Gracefulprincess

Hey everyone... I haven't been on this site in a long time but recently my pots has been acting up and I'm really frustrated. My blood pressure and heart rate have been all over the place. I'll wake up with my bp and heart rate being close to normal, and then in a hour or two the roller coaster begins. My will spike as high as 163/136 with my pulse being 128 and then a little later it will start going down and end up too low (both my bp and heart rate). At physical therapy this week, they've been concerned about my bp, so we took it again after I did some exercises and it was 132/100 but my pulse was 49 and stayed that way. If my heart rate goes above 65 , it starts feeling like my heart is skipping beats and when I check my bp, the irregular heartbeat symbol comes up. I've contacted my cardiologist last Thursday when this started up again and they said to keep them posted. Well the weekend was the same and this week has been no different so I messaged them again. And now I'm waiting to hear back from some one. I just want to know what to do. I don't want to go to the er and be there for half the night but I'm getting tired of dealing with this. With my bp swings and my heart rate going low, my migraines are worse and I'm more exhausted then usual. Does anyone else have high blood pressure with a low heart rate? If you do how do you handle it? Thanks for letting me vent a little.

I take it but not for POTS, I have other neurological conditions that make me really shaky so the clonazepam helps keeps my shakiness under control. I have to take it twice a day and have been on it for years so now I don't really feel the side effects. When I first started taking it, it did make me really tired.

Hey everyone...it's been awhile since i posted anything but i have a question for you. Do you know if Neurocardiogenic Syncope or Pots can run in families? Do any of you have it and have another family member with it too? I;m asking because my sister (who is a little older then me), her cardiologist thinks she has Pots and is having her do a tilt table test as well as a stress test to figure things out. So i'm just curious. I've had both Ncs and Pots since 2004 so you think i would know an answer, but i was to this point the only one in our family who has ever had this so i never had to think about it. Thanks for your imput! Becca

I had seizures when i was a child, then i "grew" out of them. But in 2010 I had a seizure when i was driving and ended up in a severe car accident. So dr's still don't know why I had a seizure after 25 years of being fine. But i do have neurocardiogenic syncope and Pots...was dx with both of them in 2004.

Stairs are not my friend....with having Neurocardiogenic syncope and Pots I get out of breath easily. And also i have some severe issues with my knees so it's extra hard and hurts to use the stairs. But I can't avoid them most of the time because i live in a townhouse and have to go up and down stairs multiple times a day. When i'm out in public if i have a choice between taking stairs or an elevator...i would chose the elevator.

I have hair loss too and the thing with me, is that my hair is already short and thin to begin with. I was born with a genetic disorder that causes my hair to grow super slow and wont let it grow past a certian length before it will start breaking off. The longest my hair has been is shoulder length. But recently my hair has been thinning even more, because i've been losing alot of weight due to one of my medicines. I've lost 30 pound during the last few months. I'm now down to 114, and when my weight loss started i was almost 140 (its the highest i've ever been, but it's still a normal weight for me). Unforunately the medicine that we think is causing it i can't just stop cold turkey, and i actually need to be on it. But i'll be seeing my dr in a few weeks and see if there's something else he can switch me on. I hope there is cause i can't afford to lose anymore weight or hair at this point.

I was just under review but mine didn't have that many pages. And didn't ask many questions. They mostly wanted me to send them dates of all my dr appts and mediciations. I remember i had some questions about some of the stuff, and called them and they were nice and explained what they needed. That was in march, and i still got my disability payment for this month, so i'm assuming everything is okay.

along with having neurocardiogenic syncope and Pots, i also have other severe neurological issues that effect my muscles,and my legs. So if i'm having a day where i've been feeling weak, and i have to go out to a store i used the electric carts they have. If it's just a in and out of the store situation, i just try to be quick. Ive been using a cane for 2 years because of the neuro issues, and it took a long time for me to get used to that. You dont expect to see a 33 yr old using a cane or one of those carts...so i do get some looks. but usually everyone who works at the store has always been super nice and helpful. All i can say to you is, do what you need to do. I agree with most people, push yourself when you feel you can, but don't push yourself too much. Only you know your limits.

