Lizzegrl

Heee.. I keep getting turned down for a TTT when they try to do a repeat. My last one was over a decade ago. They won't do it because even the poor man's TTT is soo goofy, and the nurse inevitably calls the doc in charge who says.. Nope.. Not gonna risk having to code you for a repeat test. They say everything else is so diagnostically dead on they will skip the T3. ;0) There is some other CT scan with induced heart rate increases that they refuse to do too after my resting rates were so high. I do remember getting sick as heck when I had the T3 many years ago. uuuuggggghh

I always have external hand tremors of late, and pretty much have been told I twitched some part of my body constantly since birth!! LOL. I"m now 41 and a doctor finally tells me ohh yea, that is from POTs too. ;0) K well, now I know that.

Way back when I was on beta blockers, I increased my exercise dramatically, but still gained an amazing amount of weight. Like over 30 lbs in 4 months. At the time, it wasn't too awful because I had lost so much previously that it just put me in a heavy normal area, but beta blockers can have a strong impact on weight in my experience. I did gain back a ton of muscle that had wasted, so it was a trade off. I road biked 10-20 miles a day when I could finally exercise again! I tend to overdo when I exercise, so be careful of trying so hard you end up injured, like eric said. I am about to start a low fat, low sodium diet makeover myself to try to rein in some of my steroid weight gain. That is the killer for me. Any time I am on them for more than a week, it is like 10 lbs instantly regardless of food or activity level. My blood sugars also go crazy, so that doesn't help. The journal idea is also great! I do it for money and have in teh past to remind myself of all those little forgotten things I've eaten. It does help.

Actually Eric that is how Dr. Grubb explained it to me..lol When the insurance companies and the medical community can all come to an agreement and more complete understanding, it might actually be better characterized as several different conditions/disorders but right now, they won't pay for things if they break it down too much, so POTS it is!

I am sensitive enough that when I'm having a bad day, I can't sleep on my left side at all or I get palpitations. There are just some nights that I know I'm not going to sleep, so I now just get up and work on doing something constructive if I know it is going to be one of those nights.

That is great Az girl! You will love Dr. Grubb I'm sure. Be prepared to wait, just a warning. They always always run way late, but it is worth the wait. ;0)

Some medications like Steroids can increase your blood sugar levels. Conditions like PCOS can make it more likely that your levels are higher - it messes around with all kinds of levels in your body. These are two off the top of my head that I've had personal experience with.

I actually did the same darn thing yesterday! Closet cleaning. I have no WAG but I also get it when I crouch and try to wash my hair under the tub faucet. It actually hurt last time I did it - mule kick feeling. Won't be doing that again soon. ;0) Funny - with the arms up thing - I changed a lightbulb in the kitchen and had to stand on a chair. It took forever to get the fixture off, and as I stood there, I thought to myself - "this is a silly a** thing for a chick with POTS to do!". So, I took a rest, finished that one and called the super for the one in the other room..

I've had times when I could exercise fairly well, even if my heart rate was considered too high. I felt ok working out a few times a week, but i had to be careful because I would tend to overdo it and end up feeling awful for a week. It goes through phases with me. I try to work out a bit when I'm doing better because I know that I may not be able to do it all that much. The past two years, my condition has worsened and the docs have said only very moderate exercise and never alone. Last week, the cardio told me to be very careful, rest and not to exert myself until after I have my ablation because my heart simply is overworked right now. Perhaps after they get is slowed down, I may be able to get back to one of those good phases, but who really knows? We are all so variable I think it does make a difference what type of dys./POTs we are dealing with each day. I really don't think that the normal conditioning rules apply to us. We aren't normal, physically, so how can you apply standard rules and guidelines? Ironically, our bodies are already breaking the conditioning rules. ;o) Firewatcher - That standard calculation is how I finally got the point across to my sister that POTS is something I deal with every single moment. She was telling me about her trainer and target rates and I told her mine was much higher just sitting. She finally understood that - wow - that could make ya tired. hehehe When Dr. Grubb used the same type of example to explain, she had a light bulb over the head moment!

I tend to go with Dysautonomia - or say an ANS disorder and if they ask more, I tell them what the ANS does and that mine is broken. ;0)

Flop, I consider myself lucky that my doc is an instructor and professor who teaches other EPs how to implant pacers and monitors, so he was able to get me one of the first of the new line transomas. I joke with people that my heart is blue toothed! Actually if I am near a bluetooth wireless network it can also send out to the company! I don't ever have to download anything. I carry my hand held in my purse and have a box plugged in next to my bed which downloads when I walk in the door. I can push the button to record, but the episodes that have told them the most information, I did not feel at all so I would not have ever known to record. It was fascinating to talk to my EP to discuss how my rates changed during the night as opposed to non-potsers and what happened when I spiked and had no clue. It is funny, when cardio people find out I have the new Transoma they get excited like it is a new toy they wish the could play with!

