Knowing I have Hypovolemic POTS changes everything.
I’ve just returned from an appointment with my POTS Specialist, and I’ve learned quite a bit more about my condition, things I’ve never even known about at all!
He updated my diagnosis to Hypovolemic POTS, meaning I have a pretty severely decreased blood volume in addition to POTS which is why typical POTS treatments are not working on me. What helps 80 - 90% on POTS patients, only works 30 - 40% on me as my doctor said. So with that, my treatment plan has become very demanding, but I’m most definitely willing to make it work. I’m upping the dosages of all of my medications, going from 60-90fl oz of water per day to 120-140 fl oz of water per day, increasing my salt intake and salt tablets majorly, and starting lots of daily exercise as well.
My doctor also informed me that my episodes of terribly short breath, my severely dry mucus membranes (eyes, nose, mouth), the fluidy sensation and pain in my ribcage, and my frequent sweating are all a part of this type of POTS. This was a huge relief to hear, as miserable as these symptoms are, it’s better to know that they are all one thing rather than signs of more underlying illnesses and conditions. I was almost shocked to hear this information, as you never hear too many POTS patients complaining of the same thing, we’re all so different that we tend to think if no one else feels it, it can’t possibly be of the same illness. I was wrong.
But the thing about hypovolemia, is knowing how dangerous it can get if you don’t treat it properly. Most doctors won’t. After researching this condition some more, I’ve realized that the first time I was in the ER, I had reached stage 3 out of 4 of hypovolemic shock; meaning my blood volume had decreased by 30%, almost one third, they told me there was nothing wrong (typical, I know).
Let me get to the point though, if you’re a fellow POTSie and midodrine, florinef, clonodine, none of those are working enough for you: hydrate more than you think you should, take more salt than you think you need, exercise, don’t risk going out in the heat, and find out what subtype of POTS you have. It can really make a difference.
Take all of this with a pinch of salt and talk to your doctor before doing extensive supplements and treatments. It might be that none of this is appropriate for you, but I wanted to share what is at the least an interesting article.
Hydrate yourself by drinking lot of water. Check your hydration levels by checking your mouth and lips to see if they’re dry.
Use salt liberally – keep all that water your drinking around eating a lot of salt. Eat salty foods. (V-8 juices have a good blend of salt and other electrolytes. )
If your doctor can supply them try saline IV’s. (Dr. Bell has reported that several of his patients respond very well to plain saline IV’s). Dr. Teitelbaum recommends Meyer’s cocktails if you can get them.
Even if your blood tests (ferritin) are only modestly low (or below 50) take iron (1-2 tablets 29 mg. w/vit.C)
Take testosterone and thyroid even if your test levels are normal.
Improve heart functioning by taking mitochondrial enhancing supplements such as: D-Ribose: 5 gm (I scoop) two times a day for three weeks, twice a day thereafter/ acetyl L carnitine (500 mgs, two times a day), coenzyme Q. 10 (200 milligrams a day, Dr. Teitelbaum’s Energy Revitalization Formula.
I’ve been diagnosed for over a year now. and dealing with symptoms even longer. You would think I would have a sort of self-awareness about POTS episodes, but I just realized with this heart rate monitor thing that I can’t tell a difference between 60bpm and 120bpm. I’ll feel like I am having a POTS attack, and my heart rate will be low with palpitations. Then, I will feel perfectly fine, and my heart rate will be sky rocketing. I know when I am more symptomatic on a day-to-day basis, but (with exception to syncope) I’ve realized I have no clue when it is happening.