sfrnklin

Hi guys, I guess I'm one of the lucky ones. I have never waited more than 1-1 1/2 hours for Dr. Grubb and never longer than 15 mins for Bev. I love them both though and would probably not mind waiting that long. I ALWAYS have early morning appointments though. I don't know if that matters or not. It has to do with where I live. I have a 7 hour or more drive, so they always give me an 8 or 9 AM appointment. Maybe that helps. Who knows. Good luck with your appointment. Bev is great and just as knowledgeable as Dr. Grubb. He will stop by if he is there just like someone stated above. If he's not in, it doesn't matter, she knows it all too. Susan

Bamagirl, I had fib/flutter and had an ablation in October. I have POTS. It did not cure my POTS of course but it did take care of the constant palpatations I was dealing with on a daily basis. Dr. Grubb did mine. It took several months for me to start feeling better, probably mid December, but I am glad I had it done. It made me feel worse at first, because it aggrivated my POTS (which is normal they said). Then when things settled down, I feel much better. I hardly ever have palpatations now and if I do, they are very mild and don't last long at all. I hardly even realize they are there unless I am laying very still in bed at nite ready to go to sleep. I hope this helps. You should look into it. A fib is dangerous. Your heart just sits there and quivers and causes blot clots that can be thrown out into your system. I hope they have you on a blood thinner of some sort. Sincerely, Susan, RN

Hi all, Mine drops low in the 40's at nite also. I wore a King of Hearts monitor for a month and the monitor co. was calling me to wake me up to see if I was OK it was dropping so low. Also, Donna. Are u glad u got a pacemaker and do u feel better? Just curious? susan

Dr. Grubb told me that after my ablation there was a certain percentage (forgot the exact number) that I could go into heart block (complete, 1st degree, or 2nd degree) and would have to have a pacemaker. Luckily, after my ablation I am NSR to ST. A long time ago for NCS and POTS they used to use ablation to totally get rid of your SA node and you would have to have a pacemaker. I have a friend they did that too, but they don't do that certain procedure anymore. This is all I really know about pacemakers that is related to POTS. sfrnklin

Cardiactech, Yeah, I hear you. I am super flexible and I am almost 40. I have been all my life. The EP study thing. I understand your frustration. I have been reading many of your postings and feel your pain. I spent over two years begging cardiologist after cardiologist and EP doctor after EP doctor to do an EP study on me with no avail until I went to Dr. Grubb and that was his first plan of care for me. I did not even have to ask him. That was his idea. He gave me all the answers to my burning questions. Like my exact diagnosis, how I got this stupid disease (I was actually born with it) which I would have never even thought of, and how to take care of myself. None of the other doctors really knew what to do with me. It has been a rough journey for me and I am sure for many people who suffer with this. There are just too many MD's out there who do not know enough about us. Good luck and keep pursuing that MD that will finally give you what you want. If you can't find one, try Dr. Grubb. I'm sure he would. It takes a long time to get into to him and I have to drive over 8 hrs. to see hime, but IT WAS WORTH IT for me. If you ever need anyone to talk to, just PM me or write me here. I understand what you are going through. Susan

Cardiactech, Sorry I am responding so late, I had to work yesterday and got home late and was too tired to internet it. Dr. Grubb says "the look" is: Very tall and slender which I am 5' 8", blonde or fair haired can even be redish, pale velvety skin. The skin is very velvety and soft due to they very tiny nodules. Hands and feet are NOT big, they are very small and slender. My wedding ring finger is a size 4. My shoe size is a 10 narrow. I weigh 130 lbs. I hope this helps. Not everyone who has EDS has "the look" though. He just said I did. He knew I had it the minute he walked through the door on my first appointment before he did any beighton or exam. Susan

Hi, I have it also but my MD, Dr. Grubb, just did the Beighton Scale and an examination. I also have spine involvement. He said he could tell when he walked in the door and met me the first time for my initial visit. He said I "had the look". No genetic testing was done. He said it was not necessary. I was born this way, period. Good luck in your research. Susan

