Get Over It

[RunningWild]

Is probably becoming THE most annoying phrase, ever.

My PCP: "We all feel like crap sometimes. You'll get over it"

A friend(?): "Get over it already, take a vitamin"

And probably coming soon from my boyfriend: "I'm over it"...

Blah blah blah. Don't these people understand that if it was that easy, I would have done it already?

Hello to all my fellow sufferers. I'm new to posting, and new to the concept of POTS, but I guess I'll be here awhile. Let me share my story (very long winded).

I was born almost 23 years ago with some health issues. Congenital heart defects. My mom was afraid I wouldn't make it.

-Patent Ductus

-Pulmonary Stenosis

I had the PDA fixed when I was one, and had the Pulmonary Stenosis monitored until I was 16 or so. When I was a teenager, I was morbidly obese...My cardiologist at that time had blamed any and all of my complaints on my weight. "You're fat" he said, to a 16 year old girl. Wow.

Fast forward a couple of years...I had gone to college, lost 100 pounds, and began running regularly. I loved it. I finally felt healthy.

In May 2011, I ran a half marathon with my mom. It was one of the most rewarding experiences of my life.

>>>>>>>Here is where everything went downhill.

After the half marathon, I never really felt like I recovered. When I went back to running, I felt like I could never catch my breath. My heart would RACE even at a slow jog. This was not normal. I began lifting weights to get some form of exercise.

By September, I had seen my PCP for what I thought was a sinus problem. I told him I was constantly tired, I had passed out while walking up my basement stairs, and that I was having a hard time breathing. He asked about the old heart problems which I hadn't had looked at since I was 16. He then sent me for a Pulmonary Function Test, an Echo, some XRays, and bloodwork.

The results:

-Anemia

-Asthma (?)

-Hole in my heart (?)

Upon follow up with my PCP, I had notified him that I was having severe headaches with visual disturbances- I would go blind in one eye. He immediately had me admitted to the hospital because he thought I was passing clots. After speaking with multiple doctors- this was a wild assumption. After 3 days in the hospital, and a battery of tests, I got the following results:

-Iron Deficiency Anemia (which is now slight iron deficiency, but no anemia)

-Patent Foramen Ovale, with Atrial Septal Aneurysm

-Exercise induced asthma (they assure me this is the case, due to hyperventilation during stress test)

-Various findings related to pre-existing Pulmonary Stenosis

-POTS (?)

I followed up with an electrophysiologist that I had seen in the hospital, and he had me wear an event monitor. He assured me after two weeks that he was not seeing anything out of the ordinary. I asked him about the occaisions where my heart would race beyond 200bpm. He says this is normal for a young person like me. I disagreed when it occurred while walking up a flight of stairs.

I had a TTT three weeks ago, and it tested positive. At this point, another EP had been overseeing my test while my Dr. was in clinic. He told me "I really don't know much about this syndrome. But I will treat it the way other doctors treat it."

He sent me home with .1mg Florinef per day.

After 1 week, I was still blacking out constantly and still had a racing heart. The inhaler slightly improved my breathing, but made my heart race more. I quickly developed the worst muscle pains of my life. It felt like I had been hit by a truck every morning when I woke up. I was swollen all over. It hurt to move at all.

I went to the ER and was told I had slight hypokalemia, but mostly they just pulled me off the Florinef and told me to follow up with my EP.

That's where I am today. I have an appointment with my EP at 9am. I'm pretty much convinced that it will be a waste of my time. That he won't take my concerns seriously. That he won't discuss other possibilities with me. I'm so sick of being brushed off. Anyway, here is my latest list of concerns:

-Everlasting headache that gets worse or stays the same. Never goes away.

-Mental issues. Having a hard time finding words when I'm at work. Fuzzy mind.

-Spasms, tinglies, numbness

-Horrible exhaustion, but I can't sleep. Tired when I wake up

-Anxiety

-Still passing out (twice) and blacking out (daily)

I wish I could just get over it.

[GingerA]

Hey Running Wild,

Welcome to the world of POTS! your symptoms sound very much like mine and many others that are on this sight. I have been trying to get answers for 16 years before I finally got a diagnosis. But to be honest, other than having a name for my condition the medical people haven't really helped much. I even passed out yesterday and the ambulance was called. The EMT said he had never heard of this so just lay down and rest. They either don't know enough to treat us or they don't care. Still there are people who suffer from this everyday and have great information to pass along. Even though it is not "legal medical advise" I have seriously learned more about how to take care of myself from this site than from anywhere else.

My advise is search this site with a fine tooth comb and print out what you think is relevant to you and take it to the doc and say, "SEE!" You said you had one doc who said he would treat this the way other docs did so he may be open to following things that you find. There are links to medical research and personal accounts on this site as well as the tips and the forum. If nothing else maybe the "medical papers" will get some attention.

[potsgirl]

Welcome to the forum, RunningWild. As Ginger wrote, there is a lot of information and support to be found here. Many of us have gone for years undiagnosed, and sometimes you have to go to a doctor who specializes in dysautonomia to really find out what's going on with you. I was diagnosed at the Mayo Clinic (both Rochester, MN and Scottsdale, AZ have doctors specializing in POTS and other autonomic nervous system issues there.) There's also Cleveland Clinic, and various others places - there are doctors listed under a link on the Home Page.

Please read through the info that's available on the site, and know that there's usually someone on here who can relate to what you're going through. Again, welcome, and we hope to see you posting and getting some of the things you need here.

Cheers,

Jana

[surfgirl14]

I would def recommend the Mayo clinic if you want some answers. I go to Duke Childrens but have heard wonderful things about Mayo clinic.

