One step back.

The other day as I was talking to to the electrophysiologist’s nurse because of some more paper issues, I decided to make another appt with the dr. since ive been feeling extra crappy lately. 😦

Today I went to this appt-

-And apparently I need the ablation asap.

As I sat on the table leaning forewardn nauseated, lightheaded and feeling like someone is sitting on my chest- the dr(s) were shocked as my heart rate was in the 140’s just sitting up. my heart has been racing alot lately and i’ve been feeling  worse and worse,  and now I know why…

Apparently its “whats to be expected.” my heart cant handle the increased hr all the time… and its putting me in danger of going into cardiomyopathy.

The dr now thinks my issue is leaning towards IST… but acknowledged that im a really complicated case.

I definatley need to be on some medicine starting immediately, he said-  so im going back on the Verapamil, because thats the only thing I havent had horrible side effects on. (Although it didn’t seem to work before either.)
The dr. wants to do the ablation ASAP

… I almost wasnt even going to be allowed to go home tonight.

Im waiting to hear back from the nurse now about scheduling.

He also said the best way to do the ablation for the ist is with open heart ablation but he want to try regular ablation (s) first.

I really want to go to Vanderbilt first, and get their opinion, but now they are pushing to do the ablation first.

I do have the option though, if the Verapamil miraculously starts to work- to wait until after Vanderbilt.
..I guess we’ll see.

 Update: My ablation is scheduled for March 15th, 2017

Amazing News!

 

The other day I was so surprised to see that I got a packet in the mail, adressed from Vanderbilt! When I opened it though I was disheartened to discover it was only a bunch of blank new patient papers, similar to the ones I filled out already. I was very confused as to why they would have sent me the papers I had already filled out. I faxed them over to the electrophysiologist’s office for them to look at.The nurse must have figured it out… because 2 days later… on November 10th I got the phone call i’ve been waiting about 2 months for!…
…

I got accepted to Vanderbilt’s autonomic center!😀😂😁

The first appt is on February 28th, 2017!

Thats all the lady could tell us, but I was informed they will be sending a packet with papers and more information. I am so happy! 😄

I have more good news! I have not had any appointments since I went to the Neuro-opthalmologist on Oct 7th! And I also (currently) don’t have any coming up! It’s been so much nicer not having to go to any appt’s!☉🌴…

… Especially since I was going to one every week! Its sooo nice.

*Update- I recieved the packet of info about the appt, and to my surprise they sent me the papers again and one paper says they want the blood pressure measurements again and to fill them out within a month of my appt…

…which im really hoping is not the case.

Here’s my appointment times! Looks like its only going to be one day so far, but I hope I can see one of their Neuro-opthalmologists while we’re there (for the flashes of light in my vision.) Im not sure if they can or how to even go about this, but its gotten really bothersome.

I also almost went to the ER again on Nov 12 after something weird happend… but now that i think about it i was being pretty careless…So I didnt eat all day (because I wasnt really hungry) and I went to my brothers soccer game and sat out in the sun for a few hours, and then on top of that I ate a bunch (well alot for me) of McDonalds.

About 2-3 hours later I started having really bad “waves” of palpitations which came with a migrating pain in my jaw, sweating profusely, shortness of breathe (which i havent felt in a while) everytime I moved or changed postions. I was also extremely fatigued, pins and needles and numbeness in my feet, and had a mild headache. The palpitations and sweating and everything was just so uncomfortable! …

I was somehow able to stand it though and after another 2 hours or so it gradually wen’t away.

The Great Big Symptoms List

Yesturday, after a horrible morning of low back pain and a sore throat (again) I took some bood pressure measurents from home for my electrophysiologist, to determine if I need to stop the Verapamil, or increase it again. (I already increased it once, because i’m not noticing any change on it.)

Verapamil is a cacium channel blocker, which is kind of like a beta blocker…but it’s goal is to control my Atrial Tachycardia arrhythmia, and it also can be used for high blood pressure.

Since I had no idea which measurements they wanted (sitting,laying,standing), I took all three. I layed down for about 10 minutes (like I do at the office) and then stood up,

 and WOAH- that was dangerous!

