Sue

Hi!! Even though my dogs are not "service dogs" there are some days I don't know what I do without them. My bigger dog "Buddy" is a yellow lab, one hundred twenty pounds!! Talk about instinct, that boy knows the minute I get up if I am not feeling well or not. He constantly is on my left side, (we didn't train him that way either) he is just always there. I think somehow he knows if I go down, thats the side thats going down first. I have trained him with some simple things, retrieving things, shutting the door, he can even bring me the cordless phone. My other dog, Bandit, cocker spaniel is my cuddly dog. If I'm in bed or lying on the couch he's right up there by my side. These two are truly my companions. On a funnier note. If my cocker gets in bed before my husband gets home he actually growls at him, as he doesn't want to give up the pillow Happy thoughts Sue

Hi! Just returned not that long ago from our trip to the University of Michigan Cardiac Heart Center. My husband is so impressed, believe me if you knew him this is so one step forward. He is very involved with my health, and very critical of doctors. Dr. Pelosi and his staff are so knowledgable I couldn't believe it. As I posted before I was looking for someone I could see local that wouldn't have a problem working with Dr. Grubb. Hah!!! He already does!!! How lucky could I get.. He was so patient with us. My husband had a million questions, as he took his time to explain everything as so we now understand things we hadn't before. My last tilt table results, of course were positive with heart rate dropping to below 40. He strongly recommended a pace maker. I wish I would have wrote the name of the device down but unfortunately I didn't. It is kind of a holter but it is new. He has only had it available to him since January. I don't have to do anything even during an episode, it will record because it knows when to record. hmmm. This will help him to determine if a pacemaker would help. So of course my question is, does anyone have a pacemaker with NCS and how has it helped you. Of course this makes me a little nervous, so I would love any info. you could give me. As far as the florinef, he didn't feel any need to add potassium supplements or B-6 as long as I was eating a healthy diet and taking a multi-vitamin. Thanks Sue

I have been on Florinef since the onset of my NCS, quite a few years now. I have been doing a lot of research lately on the net, especially since my last set back and have found some interesting things that I did not know. The one that concerns me the most is on almost everything I have read it suggests that people who take Florinef should also be taking a potassium supplement as well as B-6?? My doctor has never told me that, is anyone else taking Florinef and are you doing the above. Please let me know. I am going to a new Heart center tomorrow/University of Michigan Heart Center and I am going to mention it at my appointment. Thanks Sue

Dear Shayden Hi!! I too am a patient of Dr. Grubbs and know exactly what you mean about trying to get in for an appointment. I saw Dr. grubb about 8 weeks ago now, and have been in the process of changing medications because they are not working on me right now. Even with that in mind. I hardly ever get a return call when I call him, I am usually taking the advice of one of his nurses and don't even know if that is something I should be doing... that is why I too am looking for a doctor I can see imbetween visits. I would rather see Dr. Grubb once a year and have him consult with a physician here. That is a lot easier for me. My primary care physician has been doing this but she suggested a cardiologist because things are getting a little too complicated with her. I have an appointment this Thursday with a cardiologist at the University of Michigan. Am keeping my fingers crossed. I hate going to a new doctor/if they don't understand NCS or POTS they don't give us the time of day. Wishing you lots of luck.. Take care, Sue

Hi everyone!! I am actually starting to feel a little better, it has taken 8 weeks but I am starting to feel a little relief. Now I am dealing with a different one. Since Grubb switched me to Lexapro I have now gained 37 pounds!! and that is in only 6 weeks. I am really freaking out. believe me I didn't need to gain anything. I am also drinking gatorade and somewhat high salt. (I hate salt). I feel like theres not enuf room for me in my skin here. Is anyone seeing a dietician?? Or on some kind of diet you could share? I was reading some posts on another site and this lady has gained 77 on the same medication!!! Is this really the price I have to pay??? I really don't want to go there we have enuf problems. PLEASE HELP!!!!! Sue

I too see Dr. Grubb, and have the same problem. He is so busy you can hardly get an appointment in to see him and when you do it is months from the time you call. Guess that is what happens when there are only a few selected in this field. I can give you a few suggestions though, your primary care physician is suppose to be your MAIN care giver. If she doesn't care enuf to follow through with your care than you need to find a new primary care physician. Mine actually calls Dr. Grubb before she does anything. And they call doctors back more promptly than us. I am in the process of finding a new "NCS" doctor. Dr. Grubb is a little too far and doesn't accept my insurance. At my last appointment I let him know this, he suggestion I find an "Electrophysiologist", specialized heart doctor. and also let me know I could call or new doc at any time. Nice guy.. Good Luck and God Bless Sue

I thought I was on my way back to feeling half way decent, til I woke up this morning!! UGH, I think I am having every symptom all rolled in one. When I woke up I immediately felt 500 pounds on lifting my head. After I finally managed to get up I was so lightheaded, clammy, shaking, sweating, it was awful. I swear every bone in my body hurts today. I sat on the floor with my dog crying for about twenty minutes, til I finally decided I wasn't doing this today!! I managed to get in the shower/kind of like one of those lets hang on the wall and do your best times. But guess what here I am four hours later, hair still in the towel and yep guess I am doing this today. Not as bad but still feeling shakey, and lightheaded, very very tired. and my faithful "Buddy" is right by my side.. It is pouring outside, dark and gloomy. I am wondering if this kind of weather makes our symptoms worse. I have read a couple of posts and it seems everyone has been feeling a little bad lately. What do you think.. Thanks for letting me cry on your shoulders, Sue

