POTS or NCS

[Grambertie]

Hello, I've just found this forum for the first time and this is the very first I've heard of POTS. I was diagnosed with NCS a little over a year ago when I passed out during the tilt table test. Tilting upright for 30 minutes did not induce symptoms so they injected a drug and within 30 seconds of being tilted upright again, I passed out. My cardiologist diagnosed a heart arythmia and I have been taking Norpace since that time with relatively good success until recently. After reading about POTS, I'm wondering if I have that instead. I hope someone who has had similar symptoms will respond.

I am female, 50 years old, and starting having symptoms at age 48. I started to have lightheaded sensations, rapid heartbeat and shortness of breath from just walking or exerting any mild form of physical activity (like standing still and using my arms to clean windows). Within seconds, if I didn't sit down, my vision would start to go black, kind of like the old black and white televisions starting to go black around the outside range of vision, closing into a little white dot in the center. Sitting down always made the symptoms go away. But they would often return upon standing and moving again. I would go for days and have no episodes and then have several days in a row with frequent episodes. These episodes had nothing to do with stress, anxiety or fear - they would occur during normal daily activity like walking my dogs. At first the only pattern I noticed was they seemed to occur most often after a meal. I noticed on weekends if I walked before breakfast, no symptoms - wait till after breakfast, and I would have to sit down several times during the walk. And what I ate did not seem to matter, it could be some fruit and juice or a full eggs and bacon breakfast - same results. My cardiologist said he could find no link between my condition and eating. But another frequent time for episodes was when walking back into work from the parking lot after lunch. I have never passed out completely, just felt sure I was going to.

Since I have been taking Norpace, as long as I remembered to take my 2 doses a day about 12 hours apart, I remained symptom free, until last week. It was 2 hours till time for my second dose and I had the worst episode EVER, I really thought I was having a heart attack. My husband and I were walking around some new property with an excavating contractor and we walked up a hill (not very steep) about 50-75 yards. The lightheaded sensation started and my heart felt like it was going to beat out of my chest, I walked to the truck, sat down in the seat and the symptoms didn't get better, they got worse. My hearing started to fade, my vision started to go and I felt a wave of nausea and stomach cramping. My husband drove me home (about a 3 minute trip) and helped me into the house. I was amazed I didn't pass out on the ride home. It took about 5 minutes after coming into the airconditioned house and sitting down for the symptoms to start to subside. Since that day, I have had to start taking the second dose of Norpace six hours earlier than before, because after about 8 hours, the morning dose is no longer working and I start to have mild symptoms. My cardiologist moved and I had to see one of his associates this week. She was a total dud, told me to cut my blood pressure medication in half and come back in a month. Now I don't think you have to be a rocket scientist to understand that if moving my Norpace ahead six hours keeps the symptoms from happening, it's not the BP medicine that's causing a problem. I have appointment in Sept. with new cardiologist, hope he's a good one.

To complicate this whole mess, I had renal artery angioplasty twice last year because of a disorder called fibro muscular dysplasia which causes a web of fibers to grow across the path of blood flow in the arteries that feed the kidneys. The side effect of renal blockage is high blood pressure. Both times, the blockages came back. I'm being treated at Duke University for this where they are waiting on the medicated stents to be available for renal angioplasty (hopefully within the next year or two). So, I have to take medication for high blood pressure.

I have been very healthly my whole life and I'm getting really frustrated with the lack of ability to do simply exercise or chores without feeling like I'm going to pass out. Sorry for the lengthy message - I hope other with similar symptoms will respond. Thank-you - I'm really glad I found this forum!

Sharon in Bedford, VA

[Ernie]

Hi Sharon,

Welcome to this nice board.

Since you were diagnosed last year and you now have new symptoms I would ask my doctor to schedule another TTT.

What is your heart rate supine and then 5 minutes and 10 minutes later?