My vision went completely black for like a minute, and i felt like I was about to pass-out. (Update, my vision has been going black a lot now…)

(My blood pressure went from 98/65 laying down, to 129/86 standing up!)

The hr went from about 73 – 102.(According to my bp monitor, it was probably higher)

If you haven’t figured it out already from my previous posts, here is a great big list of everything I have to/have had to endure thus far:

• “Extreme exercise Intolerance” aka when I exert myself my heart rate goes up very high, very quickly, causing me to become lightheaded/dizzy/feel like I’m going to pass-out (although I never have, yet.) My heart pounds through my chest, and I get disturbing palpitations where my heart THUMPS so hard, that it makes me cough! (After having stopped exercising because of the lightheadedness I now also began having chest pain when I try to exercise.)
• Also take a long time to recover from exercise (3-4) days, and I am exhausted on those days.
• Shortness of breathe with exercise 

• High heart-rate/ Dizziness when standing. (Vision sometimes goes black.)

• Fatigue. All the time… Suddenly become randomly exhausted sometimes during the day. (May be due to my arrhythmia.)

• Nausea/ Discomfort after eating while upright.Along with bloating and belching. That’s right. I have to eat while either slouching back or laying back in a chair. This symptom has progressively worse and causes huge problems..:(

• Cannot tolerate sitting straight upright at all- w/out tachycardia, lightheadedness/ dizziness. Or standing still, or walking for a long time. I either have to be leaned back or laying down.

• Hyperhydrosis- aka excessive sweating. Enough said.

• Chronic (episodes of) muscle spasms, joint pain, random frequent sore throats, swollen glands, fatigue (possibly CFS, Ankylosing Spondylitis -Arthritis)

• Mild Kypho- Scoliosis (~16°)

• Concentration and Memory problems, aka “brain fog.”
• sensory overstimulation.
• Disorientation almost (like poor mental clarity and slow thinking.Its also harder for me to have a conversation while sitting/standing upright.)

• Previous random, monthly vomiting.(only vomited 1x per incident.)

• Ocassional finger/hand numbness and tingling. Cold hands.

• Possible “absence seizures” in middle school. Possible “panic attacks” (which I believe was the new diagnosis’ all along…)

•  “Borderline- exercise induced athsma” (also probably the other problem’s)

• “Light Flashes” in vision. (1 spot of light that’s either white, orange or blue and lasts ~1 sec.) Happens several times per day.

I think thats everything major…

After reading all that, here’s a daily dose of relaxation from st pete beach!

(We took a much needed break to the beach on Wednesday 🙂 )

From Monday to Wednesday next week (24th-26th)  for every picture posted on this page https://www.facebook.com/events/670923763063841/  of someone wearing turquoise

Cutting Edge Kitchen and Bath in Arlington, Washington will donate $1 to Dysautonomia International to help find a cure!

🙂

I still haven’t heard anything from Vanderbilt… but I’ll be sure to let you all know!

  Have a great weekend! 🙂

Hold on to me, I’m a little Unsteady…

This past week has been a bit rough. My brothers and I have been sick with an cold, and then Sunday I got a really bad muscle spasm again in my left upper back, which has been relentless.

It’s actually radiating pain up into my jaw, and has made it hard to bend my neck to the side… I’ve tried everything, and it refuses to go away! 😦

Tuesday night, I broke down and whipped out some old muscle relaxers, to try to see if they help. I’ve been taking them non-stop since then, although it’s honestly not helping much- just been just knocking me out for a few hours at a time.

---

This past Sunday, I went to watch my parents second soccer game of the fall season. I cant even describe how hard it was, to sit and talk to some of my old teammates, and not be able to play. It hurts so bad that it’s the only chance I had to play, and it was taken away from me. Even if I could play tomorrow,

I’m now too old. (for the u/19 team)

Even though I am allowed to exercise again, I experience chest pain every time try to now. I asked the Electrophysiologist about it at my last appointment and he said it could be due to the arrhythmia.

-So now I’m stuck avoiding exercise all over again.

---

In other news: I actually went this entire week without going to an appointment! (Although, I have 2 coming up next week.)

Monday: I’m going to see the electrophysiologists nurse, to bring back those papers for Vanderbilt.