[mwise]

Welcome to the best forum and support system. There is so much great information here. It has helped me with knowing how to deal and treat this non-curable disease. I couldn't do it without this forum. Again welcome and hugs to you.

[MightyMouse]

Sorry, but the rest of the world usually doesn't get it. Even others with chronic illness will sometimes say those things b/c our illness isn't as obvious. My family has said horrible things to me over the years. But, others here are correct, this is the place to vent about it, to talk to people who know that you don't just "get over it" (well, unless, of course, you're one of the few who really do just get better... I'm not one of those), and get ideas and information.

[mully2014]

RunningWild-

Wow!!! I think you've been reading my mind... people really don't understand. It can be very upseting that they think we are just making this stuff up. Trust me I would never want this for myself or anyone else to have to go through what I've had to so far.

I used to be a major runner. One of the things I miss the most!!!

I hope that you can find the support you need here!

[Lemons2lemonade]

I've found that it is difficult for people to understand too. I always tell them that our reality is defined by our perception and mine with pots is a lot different than theirs and it is real to me as the sky is blue.

[Libby]

How'd the appointment go?

[RunningWild]

The appointment went well. I so wish my EP knew more about POTS, because he is one of the most caring doctors I have ever met in my life.

I told him I have been feeling like crap lately, had some passout spells, and that I just need some help because my day-to-day life is beginning to seriously suffer.

He looked at me and told me he understands how frustrated I must be, and that he wishes he had a magical pill for me to take and feel better. While that's not the case, he did offer some other options:

He has prescribed Midodrine since the Florinef didn't work. I can't afford to pick it up until I get paid, so I will give it a try later this week.

He also gave me a referral for Cleveland Clinic so I can make an apointment there (I have seen their doctors on Dinet's list) So once my insurance changes over on Jan1, I will see what I can do about that.

I guess I'm just a little bit ... skiddish? I know I've been dx'd with POTS, and that the symptoms are all there- but what if I get to Cleveland Clinic and they tell me that I'm fine? That all this stuff is in my head? I can't keep going through that. Three days sitting next to my bf in the hospital when they basically said the same thing- its not fun.

blaaaah.

Thanks for welcoming me to the boards. I know I'll find a ton of support here, and hope I can be helpful to some of you as well.

[mully2014]

Midodrine is great for raising your bp. I had too many side effects on it but it really helps on the bp end of things if that's one of your problems.

I used to have a fear that it was all in my head because that was what everyone was telling me. Don't worry it isn't and they have medical proof that you aren't just making this up. You just need to have confidence in yourself even with your condition, I know it's not easy.

[RunningWild]

I don't think I need my BP to increase, so i don't know how much the midodrine will do for me in terms of making things better. my avg BP is like 110/70.

Right now my thoughts are racing about the visit to the Cleveland Clinic. I know a lot of people have posted about it, so I will look for more info about what the visit would include- but I'm also afraid my insurance wont cover it, and my BF and I can't afford non-covered visits.

sigh.

I'm sure it stinks this much or more for a lot of us here, so i won't be all 'woe is me'... woe is us

[jenglynn]

I am so sorry. You are in my thoughts. I have been diagnosed for about 6-7 months and in the beginning I was still working and barely functioning but like you, walking up stairs would raise my heart rate over 200. It would always at least double or triple by standing for less than a minute. I unfortunately got to the point where my symptoms got much worse (not saying and pray that does NOT happen to you) and I am now on long term disability through my employer and in the process of applying for SSI. But in the beginning, I had some doctors just like that. " I wish I could help you, you must be frustrated, but this isn't something I can fix" I bounced around to so many doctors and specialists within the same hospital that it was crazy. I started with an episode of syncope so they put me on the one month Holter monitor. Shortly after, I started getting the shortness of breath. Gradually, I had more and more symptoms and felt completely non functional and had to stop working at the end of Sept. In Aug. I went to see a hemotologist because my ferritin levels are very low (8) and they thought maybe I was anemic. I guess I am not because hemoglobin is borderline low but still in normal range. He said these symptoms aren't from anemia or low iron and decided to delve into my chart. He asked about my heart and I said I wore a Holter Monitor for a month and it was normal (or so I thought because I never heard otherwise). So he said, well, I will take a look at it anyway. And when he pulled it up on the computer he was shocked to find out FOUR months later, no one had ever read the report! Which showed several episodes of tachycardia even in those early stages when my heart rate was 150+ just from walking and a few over 200. So he had me do a test.. resting he listened to my heart rate- 70 and he had me walk around the hallway in his office and when I got back it was 170. So that is when the real testing began and I finally had people listen to me but I just keep thinking if I had known that four months earlier maybe I would not be where I am today.

Hang in there. I know it is hard and I pray your insurance will cover the Cleveland Clinic for you. You have documentation and they won't dismiss you.

Jen

[RunningWild]

That's so strange, because your onset is very similar to mine. Especially the ferritin/anemia situation. My ferritin level was a 5, but I was just barely anemic. They raised all those values, but my PCP said that no way even anemia would cause such an abnormal spike in heartrate like I was having. I was frustrated that my cardiologist thought the frequent tachycardia was okay for someone young and active like me, but I guess he never really understood that I wasn't doing much to cause the spikes.

I mean, I was running 5 miles a day easy, and now I can barely walk at 3.3mph without wanting to die. And not all days are bad. Somedays I can run a little. But this isn't NORMAL. I did not become out of shape overnight.

My insurance company approved the Cleveland Clinic appointment, so I'm waiting for a confirmation.

Does anyone know if they will redo tests or just take into consideration the previous ones?