Mayo Clinic — Consultation & Radioactivity!

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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.

Neurologist

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 :-)).

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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.

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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.

Transit Study

What would you think if what you didn’t eat of your breakfast was being scraped into this hazardous material bin?

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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.

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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.

— Jackie

P.S. I probably won’t post again before I go home because using Jake’s computer drives me insane!!

17 thoughts on “Mayo Clinic — Consultation & Radioactivity!

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  1. I know Kristi, it’s amazing. I finally have a doctor with a plan other than more drugs or visiting another doctor! I can’t wait to get started. I’ll be back in Normal before we know it!

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  2. Wow, it’s awesome that you may have a light at the end of the tunnel! This sounds like great news Jackie, I’m really happy things went so well!

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  3. This is all so very encouraging. Nothing better than not only getting answers you can understand and believe in, but a gameplan as well. Your future is SO bright!! One thing that really caught my attention was your mention of ‘brain zaps’. They are awful, aren’t they? I have been on various anti-depressent meds (for a reason other than depression go figure) and even though I take the lowest dosage, for me to wean off completely causes me to experience the zaps. I know all too well what you mean by the fogginess, zaps, headaches, etc. I have often said when going through the withdrawal sysmptoms that I wouldn’t wish them on my worst enemy. I guess I take comfort in FINALLY seeing that someome else can relate though I wish you never had to know the feeling. To try and explain the symptoms to someone who has never experienced them is pretty much futile.

    Great news on your latest findings and if you ever need someone to listen just give me a hollar!! Prayers as always
    Mike

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  4. Mike, when I was trying to figure out my brain zaps I came across something called serotonin syndrome. It isn’t what is going on with me, but it is linked to anti-depressants. You should check it out!!

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  5. THANK YOU so much for these posts about your time at Mayo!
    I will be meeting Dr. Fealey for the first time in November.

    I’ve had a workup done by EP Cardiology here in Chicago (Northwestern) and met with Mayo Cardiology for the first time in February. They decided that they aren’t sure if its Vasovagal Syncope of POTS, and if neuropathy is involved.. so I’ve been referred to Autonomic Neurology

    My schedule for November is:
    Wed Cardio checkup, “Autonomic Reflex Test”, Dr. Fealey Autonomic Neurology Consultation
    Thurs Exercise Test
    Friday Exercise Physiologist Consultation

    Sounds like you had a lot more tests done…
    I’m curious.. did you see Fealey first, and then he ordered all those additional tests? or did you have the tests first?

    Also… SO interesting that you feel sick and head pain and want to vomit when overstimulated. I have just recently within the last few months started to have this symptom and didn’t know what to attribute it to. I can’t wait to learn more on if it’s connected to the same condition in me.

    I was previously on Midodrine and Fludrocortisone and an SSRI (Lexapro). The Midodrine did awesome things to lessen my symptoms, but even together they were not controlling all my symptoms, so in April they put in a special pacemaker that detects syncope and I haven’t had ANY syncope or pre-syncope symptoms since… so I’m off all but the SSRI now. We tried to go without the SSRI but i started having symptoms again when we removed that one… so i’m now on a low does of a new SNRI instead (Cymbalta).

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    1. Laura, I went to Mayo Clinic through my cardiologist referring me to the POTS Clinic. To go through the clinic you have to have a tilt table test confirming POTS. When you request to go through the clinic, all of these tests and consultations are automatically included. Seeing Dr. Fealey was part of the plan every patient goes through. It sounds like you are referred for a neurology consultation rather than for the POTS clinic.

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  6. Glad I read this. We’re getting ready to send me to Mayo, but I’ve had so many bad experiences with doctors, that I don’t feel like going anymore. Maybe it would be helpful. What state was that in?

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    1. Awww, I’m sorry you are discouraged. I went through quite a few doctors who told me I wasn’t sick or there was nothing to do. At Mayo Clinic, they see chronically ill people all of the time and really understand how difficult it is. I found the way it was set up and the staff very accommodating. I went to the Mayo Clinic (their POTS clinic specifically) in Minnesota.

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  7. That’s so neat! Thank you for the link 🙂 My GI specialist said that when I see the motility doctor I would probably have to swallow the pill so they could track it. When they did an endoscopy a couple of months ago they found a bunch of food and fluid in my stomach.

    I noticed you said you wear compression stockings, do they help? Are they uncomfortable?

    I love your blog as well 🙂

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    1. They help so much. They’re pretty uncomfortable at first. The only brand I don’t find itchy is Jobst. I wear the 20-30 strength, thigh high. The black ones look just like you are wearing tights. A lot of people try them a day or two and quit because they’re uncomfortable. My opinion is POTS is pretty uncomfortable anyway, so it isn’t too big of a deal to cope with the week or so it takes to get used to the stockings since they help!

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  8. I have a few more annoying questions 🙂
    Can you tell me what your egg intolerance symptoms are? I had a blood test that showed an allergy, but never felt anything physically and I miss them! Also, you said your doctor wanted to see how much you pee before prescribing midodrine- my 24-hour pee test needed 1.25 of those big red containers, so what would that mean? What does midodrine do? Thank you for the help!

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    1. Okay so the first question I would ask is did you have a positive result to an IgG or an IgE test? If it was an IgE test, that probably means you’ll never safely eat eggs again. This is because an IgE positive indicated a true allergy. When someone with an IgE allergy to eggs eats eggs, it activates their immune system. Reactions would include rash, anaphylaxis, itchy mouth, breathing difficulties, etc… An IgG positive result indicates an intolerance, but the immune system is typically not involved with this intolerance. Unlike with an IgE test, there are no antibodies made against the given food. This test is not considered reliable by all doctors. This is why doctors who run this test usually suggest patients eliminate the food(s) for at least 6 months, then slowly add the foods back in to look for a reaction. For me, some foods I had no idea were causing symptoms were doing so, I was just so used to it I didn’t notice. Eggs mainly just cause me to bloat very badly and if I consume enough, to become sluggish. (You can measure my abdomen before and an hour after and there will be a good inch difference!) This isn’t a big deal as far as reactions go, but I also don’t think it is a good sign so I just avoid them. Cilantro was on that test, but I have added that back in with no problem. My suggestion if it was an IgG test would be to just try an egg and see what happens!

      It would depend on the amount of volume the container could hold as to what how much you filled meant. Did they give you two to begin with, or did you need to go back for another one? Also, increased urine output may not be a big deal so long as the levels of nutrients in your urine is healthy. My doctor thought my volume was a bit high (but it wasn’t effecting the nutrient levels) and said if I so desired, I could safely drink about 12 ounces less of fluid a day.

      Midodrine raises your blood pressure. If you experience symptoms from hypotension, it may be a good option for you. Many people with blood pressures on the low end cannot take beta blockers without Midodrine as beta blockers lower the blood pressure so much. I’m one of these people 🙂

      I hope I helped, feel free to ask any questions you need to in order to clarify!

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    2. Also wanted to throw it that before trying Midodrine, I drastically increased my salt intake and gave it a good 8 months. For many, the salt is enough!

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