Corlanor and Other Frustrations

Last week was the roughest week I’ve had in a while. My migraines have returned, my stomach has continued to be a hot mess, and my heart is becoming a major problem again. What a great mix!

I saw a new electrophysiologist on Friday, and he confirmed my diagnosis of Inappropriate Sinus Tachycardia. I was diagnosed with IST back in February after an electrophysiological study, but due to a terrible experience with that doctor I hadn’t done much about it since then. I’ve tried metoprolol, verapamil, and propanolol to slow my heart rate, but all of them failed to do so and caused side effects. Although I actually really liked this new electrophysiologist, he made big promises; promises he should have never made.

He started me on Corlanor, and told me verbatim this would be a miracle drug. As a skeptic with an asshole for a body I didn’t really believe him, but I was hopeful. I hadn’t done much research on IST, surprisingly since I love to research things, but now I have a million questions, most of which probably don’t have answers. Here are my questions, so if for some reason you have answers or have IST I’d love to hear them!

  1. Is IST a form of Dysautonomia?  The internet is giving me mixed signals
  2. What are other treatment options if beat-blockers, calcium blockers, and corlanor don’t work?
  3. How could this affect my laundry list of symptoms that no one seems to have an answer for?

Unfortunately my body is not liking the corlanor at all. My pulse is all over the place, sometimes “normal” around 75, and other times I’m still very much tachycardic at 120. It has also caused me to become extremely fatigued, hypotensive, and dizzy. Pretty much all day Saturday and Sunday I couldn’t do anything because I was so out of it. I started to get super disoriented (which does happen to me sometimes without medication) and couldn’t formulate sentences or comprehend anything I was trying to read. I’m on the lowest dose of this medication so I don’t think we can make this work.

I decided to stop taking it Sunday night, because I have a busy school week this week and I definitely won’t be able to go to school with all these side effects; It’s also not safe for me to drive when I’m so out of it. As far as I’m aware this is the last option I have to treat the IST, which is incredibly frustrating. I can feel my body progressively getting worse and returning to a dysfunctional state, which really scares me.

So far in the six weeks I’ve been in school I’ve only missed one class and it was for the electrophysiology appointment. I’ve been pushing myself incredibly hard and studying a ton, but if my health gets worse I’m afraid I’ll go back to missing school all the time. I just really don’t want to lose the progress I’ve made or have to leave school again. Maybe I’m thinking about this too much, but it’s really hard not to. We’re going to call the doctor today and see what he says about the side effects; I’m supposed to have a follow up on November 3rd, but it looks like I may need to see him sooner. I also have a gastroenterology appointment on October 18th with a new doctor, so hopefully that will bring some answers for my GI problems.

As for the migraines and daily headaches, I’m not sure I’m ready to go back down that road again. I’m feeling really emotional right now and the lack of control I feel over the situation is getting to me. I know that I can handle this because I’ve done it so many times, but honestly I just really don’t want to feel like like crap all the time and not be able to function. All I can try and do is hope that the electrophysiologist will have some ideas and the gastro appointment will go well.

I hope you all have a good week!

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Life Update: June

I feel like it’s been a while since I updated ya’ll on my personal life!

Overall things are going pretty well. Health wise I was feeling really good for a while, but now I’m just feeling okay. I’m having more headaches than I was, and my stomach is acting up, but overall I’m still doing better than normal. I had an appointment with an endocrinologist which was a waste of time, but other than that I haven’t seen any other doctors. I’m probably going to find a new gastroenterologist since that seems to be my main problem currently, and the one I was seeing said he couldn’t do anything more for me back in the fall of 2016. Ultimately I probably need to go to Mayo Clinic, but we haven’t started to try and apply since I’ve been out of a flare for a while. Having a few good months during spring/summer isn’t abnormal for me though, and it usually ends with intense pain and a hospitalization in the Fall. Yipee!

I got my GED in May and this past week I was admitted to my local community college. Yesterday I took the TSI, and luckily I don’t have to do any remedial courses, so that’s nice. I also visited with an academic advisor and started the process of getting disability services. Things are looking up as far as that goes!