And next Friday, I am going to the Neuro-ophthalmologist.

---

*Update: My muscle pain FINALLY began to subside on Friday. Yay!

Update #2- Monday: After going to get blood pressure measurements, I found out I had to come back one more time…because they need 3 measurement’s from different days… So now I have to go back early (7 am) on Tuesday morning as well.-And in other good news, my muscle pain has returned!

Update #3 Tuesday- The last blood pressure measurement went good, now the nurse can send this huge pile of records and those to Vanderbilt! She said It could be a month though before I hear if I’m accepted… I hope it doesn’t take that long!

After that appointment, something weird happened… I went to a store, and both of my whole hands went completely numb and felt stiff. It was really strange. It went away soon after I sat down… this happens to me occasionally, and at first I thought maybe it was from my neck, because usually just one or two fingers go numb… The electrophysiologist asked about it before, so maybe it has something to do with the POTS.*

…

*The Neuro-ophthalmologist questioned it too, and thinks the numbness could be related to reduced blood flow from the POTS.

Electrophysiologist- Arrhythmia?

 

Before my follow-up appointment on August 9th (which by the way, was moved up because of my bad reaction to fludrocortisone) I had an ecg as usual… Except this time when the PA left the room afterwards, it took longer than usual for the dr to come in the room…My mom and I were joking around as we waited.

(If you’re wondering, they sit the table up like this, it’s because when I sit up for long periods of time I become lightheaded/ dizzy.)

Well, we were definitely not expecting what we were about to hear next.

When the dr. finally entered the room, he told us he saw a “step up” on the ecg … where my heart suddenly was racing, and suddenly stopped. He showed us what he was talking about. Remember the sinus arrhythmia I mentioned? Well, it turns out it could have been hiding this arrhythmia all along!

Because of this new piece of information, he then recommended to do the electrophysiology study/ ablation.

….

I was shocked.

…Did he really just say that?….

… Hadn’t we already ruled out the ablation?…

A million questions came running through my mind,  yet all I could do was sit there speechless.

…..

He drew out a Venn-diagram, and put POTS in one bubble, IST in one, and whatever arrhythmia in the last one. Basically, I have symptoms of all of them, but its not definitively in one group or another- its somewhere in the middle.

He said with this new information though, that he’s leaning towards IST more, and there are 10 other patients like me currently in his care, and I’m the only one he would consider doing the ablation on. He wanted to put me on the schedule right then and there, but I was pretty hesitant… I really wanted to go to Vanderbilt still- like we had planned, and get a second opinion… He admitted to me, they just send patients there so they can say they’ve tried everything, but after just hearing about this arrhythmia for the first time, I was not about to rush into an ablation.

Since this is the first time we have caught this arrhythmia on an ecg, my mom asked if we could do another holter, and the dr. agreed we could, so we discussed 2 different ones and he and ordered a 48 hour holter (since he was sure we could catch it by then) and had me follow up in a week to discuss the results, the ablation, and Vanderbilt again then.

 

The monitor they gave me ended up not being the right one for my age or something, so I had to wear it twice.

The second time they shipped it to me, and I put it on myself! 🙂

1st holter

2nd holter

 

At the follow up on August 19th, the dr. went over the results of the holter monitors, and claimed to see quite a few “step ups” (which we now knew were given the name “Atrial Tachycardia”) but none of them were as clear as the one before.

…..

This didn’t sway his opinion though about the ablation. I told him my mind hadn’t changed either – I still wanted to go to Vanderbilt, and he said its not like the patients come back with a pill and they’re fixed… “but if you want to do that, I’m not opposed to it.” Since it would be at least 3 months (from that day) before I could even get the ablation anyway, it made sense to do that first.( I don’t think I was put on the schedule yet, even though my mom and him talked about it…) Since he mentioned it at the last appointment, I brought up the catecholamine’s test, and asked if we could do that here (instead of Vanderbilt like he suggested) to rule out “pheochromocytoma” (a rare adrenal tumor) and he ordered a 24hr urine metanephrines test. (Which is the same thing I guess, but more specific.)

My follow-up appt- there was a dif nurse who didn’t put up the table. (that didn’t go very well..)

