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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What’s Next for my Health?

This is the question always in my mind:

What’s next for my health?

Lately I’ve been doing really well. For the last three months I’ve felt better than I have in at least a year. This is great news, and something to celebrate, but my health has a specific pattern it likes to follow. Summer/early fall I do well, sometimes I’m doing great within this time, other times I’m doing just okay, but I’m able to function much more than when it’s bad. Early/Mid Fall things decline and by the time winter arrives things are really really bad.

I’m scared of the months to come. I’ve signed up for college classes, and I desperately want to do well in them and not be absent all the time. It’s not the pain I’m afraid of anymore, it’s what it takes away. I want to move on with my education and my life in general. I want to make friends and have an active social life. I just want to live a more normal life.

Last week I went to see the rheumatologist I saw back in April. She’s very kind, but she doesn’t think whatever’s going on with me is rheumatological, and doesn’t think there’s much she can do. I’m incredibly tired of having this conversation with doctor after doctor. I don’t seem to fall under anyones specialty, and no one wants to help. The rare few doctors who do want to help, like her and my GP, don’t know what else to do. Part of me doesn’t think anyone is ever going to be able to figure it out.

I’m trying really hard to “live in the moment,” and enjoy the time I have while I’m feeling well. It’s incredibly hard to do that though, when you know what’s to come. Honestly I would much rather feel terrible now and then feel better in the fall when classes start, but that would be too easy. Don’t get me wrong, I’m incredibly grateful to have been feeling well these past three months, I know many people with chronic illnesses don’t get a few good days let alone months.

My rheumatologist and GP spoke and decided I should do some genetic testing. We’re doing it through 23&Me which makes me a little skeptical of its accuracy, but it won’t hurt to see of it gives us any decent information. I sent it off a few days ago, but it takes up to a month to process. Even if we don’t get nay good medical information, it will at least be interesting to see where I came from. Being white, I know it isn’t going to be every exciting, but it will still be interesting.

What’s going on in your life?

Have you/are you doing any new testing or starting a new treatment plan?

 

Lots of Love,

Alyssa

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?

 

 

Getting Back into Things

For the past 3 1/2 weeks i’ve been going to the gym.

I gained a ton of weight on Gabapentin, like a lot. It’s hard to gauge exactly how much it is since before the rapid weight gain, I had rapid weight loss. Pre-chronic illness I weighted between 120-125 lbs, then I gained weight from meds and went up to 138 lbs, then I lost weight because of Cymbalta and Topiramate, down to 112 lbs, and finally I gained on the Gabapentin and Amitriptyline weight all the way up to 170 lbs. If you count the weight gain from when I lost a lot of weight then i’ve gained nearly 60 pounds, if you count it from before chronic illness it’s 45-50 lbs. Either way it’s a lot and needs to change.

For reference i’m 4’11 and 3/4 so being 170 pounds makes me over weight. I can deal with the weight gain, because I know I can lose it, but the stretch marks are distressing. I don’t have the silvery-white stretch marks that are barely noticeable. Since mine are “new” they’re bright red and everywhere. They’re the worst on my arms, but they cover my thighs, have crept onto my calves, cover the side of my stomach, and have popped up on the front of my stomach. I feel like a hypocrite because i believe everyone is beautiful and shouldn’t love themselves no matter what, but I honestly hate the way my body looks right now.

Right now I’m on an upswing with my health. I’m out of a flare and feeling pretty well. The biggest thing to celebrate is that I’m actually sleeping, so I don’t feel like a zombie all day. There’s no way I could go to the gym 5-6 days a week if I was still feeling so poorly, so for now I’m getting in all the exercise I can. I’m definitely not someone who loves going to the gym, it’s kinda boring and I don’t like working out around other people. Once you start to go regularly though you start to notice things.

For one, everyone is in their own bubble and doesn’t care what you’re doing. Also you’re probably not going to be the most out of shape person there. Sometimes super thin girls will get on an elliptical next to be and look half dead ten minutes in and by fifteen minutes they’re done. This is just one of a million reasons why weight doesn’t always correspond with health.

So far I’ve lost 4 pounds, which isn’t much but it’s better than nothing. I’ve been out of town for part of the time so I couldn’t go the gym, but for the most part i’ve been sticking to it. To me working out isn’t the hardest part, it’s eating healthy. When you feel terrible you don’t want to make something to eat. It’s easy to grab whatever’s available and takes no preparation. The problem with that is the things that take no prep are often processed foods, with little nutritional value.

Finding a diet that’s sustainable has been difficult. I really don’t want to put a ton of work into this now for it all to come back in a year or two. I’ve watched everyone in my family yo-yo with their weight so I know this isn’t going to be easy. I’m also currently taking another medication that can cause rapid weight gain, so I’m hoping I can go off of it soon since it doesn’t seem to be helping the tachycardia issue.

I’m counting on this getting easier the longer I do it. If you’ve lost weight/ started trying to live a healthier lifestyle, how did you stay motivated?

Lots of Love,

Alyssa

 

 

Getting My GED

I finally bit the bullet and took all four of my GED tests!

I had studied off and on since January, but I knew I was stalling and needed to go ahead and get it done. Honestly I was just really afraid of failing.  When I was studying it wasn’t that hard, but I thought it would be really embarrassing to fail a test that’s supposed to be easy.

I took the social studies portion on May 2nd and passed with flying colors. Then I took the math test and the science test on May 9th, which were the ones I was most nervous about. Luckily I also did really well and overall it wasn’t very hard. Finally I took the English test yesterday. I’ve always done well in English and aced all of my state mandated English tests, so I wasn’t worried about this one at all. I could have done them all in one day, but with my chronic illnesses I didn’t think that would be a good idea. They allow you so much time to test, and I wasn’t sure how much I would actually take so splitting them up seemed like the best choice. I passed them all as college ready which was really exciting, and I was one point away from getting college credit on the science portion. 

I’m so so happy to be done with the high school portion of my life! I honestly can’t express enough how much this is a huge weight lifted off my shoulders. I’m done with high school… early. Yes a GED isn’t as good as an actual high school diploma, but back in the fall I wasn’t so sure I was going to be able to even get this done before the Summer began. Now all I need is my license and I can start taking college classes at my local community college in the fall! The situation may not be ideal, but I’m choosing to celebrate the win and look forward to getting my life back on track.

Lots of Love,

Alyssa

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