New Cardiologist

[nmorgen]

Hi eveyone I thought I would share with you a little of what was said during my appointment today.

I finally got an appointment with a cardiologist who speaks English. He basically just spoke with me today and we didn't do any kind of exam or anything like that. Completely different than what I'm used to. Anyway, I tried to explain to him about the POTs diagnosis and he is going to try and get copies of the tests from my old cardiologist back in the States. He told me that I need to start working out at least 30-45 everyday. Intensive cardio. I actually started thinking about the Dr Levine exercise thing. Now I'm thinking that he thinks I'm just deconditioned. He also told me that he wanted to modify my diet. It sounded like the blood type diet. He told me that he would like for me to come off of my medicine. I know that exercise helps and I'm sure I could mprove my diet. Do any of you really think that this could be the problem? I just need more exercise and a better diet? I'm willing to try, but I'm not willing to come off my medicine.

I don't know, it feels weird going to someone who doesn't seem to actually believe that this is a real problem. He told me that he knows I don't feel well, but that i'm not really sick. It can get better and I will have a normal life. I think that would be fabulous! I wish that I could jump on that band wagon and it actually happen. I'm just a real skeptic I guess. Have any of you tried this and actually felt better or been able to reduce your medicine?

Thanks. Thoughts and opinions are appreciated.

[nmorgen]

LOL, sorry I didn't run spellcheck!

[sue1234]

I'm curious--what kind of diet changes did he want you to do?

I wish doctors would tell us the exact science in why they think just excersizing is going to fix our POTS. I'm like you, I think they just think we're deconditioned. I know I am NOW, after 4 years of POTS, but I am like most everyone, and was in good physical condition when I got POTS.

[nmorgen]

Well the diet reminded me of the blood type diet. I read this book a long time ago. I would basically eliminate dairy and grains. He told me that he thought it was probably genetically programmed for me to perform intensive exercise and my body wasn't working correctly b/c I wasn't getting the exercise my body needed. He also told me that I should eat lightly through the day and eat a bigger meal at night. That our bodies weren't meant to work and try to digest at the same time, thus pooling in the abdomin.

I'm willing to try it, but I'm not coming off my medicine. He told me he didn't expect me to come off the medicine right away. Lol, like I would have stopped anyway. He asked how I felt during pregnancy(which I felt great). How I did when I pushed myself in walking or exercise. I get to a point I feel bad, but then I do start to feel okay. He told me that the vessels dialate when we start to exercise and that causes the POTsy feeling, but when we keep going our cardiac output increases. His theory was that if I exercise for 30-45 min a day that eventually my beta cells wont be as receptive to the norepinephrine and I wont have the problems. He told me that my answers were good signs that the diet change and exercise would help me feel more normal. I am scheduled to get a stress test, echo and some kind of ultrasound or something for my abdomin to see if I have blood pooling there. I'm not sure about the last one or if I understood him correctly. Has anyone else had this test or something similar?

[vemee]

While deconditioning might cause pots in some patients it is not a major cause. I have had pots since my teens and I was in great shape yet the brain fog was terrible as were the other symptoms. However, even though it was not disabling at the time it definitely hampered me. I use to run distance and lift weights and always scored first class in the Marine Corps fitness tests. I did not start having problems with doing physical tasks until a few years ago when I was in the fire department. 6 years ago I could barely swing an axe without taking a rest and throwing up between swings where just a few months before I was in full gear chopping a tree up that had fallen across the road and blocking our approach to a fire. I am not saying that I was all that; but I am trying to say that I was in good condition with resting pulse in the 40's and still had pots. As I felt worse my conditioning did go down and I put on over 60 pounds, the doctors then just said I was deconditioned and would not listen to me when I told them I was in shape when this mess started.

Of Course if you can exercise it does help strengthen the legs which may help the pooling but it is not a cure.

[lieze]

I don't know maybe give it a try and see how it goes.

Just try to be safe about it.

I started Saturday by sitting on the floor to clean. I bawled a bit cause I thought I gotta start again by crawling.

Well I was able to get the whole kids room cleaned up, at the end I did just take all the junk left and pile it in a tote, but got the entire floor swept and it looks good. I spent hours in there pushing things around to different spots so I could vacuum.

By the end of the night every time I turned my head I felt dizzy but other than that I was fine.

I worked then last night and did just fine.

