Karen M.

danelle Every single cardio doc I've seen over the last 11 years has defined POTS this way. From the doc's in San Diego to the one's here in Tucson. Karen M. goldicedance How can a pacemaker slow your HR down? I've never taken or even heard of the meds you mentioned. I look in to them. Karen M. khudsonwv That sounds like it to me. You have POTS, but you in addition have other abnormal beats. You have two different problems, maybe more? Let me know how the muscle thing goes? Karen M.

Valiant Effort Are you really saying you are on 11 - .1mg of florinef's a day? I'm sure your potassium is tanked. 11 potassium??? What strength? Where do your HR's go to now? What meds are you taking now. No, you are not a whimp for IV fluids. I do it too. Karen M.

danelle I do feel like jello. My arms and legs feel very weak. But, I have to do something or else I'm going to rot, I feel. I just get tapes like "Kathy Smiths" or "quick fix" they have 10 minute intervals. Do what you can, but do something to help you. If only it is a couple of times a week. I get really ill with my Addisons and sometimes I'm out of commission for weeks...but on a good day, I TRY and do something. I'm not that great either. I panic if my HR goes up... so I totally understand. But my EP doc got on me last time stating that I need to help the vagel nerve so she wants me to do something. So, I do my best. That's all any of us can do... Karen M.

mightymouse I have a lot of inverted T waves and was told it could be low potassium and/or just a nothing thing. That there has to be more to the picture than just that. What happened to you during the tilt? When you say a Stress Echo, what exactly is that? I don't know Dr. Grubb? I also have to tell you that me, personally, I don't trust doctors either. I could write a book on this subject. Have you ever had your adrenals tested? You say you had cortisol tested, but I mean an actual stim test done to your adrenals? What test determined the low pressure through the coronary sinus, the cath? Karen M. danelle I don't understand this doctor telling you guys that svt and pat etc...are POTS? If your HR is waking you up at night this isn't POTS. For example I am perfectly fine laying down at night. Then I need to get up in the middle of the night to go to the bathroom, my HR will automatically shoot up to 180-200? All sinus in rythmn. This is POTS. If I was having SVT or PAT these are not POTS. You are on propanolol? I forgot? It is probably posted somewhere??? I understand the higher doses and better coverage. After my tilt, the head EP doc wanted me to take 100mg of altenolol. I have Addisons disease too, and so I run low BP's, I told him he would crash my BP's. He said oh, go for it. Yea, right. So my own EP doc, who was there too, told me to just creep up my altenolol as I needed it. Try and see what 50mg does. I can't seem to get past 30mg. My pressures are already low. I also take florinef, but I have to anyways for Addisons. I am on a slightly higher dose of gluto steriods too, medrol. I think this helps the POTS too. I have suffered a lot with POTS, and have been through much studies, many cardio doc's, and I have never heard of SVT and Pat's being POTS, this is a different kind of autonomic dysfunction or cardiac dysfunction. Maybe Dr. Grubb is saying that you have two different problems, one is POTS and another is other tachy arrythmias. P.S. PAC and PVC's are normal to most people anyways. Karen M.

Merrill I totally understand not wanting to repeat and only having limited energy. You don't have to go looking for stuff on account of me. Relax, having high HR is enough to deal with. Just curious about others...did you have a tilt table test done? Was it on or off meds and what happened to you? What other tests did you have? If it's too much to go in to, it's ok. I'm new to this board. I can't believe I've been living with POTS for 11 years and I just found this board. I have Addisons and Thyroid disease too. Karen M.

From my understand of POTS. It is a normal sinus rhytmn that is escalated upon standing. When you throw into the mix SVT, PAT..etct that is tachacardia's of a different nature. It isn't POTS. SVT and PAT can occur while sleeping and laying down. POTS is aggravated upon standing ONLY, by your hearts own natural sinus rhytmn going really fast. Now, having said that, most doc's are trained to say that if your HR goes over say 150 it is a PAT or SVT, so they have to look at the tapes very closely. They should be sinus to be POTS. Now, PAC and PVC are normal to the normal person. So, that is just a normal thing that can occur. danelle Does is go to 160 and higher ONLY upon standing? Does your HR go above 100 laying down? This is off or on the beta blocker. khudsonwv Does anyone in your family have this problem? The problem with ablations are that they can't always correct the problems and can sometimes make them worse, as it sounds in your case. Why are you so weak? I really do feel for you. I am truly sorry about your case. mightymouse What is inverted? What kinds of arrythmias do you have? What tests did your docs do to come to the POTS diagnosis? Karen M.

danelle That is my problem too. I tried last year to do some water exercises, and I thought they were going to have to call the ambulance. My HR was so high and it wouldn't calm down. I am scared to do anything cardio now, because I just can't manage it. However, my EP doc wants me to do some exercises to control the vagel nerve. I am starting to do strengtening exercises to tapes. I just did 30 minutes of arms, legs, butts and tummy. If I want anymore cardio then I will walk alittle. That is just where I'm at with all my problems. I need to develope more confidence that I won't be rushed 911 with tach. Remember I use to be the aerobic's teacher. Now, look at me? POTS, Addisons and Thyroid disease, and thanks to all that, a newly developed panic disorder. I'm 43 and wow, what life can do to us. Karen M.