The one major thing I need to do now is get my driver’s license. I have an appointment for June 28th, and I’m terrified. I took the driving test once and it didn’t go well. The woman who administered the test and angry when she got in my car and snapped at me repeatedly, then she failed me. Honestly I know I made some mistakes and shouldn’t have gotten a perfect score, but failing seemed a little ridiculous. That was almost a year and a half ago so it’s time to try again. She really got in my head and made me scared to drive, but I’m trying to be positive and confident because I know I can do it.

It may sound silly to some people who have gone through the process of getting a license, but it’s been incredibly stressful for me. I’m comfortable with driving now, the only problem is the dreaded parallel parking. Ironically that’s the part I passed the first time. I know some states don’t do the parallel parking, but my parents told me moving across the country wasn’t an option, so I guess for now I’ll just keep practicing. There’s a lot riding on this since I can’t to go college if I can’t drive, but I have faith that I’ll pass (or at least I’m trying to pretend I do :)).

I helped my sister move out of her college apartment, look for a new apartment by her new job, and then into her new apartment. She had her graduation ceremony mid-May and we threw her a family party at the air-bnb we rented. It was really nice, but I’m sad that she’s now living four hours away from us, and won’t be forced to see us for a month over Holiday break. She’s very family oriented so I know she’ll visit and we’ll visit her, but I also know it won’t be as often as it used to be.

That’s pretty much it as far as my life’s concerned. How are you doing? Do you have any fun Summer plans?

 

 

All the Appointments!

Since I last did a health update a lot of things have happened.

First I went to an allergist/immunologist who I really liked and she ran the Tryptase test for MCAD. Unfortunately that came back fine, and so did all the other tests she ran. She started me on Singulair, ranitidine, and Allegra for the all over itching I’m having. They’ve kind of worked, but the days I still have the itching it’s extreme and I feel like I want to peel back a layer of my skin.

I also went back to see my electrophysiologist for a follow-up from my EP study. It wasn’t surprising to me that this visit was kind of a waste, but it was still annoying. He upped my metoprolol dose to now 25mg 2x a day from 12.5mg 2x a day. Due to some unexplained episodes of waking up gasping, my heart skipping a beat, then beating really hard and pain shooting through my body I’m wearing a monitor for a week. I’ve done the 24 hour Holter monitor before but this is the Cardiokey. Hopefully it gives us some answers. He doesn’t think they are anything to worry about, but he also doesn’t do much diagnostic testing and in my opinion generally does not care. Unfortunately I have to see him in May to get the results from the monitor.

My mom works as a case manager in a hospital and one of her friends is a Cardiologist. She explained my whole cardio story to her and she thinks I should get a second opinion and that my electrophysiologist isn’t doing enough. So now we’re looking for one who will take seventeen year olds.

Because I definitely needed more specialists in my life, I saw a rheumatologist for the first time. I’ve been having joint pain and swelling that didn’t go away after I weaned off topiramate, so we went to see what they could do and what suggestions they had. My mom had to call 12 different rheumatologist to find one who would take me. Most of them didn’t see anyone under 18, so she called pediatric places but they wouldn’t see new patients over 16, being 17 I was screwed. Fortunately she explained my situation to one office and the secretary asked the doctor if she would make an exception and see someone under eighteen and she agreed, God bless nice people. This doctor was so kind and understanding.  She ran something like 21 blood tests to make sure I didn’t have any signs of rheumatology related diseases like Lupus or RA. I also got x-rays of my hands and feet, and we should get results from all of this within 1-2 weeks.

She thinks I may have fibromyalgia on top of whatever mystery illness I’m fighting, but doesn’t want to diagnose me with it just yet since it’s something that is way over diagnosed and once you get that diagnosis most doctors won’t look past it. I’m not surprised she thinks I could have fibromyalgia, but I am really happy she wants to do more and look into other things.

In two weeks I have a follow up with the allergist, then in eight weeks I have a follow up with the rheumatologist, and in seven weeks is the follow up with the electrophysiologist. Ahh so many! Some of these would be sooner but our insurance is changing as of May 1st so for the first 15 days while things are switching over it’s best not to have any appointments. I also have a dentist appointment to fix some broken fillings in May. It’s gonna be busy, but I’m glad we’re getting the diagnosis process going again.

If you read this whole thing, thank you but also why? Haha I’m kidding, but seriously thank you for taking the time to read my posts. Let me know how you’re doing!