Ernie

[Michelle Sawicki]

Welcome to the board, Sharon. Have any of the doctors checked your blood pressure when you are standing up?

We do have a list of doctors on our website that treat dysautonomia at: www.dinet.org/physicians.htm There is also a DINET forum specifically for Virginia people. If you haven't visited it already you may want to do so...the others know what doctors are available in the area.

Take care,

Michelle Sawicki

[Grambertie]

During office visit Thursday, my BP after being supine for 5 minutes was 110/78, then after 5 min. sitting - 104/70, after 5 min. standing, it was still 104/70 and I experienced no symptoms. Then Friday at work, about 7 hrs. after taking my medication I was walking at work and starting to feel very slight symptoms, mainly shortness of breath and rapid heart rate - although not extreme. I went to BP machine in cafeteria and it was 148/91, I was surprised. The cardiologist I saw Thursday was steadfast and determined that no patient had ever "broke through" the Norpace and experienced symptoms, so it must be my BP med is lowering my BP too much. I just don't buy it.

During TTT last year, after injection of the drug, my BP dropped to 70/50 when I passed out. I am anxious to see the new doctor. Will post again after seeing him.

Thanks to both of you for the quick response. I don't know anyone else who has this problem and there is a comfort in finding this forum. Thanks again.

Sharon

[blackwolf]

I don't know if it would make a difference to you but Norpace didn't work for me. HOWEVER, generic script DID, I used to get Dysopirmide 150mg twice daily and did do pretty good on it. Do to increased liver enzyme trouble I had to stop. And yes, I also had "break through" in the medications abitlity to control my heart rate. My doc decided to add Toprol, but it does lower your blood pressure. I am currently waiting to hear back from my doc as the Toprol is no longer controlling my heart rate at all. I'm bouncing from 30 to 180 several times a day.

Good Luck

Blackwolf

[Grambertie]

Blackwolf,

Thanks for responding. I used the name Norpace, when actually it was the generic dysopyranide. I take 4 150mg. each day - the worst side effect is the drymouth - it's awful, but I've learned to chew lots of gum and keep water handy. Tried the Toprol first, but I have slight asthma and it caused extreme shortness of breath so I had to stop the first week, that's when I switched to dysop.

I am still controlling bad epdisodes by adjusting the time I take my meds. The 300mg. in the morning used to last 12 hours, now it only lasts 8. When it starts to wear off, I experience slight lightheadedness and rapid pulse. Takes about an hour for the next dose to kick in since it is time release. I get up very early, usually around 4:00 a.m. Seems odd to me that I never have symptoms in the morning, even though it's been about 14 hours since my last med. I don't take first dose till about 6:00 a.m.

What other symptoms do you experience with the rapid heart rate? Does it ever happen when your sitting or lying down - for me - it never does. Seems to be exercise induced - not heavy exercise - just movement in general, the more agressive the movement, the worse the symptoms (like walking uphill or up steps is far worse than on level ground).

How long have you been having problems? Were you diagnosed with NCS or POTS? I had never heard of POTS till yesterday when I found this forum. Good luck with getting it under control. Having several episodes a day is terrible. My cardiologist told me at the time he diagnosed NCS that best case it could be treated with meds, worst case, I would need a pacemaker. Have they mentioned this to you? Again, good luck and thanks for responding.

Sharon

[POTSparent]

Grambertie: I don't think it's necessarily a matter of whether you have POTS instead of NCS. You've got a professional diagnosis, so you might as well call it NCS. But know that the reason the symptoms here sound so similar are, well, because the two are practically "kissin' cousins". Medically, I guess they do get down to splitting hairs differences. I could well be wrong, but I always thought that POTS was more excessively elevated heart rate accompanying a change in posture leading to dizziness, while NCS was more a diving blood pressure accompanying those same posture changes and probably more likely to make you actually pass out rather than just feel lightheaded. And the two have similar treatment plans (like lots and lots of fluids plus salt). Welcome to the site!