December 2017 Doctor Vists and Tests Part 1

I have a lot to explain, and for the first time in months I might have what it takes to sit down and type it out. I finally took my supplements this morning, and they're helping! :)

For a little over a year there has been this lingering question mark over my head asking if I have Postural Orthostatic Tachycardia Syndrome, or POTS for short, a form of Dysautonomia. I had a couple medical practitioners say that they suspected POTS. POTS is defined as your pulse going up at least 30 bpm when you stand up then sustaining a high pulse for a little while (but the length of sustaining is what confuses me.)

I got myself a pulse oxygen meter that clips onto my finger in order to see what happens to my pulse when I stand up. About half of the time my pulse does shoot up at least 30 bpm, often way more than that. Sometimes it stays that high for a minute or two, but normally what happens is my pulse shoots up, then goes down, then goes up again, then goes down again, then goes up again... it's a roller coaster. I took some videos of this happening and sent them to a Neurologist in New Hampshire who is an expert in Dysautonomia that my primary doctor referred me to. He took me on as a patient, which was a huge relief to me since he's very difficult to get into.

Why not see someone locally in North Dakota? Because POTS isn't well understood, and it takes a doctor with training in dysautonomia to be able to diagnose it. There isn't anyone in ND except for one pediatric doctor that diagnoses, and I'm not a child. There doesn't even appear to be a Tilt Table in ND. If I went through the local hospital for a referral they would have sent me to Mayo in Rochester, MN. It's an 8 hour drive from here, and very expensive. Too expensive compared to flying somewhere to see a highly rated dysautonomia specialist.

On the trip to NH I also scheduled a Tilt Table Test, a Echocardiogram, Lyme Disease testing, a visit with the Neurologist, and a visit with my primary doctor (my Naturopathic doctor.) It was a very full trip. In preparation for the visits I had to be off all my supplements for a few weeks prior. I posted a bit about that experience, but in short, I didn't do quite as badly as I expected without the supplements, but I did get worse. High adrenaline and crashing during the day, high adrenaline and interrupted poor sleep at night. My digestion became poor and my joints and muscles ached. I ended up gaining between 10-15 lbs (lots of fluctuation day-to-day.) My mood deteriorated rapidly, and my periods became irregular. My stress level was through the roof and I couldn't control it, even while relaxing.

On the first day of the trip I went to Elliot Cardiology in Manchester, NH. I started with the Tilt Table Test. I had to fast at least 4 hours before the test to make sure I didn't vomit during the test and end up choking on it. As someone who has to eat every 2 hours to stay strong enough to function, that was hard, and then the test took about an hour. After the test my blood sugar was 72, which was barely above hypoglycemic, so I was actually impressed with my body that it didn't get hypoglycemic after all that, but I was very shaky.

The test was... not really what I was expecting. I was strapped down to the bed. It took 3 nurses to find a vein in my arm to put an IV into - the IV was to raise my blood volume back up with saline in case my blood pressure dropped too low. They almost gave up on using my arms for the IV, but the last nurse they called in wasn't afraid to dig a little deeper and she managed to get the needle into my vein. They hooked me up to an EKG machine, and took my blood pressure. I was expecting that they would let me lay calmly for a while to get my body down to baseline, but next thing I knew, I was being tilted upright on the bed. I definitely was feeling nervous and high strung, definitely not at my baseline before they tilted me. I started to get upset because I didn't feel like they were doing the test right, but the tilting made me feel so weak that all I could do was focus on surviving the tilt. In that moment I understood why POTS patients say the TTT can be really painful and difficult to endure. During the tilt I felt this deep pressure moving downward in my body, my vision narrowed towards black, and I started crying. Tons of tears just poured out and they had to give me tissues. It was horrible - but a feeling I was familiar with. I've felt like that before when standing up too quickly, but this was the most extreme. I'm not a fainter, my body always fights the feelings like I'm about to faint. If I was a fainter, that's when I would have fainted and I would have passed that test criteria. I couldn't communicate well, Thoughts were not working well, so when the nurses asked how I was doing, I just got out the words "weak, I can't stop crying." But then I was standing there strapped to this bed at an 80º tilt. Within about 5 minutes I felt better. My body was recovering. I didn't understand what to do - I felt well supported by this bed, so my body wasn't working to stay upright. I had no idea if I was supposed to relax all my muscles and stop supporting myself or if I was to stay there, legs locked upright. I had waves of hot flashes, waves of weakness, but never fainted. One nurse told me, "You're not quite normal," and I never had a chance to ask her what the meant. After the test she had to run before I could question her.