Urine metanephrines test

 

August 29th- the results came back……completely normal!

I remembered (after the appt of course) the dr. had briefly mentioned that I’ve already tried all the drugs (beta-blockers, calcium channel blockers…) I didn’t think I ever tried a ” calcium channel blocker” (and this was confirmed by Google, haha 🙂 ) So I called the nurse and she said she would ask him and get back to me.

He did not think medicine would be effective, but if I wanted to try it, I guess he was ok with that. I had a rough few days the past week… so I was willing to give anything a try. He prescribed me the smallest dose of Verapamil. I started that Sep 4th.

I am happy to say that for the first time, I have not noticed any side effects! (Although I haven’t noticed any improvement either… it may just be the dose is not enough, so I’m waiting to hear if they will increase it.)

…Also, the nurse came in and told me after my last appointment, that after they got the urine metanephrines test result, then she could send my records to Vanderbilt. The team of dr.’s there then looks at them and decides if they will approve me. (I thought you just needed a referral, but apparently there’s much more to it than that.)

On September 8th, I got a phone call –

I was approved!! 🙂

Well- half-way approved. The first part of the stuff she sent was approved, so I have to go to the clinic on Sep 14th to fill out a bunch of paperwork, and do some blood pressure tests and stuff, and then she will send those, and they’ll decide if I’m 100% approved or not.

…

And, on Sep 22nd, I am going to see an ophthalmologist… for about a year (maybe a little longer…) I have been seeing “light flashes” in my vision.

I will have more info after the appointment! 🙂

My POTS Diagnosis Story!

On December 1st, 2015, I went to a cardiologist.

Before I saw the dr. I had another ecg. The dr. soon walked into the room and the first thing he said was “you’re not supposed to be here, you’re to young!”

🙂

 He said my ecg looked fine, but that it didn’t mean I didn’t have a problem. Apparently  because it only looks at 30 seconds. He ordered a Holter monitor, echocardiogram, and exercise stress test just to be sure. I still wasn’t allowed to go back to soccer, but he assured me I would, and said “I’m sure it will be nothing!” (I wish I could remember exactly what he said …but it was something like that.)

……

A few days later on the 3rd, I had the echo and the 24hr holter monitor put on. Unfortunately, the card on the holter didn’t work, so I essentially did this for nothing, and had to redo it on Dec 30th. And I couldn’t get in for the stress test until new years eve.

first holter

2nd holter-before stress test

It’s so funny I wore a “RUN” shirt to my stress test…

(I didn’t even get that far…)

On December 31st, I went in for my stress test. I was a little nervous, because I knew already I had a bad relationship with treadmills. (they always made me dizzy…)

I got hooked up to the ecg wires and a blood pressure cuff and stepped up on the treadmill. It started going at about a fast-walking pace…Immediately I started to feel lightheaded and dizzy. I told the nurse who was watching the monitor and the other had just turned around to leave, when 1 minute and 17 seconds into the test…

…I started to fall over, and nearly passed out.

Both of the nurses had to basically catch me, and helped me to a nearby chair. As I was falling, I saw the shock in the nurse’s face (who was watching the monitor)… my heart-rate had shot up from the 130’s/140’s, to about 180! The nurse (the one who was about to leave) ran and got me a washcloth for my head, and a cup of water. I sat in the chair with my head down, dazed and confused.

.just like what happened at soccer.

…..

It took a while before my heart-rate even came down. My mom had been waiting in the chair just outside the room and could see everything. The nurses then told my mom and I that I had an electrical problem, and that I needed to see if I could move up my appointment for the test results asap. They assured us though that it could likely be treated with medication. We tried to see the dr. that same day, but he wasn’t in. They didn’t have anything sooner, so we just had to wait a little longer until January 8th, 2016.