My sister asked Dr. Grubb at my last visit if POTS was why I always had blue or really pale skin, particularly in my hands, and he said yes. It is circulation that isn't working properly moving blood and oxygen, and pooling that makes our color funny. My joints get really blue at times.

In my case, I've found that the best combination is a combined EP/cardiologist office. My EP that manages me locally and referred me to Dr. Grubb does all my EP studies and ablations (I do have multiple arrythmia issues) and the cardiologist manages the rest of the issues. I see Dr. Grubb every few months and they communicate all information to my cardio/ep office for monitoring and management on a day-to-day basis. This has worked really well, since if it is an issue with meds or my BP, Dr. Grubb really can't and shouldn't manage that long distance. I do make sure that everybody gets copies of all reports and that my medications are up to date everywhere to make it easier for them all to keep informed. That might be something to think about when searching for a doctor to follow your case. It didn't work very well the last EP doc I saw, However. he was completely not interested in dealing with a complex case that he couldn't ablate and be done with, so I found one that was willing to work closely with other docs. In the end, he is the one that actually diagnosed POTS and sent me to Dr. Grubb. FYI, my POTS tends to be much more cardiac in nature than many of you, so I've never actually seen a neurologist.

HI Rue, Don't know if it will reassure you or not, but my bp and hr are always in that range or higher and it has never been a heart attack. ;0 If your monitor has automatic detection and there was something going on, it should have recorded it if it was within recording parameters. It all depends on your monitor type I would guess. Why not give the doc a call and let them know that you were feeling really bad at this time, so if something shows, they will now be aware? That way, you will feel better that someone is gonna look at it. I do understand that feeling, however. There are times you just can't tell what is the cause and that makes it even harder to deal with! What ever is the cause, it doesn't make it any less scary. Feel better!

I have major flushing issues from steroids and what i suspect is roseacea, so I wear everyday minerals makeup. It really helps and doesn't irritate my skin at all. They are very reasonable compared to some of the other mineral make ups and it lasts forever. I tried pur minerals but it sometimes make my skin itch and had a slight odor. Everyday has none of those issues and has a million colors to mix and match to get perfect colors. The brushes they sell are good too. I get scratches from others or rashes and these don't bother me at all! If i try wearing liquid foundation nnow, it is awful - break outs, splotches, dry spots. all fo that is gone with the everyday minerals. The also like to give out freebies and special treats which I like. Example: I ordered a kit with like 12 items, and I got two freebies, free shipping and I've been using it for over a year now! for 60 bucks that is great!

I have a Transoma monitor. It has been a God send. It records constantly and transmits automatically so that I am constantly monitored. If anything shows up that is alarming, they or the doctor will call me. They even sent someone out to my office once to reprogram it and give me a new hand held device when it started alarming. It has also allowed the doctors to figure out what the my heart is really doing. My episodes were so varied and changed when and how they happened that it made it very difficult to pin down. When the last ablation couldn't be done, they put in the monitor. It was fairly simple as a procedure. I was in the EP lab, and they just did the prep, and incision with a bit of local, squeezed it under the skin like a pacemaker with the wires going to the heart. I was not allowed to drive for a week, and no lifting so that the wires didn't move before healing, but it was really easy with a 2-3 inch incision about a hands' width below the collar bone. I have a hand held thing I can activate. The settings are set to the parameters of the patient and they can adjust it when needed to not record under or over certain levels and conditions which is nice. For me, they have to have it set higher because my rates at rest are way too tachycardic for most people. I got the implant last May, and I am scheduled for an ablation on September 10th that will hopefully help me get more active and be more safe! The monitor has done its job already, with no need for constant connections to a holter or patches that destroy your skin. I have absolutely nothing negative to say about mine and am so very happy that a got it. Even if they can't get the arythmia under control with the next ablation, at the very least, it has meant that I have a sense of security, knowing that I don't have to worry about what I am feeling, or writing down times, what happened, etc. It is all being tracked, and will transmit so that if anything really bad has happened, they will know, and let my doc know to call me. In fact, by my first post-surgical follow up 10 days later, my doc. told me he had already received 3 tracings from the company to look at and ok. They actually send them directly to his blackberry if it is suspect and he looks at them. If he has questions the office calls me and checks the next day. Feel free to PM me if you have more specific questions. Here is an article about the device I now have. http://www.medicalnewstoday.com/articles/138839.php

My rates and rhythms are goofy too. My 3rd attempt at an ablation is coming us soon, but in my case there is the whole genetic thing with rare arrythmias in addition to POTS so that is why I have them. It can be hard for the docs to work thru all the mess of POTS and the other cardiac crud that it hauls along with it, but IMO, it feels different when it is being caused by the different source. I feel like I can tell when it is a more potsie episode vs. a purely cardiac event. For me, it has gotten to the point that the pots stuff is kind of ignored, but when I'm having a more serious event, I can't ignore it. It feels very different.

