Gracefulprincess

I have POTS and NCS, and i'm on nitro for chest pain caused by coronary artery spasms. It helps me a lot.

I crash around the same time every day..usually between 4-6. I get so weak and tired that i can't stand and it's hard to keep my eyes open. It really does feel like my body is trying to shut down. I usually end up staying on the couch or my bed..which ever is closer...till the feeling passes. Sometimes i can sleep for a few hours and i'll be alright when i wake up. And then there are evening when i have to go out somewhere so i don't have the option of sleeping...and i have to try hard to push myself and stay awake. It gets really frustrating.

I just got a loop recorder put in last month. One of the first things they told me was that i can't have a mri done while it's in. I saw my neurologist last month because of my left arm going numb, and my left left dragging. And he wanted to do an MRI but had to settle for a CT scan instead because of the loop recorder.

well yesterday was the big day...i had the "reveal" put in . The surgery went pretty well..they gave me ALOT of happy juice....so most of my experience was a blur. But afterwards i was in alot of pain, and still am in pain. So I'm oxycodone for it and it's been helping. So i'm just taking slow for the next few days. Thanks for all the thoughts and prayers.

Maggie... how did you feel after the procedure?? Just asking cause i don't know what to expect.

amy, sorry that you're going through alot right now...I'll be praying for you.

ok so i had the tilt table test done a few weeks ago. This was my third one. And to my surprise ..,more like shock...i didn't pass out. During my past ttt i usually pass out within 10 mins. Well to make a long story short...they concluded that the medicines i'm on are working more then what they had thought. So that is the good news. It's nice to know that i'm not taking all these meds for nothing. And the dr that was overseeing my ttt (not my usual cardiologist) scheduled me to get a "Reveal" loop recorder. He agrees with Dr Grubb and thinks that this is the best thing to do. So he talked it over with my cardiologist....so all my dr's are on the same page right now.....that in itself is a miracle. So next tuesday (june 10th) i'll be going in to have this loop recorder put in. Has anyone else here had this done?? I know that it's a fairly simple procedure but i'm still a bit nervous about it.

I was wondering if anyone here knew of a good cardiologist in the Charlotte area. I think i need to find a new one. Mine is completely unwilling to do anything that Dr Grubb has recommended. And he's frustrating me to do no end. He recently had me wear a king of hearts monitor for a month because of my heart rate dropping too low...instead of putting in a Reveal implantable loop recorder that Dr Grubb is recommending. Wearing the king of hearts monitor was a waste of time because i could never catch the heart rate dropping in time to hit the button and whenever i passed out i was too out of it to remember hit the button. He is also having me have another tilt table test done at the end of this month. So if anyone knows of a cardiologist in my area please let me know. Thanks!

I was on norpace for 3 years. My doctor recently took me of it only because it hasn't been helping much.

Dr. Grubb wants me to get one of these...so i'll probably getting one sometime next month

I finally have my first appointment with Dr Grubb this thursday (january 10th). I'm flying out on wednesday with my mom. I was wondering if anyone else was seeing him the same day. My appointment is at 1pm. It would be cool to get to meet some of you. Also, is there anything i need to know before i get there? Like i said before this is my first time so i don't know what to expect.

I usually eat a bowl of cereal, either Cinnamon Life, or Smart Start Cinnamon Raisan. And I'll have a cup of coffee...sometimes 2 cups...one to enjoy and the other to take my medicines with. For some reason coffee is the only thing i can take my meds with, that doesn't make me sick.

I had epilepsy when i was younger, and started having seizures around age 2. And eventually i grew out of it, and stopped having seizures when i was 7. I don't remember much from back then. My mom has told me that i had all kinds of seizures and that whenever i had seizure, i would end up in the hospital because it was so bad.

I'm so shocked and VERY sad to hear about Mary.....i'll be praying for her family.

so today i had my cardiology appointment, i didn't find out much. Just that i have to have a stress test and echo done as soon as possible. I'm not looking forward to it at all. The last time i had a stress test done, i ended up passing out and then got sick afterwards. He also said that it maybe have something to do with the heavy dose of ibuprofen i'm on( my pcp has me taking 800 mg of ibuprofen 3 times a day for the inflammation and pain in my shoulder). But that doesn't make sense cause i didn't start taking the ibuprofen till this past saturday, and i've been having the heaviness and pressure in my chest for about 2 weeks now. So i don't have alot of answers, just frustrated. I'll be back at the cardiologist next month for the stress test/ echo results.

Hey again, i saw my pcp this afternoon, and she thinks that the heaviness and pressure in my chest is from my pots episodes. And all i can do about it is to rest when it's happening. I'm still going to see my cardiologist on monday, so we'll see what he says. And i'll post more after i see him.

thanks for all the suggestions... i really appricate it! hopefully i'll be seeing my PCP on friday, and i'll be seeing my cardiologist on monday. So hopefully i'll find something out, I'll post more when i do.

