Breathless-New Symptom-In A Nutshell What Can I Do?

[E246]

Hi,

Just as I was sure I was finally getting better, I got worse and now I have breathlessness as well as chest pain.

The fludrocortisone seems to keep my hr down, bp mostly ok sometimes high.

At first it was just episodic but now it's there all the time and not sure if there's anything that will help.

Any advise?

[Katybug]

I was just talking to my POTS neuro about this. He said that well over 1/2 of his POTSies complain of this symptom but basic pulmonary testing usually shows nothing. He is looking for a pulmonologist to work with him to do more in depth testing to figure out for sure what causes it. I asked him what he thought about the theory that it is thoracic perfusion and he said it is definitely a viable option for what might be happening but that there just isn't enough research yet to say that's the bottom line. I wish I had advice for you as to how to make it better but it is one of my worst symptoms these days and I haven't found anything that eases it, other than lying down and resting.

[abnel]

Fludrocortisone can cause low potassium levels. One of the symptoms of hypokalemia is shortness of breath. There is a direct correlation between my potassium levels and my shortness of breath. The more hypokalemic I am, the worse my shortness of breath. I've always had some breathing issues since POTS, but they became much worse after I started Florinef, even after I started supplementing with potassium. I'm still not sure if it's related to a low grade allergic reaction I am having to the Florinef, or if it's just coincidence. I am hoping to go off Florinef completely to try and get this figured out. If you're not already supplementing with potassium it might be worthwhile getting your potassium levels checked and supplementing if you need to. I faced a lot of resistance from my doctors to the notion that FLorinef can cause potassium loss when it is printed as clear as day in all the literature. They refused to believe my low potassium was related to Florinef until more recently. I hope your SOB improves soon for you.

[Lemons2lemonade]

I take florinef and also have the shortness of breath. But I also get my potassium checked regularly and its normal .

[E246]

Thanks,

Potassium checks have always seemed ok. Maybe like a lot of tests we are just very sensitive to a change in our electrolytes that doesn't show.

Mentioned this at last consultation and was looked at blankly. Lack of acknowledgement makes the symptoms more difficult to deal with.

I would go bonkers if it weren't for this site.

Thanks

[RichGotsPots]

This is why I'm so cautious about trying meds... I know how to exactly test pulmonary blood flow the problem is there is no doctor in the whole country concerned with this problem... I found a harvard researcher who does exercise testing on pulm hypertension and said he would look into the problem. He says he's patients who had blood augementing away from their hearts but then he basically prescribes pots type of meds :/

[issie]

I've been doing research on mast cells and mast cells can degranulate in the organs too. It is possible for them to degranulate in the lungs and cause these issues. Have you tried allergy meds to see if they help or a mast cell stablizer - like NasalCrom?

Issie

[E246]

Rich,

this is a bit of a crossover with another post we were having - but does a cat scan with contrast show just lung function or will it show heart flow as well?

Issie,

Yes i suddenly remembered that an anti allergy med could work and would be a good thing to rule in or out. Still really scared to take one in case of a bad reaction. I have benadryl - would this be a good one to try? But it says it lasts 12 hour - are they fairly innocuous.

[corina]

Emma, on trying meds you might want to check with your doctor. 12 Hours can be a loooong time! Good luck in finding answers!

[issie]

I reserve Benadryl for severe cases - cause it gives me tremors and will knock me out. I use Claritin and sometimes 1/2 a zantac with it. There's also the mast cell stablizers like NasalCrom.

Theres also the matural natural type things like Quercetin and Vit. C.

Issie

[Katybug]

In my case, the allergy meds don't help the breathing/chest pain issues a all. I'm on hydroxyzine and high dose cimetidine an take benedryl when I need to for acute skin reactions or GI upset due to food triggers but it has never helped with the breathing/chest issues.

[Relax86]

For me I get decent relief of SOB using 5MG of hydrocortisone, 3x/day. It's the only drug that I take and helps. I know there are some downfalls to steroids but for me right now the benefit far outweighs the risk until I can hopefully climb out of this 6 month slump. Also Zico coconut water helps a lot. Only plain - not flavored. Good luck. ~ Tracy

[RichGotsPots]

Emma, unfortunately cat scan don't show the actual flow, and the contrast doesn't either, because a cat scan is a picture just like and X-ray but with greater detail. The contrast in a cat scan can take a picture of that moment an so it can tell if there is a clot, a tumor or any other obstruction blocking the flow of blood... An MRI is similiar but a more continuos pictures because there isnt as much radiation as cat scan so they can take more pics, they also have very creative calculations to figure out flow from MRI pictures. Ultra sound is also used for blood flow, especially in the heart with bubble contrast. Lastly and I think most importantly there is nuclear tests like perfusion scans ans spect scans that are good for flow...