Monday, April 16, 2012

Being sick sucks

A few weeks ago I mentioned I've been dealing with an annoying and difficult medical issue. It has been a strange experience dealing with it, and I haven't wanted to discuss it. But now I've reached the point where I need more help. I need to share it because I need to know if anyone else has ever experienced anything similar.
I personally think that I was misdiagnosed a few months ago. Here's why-
Back in November I got several sinus infections. One after the other I felt like I spent 1-2 months congested and miserable. Lots of coughing, lots of cough syrup, and antibiotics. By Christmastime I was starting to notice that my sinuses were clearing up, and I didn't feel congested anymore, but my sore throat was persistent. I felt like I had a constant post-nasal drip situation going on that wouldn't stop with any decongestant. And I kid you not, I have tried every single thing on the market, plus several homeopathic, natural, etc., remedies. Not one thing at all has made any difference.
By mid-January my doctor decided I had reflux, and a strange little condition called "globus." It sounded reasonable to me. The answer meant taking prilosec, zantac, and claritin or zyrtec. No big deal. I read up on globus, and it sounded like a good fit. The main symptom is feeling a "golf ball" is lodged in your throat. The idea is that the acid from the reflux has gotten up into the esophagus. The golf ball description sounded perfect for me. That was exactly how I felt. It also is very difficult to swallow even just the regular, normal, natural amount of saliva in my mouth. It feels like it refuses to go down, or that it is stuck in my throat.
I've had reflux many times in my life. But not once ever in any of this have I had any reflux or heartburn that I felt or noticed.But the globus description sounded good.
By mid-February I wasn't getting better. I can't say I was worse either. So the doctor doubled my prilosec and zantac. Still no change.
By mid-March I was flat out desperate. Every single day for four months I have felt like I am choking. I've learned to just deal with it. The only thing that stops the choking feeling is to talk or sing. So I actually had to force myself to start talking to myself all day. I hate doing it, but somehow it helps. Around mid-March is when a few new symptoms kicked in as well. My neck (not throat) is constantly sore and painful. Also, I noticed I can't cough anymore. Even when I feel like I am choking on something, I can't cough. If I try really hard and force out a cough, it sends all of the muscles in my throat, neck, and tongue, into spasms. And those hurt more than anything!!
I frequently get short of breath. To me it seems I'm short of breath because I'm always at a fairly high level of pain. It is exhausting to be in an unrelenting amount of pain all day long. My doctor also again doubled my prilosec, and told me to just start taking it every time I feel worse. Well, if I actually did that, I'd have taken in a whole months' worth of pills in the first day. I have not once felt like the prilosec has made any difference.
I always have a headache. This is a new and annoying problem. My headache is just a given. There hasn't been one day where I can say there wasn't a horrible headache involved. Thankfully Advil or Excedrin (or both together) seem to knock it out.
Amount of meds I am now up to- In the morning, crazy huge dose of prilosec (80 mg I think?), zantac, allegra-D, and Advil Cold and Sinus (this may be the only drug I actually feel like is doing something for me). After four drugs, there is almost no difference in how I felt before I took them and after I took them. At night I take another 80 mg, and Benadryl. I figured out months ago that the only way I can sleep through this choking sensation is to take a Benadryl. None of these meds seem to make a difference, but I keep taking them anyway. I'm not really sure why.
Other oddities- I used to be able to drink sodas all the time. In fact, I liked sodas because I liked how the fizzy feeling seemed to knock down any congestion in my throat. Oh how I wish I could do that now! But instead, a few weeks after I started the reflux meds, I actually got my first reflux symptom. From the very second the soda goes down my throat, it is a miserable, awful experience. It hurts so bad that it is never worth it.
I can eat or drink just about anything (except carbonated drinks). Spicy, greasy, etc, you name it- all fine. Nothing makes it better or worse. Except for hot and cold! If any food is too hot or too cold, it sets off either spasms, or the golf ball feeling. I rarely ever drink milk. But the few times where I thought I would sip some and see if that helped my throat (because it should have if I had reflux), it actually made everything worse. I instantly felt like I was choking on something too big to swallow.