I am wearing this heart monitor so I can monitor my pulse the entire time.

I have had to stop activity twice so far besides that I've been okay and both times I was out in the heat??? And it corrected quickly.

Oh with the cleaning twice I felt a little dizzy but my heart rate did nothing. I just laid back on the floor against the kids bed until it passed and went at it again.

I think working nonstop Saturday made me feel better for my work day Sunday?

Then today I was semi active? And no problems today that I saw on the monitor at all.

I am no where up to normal. But I'm going to keep working on it.

I am on no meds right now besides my vitamin-have not taken a xanax in over a week and I guess you could say I feel great right now?

The only thing that would make me feel better is if I had no restrictions but there is usually something in life holding us back like before it was my work schedule and fatigue related to that. I think from now on I'll know when I'm tired and not push myself to the point it makes me sick. I'm sorry I did that and then some.

Let us know how this goes for you-it sounds like it's worth a shot.

[nmorgen]

I am going to try it. I want to wait for my new hrm before I really try to do anything strenuous. My husband has a rower and I think I might try that. We do have a regular stationary bike, but I'm not sure about that yet. I know that my POTs wasn't caused by deconditioning. I have had episodes of fainting and dizziness from my early teens. My internist told me to eat more salt and drink a lot. It never seemed to slow me down at all. A year before everything started falling apart for me I can honestly say I didn't do much. I was a stay at home mom, and I really didn't get that much exercise. I'm sure exercising more will help me. Almost 2 yrs ago I found out I was celiac, which has really helped me. I feel a lot better. Maybe eliminating the dairy and extra grains will help me. It doesn't sound like a lot, but I know it is going to be hard. Especially eating no cheese . I'll keep everyone updated on my progress, good or bad. We shall see.

The ultrasound of the abdomen...does anyone know what this is for? I have had my liver and gall bladder ultra sounded(is that a word? lol), but I have no idea what this is for? Has anyone else had this done?

[dianne.fraser]

Hi. I had an abdominal ultrasound before Christmas last year because I was having pain in the area of my spleen/left kidney. I guess the scan will reassure your doctor that there is nothing untoward happening with your internal organs and it will show the pooling of blood, if there is any.

Follow your instincts with this doctor - I'm all for trying new approaches but, ultimately, you will bear the consequences if his approach aggravates your illness.

Good luck and best wishes

Dianne

[potsgirl]

Eating your heaviest meal at night goes against everything I've ever read about good health and nutrition. Usually the best way to eat for energy and for digestive problems is to eat 4-5 small meals a day. I've been eating this way for years, and it really does seem to help. Anyone else? I would look at some nutrition resources online, or go see a nutritionist, but I know that's what I've been told for years, along with some of my friends who also suffer from POTS/CFS/etc.

Good luck!

Jana

[lieze]

I only really get hungry at night.

For some reason by evening my system gets calmed down and I feel like I can put food in me.

It's a fight all day long to do it although I try to do little bits.

I can't wait til night to eat cause I would just collapse with weakness but my biggest appetite is then.

[TXPOTS]

Wow, this cardiologist told you that he knows you don't feel well, but you aren't really sick. Hmmm.... I wonder if he'd share the same sentiment if he or a loved one had the misfortune of acquiring a POTS, one that the medical community has not found a definitive cause, cure, or even a reliable plan to improve quality of life for all POTS patients. Let me guess... he hasn't treated many patients with POTS.

I wonder if he did a literature search for the most recent study published on POTS and came up with Dr. Levine's article in JACC, hence his Dr. Levine like advice.

Personally, I have found exercise to be of great benefit. I now exercise quite intensively 1.5-2 hours/ day. I have well surpassed Dr. Levine's protocol based on a phone call with one of his team. Unfortunately, despite my initial hope that exercise would be the cure, I am still severely debilitated on a daily basis. It seems that I can exercise, but not stand and carry out basic tasks of daily life.

In May 2008, I was stepping out of a pool after a morning work-out of 75 laps freestyle of a 25 meter pool. That's the day I got POTS. Deconditioned, hardly. I was probably more active than 99% of the population. I did subsequently become very deconditioned after displaying severe symptoms, being misdiagnosed for a year and becoming bedridden. For the last 6 months, I have exercised every day, and I have not been able to get past POTS. In fact, the severity waxes and wanes with no rhyme or reason, despite a consistent exercise regimen.

