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New Member - Hoping Someone Can Help


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Hello,

I am new here with what seems minor symptoms compared to some, but scared none the less. About 6 months or so ago I tried a running program with my daughter. After about 4 weeks I still couldn't run over 3 minutes without being horribly winded. I would sometimes feel that I was going to pass out. I talked to my doctor, went to a cardio, nobody seemed overly concerned. In September my heart went crazy and went to the ER. They diagnosed me with SVT and did a chest x-ray and chest CT w/ contrast. At that point they noted swollen nodes in the chest. This led to surgery of nodes thinking I had lymphoma. Surgery was a couple weeks ago, turns out it is Sarcoidosis. They sent me to cardiologist for the SVT episode. I told him that I get short of breath from going upstairs and can't handle exercise, that if I walk and talk at the same time I am very winded. I have normal blood pressure. At times I stand up and get dizzy. I have never fainted. He did an echocardiogram and that was normal. He told me to start an exercise program on a recumbent bike and see if that helps. If not to come back in a month and he will go on to the next plan. On my chart it is labeled as Dysautonomia. That is what led me here. He also noted my HR of 80 when I was sitting down in his office, he then had me stand and it jumped to 125. He then started talking about blood pooling in my legs, but never really gave me a diagnosis.

I also just noticed on my chart that my potassium is 3.1 which is low. When I was in the hospital for SVT they also noted that my potassium was low and was going to give me pills but I was throwing up so they didn't at the time, just said to bring it up. Would this be related to Dysautonomia?

Just wondering all of your thoughts? Am I on the right path to a diagnosis? Is this POTS? Something else? I know you are all not doctor's, but you live this. What type of doctor do I see for this? This doctor seems very non-chalant and I know he's not the one I will stay with. I am in Indiana and am willing to travel a little ways for a great doctor to make sure I do not get any worse. RIght now the worst thing seems to be my HR.

Thanks in advance!!!!!

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Hi hopeforthecure,

Welcome to DINET. I hope you are recovering well from your recent surgery.

I do know that there have been members in the past who have had low potassium, here are some past topics that might interest you:

http://forums.dinet.org/index.php?/topic/19026-who-had-low-potassium-before-taking-florinef/?hl=%2Bpotassium+%2Blevels#entry174467

http://forums.dinet.org/index.php?/topic/22552-what-labs-have-you-had-that-came-back-abnormal/?hl=%2Bpotassium+%2Blevels#entry209709

Here is a link to DINET's physician list where you can search for a doctor who specializes in dysautonomia/pots: http://www.dinet.org/index.php/physician-list

Sarah

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Hello helpforthecure,

First off, let me say I am NOT a physician, but I have a degree in clinical laboratory science and run lab work daily so I have a little knowledge on the subject. Low potassium can be caused by dehydration. People with dysautonomia have a low blood volume, which means we are basically chronically dehydrated so it could very well cause your potassium to drop. Also, POTS isn't necessarily based on your blood pressure. It used to be called orthostatic hypotension because it was originally thought that only the blood pressure was affected but was changed to POTS (postural orthastatic tachycardia syndrome) because it was discovered that a lot of the symptoms were actually caused by an increase in heart rate when standing. I have been extremely active all of my life and have always done intense workout programs, but I often find myself out of breath or that my heart is racing just from doing very simple tasks. So your symptoms very well could be from the dysautonomia since they've done all the cardiac testing and can't find anything directly related to your heart. However, like I said, I'm not a doctor so don't take my word as gold, but hopefully you can find a little solace in the fact that you are not alone in your symptoms. Hope this helps!!

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One of my first findings was increased heart rate upon standing and low potassium. Not everyone has a blood pressure issue. POTS is diagnosed from various tests including orthostatic tachycardia.( tilt table ). I was diagnosed with dysautonomia unknown cause due to the above with blood pressure issues and low blood volume. Don't jump to any conclusions. It sounds like your doctor is following up with a plan so that is good! Keep us posted. Hope everything resolves for you quickly!

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I deal with frequent low potassium as well. I have been told by a Dr that low potassium can cause abnormal heart rythyms. I normally have sinus rythym but when my potassium is off I tend to have abnormal rythyms. my heart rate also goes abnormaly slow when I'm hypokalemic usually in the 30s a big change from my normal resting heart rate of 90s or 100s.

