otherwise it won’t be effective. I found it very difficult, since I don’t eat processed food, meat and dairy, and I couldn’t tolerate it, had GI problems, lost appetite (so it was even harder to increase the salt intake), stomach ache nausea, etc. And it caused my iron levels to drop so I was very tired and weak.
When I took florinef many years ago, before I started to keep on a healthy nutrition, I didn’t have a problem with the salt, and I continued this treatment for 2+ years.

Regarding Florinef vs Midodrine, I tried just the florinef, a friend who has POTS is taking Midodrine and it helped her considerably.
Have you done tilt with catecholamine (norepinephrine, epinephrine, dopamine) tests, vaslava etc. ?
My friend and I went to the same POTS doctor and according to these tests he recommended on the Florinef for me and the Midodrine for her (and in both cases he was right, although I couldn’t tolerate the high amounts of salts when I did get enough of it my POTS symptoms were great).

Anyway the good side of all of these treatments is that although it might take a while to adjust the dosage and find the right combination and timing, it is pretty fast to know if they are helpful.

Thanks for all that!
I have the cardiologist ready for when I decide, so at least thats in the works.
I did have the tilt test and it was some kind of vasovagal thing. I don't have the report in front of me. I remember at the bottom it says cholinergic neuropathy. No one ever discussed this with me and was just told it was the reason why I have the symptoms I do. The neurologist at Columbia prescribed mestinon to see if it would help and it did not. Since she doesn't know the cause of my neuropathy and is not one to explain anything, I just see my local neurologist for pain management and now will have this cardiologist on board. I just need to find a pulmonoligst that understands autonomic neuropathy and what it does to the organs/lungs so I can try one thing at a time.

Does the florinef help with the foot pain from standing? I wonder if my blood would circulate better if I would have such pain everywhere still.

[stillHoping]

Originally Posted by Healthgirl

Does the florinef help with the foot pain from standing? I wonder if my blood would circulate better if I would have such pain everywhere still.

I don't know, I took the florinef many years before the neuropathy so I have no experience with this. On one hand the florinef will increase the fluid retination in the feet so maybe it would increase pain? on the other hand it will increase the blood volume so maybe more blood in the feet will help the circulation ?
Midodrine constricts the blood vessales so I guess less blood would reach the feet.

Rituximab helped a lot with my POTS and probably improved the blood circulation because my feet and hands got warmer, it was much easier to sleep this winter....

[en bloc]

Originally Posted by Healthgirl

Thanks for all that!
I have the cardiologist ready for when I decide, so at least thats in the works.
I did have the tilt test and it was some kind of vasovagal thing. I don't have the report in front of me. I remember at the bottom it says cholinergic neuropathy. No one ever discussed this with me and was just told it was the reason why I have the symptoms I do. The neurologist at Columbia prescribed mestinon to see if it would help and it did not. Since she doesn't know the cause of my neuropathy and is not one to explain anything, I just see my local neurologist for pain management and now will have this cardiologist on board. I just need to find a pulmonoligst that understands autonomic neuropathy and what it does to the organs/lungs so I can try one thing at a time.

Does the florinef help with the foot pain from standing? I wonder if my blood would circulate better if I would have such pain everywhere still.

I don't think you'll have much improvement of foot pain from standing with Florinef. It works by increasing fluid retention, not circulation. It's the Midodrine that helps stop the blood from pooling in your feet...and it is more likely to help foot pain, if it is from this type of circulation problem.

If you think this is allergy related, then try the Singular. You will know in just a couple days at most. I personally don't see allergies "causing" autonomic dysfunction. It's not going to hurt to try the Singular. There are also OTC allergy meds like Zyrtec, etc.