Lots of Love

and appointments,

Alyssa

17 Going on 67

I haven’t been feeling great for the past two weeks or so.

I don’t think I’m in full flare mode yet, but my body just feels bad. I’m not having migraines, but I am having daily headaches and gastro issues. My tachycardia has been affecting me more than usual and making me really tired. I just feel old.

My joints hurt, and everything is exhausting. Weird things keep happening that aren’t a big deal, I just don’t normally experience them. My muscles have been twitching, my joint crack ridiculously loud every time I move, and a few times in the past week I’ve started shaking randomly. These things probably won’t last long, because my body is an asshole who likes to mess with me, but they’re annoying none the less. It’s been hard to explain, but something feels off. I’m not in a ton of pain, but I feel terrible and that’s not really something you can fix.

I went to my first appointment at a new counselor since the last one kept canceling on us. It was an “intake” appointment and she just asked me a bunch of questions. I feel like all I’m doing is complaining, but to be honest I didn’t really like her. She asked me a few questions in the beginning and my brain went blank. I couldn’t think, my heart starting racing even faster than normal, my whole body flushed, and I felt lightheaded. I was embarrassed and said, “I’m sorry my brains a little foggy today,” and she just gave me a look like I was crazy and said “oooooh kayyyy.” It felt really judgmental even if she didn’t mean it that way. She also said somethings that rubbed me the wrong way and tried to give me medical advice, which is so very annoying. I’m still going to try to have one real appointment with her and give her a chance, because there isn’t anyone in my area who wants to see a seventeen year old with chronic health issues.

I’m really hoping they’ll find something in my electrophysiology study next week, because this fatigue is awful. I’m normally pretty fatigued, but this a whole other ball game. I am grateful that I’ve only had a few episodes of extreme pain, but I’m fearful for the weeks to come. This time of year is normally really bad for me, so it’s been kind of weird that I’ve had less pain than normal. I’m trying my best to stay positive, although this post wasn’t very positive was it? Sometimes we all just need to rant.  I have a hard time finding a balance between my realist personality, inner cynic, and the positive person I know I should be trying to be.

How are you doing? Let me know what’s knew in your life or what’s been going on!

Lots of Love,

Alyssa

Cardiac Electrophysiologist Update

Yesterday was my Electrophysiologist visit and it went quite well.

We waited for a bit, but once we got into a room the doctor was really quick. He had already reviewed the stress test, EKG, and echo from the cardiologist and had an action plan, which was refreshing. His plan was not one I expected though.

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The doctor said he could do another Hilter monitor but this time for 3-4 weeks, but didn’t think the information would be anymore helpful than the previous 24 hour one was. Instead he suggested an electrophysiology test. This is a procedure where they go through a vein in your inner-hip/groin area and go into your heart with a catheter. If there are any extra chambers, which is what they’re looking for, then they would a cardiac ablation.They also stimulate the heart to see how it responds. He isn’t expecting to see extra chambers, and thinks the final diagnosis is going to be Inappropriate Sinus Tachycardia. The doctor said “Inappropriate sinus tachycardia is frustrating, because it happens for no reason and you have to rule out other things to properly diagnose it.” Great, another annoying medical condition that doesn’t seem to really have a reason, I might as well collect them now.

Whatever it is, it’s going to be nice to get a definitive diagnosis about something. He said the scheduler should call before Monday afternoon, and the procedure will probably be done in the next 3-4 weeks. That’s really fast, and I’m surprised he thinks he’s going to be able to do it so soon. You normally have to wait 3-4 weeks at least to get a specialist appointment, let alone schedule a procedure.

Oddly I’m not nervous at all, which kinda weirds me out. Lately I’ve felt like everything that’s been happening isn’t actually happening to me. Like I’m watching a movie and someone else is going through all of this; it’s been weird. Even when I look in the mirror I don’t see myself, and I don’t mean that metaphorically. I’m almost surprised at my reflection every time, and I don’t think it’s just the sudden weight gain. When I look at pictures from a year ago when I was really thin, and had my long golden hair, (before I cut it all off and dyed it), I also don’t see me. I’m not really sure what I look like, and for someone who doesn’t have vision problems, I feel like thats an odd thing to say. Maybe I’ll get nervous when it’s planned or a few days before the procedure, but for now I feel kinda numb about it.