Julie- i'm not sure if breatheing makes the heaviness worse, i just know that it's hard to breathe. I'm going to call my PCP on monday and see she needs to see me first. I'm pretty sure that she'll just say to go to my cardiologist. When i find something else out i'll let everyone know.

This week I've been having pressure and heaviness in my chest. The best way to describe it is, it feels like something is sitting on my chest, and sometimes it's hard to breathe. this isn't a new symptom for me, it's just been worse this week. Usually when i get this, it just goes away and doesn't come back too often. But this week i've been getting it on and off since monday. I can barely do anything without feeling this heaviness in my chest. Yesterday i was folding my laundry and started to feel like that. I've been in contact with my dr's office all this week. my cardiologist says i need to see him, but the earliest he can see me isn't till the 20th. So i guess my questions is for those of you who deal with pressure in your chest, how do you deal with it?? When it hits me, i usually try to rest, but that doesn't always help. I'm really hesistate about going to the er, cause they won't know what to do, and will end up sending me home. So i'll just be wasteing my time and end up more frustrated. Today i've been okay, at least so far. So maybe it was just a bad week...who knows.

thanks for all the responses.... doctorguest... the dizziness that i've been having has been like the kind i get when i'm having a syncope episode. I get really light headed and start seeing those sparkly things ( aka stars). It's not like motion sickness and the room doesn't feel like it's spinning. I do have chronic migraines, and actually have had one everyone day so far this week. I'll probably be seeing my cardiologist again within the next few weeks. emily.... i've already had one of those mri's and it came back normal. I had therapy yesterday and will have it again tomorrow. All we've been able to do is the heat ultrasound to loosen my muscles up, and then she gives me a deep tissue massage, and then she puts a heat pack on my shoulder/neck. On the days that i not dizzy, which are few, she helps me do a simple stretch. So for the most part we've haven't been able to do much, and have had to take it really slow. I do think that it will eventually help in the end, and will be worth it, but right now it's pretty frustrating.

A few months ago, my dr had me start physical therapy for the shoulder and neck pain i've been having (which she thinks that's from fibromyaglia). My Pt gave me simple stretches to do, like turning my neck to side to side...other things like that. Well to make a long story short, i can't do any of them without being extremely dizzy to the point that i feel like i'm going to pass out. So i told my Pt that and we tried to do the exercises laying down....but i still get dizzy. So we have stopped most of the excerises. there are still a few that i can do without being dizzy. So at my last appointment with my cardiologist, i mentioned all this to him. And he wanted me to get a carotid ultrasound done...which i had done and that came back ok. He said that the physical therapy shouldn't be having that kind of effect on me. He's not sure why my Pots symptoms have been worse, and is still concerned. So i don't know where we're going to go from here. Has anyone else had problems with physical therapy cause of their POTS??

Sorry you're having such a hard time with doctors. I had a horrible appointment yesterday too. I was at the neurologist because of migraines and issues with my arm, and i was trying to explain that my other dr thought i had fibromyalgia. And the neurologist was barely listening to me. And when she finally decided to listen to what i was saying, she said that they don't believe in fibromyalgia and that i don't need to be there. Basically she was saying that fibromyalgia isn't real and that i don't need to be wasteing their time. Like you i was very frustrated and disappointed with her....i wanted to slap her silly. i hope you find a dr that is willing to listen to you and can help you.

Well this week something strange happened to me...my blood pressure went up extremely high...208/164..to be exact. I was shocked cause first of all i didn't think my bp could get that high, and secondly i wasn't feeling that bad. I was dizzy and headachy but nothing out of the usual..at least for me. Anyway my bp stayed that high for about two hours then crashed down to 90/60, then when i checked it a half hour later and it was over 200 again. And it stayed there for about another hour, then finally it went started going back down. I wasn't sure what to do. Usually my bp is extremely low but sometimes it'll go high but never that high. And usually when it;s high i get a migraine and i end up throwing up. The first time it was high like that my dr said to try going off the midodrine to see if it would lower my bp. Well i did that and it did lower it but it went down too low and i started passing out more. So my dr made me go back on midodrine. so i didn't call my dr this time cause i thought he would say the samething. Well i was at the neurologist yesterday and asked my nurse about it. And she said that i should of gone straight to the Er because when my bp was 208/164, it was at a stroke level. She told me that if it goes that high again or gets close to it that i need to go to the er. So my week's been pretty interesting cause of all this. Has anyone else has problems with their blood pressure going this high???

Hey Amy... I'm sorry you've been feeling so bad. I'll be praying for you! about the migraines, my dr put me on Neurontin a few months ago and i think it's been helping alot. I haven't been waking up with migraines everyday like i used to. You might want to look into it or ask your dr about it. I hope you get some relief from the migraines soon,as well as everything else.

My neurologist just put me on Neurontin, to hopefully prevent migraines and help with the neuropathy pain. She's starting me on a low dose of 100mg twice a day and in about a month i'll be on 900mg (300 mg three times a day). I was just wondering if anyone else is on it for the same reasons. And if you are or have been...did it help?? what kind of side effects did you get? Basically what was your experience?