I get chest pain pretty often. A cardiologist dx me with coronary artery spasms, and he said the spasms cause the chest pain. So he prescribed Nitroglycerin (the type that dissolves under your tongue), and put me on a high dose of a calcium channel blocker. This was back in 2006 or so, and the combination seems to be helping. It doesn't completely prevent the chest pain....like i said i still get it alot and have to take the nitro at times. And because of the side effects from the nitro i try to wait it out, if the pain doesn't seem to be going away then i will take it. I only take it when i really need to because of the headache it causing, even though that only last for 5 mins...but it's still the worse part. I'd just talk to your dr about it.

Seems like i have similar issues like you described. My body seems to not be as sensitive to pain meds. I recently had the Reveal Loop Recorder removed, and they usually use something to numb the area, then give you what they call "happy juice" (can't remember what the actual med is called) during the surgery. Well the "happy juice" never works on me...it doesn't relax me at all and i was wide awake and talking during the procedure. They even doubled the dose for me. But the meds didn't kick in till afterwards...then i could barely keep my eyes open and was very loopy. As far pain meds are concerned, they don't work too good on me either. Morphine seems to work if i'm at the hospital. I've been prescribed Lortab for pain, and only take it if i absolutely need to. And even when i do it doesnt really do anything for me. It barely effects the pain and never makes the least bit tired. So if i take it at night it never helps me sleep.

Just wondering if anyone on here has seen Dr Klein at UNC Chapel hill? If so what was your experience like? How long did you have to wait to get an appointment?

to reply to your original question about being put on a calcium channel blocker.....I've been on one for years...probably like 4 or so. I can't remember exactly but my original cardiologist put me on Cardizem 24hr, when i told him i was i having alot of severe chest pain. And he said i was having coronary artery spasms. I can't remember what dose he started me on, but i'm sure it was low, but eventually it ended up being increased to 300mg once at night. Then i started seeing another cardioloigst (a partner of his), and he didn't like me being on such a high dose...so he tried to lower it. He even tried lowering it to 120mg, but the chest pain got much worse and i couldnt' tolerate it. So we settled on 240mg. Which i've been on till recently. I had to switch drs again, because of how i was being treated. And my current one i see now, thinks that the Cardizem is what is making my heartrate go too low. So he had me slowly go off of Cardizem and go on Norvasc (another calcium channel blocker). He said that Norvasc shouldn't lower my heart rate, but could cause more low blood pressure issues for me. Low blood pressure is one of the side effects. So for the past few months i've been trying the norvasc and it's been making my bp too low most of the time. And my heartrate is still going to low.. We've tried cutting the dose in half and that hasn't helped much at all. At least i know that the Cardizem isn't what' causing the low heart rate. Now we just have to figure out what to do about the Norvasc, I'll probably go back on the Cardizem. I'll find out in a few weeks...till then i just have to tough it out.

Lemons, Sorry it's taken me soo long to reply. I've been having issues with signing in..but i think we got the issues worked out cause things are fine now. Anyway to answer your questions....about the brain lesions my neurologist is not sure where they came from or what they are. When they first discovered the first lesion on my right side of my brain, it was right after i had a major car accident. The dr's thoughts at first was that it looked like a MS lesion, but i've already had a previous spinal tap for MS and that was negative. Then when i went to see my neurologist and he saw it, he said that it could be from the concussion. And if it was then the next time we check it with the MRI, it will either be gone or be much smaller. Well later on, not sure how much later it was..we did another MRI. And that showed the orginial lesion which had changed a tiny bit but not much,but also showed a new lesion on the other side of my brain. This one looked much smaller..probably the size of a nickel. The orginal one is longer and about the size of a half dollar coin. I haven't had it checked recently so i don't know if anything has changed. I asked my neuro why there was another one and he didn't have an answer. I guess i'll be getting it checked again soon. And the Loop Recorder did show my heart rate going down to 35 at one point....then showed it in the 40's for awhile. Then it mostly showed it in the low 50's and high 40's. So my cardiologist said that he had enough info to go on, to prove that i could use a pacemaker. But he has his concerns..one being that i'm young and will probably go through 5 pacemakers in my lifetime, so that means more surgeries. And the other concern is that if i get a pacemaker, it has to be the new MRI compatible one that recently came out because i'll probably have to have more MRI's due to the lesions. And he is fine with pacemaker part of it but would rather choose a different company's leads...but this new pacemaker comes as one unit...so he can't pick and choose like with a regular one. hope that answers you're questions And to anyone else reading this has anyone seen the dr at UNC chapel hill?? I looked into seeing the other one listed in Charlotte but from what i read about her and her practice it doesn't sound like she'll be of much help. Does anyone know if there's a dr at Duke??