I’m happy we’re doing something about the tachycardia, because I honestly waited way too long to go see a cardiologist. The chronic pain had always been the most important thing in my eyes, so I put this on the back-burner. I’ve brought it up to plenty of doctors, but they’ve all shrugged it off and just said “that’s weird.”

So, here’s my update since for once there’s actually something to report instead of just medication changes. I hope you’re all doing well, and are feeling okay. I’d love to hear about what’s going on in your life!

Lots of Love,

Alyssa

Update: The EPT is scheduled for 3/2/17. Longer than he said, but not too bad!

Acupuncture & GP Visit

On Tuesday I had my first acupuncture appointment. It was an interesting experience to say the least. The acupuncturist was the cutest old lady, and she was very sweet. She truly believes in the power of acupuncture which makes me (a skeptic) feel better.

I had needles put in my face, arms, and legs, and none of them hurt. Then she attached wires and sent an electrical current through four of them. I sat for 45 minutes while the needles were in, and a tape called “Six Bridges” played. I didn’t love the tape, it was basically a breathing exercise. I think meditation can be a good thing, but I’m not so sure it’s for me. When the acupuncture was done, she did fire cupping and then acupressure.

That night I had a migraine, felt super dizzy, and nauseous. I don’t think the acupuncture caused it, but it didn’t seem to work. Acupuncture is a process though, so I’m going to continue to try it for a little while, and if it doesn’t work, at least I tried.

Yesterday I saw my GP who I love, and we talked about whats been going on the past few months. She ordered some blood tests, which I have to get done later this week. I went right after my appointment to the lab across the street to get them done, but they stuck me four times, and didn’t get anything. They blamed it on me being dehydrated (not surprising) but I had drank a bottle of water before I went in there, and I don’t think I was dehydrated. I’m a really hard stick, and I understand that, but it isn’t impossible.

Hopefully these labs show something, although they never do, but I’m trying to stay hopeful. I’m continuously gaining weight even though I’ve been more active and have tried to change my eating habits. The weight gain has been SO rapid, there has to be something wrong. But, I guess we’ll see.

What’s going on in your life? I’d love to hear about it!

Lots of Love,

Alyssa

 

Cardiology & Conundrums

Yesterday I saw a cardiologist fro the first time.

I’ve had many EKG’s because my pulse runs really high, but I had yet to see someone for it. My pulse was running around 120-140 bpm all the time, until I started propranolol two weeks ago. I’m now on 60mg of extended release propranolol, and my pulse is 100-115 bpm most of the time. So, there is some improvement but not a lot.

They did multiple EKG’s, and echo, and a stress test, which I wasn’t expecting. During the stress test my heart rate got up to 190 bpm. That’s not good at all. Last week I had a 24 hour Hilter monitor, so she also looked at those results. Besides being incredibly tachycardic they didn’t find any abnormalities with my heart. Because of this the cardiologist sent a referral to a Cardiac Electrophysiologist.

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I’m happy nothing appears to be seriously wrong with my heart, but it’s annoying to constantly get results that come back “fine” when you’re obviously not fine. I’ve tried a few other medications for the tachycardia ( metoprolol & Nadolol ) but they both caused my blood pressure to bottom out. My blood pressure has run a little low on the propranolol, but nothing too bad.

We’re on to yet another specialist, or as the cardiologist called him a “super specialist.” I hope he’ll have some answers for me, but the cardiologist doesn’t think he’ll be able to do much. I’d rather not have a heart attack at 30 or some other major heart problem, because I have issues now that aren’t being resolved. Being chronically ill is strange, because you want everything to be okay, but then you tired of getting “good” results when they can’t figure out whats wrong with you.

On an unrelated note, in a previous post I mentioned briefly that my Grandmother was diagnosed with oral squamous cell cancer and is  having her surgery next Thursday. Any prayers and positive thoughts would be very appreciated! If they find cancer in the bone, then she’ll have to have another surgery to remove a major portion of her jaw, and then transplant part of her tibia to hold her jaw together. In other words, it wouldn’t be good situation, so we are hoping and praying for the best news possible.

Have you been to an electrophysiologist? If so, what was your experience like?

Lots of Love,

Alyssa