Hi Kim, I am on Wellbutrin XL 150 mg daily and it works for me. It has low sexual side effects, etc. It is an MAO inhibitor. I see Dr. Grubb for my POTS and he told me there are three of these types of drugs he likes to use for POTS: Wellbutrin, Effexor, and Cymbalta. They have vasocontriction type action that helps keep the blood from pooling in the lower extremities and back to the heart where we need (or at least decrease the pooling that we POTS pts. experience). It has helped me and it has helped keep my heart rate down. But Wellbutrin is not for everyone and you will just need to try it out and see how it works for you. There are many alternatives out there. Good luck and I hope you find what you are looking for. Susan

Healthcare these days is VERY frightening! This is coming from a Nurse who has POTS. I am still working, although part-time. I see it everyday even with people who have good insurance. They get D/C'd for surgeries the same day that once upon a time required an overnight stay. For my EP study, If they had NOT ablated any arrythmias I would have gone home the same day with two groin holes and one neck hole with only pressure held for 20 mins. and a small drsg. on the sites with an 8 hr. drive home. Now tell me how that is patient advocacy? Luckily they ablated two arrythmias and I spent one nite and then had an 8 hour drive with all those holes in my body and an increased risk for blood clot and had to get out of the car every two hours and walk around. Take care of yourself now that your gallbladder is gone and if you have the slightest problem, get on the horn and call that surgeon! Susan

Jenwic, You poor thing, I've had pots for 5 years and I'm still not used "to the racing heart thing" from POTS. I don't think anyone really gets used to it. As for Zoloft or any SSRI's, I have tried Zoloft and I did not like it for myself for a number of reasons, but I do like Welbutrin for myself and it also has a Norepinephrin effect that actually helps POTS pts with vasoconstriction to help push the blood that pools in the lower extremities back up to the heart where as Zoloft does not. I personally also have less side effects with Welbutrin. BUT, everyone is different and you have to try things out to figure out what works best for you. Talk to your MD about your feelings and good luck with your journey. sfrnklin P.S.-The other SSRI's that help with vasoconstriction are Cymbalta and Effexor.

Cardiactech, My first TTT I was given nitro subling. and had a positive test and was put on beta blocker. Years later, my second TTT, I was given Isopril IV while upright and my test was negative, but I STILL have POTS. I don't trust the results of TTT's. My dr said lots of things can cause the results to be false positive and false negative, etc. I wouldn't repeat it, unless you just fill it is absolutely necessary. I absolutely hate TTT's. Because they are not 100% accurate all the time, I refuse to take anymore. Sfrnklin

Just curious...new to this site. I have POTS but am wondering if a lot of people with POTS have to have their gallbladder out eventually? I am having lots of GI problems in the past few weeks and just had an Ultrasound of my gallbladder today and was put on Prevacid and Bental yesterday to help me out. Don't know my results yet. Just curious. Thanks Sfrnklin

I see Dr. Grubb and the previous reply pretty much sums it up. He is absolutely wonderful. I was asked plenty of questions by his nurse. Then he spent approx. 2 hours with me taking B/P in various positions and working me up for JHS (joint hypermobility syndrome) which I have and going over a slide show that goes in depth about POTS and autonomic dysfunctions and your body. He explains everything in layman's terms so you and your spouse or family can understand. He told me all my symptoms without me ever saying a word. He gave me a plan of care, etc. I went back 3 weeks later and had an ablation. He readjusted my meds, etc. I feel much better. He is very hard to get with, but you can always get in touch with his NP Bev and see her or talk with her and she communicates back with Dr. Grubb. To help with expenses, if you stay at the Hilton Hotel right there on the hospital grounds, you get a discount. The room is $59/night for patients, you just have to tell them when you make reservations. It is an 8 hr drive for me, so I always have to stay overnight. The hotel is very extravagant and has a 5-star restaurant inside, so the rate is very affordable. If you need more info., please feel free to contact me and I will get you more info such as numbers to office and hotel, etc.