Hello everyone...it's been a very long time since i've posted anything on here. But i really need alot of help. First, does anyone know of a dr in the Charlotte Nc area who knows about Neurocardiogenic syncope/ POTS...someone like Dr Grubbs? I had been seeing a cardiologist at the Sanger Clinic here in Charlotte. And while i was seeing him my NCS/ POTS was changing...,my heartrate started to get very low. I had Reveal Loop Recorder at the time, and it showed that it dropped down below 50, sometimes into the 30's. The good news is that now it hasn't gone as low as the 30's but still goes down into the low 50's. And when it does that my body feels like its shutting down. So the idea of a pacemaker has been on the table for awhile now. Anyway this dr i was seeing there totally didnt' want to help me, and actually at my last appt with him, he walked out on me while i was crying. So i switched dr's. I now see 2 cardiologist now. One is an EP, he's the one that has been following me while i had the loop recorder in. And he's very nice but he is very cautious. Even though the Loop Recorder keeps showing that i need a pacemaker or something needs to be done...he has his concerns and is taking his time with making a final decision. I recently decided to have the loop recorder removed because no one is doing anything about what keeps showing up and iv'e had it in for over 3 years. So now he switched one of my heart meds to see if that could be causing my low heartrate problems. Which the new medicine isn't making any difference. And now that I don't have the loop recorder, i had to go back and see his partner who is a general cardiologist and doesn't know anything about POTS. I saw him this week, and he suggested i don't continue to follow up with him because there's nothing he can do to help me. That i should go back to the EP..which i'm going to do until i can find someone else. So to make a long story short, i need to find a dr in my area that can help me. So if you can recommend anyone please let me know. Thanks! Becca

Yeah for Ernie....so happy that you're doing well!!!

As soon as i read this my heart just broke for you...so i'll be praying for you and your children. I know you probably feel like giving up right now but please don't! I'm praying that God will give you strength so that you can keep fighting. And that He'll give you wisdom so you'll know what to do next. And that He'll grant you favor with every person you have to deal with. May God bless you! Becca

I've never had the pneumonia vaccine before, but i'm getting one next week. My dr wants me to get one this year because i get bronchitis alot that usually turns into pneumonia.

my cardiologist told me to tilt the head of my bed too...so i tried it for awhile but it didn't help. And i had a hard time trying to sleep with my bed like that...it was too uncomfortable. It ended up being more of a hassle then help.

i have one...it's called a Reveal Implantable Loop Recorder. I've had it in for a year now. my cardiologist has it set so it records my heart rate when it goes in the 30's or if it goes above 200, or if it does something not normal. I also can activate it when i have a symptom...like chest pain, palpations, or feel like i'm going to pass out...etc. If you have any questions about it you can pm if you want.

Tearose... what kind of Polar watch do you have?? I have a mio heartrate watch, which has been good but i want to switch to a polar.

i got one this year and last year too

I was on Lyrica to help with pain and it worked well and helped me sleep. But then it started making my muscle twitch really bad at night...so my dr took me off of it.

i get night sweats too......i had one last night

other then getting a throbbing headache for five minutes, i don't usually get many side effects. Some times i might get a bit dizzy so i usually make sure i'm sitting or laying down till i feel ok.

i was dx with coronary artery spasms a year ago. i had several echos done as well as other tests, that all came back showing everything was clear and there were no blockages. He put me on Cardizem CD (calcium channel blocker) and nitro. I think both meds have really helped me with the chest pain. Before, my chest pain episodes would last for over an hour and i couldn't move cause it would hurt so bad. Now when i start having severe chest pain, the nitro usually works within a five mins.