I experience shortness of breath on a regular bases, usually brought on by a jump in heart rate. Can be the worst feeling in the world, like your suffocating. I find regular deep breathing exercises help, as well as anything that strengthens breathing muscles. (I enjoy playing woodwind instruments when I can to help strengthen and work on breathing patterns.) This does NOT keep the shortness of breath from happening for me, just helps to get through it.

I find exercising to also be important in managing symptoms. Sometimes it's difficult to establish where my limits are but any exercise is good no matter how small. Good look on the bike I just started using mine again adding about a minute or two a week.

It sounds like your dr is doing what they can, hopefully you will see some relief of symptoms soon. God bless.

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Thank you for the responses so far. It definitely sounds like I have some similiar symptoms of POTS and that the dr. is on the right track. I'm just curious if this is a death sentence. I have 3 small children and a husband and I NEED to be here for them. I can deal with a disability, but the thought of not being here 5-7 years later (which I read somewhere) is very scary. I thought my lymphoma diagnosis was scary, but this seems to be worse on some sights, but not so bad on others. I'm thinking I'm not near as bad as others though. I function. I work 2 jobs (1 is a desk job 40 hours a week, and 1 part time job 6 hours a week standing), I get my kids to their sporting events, I do the grocery shopping, clothes shopping for kids, etc. I just notice the shortness of breath and the high heart rate. Everything else is easy to deal with or I don't notice. I would like to think that I won't be one of the ones that don't survive after 5 years. Thoughts??? Just so scary when diagnosed with something that isn't known about.

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POTS is not a terminal illness. It is a chronic illness that is more or less debilitating depending on severity and the root cause. Is it primary or secondary? etc.

Stress, worry, and anxiety make it worse. Relax. Try not to worry, though it can be easier said than done.You will be fine. Most people are able to manage the illness well enough. For some it is worse than that, and some of us fall in the middle. Do not contribute to it though. Take it day by day. That is all you or I can do anyways.

There are many things that can cause your symptoms, so you will have to rely on your doctors. I do not remember where you are, but there is a doctor's list on this site. It is helpful to see a specialist when it is necessary.

Has your doctor talked to you about drinking more fluids and adding salt to your diet? Has your doctor brought up wearing compression stockings? Is there a plan in place to get your potassium levels up? That would be very important. Have you considered how you might keep your potassium levels up? These are things that should be discussed with your doctor.

Keep asking questions as they come up. Many of us here have been where you are. It is scary at first, but it is not as bad as it seams right now.

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THis is reassuring. You are right though. I have to take this one day at a time. I sent a message asking about the potassium levels and what I should do. I should hear back tomorrow. I started drinking 64 oz of water based on what the nurse told me after she told me the echo was normal. I ask her about salt intake and she said no because of my SVT. I may bring up that issue again with the doctor when I see him next. He also said nothing about the compression stockings. These are all great questions and I appreciate you bringing them up. They are all things that I will talk with the doctor about. Hopefully it will make things move along more quickly.

Thanks again for everything!

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It can be scary having a new diagnosis for sure especially one that is unfamiliar to the general public. Dysautonomia has a variety of subcategories with many different symptoms. I have two friends that also suffer from dysautonomia but live relatively normal lives, working, relationships etc. I am on the more severe end of the spectrum...

spent 3 years on a downward spiral till I reached the point where I could not sit up without passing out, sometimes even passing out laying down. This year I have seen some great improvment, today I was able to walk during physical therapy for the first time in 2 years. I still pass out about 15 times a day but I'm much better off than year ago.

I'm still considered homebound as well as confined to a wheelchair but my neurologist believes that eventually I could get back to a pretty normal life. I'm also on SSI and qualify for long term care, which my sister is paid to provide. Still planning for a future with a normal life because I have faith that God has a bigger plan for my life.

My Dr's and I have found a couple different medications/treatments that have been helpful, also as much exercise as possible. It is important to have a Dr who is willing to treat or perscribe meds to treat dysautonomia. Which it sounds like you have and thats a great advantage. I've also come to accept that I will have to endure periods of feeling horrible in order to recognize improvment in the long run.

I hope you are able to continue with your job and family life just remember that there will be times when you need to disengage and care for yourself. Juggling health, family life, and a job can be a struggle but it is possible. I will be in prayer you can figure things out. God bless.

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If I recall correctly from my early research, sarcoidosis can be an underlying cause of dysautonomia symptoms. I also wonder how much of the breathlessness is sarcoidosis vs. dysautonomia of some sort. Both can cause this symptom.

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