I have an appointment with a new doctor at the University of Michigan heart center on April 1st. Since I have had to document things before for Dr. Grubb I thought I would start charting the next two weeks til my appointment. I know I should chart my blood pressure, heart rate and how I am feeling. Is there anything else I can write down to let this doctor know of. Also I am starting to get back out since my last episode/its going on 6 weeks now, but it was bad. and my symptoms are just now really slowing down enuf that I feel comfortable going out. But now I am getting a lot of new symptoms. This morning my daughter and I went to the guitar store there were only 2 people in line before us and I started getting all jittery and had to leave the store. I mentioned light sensitivity before but today it is overcast and I was still having problems. Also it has never taken me this long to feel copable. I wonder if its the new med I am on or maybe I am just getting worse. (He switched me from Celexa to Lexapro). Thanks Sue

Hi Lisa I don't know if this would work for you but in my daughters school you can exchange lunch for a study hour. Meaning you just spend your lunch in the library. That would enable you to take your time from gym/and not have to worry about stressing yourself out trying to rush to the lunch room. Good Luck Sue

Get ready Jackie I'm on my way

Jackie I am so sorry you are having a crap day. I know when I have an apt. with any of my doctors I am looking for some kind of encouragement, light at the end of the tunnel. This guy is neither supporting you or helping you. I would have more anxiety just by thinking about an appointment like that. You need to ditch the jerk!!! He doesn't even deserve the diploma hanging on his office wall. You know all doctors take an oath, I wonder if half of them really listen to what they are saying?? I hope the rest of your day is better. We need our own private island!! That way we could be there to support each other, and a couple of cabana boys wouldn't hurt either Sue

I DROVE!!! I am so excited!! I haven't drove in 5 and half weeks. Listen it was only about 3 miles round trip. But I don't care. I DROVE!!!!!!!!!! This board is the best You guys are so my lifeline and give me encouragement to get pass this. LOVE YOU!! Sue ;)

I think I am now regretting going to Cedar Pointe. Every year for the last hmmm 16 I believe. Sue

Ok, sorry guys but here goes. 1. I sleep so heavy, there have been many times my husband has woken me up fearing that I am dead. Kind of blunt/sorry Do you sleep like this? 2. For someone who sleeps so sound, why do I wake up feeling as though I haven't slept. Often feeling more tired than when I went to bed. 3. Are you numb?? I have numbness on my one side. hand, arm, right side of chest, neck. Sometimes left hand and arm not often. 4. Do your symptoms hit you like a ton of bricks?? I can be half way decent and the next minute I am on the floor!! 5. Concentration problems? I can totally forget what I am talking about sometimes. especially if interrupted by something. 6. My vision is extremely sensitive lately. the white snow and sun extremely hurts my eyes. 7. Have your meds changed your personality?? Or is it the illness?? I have always been a get up and go type/always in a good mood/really hard to make me angry. Lately not so true. My daughter asked me the other day had she done something to make me so angry. I hadn't even noticed I was acting different?? 8. Do feel a heaviness over you. I don't know how to explain this one. 9. When you have symptons, are you spin dizzy?? or walking in a rowboat on wavy waters dizzy?? I am the later, sometimes I am afraid to put my foot down because it feels as though the floor is moving. 10. Does your heart start pounding for no reason?? I am sorry so many questions, I actually have alot more but will only burden you with these right now. I am trying to understand what is going on with my body. It is so hard to understand and I am totally aggravated. I want my life to be as it was and even though I am sure that isn't going to happen I want to try and find somewhere where I can at least function half way normally throughout my day. Thanks so much Sue

I am new to this message board but I want to start off just by thanking everyone who posts on here. For so long I have felt so alone with this illness. I have had so many questions answered just by sitting here reading posts. (I have been reading for apx an hour. lol and pretty wiped out right now. ) I do have a good Dr. I see Grubb in Ohio. He is very knowledgable and sympathetic, but I only see him once a year he is not covered by my insurance so from apt. to apt. so many things come up there is nowhere to turn for answers. Til now, so I just want to thank you in advance and don't be surprised if I win for the most questions asked. Thanks Sue

1. Sue 2. 42 3. Neurocardiogenic Syncope 4. Diag/26 Mild symptoms Now out of control 5. Michigan 6. Symptoms at worst. I don't get spin dizzy, I get walking in a rowboat can't get my balance dizzy. panicky, sweaty, lack of concentration, jittery. heaviness, numbness on right side of body, etc When I have an episode I usually can't shake it for weeks. 7. Symptoms at best. Thats almost funny above in moderation I guess 8. Medications that don't work. List is too long. Mostly beta blockers 9. Medications that work. Well not exactly working but have just switched from Celexa to Lexapro. Also take florinef. Also just started high salt and gatorade. My best medication though is my family.. Agree with post before/the best thing that has happened with this illness is finding message boards. Its hard to talk to "normal" people who just can't comprehend what we feel. I have a great support system but well am sure you know what I mean. I am truly sorry other people feel the way I do but on the other hand is nice to know I not crazy like some doctors say.