Khudsonwv It is my understanding that what you descibe as what your problems were before the ablation and after are not POTS, but some other dysautonomia issues. This is because of all the abnormal beats that you had. POTS is usually sinus rythmn and you had all kinds of different rythmns. You are also having a difficult time now, controlling it. I know you see an EP doc???? What are they suggesting to you now? Karen M.

VeryBlue Before you go to ablation, you need to consider ALL the tests required. If your EP doc won't run them, then find another doc that will. Ablation should be your very LAST resort. You don't want a pacemaker. I would listen to the advise Merrill has given you. Have you had a Tilt Table Test? What tests have you actually gone through? I know a 24 hour monitor, but what was your readings during sleep, like Merrill suggested? You need to give us more data to help you. How much beta blocker are you on and which one? Is that the only med you're on? Karen M. Merrill What are you doing for your treatment of POTS in the way of meds? You say your HR's are still high, how high? You also spoke of abnormal beats...what kind? Karen M.

goldicedance Why does florinef give you headaches? What is your BP on them? That is a normal reaction to Midodrine. Beta blockers can make you tired at first, but at a low dose, should not continue too. What dose of florinef and beta blockers were you on? What does your HR do now? Karen M. ethansmom What is your HR laying down and then standing? What is EBV? Are you sure all you're having is sinus tach? Karen M. Khudsonwv I feel so bad for you. Have you had your adrenals checked? If it's any concellation, my POTS came on, one day, out of the blue while I was washing dishes and my HR went to 165, I too was 6 weeks pregnant. Needless to say, I terminated the pregnancy, thinking it would all get better. Here I am 11 years later and nothing ever got better. I still have it. I wonder about pregnancy bringing it out? I use to be an aerobic's teacher for years at that time, so I was in great shape too. I have since got Addisons and thyroid disease...due to auto-immune disease. So, life is complicated. But, I would take all this over a pacemaker. I have a good friend who is your age, who has one too. For a different reason. I can't believe that with all the ablations that they can't help it calm down. What is left for you? I do have you in my prayers... Karen M.

veryblue I assume a cardiologist has diagnosed you with POTS? What is your supine HR on and off the beta blocker? What is your standing HR, on and off the beta blocker? Do you know for sure if all the beats are sinus in rythmn? Karen M.

futurehope you can e-mail me...let me know if you can't access it, and I will post it. We can keep in touch and I also have a good friend that might be able to shed more light on your situation than me. She doesn't have POTS, but she is very knowledgeable. Karen M. In fact, anyone can e-mail me if they want to talk more about this personally with me. I don't care. Karen

ethansmom I don't think florinef would make you tired. Low potassium would, a beta blocker would, but not florinef. How are you doing now that you've been weaning off of the florinef, is your POTS ok? khudsonwv I am so sorry that happened to you. Now being on the pacemaker, are all your problems gone? Do you have to worry about anything now, or take any meds? Karen M.

VeryBlue I was on propanolol too, that is a beta 2, and it isn't as good for holding down the HR's as say altenolol, a beta 1. I would discuss changing to altenolol with your doctor, you will more relief in the higher HR's. Even though 120 is very uncomfortable, you are not going to die at this rate. You just need to get better coverage in your meds. Get an appt. and change your med, are you on florinef? If not, that will help too. Eat lots of salt. Because you are only 20, age is in your favor with this stuff. I hope you are seeing a cardiologist? Hang in there honey, you just need alittle more adjustment...Karen M. P.S. I know around my menstral cycles my HR's go up...could this be where you're at right now? danelle What dose of altenolol are you on? Are you on any florinef? When you talk about irregular beats, what exactly are the beats? You guys are not alone and it is totally UNFAIR of the medical profession to expect us to not have anxiety about high HR's. I have lived with POTS for 11 years and I managed without a panic disorder until 1 and 1/2 years ago. Now, I have a "post tramatic stress disorder" because of all my tach episodes being out of control. I can't explain why this happened to my brain, but it did. Now, I'm totally disabled over it. I also have Addisons and Thyroid disease too. But, it is totally ridiculous for doc's to think we arn't going to panic with high HR's. Just expect it to go even higher with adrenaline when we panic. Actually we can be given meds for that too. Karen M.

Futurehope Yes, I do have Addisons and Thyroid disease, all my way of Autoimmune disease. I desperately failed my stim test. I didn't stim at all. What they are looking for in a stim test is when you are injected with the cosyntropin that your adrenals have a jump in cortisol. For example I was 7.5 baseline. After stim, 30 minutes I only went to 7.8. I should of went into the 20's or 30's. So it shows that my gland was gone. ACTH is a stimulating hormone from the pituatary. Normal is 9-52. Mine was 1250.0 so you can see that it was very bad. I also have a positive adrenal antibody that shows that the adrenals were hit with autoimmune, like the thyroid. I belong to an Addisons forum, you can visit to ask questions...it is www.healinglight.com or another one is www.hopeoasis.org Let me know how you're doing. If you go to those two sites, I'm usually on the healinglight one more. Otherwise, hang in there...there has to be an answer. I also wanted to mention that even though I'm being treated with steriods, Medrol and florinef, I still have POTS and have to be on a beta blocker. I still struggle with it from time to time. So, adrenals are still not the total answer to my POTS. Karen M.