I’m alive! The picture above is from when I was waiting for my neurologist appointment Friday and my evidence of why I couldn’t let everyone know how my day had gone. At this point, I had been up about 27 hours because Thursday night I didn’t sleep a minute. For some reason, the Ambien I require lately to sleep did not work. I spent the night in what I call an “Ambien haze” which pretty much just means you don’t really remember anything. Jake suspects an Ambien haze is to blame for the air conditioner being turned off and/or up to 80 degrees in the middle of the night at our apartment. We wake up every morning sweaty and wondering why our a/c isn’t working. I did take the time at 4AM to curl my hair and put on make-up. I figured just because I felt cruddy doesn’t mean I had to look cruddy.
Anyways… The point is Friday I was exhausted so I couldn’t post to let everyone know how my appointments went. When I don’t sleep I am not only tired/grumpy the next day, the blood pools a little faster in my legs, my brain fog gets a little bit thicker, and I get awful headaches. So you can probably imagine dealing with this on top of my usual stuff, it took everything I had just to sit up through my appointments. During a lot of the appointments, I actually just laid on the exam table the whole time.
I was so excited for Friday because this was the day I was to see the neurologist. I had been told he would be the one who could explain everything I had been going through. It is likely part of the reason I couldn’t sleep was because after nearly 5 years of this stuff, I was finally getting some answers!
I was not disappointed — Dr Fealey is one of the smartest people I have ever met and he answered so many of my questions. Here is a picture of us Jake creepily took (but I am happy he did :-)).
I am just going to give everyone the gist of what Dr Fealey said. He said a lot of things that take some digesting to understand and I’m not really well enough to go into that much detail right now. In a 1-3 weeks, I’m going to listen to the recording of my appointment and make a more detailed post for anyone else who might be curious about the specifics!
The first thing I found out is that I, as expected, failed the Tilt Table Test. My body is not down with standing for prolonged periods of time. I then found out what type of POTS I have. There are two types. In one, it is your neurotransmitters reacting incorrectly to sitting up/standing, in the other it is something going on with your nerves. My norepinephrine levels increase more when I stand up than they would in a normal person. This is because my body finds standing up to be a stressful event for some reason or another. When this is occuring in your body along with POTS, it is called Hyperadrenergic POTS. This was uncovered through the Endocrine Test. I was normal for the sweat tests, so that means it is not my nerves/nerve endings messing up. This is another kind of POTS (sorry I cannot remember the name right now). Everyone is usually one or the other.
A sad fact is about 1 out of every 5 people who have POTS will never get better. The good news is, my autonomic system is in pretty good shape for a POTSie! For this reason, it is unlikely I will be in the group of people who cannot overcome it with time and/or a treatment plan. This made me so happy to hear! I never knew why some people got better and others didn’t, but this made sense.
Here is another sad fact. The pee jug is back! Dr Fealey was alarmed by my low sodium levels (mine was 60 and the lowest acceptable level is 180). After I explained the day of the test, they had starved me all day and hardly let me drink anything, he decided it’d be a good idea to repeat the test so it would be a more accurate reflection of my sodium levels on a normal day. He said after he saw how much I pee in one day he could decide whether or not to prescribe Midodrine (I hope he does decide to use this!!) and how much sodium to recommend I take in a day. He recommended I drink V8 or tomato juice — it has 20% of the daily recommended amount of sodium! This is why I loved this doctor. For everything he told me to do, he had multiple examples of how to do it and why I should do it.
I asked about a lot of my symptoms including what I have called brain zaps and brain aches. The brain zaps are a weird, almost electrical type feeling, going through my head. The brain aches are at the back/center area of my head and feel like they are in my brain. He told me they are actually more than likely in my skull, but feel like they are in my brain and are a result of my messed up autonomic nervous system.
My blood pressure doesn’t drop that much when I stand, but drops rapidly if I am overly stimulated. I have had to leave movies because I cannot physically stay in the theater any longer. When Emma comes, I have to go lay in a dark quiet room because I played with her too much. If I look at the computer screen too long after a tiring day, I will start getting very sick. It is such an annoying symptom because when you are feeling sick, you want things like talking to other people, the computer, the TV, lights to read, or music to distract you. I can’t have that because it will actually make me way more sick and might make me vomit. This is one of those spots where there are lots of big words and new concepts to understand. I’ll go into all the detail at later time. The basic version of what is going on is this… Parts of my body are being stimulated and reacting incorrectly, resulting in my body responding by lowering my blood pressure. He said it will probably go away as I get better and is a result of, yet again, my autonomic nervous system not working right.
Basically every single symptom I have, could be traced back to my autonomic nervous system. The thing I liked best about Dr Fealey is that he didn’t just leave it at “it is because of your autonomic nervous system”. He explained exactly what parts of the body or what bodily reactions were involved in each system. He explained why it happens and why it will get better. He is also checking my cortisol levels in the morning and evening because another doctor had found they were not right. By the end of the appointment, I decided he is definitely my hero and may even be my new best friend.
I’m not sure exactly when I will be better, but it will probably be around at least a year. Here is what I know of my treatment plan….
- I need to exercise 5-6 days a week for the rest of my life. If I stop, POTS will probably come back. That was pretty intense to hear! I need to start slow and should not ever force myself to workout longer than my body is able. I need to work up my endurance slowly, a few minutes at a time.
- I need to consume a few liters of liquid everyday. This increases my blood volume and will help there be more blood to go around.
- I need to consume bunches of sodium. Not many people get told this! He is going to let me know the exact amount to shoot for after the new test comes back.
- I may get Midodrine and/or a beta blocker. I am having a phone appointment with the doctor Friday. If I peed to his liking, he will give me Midodrine! I really hope this happens.
What would you think if what you didn’t eat of your breakfast was being scraped into this hazardous material bin?
That’s exactly what happened to me today. I’m still waiting for my stomach to glow in the dark! The reason for this test is it has seemed like food is staying in my stomach for too long. This could be the cause of the nausea and vomiting. To find out what is going on, they want to see how food moves through my body. 48 hours prior to the test, I couldn’t take any pain, stomach, sleep, or amphetamine medicine. This pretty much eliminates every pill I take to help me sleep, stay awake, and not feel nauseous. At 7:15AM I needed to be there to swallow a radioactive pill. An hour later, we came back and I ate a radioactive egg! As you may or may not know, I have an egg intolerance. I manned up and ate it for this test so I can find out what is wrong. I miss eggs, so it wasn’t SO bad eating one, but I definitely won’t do it again.
So, I took the radioactive pill at 7:15, ate the radioactive eggs at 8:15, and got scanned at 8:30. The radioactive pill/eggs in my body will show up on the scan and they will be able to follow what happens to my food when I eat it. I got scanned again at 9:40, 10:40, 12:40, and 2:40. They had me eat lunch (non-radioactive) at 11:40. Jake and I made ourselves comfy in the lobby since we had to be there all day. As always, he kept my spirits up!
Now, I am back at the hotel and I am not feeling so hot. As I mentioned, I couldn’t take sleep medicine prior to this test, so that meant no Ambien last night. That means hardly any sleep — just a few hours. For the stomach test, I can’t have any gum, alcohol, or caffeine. No caffeine! The long day caused all of my usual symptoms plus my throat is sore, but I was happy to be free! I noticed all of the patients on the elevator are way more chipper on the way out of Mayo Clinic than on the way in. They must all be super happy to be done too :-).
Tonight I am just going to relax and dream about caffeine in my sleep. Only 2 more days until I get to go home!!! Thanks for reading.
P.S. I probably won’t post again before I go home because using Jake’s computer drives me insane!!