No such N.E. track for me. Mine comes directly from family that came from Spain before 1900. We have that much family hx of sudden cardiac deaths traced, it is a direct line from GGF, GF and sibs, F, Uncle, etc.

I get bruises from wearing flip flops! It is the funniest thing. So, I do not wear them. ;o) It makes other people freak out to see them, not me. I'm very very pale so they stand out a bit.

Speaking from my own experience, Dr. Grubb wants me off Effexor. Your friend might want to check with him to see how he feels about her going on it, if it is another dr. prescribing. Just a thought!

I like this diagram. Dr. Grubb gave it to me in a packet of information when he diagnosed me. I keep a copy to remind myself that there are somethings I have to be careful with.

At the time, the symptoms of what I now know is POTS were pretty stable, so I can't say whether it helped or not. I was on a beta blocker and was pretty freshly post ablation so my heart was feeling pretty good. The rest of the symptoms were also in good shape at the time or could have been from the immune system issues so there is no way of really knowing.

"I really feel that if I had not had the first ablation, I would not be able to work, live somewhat a normal life, and be where I am today. Yes I still have the irregular heart beat but I know that it won't keep me from what I love doing. It has not crippled me yet" April, that is exactly how I feel! I have really no regrets about the first ablation because I lived a normal life for several years. I had really good times, did things I needed to be able to do in my life. I also know that back then, things were really not advanced enough to say an ablation was not wise. It is what it is and I'm ok with that part of the process. Now, there is another part that has to be addressed. It is scary as heck and frustrating now, however. I do agree with Poohbear that it is such a big decision you should go for another opinion, if only to feel that you considered all of your options and made the most informed decision. I had a similar conversation with Dr. Leiberman regarding my desire to get a pacemaker and just get it over with. He said exactly what Poohbear has said. I wanted them to blast away and he refused. ;o) It sometimes doesn't work out in the long run when you just start blasting away all the nodes, so every other option should be thought about first. It really has to be a last resort, and that is why he sent me to Dr. Grubb. I'm not quite at the point that you are yet, so your decision must be more difficult. I feel for you. Having a support network is so important and that is something to be very thankful for. I'm glad you have such a strong one.

I am sort of in the same position. I had an ablation a decade ago that worked for a while on the worst of the symptoms, but when it started to get worse again, i started seeing EPs again to get an answer. Dr. Grubb was who I was referred to as the closest and the best in the area. perhaps I could have tried Cleveland Clinic or Mayo which are both difficult to get into, but in all my research and in the opinion of two of the best EPs in Michigan (both EP professors) recommended Dr. Grubb. When I first saw him, he also said that perhaps if I had been diagnosed wiht POTS before the first ablation, it might not have been done. but now that doesn't matter, it was done. My arrhythmia issues are back and getting worse. Now, the primary goal is to get my rate down and quit the funky rhythms if at all possible. The first line courses of meds don't work on me either, so we are back to the do we ablate again or not? stage I really trust Dr. Grubb, after having experienced several other EPs, and their approach to patients and diagnosis. He is miles ahead of them. My current EP in Detroit (Dr. Randy Leiberman) would do the ablation if they decide, but he and Dr. Grubb are still deciding if that is a risk worth taking or not. He sent me to Dr. Grubb because he said he was really the best on this subject in the country. Do you have a local EP that can collaborate with Dr. Grubb to sort of get a second opinion or at least reassure you that you are making the right choices/

I have spent a great deal of time in Miami, and while there may be great doctors in northern Fla, the weather in Miami is killer if you aren't heat tolerant! I basically didn't leave the house for days at a time because I couldn't even drive to the store in the heat. Air conditioning can only do so much and you have to be outside at some point. The heat and humidity in the winter was great, but 7 months out of the year it was awful! It felt like living in a sauna with rain every afternoon to steam it up. I was exhausted constantly and my sister hated that i couldn't function, which was a big issue. We did nothing even when it was beautiful to look at, because the heat made me so so sick. Just my experience. Loved the city, the beaches, but I could only look. Could not live.