After 30 minutes they laid me back down flat. This is the part that's as bad as the tilt itself. I was able to stand up, but was very weak and shaky. I was trembling. I talked to the nurses for about 30 seconds, then I tried to take a step. I couldn't. My leg muscles gave out and I had to fall back down on the bed. I was crying hard again, shaking almost violently, freezing cold, and felt so weak. The nurses argued a bit about if it was an anxiety attack, hypoglycemia, or adrenal issues. The one nurse was sure it was adrenal, but they're not allowed to diagnose. That's when they took my blood sugar and found I was borderline hypoglycemic. On this note, I was disappointed that they did not do the version of the TTT in which they infused adrenaline through an IV if I didn't faint, and then do blood labs to see how my adrenals react to the IV. This part of the test often makes people faint, and then they know the syncope is from adrenal issues. I know I have adrenal issues, so I wanted that part of the test done and didn't get it.

I couldn't walk on my own, so they put me in a wheelchair and delivered me to the echocardiogram room. I needed the echo to check on the status of my Pulmonary Stenosis, which I've had since birth and it never went away. It's still there. That's about all I learned from the test. I'm thinking of sending all my past echos to a cardiologist there and having them do some comparisons.

That was the end of the first day of testing. I was weak and low energy the rest of the day.

The next day I saw my Neurologist at Dartmouth-Hitchcock Medical Center. But let me back up a bit: I almost didn't a couple of times. I got a phone call from his office the day before our flight out there saying that he wanted to cancel my appointment because the Autonomic Nervous System testing equipment broke and he couldn't test me. I had to beg to keep the appointment, even just a consult, and they agreed because I was traveling. The day of, I had two major strikes against me going: I started my period that day (I have to roll my eyes at my body choosing the worst times), and the weather was horrific. 3 inches of snow in a few hours time, icy roads, and near whiteout conditions. An hour and 20 min drive took us 2 hours, and I ended up getting there 10 minutes late. 5 more minutes and he wouldn't have seen me. Or so the receptionist said, but the doctor was forgiving and spent a good amount of time with me. I didn't have time to go to the bathroom before seeing him, so I was cramping badly and was uncomfortable. My blood pressure was 120 something over 63 and my pulse was over 100, if I remember correctly, which showed just how stressed out I was about my bathroom needs, getting to see this doctor finally, and being so rushed in bad weather to get there.

He sat me down and let me talk - he had me tell him my history and all my symptoms. He gave me a good amount of time and really listened, which blew my mind. He was amazing. He took me seriously, didn't try brushing off anything I said. He even knew about the damage vitamin b6 toxicity can do and understood what I went through with my nerve pain. He had me to do some nerve conduction testing, which turned out normal. He also showed me the results of the TTT:


I went up over 30 bpm, the criteria for POTS. But it doesn't say if it was sustained. It could also be POTS symptoms caused by something else. So he needs more information.We decided that since he wasn't able to do the autonomic nervous system testing that he would have me wear a heart monitor for 14 days - a Zio XT Patch...


...Which meant not being able to go back on my supplements. My doctor and I agreed that we need to measure my heart without the medical aids to show how I am without support. Today marked 14 days, so I ripped the monitor off and took a hot shower and my supplements. The patch was itchy the whole time and it left me this pretty rash:


I'll tell the rest of the story in Part 2, as I have to go to work now. :)

U2

On chronic illness support groups a common topic is music that helps people get through the difficulty with the illness. One of the most frequently mentioned artists for this is Lady Gaga. For me? I think it's obvious to anyone who knows me: U2.

It's Christmas Eve. I'm exhausted, just relaxing while the roast is baking. I'm listening to U2's new album, "Songs of Experience." As the song "Landlady" came on I had an epiphany. I was thinking through how many years U2's music has helped me stay strong, find reasons to be happy, learn to love myself better, and appreciate the people in my life. I started to wonder what it specifically that has touched me the most about their music. As Bono sang in "Landlady" about how much he truly respects and appreciates all his wife has done for him, it struck me. I love U2 so much because I'm very attracted to people who deeply love. Thinking through all my favorite people in my life, they've all been people who have a deep passion for something that makes people better. They have a true love and respect for humanity, and while they recognize and admit to the darkness and cruelty in people and this world, they still have this rich passion of loving people. I can't connect with people who don't recognize the darkness and despair in life and push it away. I connect with people who know the darkness like a close sibling, but always point to the light. That's my husband. That's my best friends. That's my parents. That's my heroes, some of whom I have met and some of whom I have not. That's U2, not just specifically Bono. But Bono is my greatest hero in the world today. U2's music is full of passion and love - they want nothing more than to make the world a better place. And they do. They make my world a better place so that I can make other's worlds better places.