I think it would be fabulous if exercise cures you. It is worth a shot. Remember you are the boss of your healthcare, and listen carefully to your body. Don't feel defeated if exercise is the not the magic bullet, and if you aren't comfortable with this cardiologist, move on.

[nmorgen]

I usually just snack through the day and have my biggest meal at night anyway. I just can't seem to eat during the day. I also snack after my meal. I guess I'm just a grazer. The change for me would really by the type of food I would need to eliminate. It can't be any harder than eliminating wheat/gluten. That was extremely hard for me. It took me 6 months to completely eliminate it from my diet. I still get glutened occcasionally. Which makes the POTs worse.

I don't exercise regularly, just when I feel like it. I do walk 1/2 mile to the grocery store at least twice a week and I walk at least 2 miles to the train station every Saturday. This isn't to say I don't get POTsy, but I really have no choice. Our car is still in the US. When I get my hrm I will try the rower. I plan on starting slowly and hopefully build up to 30-45 min a day.

Do I think it will cure my POTs? No, I don't think this will cure me. Hopefully it will make me feel better or give a little better quality of life. I've come to terms with this "POTs" disorder/disease. I can't say I'm happy about it, but I have accepted it. I believe that God gave it to me for a reason and if he wants me to get better, then I will, but if he doesn't I wont. I wasn't always this accepting of this disease/disorder, but then a friends little girl was diagnosed with DIPG and I learned what real suffering and heart ache was. I of course have done some "bargaining", I'm sure you know what I'm talking about. "God if this is the worse my family has to face then I'll accept this problem." I'm blessed with 2 healthy children and a husband that doesn't require me to work or have the house cleaned when he walks in the door. On good days I can take my kids to the park and watch them play or walk down to the river and enjoy nature. So I'm thankful for my life even with POTs.

[Birdlady]

I'm concerned that this cardio thinks 30-45 minutes of intensive cardio is going to help you. It might in fact make you much worse. I hope he understands that it is a possibility. I also agree with TXPOTS that it sounds like he's not dealt with many if any other POTS patients. I fear he's not going to be of much help to you if this exercise idea doesn't pan out like he's hoping.

If you do try to exercise that much every day, make sure you are replenishing your fluids/electrolytes, stay cool while you exercise and definitely stick with recumbent exercises for a long time. I wouldn't start with 30 minutes right away. Just do 10 minutes and see how you feel. Then work your way up.

Good luck and keep us posted on your progress!

[sugartwin]

Forgive my frankness, but I wouldn't entertain or pay any doctor who said something as condescending as 'you're not really sick.' And even if he does speak English, he's not making very much sense.

He thinks you're genetically programmed for intense exercise...based on what? He thinks you're oversensitive to norepinephrine...based on what? POTS has many, many different causes. How many times did he see you before coming to this grand conclusion? Where's the backup for all these statements he's making? And which is it? You have POTS because you're oversensitive to norepinephrine, or you have POTS because of abdominal pooling? Or both? Where does the diet come into it?

To me it sounds like this guy has a pet theory (a couple pet theories maybe) and would like you to do some free-of-charge vetting of it. If you don't get better, he can always say you're not exercising hard enough. 45 minutes of daily intensive cardio is a LOT.

[potsgirl]

I've got to agree with Dana and Sugartwin. I used to exercise fairly intensively, 5 days a week. 45 minutes on an ellipitical and then some weights was no big deal. Now, I'm lucky to exercise 3-4 days a week, and at a much lower level than I used to, and weights are really difficult. I almost pass out trying to do too much exercising, and have been told by numerous doctors to that the best thing is to keep up a MODERATE exercise program that involves 30 minutes of cardio that doesn't send you reeling (or 10, if that's all you're up to that day), and then try to concentrate some weight work (even using your own body weight at home - like calf raises on your stairs) to help with lower leg pooling if that's an issue for you.

Please work out at your own comfort level, and push yourself just a little to see what your boundaries are. Moderate exercise is good for everybody who can do it, and I think it's general health we should be looking at....the healthier we are, hopefully the better we'll feel, with or without POTS>

Cheers,

Jana

[TXPOTS]

I've got to agree with Dana and Sugartwin. I used to exercise fairly intensively, 5 days a week. 45 minutes on an ellipitical and then some weights was no big deal. Now, I'm lucky to exercise 3-4 days a week, and at a much lower level than I used to, and weights are really difficult. I almost pass out trying to do too much exercising, and have been told by numerous doctors to that the best thing is to keep up a MODERATE exercise program that involves 30 minutes of cardio that doesn't send you reeling (or 10, if that's all you're up to that day), and then try to concentrate some weight work (even using your own body weight at home - like calf raises on your stairs) to help with lower leg pooling if that's an issue for you.

