LisaColumbus

Kits if you are having any chest pain or shortness of breath or an unproductive cough I would call your doctor asap.

The biggest positive for me was finally getting my priorities straight, After being a workaholic for 20 years I have finally realized that my family and my health is the top priority. I have also finally begun to be able to accept help from others where as before I would never ask for help with anything, I viewed it as a weakness.

I guess I'm either fearless or stupid but I don't worry much about germs. I figure there are so many germs out there they will catch me one way or another.

I dont have any advice Ernie, I just wanted to offer my condolences. I wish you peace with whatever decision you make.

Sorry to hear you had such a disappointing trip. I hope you can get back in to see Dr Grubb ad get some help. Hope you feel better soon

Hi Mary, the ablation was done here in Columbus at Riverside. I know I need to keep the faith but it's getting difficult. The doc has said I have exhausted the various medicines available. And now the ablation didn't work, doesn't seem like there are many more options left.....Just frustrated I guess

Well it seems as if the stand in Doctor was right. This morning when I stand my heart rate is going through the roof once again. So it seems as if it didn't help at all. It's disappointing but I'm glad that so far I don't seem to be any worse. Darn, darn, darn I so wanted to go kayaking again.

Hi all, I'm back home. Thanks for all the well wishes and good thoughts sent my way, it is appreciated. The procedure wasn't nearly as bad as I thought it would be. When they wheeled me back to start prepping I was shocked to find that my doctor had been called away and her partner was going to be doing it. Before I would let them start anything, I demanded to speak with the doc who would be doing the procedure. I explained to him that I have "Severe pots" and that I was already uncomfortabe having ablation performed due to that fact. And that if he found any type of problem I did not want it ablated if there were any risk of it affecting POTS. He took the time to listen to my concerns, he also told me that he did not feel that this ablation would help with the POTS symptoms and that he would fully consider every move he made. With that I let them begin. I was completely out for the first three hours. I woke up shortly into the third and was rather uncomfortable because they had mile heart going a million miles a minute. At that point it was fluctuating betwwen 200-300 bpm. So they gave me more meds. They did a great job keeping me comfortable. On a good note, the area they did ablate was on the right side so they didn't have to puncture the heart, which greatly lowered the risks. It took them quite awhile to recreate the abnormal rhythm and they just about gave up. As it turned out, I had three abnormal rhythms; atrial tachycardia, atrial flutter and the AV Node Reentry Tachycardia. They ablated the AVNRT. At this point I haven't really noticed any changes but then again I haven't been up and moving. The one thing I did notice is that I am not having any palpitations, I had been having excessive palps for the past few days, so hopefully that is an improvement. I'll keep you posted as I start to move around more. Lisa

Wish me luck, 2 hours to go. Here's hoping that this isn't the worst decision I have ever made. Lisa

Hi Sue it happens to me too. At times my toes look dark bluish gray.

Columbus Ohio here

Thanks Danelle and Morgan. I haven't had the ablation yet. It is scheduled June 3rd. I wanted to wait until after my sons graduation...just in case. I'm doing ok right now, I'm sure I'll be a basket case in a week or so Hopefully this will give me my life back, but being the pessimist that I am....I doubt it will do the trick

Yep, it's a family thing here too. I have it, my sister has it, my half-sister has it, my mom has it and 2 of my nephews have it. My 3 kids all show symptoms but haven't been tested yet. My younger sister was the first one diagnosed 12 years ago.

I am just bumping this because I am hoping someone knows about hyperkinetic heart also

I used to try to find a correlation also. I finally gave up. I do know that hormonal changes usually make it worse, but again thats all relative. I have been in the pots hole since January of 2003, with the help of Adderall and Florinef, I was able to climb out enough to manage for about 6months. Then I struggled for another 8 months or so of working very part time and spending the rest of the time in bed. I am now back to not working. The highlight of my day is being able to vacuum on occasion. I may have one or two good days a month where I am able to get out and go grocery shopping, but then I will come home and be totally wiped out. Hang in there, I know it stinks.