What U2's music does for me is helps me not focus on my problems as a negative working against me, but instead their music helps me find my place in the world despite my problems and the world's problems. Yes, their music is very political. It's very personal. They very rarely write songs about romantic love. They can't write a simple fun tune, all their songs are heavy ("Lemon" might be the ONE song that isn't heavy, ha!) That's a turn off to many people, and I understand that. Many people think Bono's incredibly arrogant and claim to hate him because of it, but I don't think they're actually listening to him. But to me, music that doesn't have anything to say is boring. I'd rather have an arrogant insecure Irish man tell me how beautiful American's political system is than  have most Americans telling me how it's ruining our freedoms and liberties. I'm sick of American's views on America. Most pop music bores me to tears. U2's songs have so much to say that they always keep me pondering the meaning of my life in this world, and I thank them for keeping me focused on my purpose in this crazy world. Political or not, they keep me focused on love through this crazy mess of a world.

As "Landlady" came on, I was brought to tears by listening to how much Bono loves his wife. I have so much respect for Bono and Ali. They've only ever been married to each other, never any divorce. They show the world what marriage is all about. "I would win and call it losing if the prize is not for you."

My chronic illnesses can't take over my life and get me down when I have U2 singing about love and passion for all that is right and just in this world. My life isn't about me. I have value, no matter how much I'm hurting and held back. I have a place, no matter how broken and distant I'm feeling. I have a purpose, no matter how empty and drained I am. Their messages cut through my depression and anger and remind me who I am, who I was made to be, and how I can always keep growing despite my situation. I'm not defined by what I can't do, but by what I can. My health isn't my enemy. It isn't what's to blame for me not being the best version of myself.

So to Bono, Edge, Larry, and Adam: Thank you! 

Sugar = Depression

People don't want to talk about depression and suicide. I don't blame them. I always feel so powerless when my friends bring it up to me. I know trying to cheer them up will just push them away. I know that when I'm feeling depressed I'm too zoned out to even talk about it. It's such a tough issue.

I'm currently wearing a heart monitor, a Zio XT Patch. I have a lot to write about to explain what's going on it, but I don't have the energy right now. To make my point, I do need to explain that I'm relaxing a little (not a lot) on my strict diet because we want the heart monitor to record what I'm like without all the medical aids, including my diet.

This has meant I've let myself eat sugar. I bought the SO Delicious chocolate covered coconut milk ice cream bars because the only thing in them that's not allowed on my diet is sugar. They were a safe sugary option for me. They're super good! So I ate too many over the last week. Each time I eat one, I'm noticing what happens a few hours later: I get very depressed. Not sad. Just mentally everything goes black and the only emotion that comes through is a mild current of anger. The "everything is stupid" type of anger, like I'm a teenager again. It comes along with a headache. It's awful. I lose sight of myself in this blackness. Then eventually it turns into hunger and total weakness - probably low blood sugar. I'm saying this now because the feeling is starting again... because I ate the ice cream a few hours ago. It's hitting me.

I still get depressed without the sugar, but it's really blowing my mind that sugar has this profound of an effect on me. It has a direct correlation with serious depression episodes. I'm not entirely sure what to do to get out of it - the past several days this week with the sugar depression I just had to go to sleep and sleep it off. Of course sleep doesn't come easily. I'm not supposed to take any sleep aids either, but I've had to take some magnesium to calm the anxiety in my body from the sugar so it was possible to sleep. I'm afraid of how I'd be with both sugar and a lack of sleep.

I also ate a muffin made from flax and oats, no other grains. The oats alone were enough to know what happens to me when I eat grains: fibromyalgia flare. It hurt. My skin, especially  my legs, got really tender to the touch. Waves of achiness went through my muscles. And I hate to say it, but it's true... taking the Eucharist has Mass has done the same thing to a much lesser degree. Grains are truly my enemy.

But why did I also mention suicide? Because I just binged on an anime on Crunchyroll called "Orange." If you're feeling depressed, go watch it. It's powerful. It's about a girl who sends a letter to her past self to coach her through her social anxiety issues in order to get her to save the life of a friend who will end up committing suicide. She has to overcome her own social fears to be strong for him, and he has to want her help - all the while he hides his deep depression from her. I won't spoil anything. It was really hard to watch, but also really inspiring and beautiful. It had a lot to say about the value of good communication skills.

Back to my heart monitor...
It hurts. All my doctor's supplements for me really have done a lot of good for me. I've been off of them for a month now, maybe longer? I'm not clear on the time frame at the moment. I've gained 10-15 pounds (the scale is different each day), I'm weak and totally drained, adrenaline takes over when I need to work and the adrenaline feels gross and dominating, I can't sleep well, my hair stopped growing much, bruises are taking weeks to heal, I'm dizzy really often, vertigo almost daily, my gut is screaming at me often, my heart is palpating and fluttering too often, I'm often panting for air, I'm dehydrated and can't seem to drink enough water... I'm going downhill fast. I'm so looking forward to going back on my supplements. They're a hassle to take. They're expensive. But they're all I've got that's working. I function so much better on them. Not perfectly well, not even close, but so much better.

I'll write about everything else later.