havefaitherin

I agree Flop. It is so complicated! My BP does the same thing. It is so weird how different, but the same so many of us can be:)

I find your reply interesting. Yes, my blood does pool 52% in my legs and abdomen per a test that was done in 2005 at the Cleveland Clinic. It was a hemodynamic blood volume test. Although interesting, it wasn't very helpful in treating me. Also, I feel a little puzzled by the idea that the Hyperadrenergic POTS and POTS aren't different. I say this because of the Catecholamines they find in the blood of Hyperadrenergics. I realize many similarities between the two, but markedly different symptoms from others that don't tend to have the Catecholamine problem. I was told by a leading doctor in Autonomic Dysfunction that if they knew back then, what they know now, that Hyperadrenergic POTS wouldn't have been named POTS at all, because they are so markedly different. They would have been their own entity. It is all so complex, I know. I have been dealing with this disease since 2003, so I truly understand the ups and downs and questions we all have with limited research behind us. Thank you so much for your post. I found it most interesting and am pondering some thoughts you brought up. I love a little mind jogger....especially when the rest of my body isn't working up to par!! Also, thanks for the Potassium post. I found that website very helpful and am taking oral potassium now.

The ablation was for the uterus....not my heart. Sorry I didn't specify. Yes, my potassium has been up and down. I am on oral potassium now with compression stockings. I also had an IV with potassium earlier this week, but it didn't really make me feel better. They can't figure out why my potassium keeps dipping down either.

Hello all. I am a little overwhelmed right now and trying to make sense of things. I was diagnosed with Hyperadrenergic POTS years ago and have dealt with it fairly well by avoiding triggers, etc. This summer I had an ablation done, and things haven't been right since then. A few weeks after the surgery I had a charlie horse in the pool while I was doing laps. It lasted 8 minutes and the only way we stopped it was getting me into the hot shower. Since then, I have been having leg pain (both thigh and calf) frequently. It has been getting much worse as of late, with accompanied tired/weakness. My BP has also been dipping very low along with heart rate, but also high at times. I saw my cardiologist yesterday and he believes for some reason, I have now started developing the symptoms of a "regular" POTS patient, which hasn't happened thus far. He is very confused by this also, and is also contacting my specialist in Toledo. They have to be careful with how to treat me because of the Hyperadrenergic side of things. They can't medicate me the way they would a "regular" POTS patient. This all started after my surgery this summer (which was the first surgery I had after being diagnosed years ago) and has progressively gotten worse. Also, while I was in the hospital this week my IM doc ordered a narcotic for the leg pain which sent things haywire (eyes rolling back in head, tachy heart rate.) My body cannot handle any narcotic drug without really horrible side effects. After my surgery in July they gave me phentanol and I stopped breathing. Just feeling a little desperate and wondering if anyone could shed some light on this for me. Thanks for your time:) I am 31 years old and have just recently lost 18lbs and started exercising on a recumbent bike 5 weeks ago (appx. 50 miles a week.) I am doing a low glycemic load diet....and felt the best I have felt in years before my symptoms emerged painfully/daily these past couple of weeks.

No florinef. My heart meds are 80mg Diovan and 40mg Coreg XR. Diovan is actually a potassium sparing drug. To answer another question above, my magnesium has been fine in all of the chem 6 panels they have been doing lately. I have been getting my potassium checked every week/2 weeks in the past month.

Hi everyone. I was wondering if any of you have experienced a low potassium/high blood pressure? This started a few months ago when I found out my potassium was continuously coming back low. Now over the past couple of weeks there has been a significant rise in my blood pressure. I know high bp probably sounds funny to lots of you, but I have Hyperadrenergic POTS so I tend to go high at times. I just don't ever stay as high as I've been despite 2 bp meds I take. My doc mentioned some kind of adrenal problem or possible Cushings Syndrome. Has anyone experienced anything like this?

I feel compelled to reply to this. I have seen Dr. Grubb for 2 1/2 years now and have to say, that I too am overweight, but have never felt that he blamed that to be the CAUSE of my illness. As one said earlier, he truly cares about our well being and wants us to be healthy so that we can have the best life possible. He gets this stuff....and I have only seen kindness, caring and compassion when visiting him. Please don't let this discourage others who may be considering seeing him for help. I have been to two other major Autonomic places with lots of test and no follow up. He is one of the best we have here in the states and he just wants us to be as healthy as possible. Spending three hours with a patient is amazing in itself these days!!!!

I would love to participate. I was just in Toledo this past Monday and saw Bev. She said Dr. Grubb is doing the best possible and showing amazing strength through this challenging time. I brought a card for him to my appt. and they said cards are appreciated for him and his family. You can send them to the UT address attn: Cardiology Department, Dr. Grubb. They are getting the cards to him.

Dr. Grubb and his staff (Bev-his N.P) have been the best at diagnosing and following up. I see a fantastic cardiologist also in my town, but still see Dr. Grubb or Bev every 6 months, as I am still having many problems. I wen to Cleveland Clinic and Vanderbilt and got the same testing as everyone here. Great test, terrible information to walk away with not knowing what it means. Dr. Grubb has truly been amazing at helping me understand what all of those other "test" actually meant!!! There aren't too many people in this world as compassionate as that man is!

My daughter has NCS and it does make her fatigued. When her blood pressure and heart rate both drop she feels tired. So, how could it not cause fatigue? At least at times it would have to! I was thinking of taking my daughter and I both to a Naturalist as I have a lot of other auto-immune issues that I wonder about.

I was wondering if anyone here has seen a "Naturalist" for your Autonomic Dysfunction or any other issues you may have? I was considering it and wondering if anyone has been down this road before. I just want to see what they would say, as I have so many immune system problems on top of the Hyperadrenergic POTS. I am a little bit of a skeptic, but I feel I can't say anything about it either way if I haven't tried it myself. Erin

This post is funny to me. I can only read my little girl one book at a time as I get so winded it's a little hard to breath. I have to take breaks between books. Who knew???

I actually have a very different and bad affect from narcotics. They put me in a state of being comatose. I was on a cough medicine with coedine in it and my husband couldn't wake me up and said my entire faced was washed out, including my lips turning a bluish white. I've never really understood why that happens to me, but it happens any time they try a narcotic. I now have it in my chart that I can't have them.

Thanks everyone! Your responses are great and encouraging. I know things will work out, no matter what the outcome will be. We are a strong family with a ton of faith, so that will sustain us. I'm not saying it will always be easy, but I know we will be sustained. I am going to take all of the advice and decide what to use that will help her. She is a pretty upbeat kid, so that will make it much easier. Melissa, I read the article about you in the newsletter and find your journey amazing and see that you have great strength. Thanks for letting me see both sides of this disease, good and bad.

When I get VT I can't breath very well and my heart feels as if it's jumping out of my chest. It's only happened a few times. Morgan, they actually aren't really watching the Long QT because they only recorded a run on an EKG once when I was taken to the hospital after a pass out a little over a year ago. They attributed that to BP and ANS because it happened about 10 minutes after I passed out. Dr. Grubb has talked a little about an EP study, but we have never gone that route as I feel he truly believes it's ANS related. He wanted to watch me for awhile before he did that and it's just now been a year since I first got to see him. I go back in January again, so I'm sure we'll have that discussion again. Also, I'm wondering if you flush all of the time? Maybe that's an entirely different topic!