Wow. I have already heard back from Dr Grubb. I can't believe how quickly they got back to me. According to Dr Grubb, this type of ablation is fine and will not cause problems with POTS. So, it looks like I will be heading in that direction. That is, if I can make my scaredy cat self go through with it. Deep breath

Hello all, I am back from the cardiologist and sure enough she recommends ablation. She says that I have POTS as well as SVT caused by an extra electrical circuit-left sided bypass tract. She says by ablating this extra connection it will not effect POTS because it isn't in the upper chambers and that this problem is a totally separate issue that has no correlation to POTS. Apparently this circuit is in the left side of the heart, so they would have to enter through the right side, puncture the central wall and work their way to the left posterior side of the heart. I have a call in to Dr Grubb, hopefully I can get a second opinion from him. She did say that if I have this done there is a 95-99% chance that this will get me back to a fairly normal state and that this problem has many of the same symptoms as POTS. She said I may be surprised at how many of my problems are caused by this other disorder and not necessarily caused by POTS. So that's the latest news. Lisa

Hi there, I also have bradycardia. Mine is when laying down and sitting. I typically am in the 35-55 range until I stand up, then I jump to 130-180. The chest pains are annoying, but the shortness of breath and need to cough is what bothers me most about the bradycardia. What area of the country are you in. Welcome to the boards, these people are awesome.

Hi Steph, The doctor I am currently seeing is an arrhythmia specialist at Riverside, Dr. Arshad. I was originally a patient of Dr Hummel (our family has not had good experiences with him), I then was referred to Dr Grubb (who I adore), when Dr Grubb became ill I went to the Cleveland Clinic hoping to have a backup doctor. After getting testing done in Cleveland, my primary care physician was frustrated with the lack of help he was getting for my follow up care and wanted to me to find a local doctor. So that is how Dr Arshad came into the picture. Are you familiar with any of these docs? I would love to talk with you in more detail about your experiences with local docs but I'm not sure what the protocol is on the boards as far as relating negative experiences.

I do have a lot of other symptoms. In addition to the POTS I was dx's with chronic fatigue syndrome. So I am not sure which symptom goes with which lol. I have extreme fatigue, I can only be up an hour or two before having to sleep again. Typically sleep 12-18 hours a day. Daily headaches and migraines at least 3 times a week, IBS, dizziness when standing but I only pass out 4 or 5 times a year- I can feel it coming on and can usually get down before I go out, painful hips, confusion, memory loss, hot and cold flashes etc. I only get tachy when sitting or standing, when laying down my heartrate stays between 35 and 45. Heck if it all confuses me I don't know how the doctor can figure it out! If they do an EP study before ablation, can they tell for sure if it is cardiac or POTS?

Hi all, I mentioned that I recently found a doctor in my area that seems to understand POTS. At the last visit she put me on Midrodrine and also has me on a 30 day event monitor. I have been on the monitor for a week now. Today I got a call from the nurse at the doctor's office. The doctor has reviewed a weeks worth of recordings and says she knows what the problem is and wants to see me Monday morning. All the nurse could tell me is that there is a problem with the reentry pathway that causes it to loop. The dotor says she knows how to fix this. Has anyone else heard of this? I'm going to be a wreck all weekend thinking about this. I'm already sure that she is going to suggest ablation...I'm probably just paranoid. How else would they "fix" this? If she does suggest ablation...what then? I have read posts here saying that ablation is the last thing that should be done. Aggghhh I wish I could just shut my brain down until Monday! Lisa

Thanks everyone for the support and understanding. I guess I will need to start "interviewing" I appreciate all of your comments!

Hi all, I'm feeling halfway literate today and felt like rambling. After going to Cleveland Clinic I was put back on Florinef and they added Lopressor. I had horrible daily, all-day migraines on these meds. I called Cleve Clinic, they said to continue taking even though I have a history of not tolerating beta blockers. 2 weeks later I ended up in the hospital, heart rate had fallen ridiculously low. Hospital and my regular doctor said absolutely no more beta blockers. My regular doctor was frustrated with not getting any help from the specialists. He said they just send him test results but don't help him with options to treat me, so we agreed that I needed a local cardiologist. So I found one in my area that actually seems to understand dysautonomia. After reviewing all my records, she stated that I have pretty much gone through all of the possible medications but put me on midodrine as a last option. I've been on that a week now and so far have seen no changes at all. She also had me do the 30 day event monitor again which has been pretty interesting. When I am laying down my HR is typically 40, when I stand it goes to 160-180. And they wonder why I feel cruddy lol. The one thing that the cardiologist mentioned, and the one thing I am really struggling with, she wants me to see a psychiatrist. She said I need to talk with someone about how to cope with drastic lifestyle changes. I am not comfortable with this. It took SO long to get the correct diagnosis, and so many frustrations of doctors saying "Are you sure you aren't depressed". I'm a little bit scared to go see a shrink and go through the depression battles again. I also am going through the disability insurance process right now also and dont want any of that to get skewed. Do any of you see psychiatrists? Did it help you? How do you find a good one that understands what dysautonomia does to you? Does anyone in Ohio (Columbus area) have a good recommendation? Thanks for letting me ramble..... Lisa