After my results appointment on the 8th,

I  wrote this post on my Facebook-

I have been diagnosed with “Inappropriate Sinus Tachycardia” where basically my heart beats faster than it should. At the exercise stress test, my heart went from 130 something to 178 in 1 minute and 17 seconds (a world record! haha.) which is when I almost passed out. It’s supposed to take like 15 minutes for your heart to get up that high. Apparently I really could have passed out. I was also diagnosed with POTS syndrome, since my heart went from 48 to 170 something just from sitting up in bed in the morning after waking up. I’m starting a beta blocker but it has to be gradually increased so no soccer until it gets under control. (Which sadly might take a while) I see him again in 6 weeks to see if it’s working and then I’ll have to do the treadmill again (and not almost pass out this time 🙂 ) in order to go back to soccer (y)

I tried several beta-blockers over the next several months:

• Carvedilol
• Metoprolol Tartrate
• Bystolic
• Ivabradine
• Propranolol

all of them making me feel worse than the conditions themselves. I had a 24hr blood pressure monitor during the Bystolic, and at one point it showed my diastolic BP dropped to the 30’s!  I also tried compression stockings and got a ecg recording thing for my phone called “Kardia” for when I got palpitations. At the same time as I was tying all the beta blockers, I was also going to a rheumatologist at the same time, and those meds were also making me ill!

---

At my last appointment on April 26th,  the dr. decided to send me to an Electrophysiologist for a second opinion and to talk about possibly having a catheter ablation for the IST.

I went to the soccer park later that evening, and posted this on my Facebook-

Nothing is more frustrating than trying to do something when your body won’t let you. Keep trying to practice a little at soccer (even though I’m not cleared to play yet..) But I’m soon reminded I can’t. Now when I exert myself at all my chest gets tight and I feel like I can’t breathe, on top of feeling faint like I always do.

Just want to be able to play again 😥

Even though I was NOT allowed to play, I went against the dr and would try to play a little at practice, and suddenly I couldn’t even run without having chest pains and extreme shortness of breathe.

This terrified me.

I thought, will I never be able to play again?

……

I will play again.

EXERCISE: My Old Fre-nemy (Pt 2.)

In fall 2011 (9th grade) after I had already moved to Florida, my younger brothers joined a soccer league! Completely the opposite of up north where you can only play in the summer, soccer here lasts from fall to spring. Going to their games and practices reminded how much I missed it, and wished I could join them.

But in my mind lingered the memories of my inability/ inadequacy.

I decided to go to a brick-and mortar- school (a charter school actually) for half day. I stayed in virtual for the rest of the day. They use computers for the work, so it was essentially a virtual school, but with fun extras like gym (ok, not gym… 🙂 ) and art. I LOVED art class.

How does this tie into exercise?.. Well, this one project we did, I got to express my love for soccer. We painted picture frames, brought in pictures for them and hung them up in the cafeteria/art room.

Here is my picture from art.

 

Sure, I could have joined a league or team, but I was concerned I wouldn’t be good enough, and I wouldn’t be able to run … Eventually, I just accepted the fact that I would not be able to play again.

---

But at 17, I found a way to get involved! In the spring of 2014, I became an assistant soccer coach! 🙂 I got to help my mom out, who was the head coach of my brothers U9/10 team.

 Then, in the summer of 2014… I decided I would give soccer another shot! 🙂

My oldest brother and I would go outside to our community soccer field, and train as much as possible for as long as I could handle, even if it was only for a few minutes. I was DETERMINED to get in decent shape to play!

In the Spring of 2015, I was finally old enough to join the adult soccer league, that my parents had been playing on! I wanted to join that instead of joining a team for my age  because that way I wouldn’t be judged by anyone…

Plus its a very relaxed environment so I could stop anytime I wanted/needed to. But I surprised myself, and most of the time was somehow was able to last the whole game!

In March 2015, I also became a head soccer coach! 🙂

I’m not going to lie- it wasn’t easy being a head coach. (and not just because it was a U5/6 team… ) It wasn’t even my any of my brothers teams either- but they needed a coach. I ended up coaching my youngest brothers team for 2 seasons after this!

There were lots of days I didn’t want to show up because of how bad I felt… But I did anyway, and always tried to put a smile on my face 🙂

The last season was the hardest (spring 2016), as it was during the time I was trying a lot of medications after my diagnosis…(in Jan 2016.)

……

But before I share the story of my diagnosis of POTS,

I would like to share another part of my journey, that started around the same time as this (after the forehead injury.)

…

See this story next in “Stress…Scoliosis…Spondylitis? (Chronic Pain Story)