Please work out at your own comfort level, and push yourself just a little to see what your boundaries are. Moderate exercise is good for everybody who can do it, and I think it's general health we should be looking at....the healthier we are, hopefully the better we'll feel, with or without POTS>

Cheers,

Jana

I agree completely, especially with the weight work suggestion. I have found that doing leg weights in the gym, in particular calves, makes me feel really good for a few minutes. Moderation is good too. I have made a valiant attempt at overcoming POTS with exercise. I went from light to moderate to intense (2 hrs/ day). There is no difference in how I feel between the moderate and intense regimen. I'd like to ask the new cardiologist to accompany me on my work-out routine and see if he can keep up and if he thinks I'm working out hard enough.

[lieze]

I guess I had kind of forgotten this but the cardiologist at Cleveland Clinic had told me he wanted me to get on that P90X exercise program??? He was the one who did my ablation.

His recommendation was to eat since he thought I was too thin and do something like that.

I consider just taking care of things around the house and my outings with the kids as my work out and I realize it's not the same but for me it feels that way.

[mountain girl]

I also am skeptical of this doctors advice. When I chose a doctor, it was after finding someone who treats pots patients regularly and understands it. I went through some who had heard of it, but had to really research to find someone who I felt had expertise in it, and there truthfully are not many out there it seems. My doctor said when I asked him about exercise, that walking was the best exercise he could recomend for me right now. I have tried to exercise regularly and made it for about a month each time, but found that it did not really make me feel any better, and really just zapped my energy. I now opt for shorter walks, instead of going out everyday on a 30 minute walk or more, and I also let my body be the judge. I like others here have mentioned was very active before pots. I never became bed riden with it, and did push myself to be upright every day, and was lucky enough not to have the passing out problms very often. I tried going off my meds with my drs approval, simply him saying you can try to decrease the dose, but I do not know what will happen. I tried cutting the dose in half, and my heart rate was up after 24 to 48 hrs each time, I tried it three different times because I so much wanted to see if I could get along on less, or no beta blocker or Florinef, but I felt worse, so now I know. You don't say how your dr in the states managed your care and if you thought he was knowledgable or not about the condition, but I would take that into consideration as well.

[nmorgen]

I'll try to respond to everyones general comments. I want to thank everyone who has commented. I will definitely take the exercising at a slow pace until I can build up to 30-45 min, if that's even possible. Like all of you I seriously doubt this will cure my POTs, but I'm hoping it helps and if not at least my body will look better,lol.

I'm not sure that this dr knows that much about POTs at all. He kept refering to it as neuro degenerative, but I don't think that it is. I have looked on for a POTs/dysautonomic dr in Switzerland and there aren't any. Going back to the States for a dr appt just isn't feasible. The guy does speak English, which the language barrier has been to toughest thing for me. I speak very little French, and def not enough to talk about medical problems. I do a little exercise now, but mainly yoga type floor work. I don't mind adding a little more exercise, but it will be what I can handle, which right now isn't that much. It is really hot now and the air conditioner we bought just doesn't work. So exercising will have to wait until it gets cooler here.

My dr in the States put me on clonidine. He didn't know if it was available in Switzerland so he gave me an 18 mos supply on top of the medicine I already had. Clonidine was the first medicine that I tried for POts and it does help me. I was never bed ridden with my POts so I never got that deconditioned. I only saw him twice after being diagnosed, but he didn't want to add any other medicines as the clonidine was working. He did tell me that I could take a little more if I was feeling symptomatic. He never told me that I needed to exercise any more than I did already. Oh the new cardiologist told me that he hadn't prescribed clonidine in about 20 yrs, but he was willing to write a prescription if I needed it.

I would like to try the weight work,but I will have to see if I can find the equipment over here. Does anyone know of any strengthening exercises that don't require a weight bench? Wow! I have the P90X I bought for my husband and that is really intensive, it makes me tired just to watch it, lol.