Ok, lets see if I remember everything as I try to keep this as short as possible. And I'm not sure where I left off really either. Ok, so I saw a neurologist late last year for my autonomic dysfunction (postural tachycardia). She ran a ton of tests (blood work and 7 MRIs and MRAs). The most interesting things that came back were that I once had Mono and a very severe case of it. There is no way of knowing when that was though. But it is weird to think I was so sick and didn't know it. Maybe that can explain one of the times I was completely exhausted but who knows with all of my medication. The other thing is that I failed the physical exam for Multiple sclerosis (MS) but it didn't show up in the MRI. I had a low image MRI that doesn't pick everything up (because I have a copper IUD I couldn't have the normal resolution MRI). Sometimes symptoms of MS will cause autonomic dysfunctions like tachycardia. So I have to repeat the MRIs in a few years. Also, I have bulging discs from my T5 and T6 vertebrae which also can cause tachycardia. But the only way of fixing that is through spinal surgery and I am not down with that. I'm going to blame the spinal problem to being dropped on my head in college by a good friend Nathan while Swing Dancing. Thanks Nathan :)
Onto the electrophysiologist: I'm not exactly sure if I liked this guy. It was hard to take him serious when he was at-least 4 inches shorter than me. Moving on. So I definitely have an arrhythmia. But the bigger concern for him is how often I have tachycardia without the arrhythmia. He believes that my tachycardia is triggered by an adrenaline problem. But in order to "fix" the arrhythmia, they have to go through the adrenal gland. So it is a catch 22 and it can cause more problems. The key is to try to fix the tachycardia first. So he put me on a 6 month lifestyle change. Exercise obviously, medical compression stockings (I feel 80 years old), diet and then the stuff that is so unrealistic: taking my medicine laying still in bed first thing when I wake up. For one, I am not going to leave my medicine on my nightstand when I have toddlers. Also, not elevating my head for 20 minutes after taking my medicine. Do you think my children allow this in the morning??? No. And of-course more medication, more medication, more medication. I hate medicine.
Ok so that was all late last year. I have done really well with the exercising, diet and medical compression stockings. Not a lot has changed medically in that regard. More recently, I have had terrible chest pressure, pain and nausea. My tachycardia is still really bad in the morning but I am in bradycardia in the evening (low heart rate). The pain in my chest has gotten so bad that it knocks me on my knees and I can't move. It has woken me up at night and I have had many sleepless nights. It is so scary. It is very debilitating. I was in the emergency room last Friday for it because I couldn't handle it anymore. Oh, let me back up. I have fluid around my heart. When the inflammation gets bad, that is when the pain is at the worst. I'm not sure if that was in a previous post or not. Ok, so ibuprofen was not working. So the emergency room treated me for pericarditis, chostochondrotis and acid reflux. Pericarditis is the fluid around the heart. Costochondritis is an inflammation of the cartilage that connects a rib to the breastbone. It causes sharp pain in the costosternal joint — where your ribs and breastbone are joined by rubbery cartilage. And obviously you know what acid reflux is. The three together are not fun and are what is causing so much pressure and pain.
Onto this Wednesday: I met with my cardiologist again. He put me on a new additional medication for the pain (Indomethacin). He is comfortable saying that he doesn't believe the pain and pressure are part of my heart condition. So that is a big relief. I need to see a G.I. doctor for the acid reflux as it is pretty bad. And that is with me taking Prevacid daily as it is. I take so much medication that I have to take Prevacid to coat my stomach. Also, he referred me to a Rheumatologist. A lot of the pain I feel mimics heart problems but they don't link together so hopefully a Rheumatologist can offer new insight for the pain problem.
Big news: I FINALLY got an appointment with the UCLA doctor. I have mention this before. There is a doctor at UCLA that is a neurologist but she studies the part of the brain that controls the heart. This is the team of doctors Cedars Sinai and UCLA referred me to. She is supposedly the best and the most sought after for mystery heart conditions. And that is why I have been on her waiting list since September!!! My appointment is March 15th!!! And my G.I. appointment is March 14th. So please pray for some answers in my future appointments. And some relief from the pain and pressure I am feeling in my chest.
So all in all, I am a big medical mess. I have been depressed and scared. At 31, I wouldn't think someone would be in so much pain. My comfort to myself is that I look back to my horrible migraines that started in 2003. I went to a neurologist every 2-4 weeks and tried over 20 medications for migraines. I remember having a migraine every day and still trying to function. My comfort now is that I only have them 2-3 times a month now. I look back at that time in my life and wonder how I did it. So I know that there is a time in the future that I am going to look back to this part of my life and be glad that I am past all of this. The question is when? But there has to be a when, right?! I think that is it.
No comments:
Post a Comment