I am pretty new to this forum but not to POTS. Had since 2002. I have had many TTT's. My only positive test was the very first one that I was not on any beta blockers at all. Once put on beta blockers, all my future tests have been negative. Even though you stop those drugs for 24 hours, my cardiologist and EP says it can take much longer for them to clear your body and everyone responds differently to them and you can get false readings. To make a long story short, just because my others tests were negative, I STILL HAVE POTS! Keep on truckin till you find that one true doctor that believes in you and he/she DOES exist out there, you just have to find him/her. I love my doctor and I travel over 8 hrs to see him. His name is dropped a lot on this forum and he takes a long time to see, but he is very worth it. He spent over 2 hours with me on my first appointment, listened to my every word, told me my symptoms before I even said a word. He was God send. He even mailed me a book a few weeks later titled "When Bad Things Happen to Good People". Research long and hard. I did and I found the one.

I have good days and bad days. Most days I feel mad at the world. WHY WHY WHY WHY?????????. Some days I cry, cry, cry. Other days I feel, "I'm going to beat this and not let it get the best of me." Basically, I really feel an emotional wreck with POTS. I even take an SSRI for the vasoconstriction. Some antidepressant, hugh?

Have been on Coreg 12.5 mg BID since March with no adverse side effects whatsoever. The first few days it was started, my blood pressures were lower but then rebounded and if you read about this drug that is to be expected. Fortunately for me, I was in the hospital when they decided to start me on it and my blood pressure was being monitored closely. My POTS was out of control because my previous BB quie working. Let me know if I can answer any more questions.

Ladies with Joint Hypermobility Syndrome are tall and thin. Many ladies POTS is secondary to LHS such as mine according to Dr. Grubb.

Cardiactech, That is GREAT!!! I am new here and before I registered I have been reading some of your postings. Before I got hooked up with Dr. Grubb, my PCP did more for me and my tachiness than my local cardiologist and EP Dr.s, so I know how you feel. There are great doctors out there, you just have to keep on trucking and searching for that special one. I too have really high heart rates when I work but not when home lounging around (wish I could do that all day). I had an ablation on Oct. 23. They ablated A-flutter and AV Node Re-entry tachycardia. So far no real change in my POTS status. I am still the same. I dont have as much palpatations as before, but that is the only symptom it really got rid of. It was supposed to make me feel "a whole lot better" but it did not. I was like you ....begging for an EP, etc. Well, I got one and not much came out of it. There was something there to ablate, but it did not make a significant difference. I am not saying to give up on an EP, because technically I had something big to ablate. I am just letting you know not to get your hope up for an all cure like I did, because you might just get let down like I did. Good luck to you and keep pushing for what you feel is right. It took me 4 years to find someone to do an EP study on me. Susan f.

I was originally diagnosed in 2002 by a local cardiologist (EP) dr. in my hometown, but he could not tell me how I got it. I was angry and in denial for many years wondering how I could be struck down with such a debilitating disease. It was nice to be hooked up with a specialist in this and finally told that I did nothing wrong and that I was born with it and that it was secondary to JHS (Joint Hypermobility Syndrome) and that it lied dormant and popped up in my 30's like the case of the Wiggles guy, which it usually does for some people that have it genetically. It doesn't make my life any easier, but it answered that burning question I had for so many years. Thanks for the warm welcomes. Susan f.

Hi guys. I am new to this site, but not new to POTS. My POTS is secondary to Joint Hypermobility Syndrome. I'm like rubber girl (hehehe). I see Dr. Grubb in OH. If you see him then you are familiar with his chart that shows this. If not, basically, my veins are real pliable and do not vasoconstrict very well and keeps all the blood in my lower extremities when I stand. I've read so much interesting stuff on this site. I hope to make many friends here and share and learn much info with you guys. Later.