And now for my last and grossest symptom. Somewhere in the past month or two, I've started having serious troubles swallowing. Solids go down just fine. In fact, solids go down great. But liquids? Ugh. It is miserable. I swallow, wait a second, and suddenly it's just back in my mouth- mixed with bile and mucus. I don't choke, gag, or cough it up. I don't vomit it up. All liquids just slide right back up. I hate it.
Other odd possible symptoms- every time I swallow I hear a crunching in my ears. And my ears pop a lot more than they used to. My throat usually hurts so bad that I can feel my pulse in it all the time.
I tried a neti pot this weekend for the first time. It didn't make matters better or worse. But it did make that constant post-nasal drip thing taste very salty. And now when I "spit up" whatever liquid I tried to drink, it tastes like saltwater too. I feel like I am swimming in the ocean. (Also, word to the wise, if for some reason you know you might be crying soon (for me it was a funeral yesterday), I highly recommend not trying a neti pot. Brought a whole new meaning to salty tears.)
So I'm convinced it is not just reflux or globus. In fact, I know it isn't. I've gotten worse and worse to the point where it isn't just a sometimes a day problem, but is a non-stop, never goes away problem. Every minute of my day is affected by it. I'm constantly exhausted, and on the verge of a meltdown from the pain.
I called my doctor last week for more help. She said she would double my prilosec again. I am so sick of her doubling a drug that seems to have no effect on me, that I finally called to get a second, and third, opinion.
I've put my symptoms into WebMD and the Mayo Clinic. The results are very mixed, with one constant between them. And that option seems very likely, but it is almost too obvious. So obvious that it seems strange that my doctor would be missing it so wholly. Which makes me wonder if she's ruled it out and I don't know about it. Either way, I've made an appointment with a specialist in that area for a few weeks from now. And my doctor did finally refer me to a specialist for the supposed reflux. I spoke to that doctor over the phone. He completely agrees with me that it doesn't sound like a straight across case of reflux. I won't get to see either of my second opinions for a few more weeks yet. That is, if I can keep from running madly into their offices and demanding help NOW, in the meantime.
I'm exhausted. And like I said, I kind of live right on the edge of my emotions right now. I know it is hard for everyone else to see that I am in pain. But the pain honestly doesn't stop, ever. I haven't gotten hoarse, or lost my voice, during any of this either. But I do feel and recognize that I am losing a little bit of control over my voice. Tonight I noticed that I was struggling to keep my voice even-keeled, and at the right pitch. That has happened a few times recently where I feel like I can't quite control my sounds perfectly (especially while singing).
So like I said, I'm putting this out there, just on the off chance someone has heard of something like this. I'm not crazy about what WebMD and the Mayo Clinic have suggested. And I hate self-diagnosis from the internet as well. It is rarely right! If you have any ideas please let me know!

5 comments:

  1. Yikes Erin. That sounds down right miserable. I hope you get some relief soon.

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  2. Gosh that sounds horrible. I hope you can find a doctor who can help you soon. I know about that myself. I have a rare medical condition that very few people know about. Couple of things I would make sure to rule out (which, yes, your doctor should be doing, not just upping a medication that isn't doing anything and sounds like you might need a new GP). First, thyroid stuff. Growths on thyroid can make it hard to swallow. Second, esophageal problems, so having a swallow test or scope can be helpful to see what is actually going on down there. Interesting experiences with your neti pot. I'm guessing something weird is going on with that if you are crying extra salty tears. I wonder if a sinus/head/throat x-ray or CT could see if something is going on or blocked in that area. As far as the ear stuff goes, its probably related to some inflammation you have in your throat/neck area not allowing the fluid that drains through the eustachian tubes so it causes the crackling in your ears as well as pressure build up that causes feeling the pulse.

    It definitely sounds like there is some inflammation somewhere in your neck or throat that is causing the problem, just need to figure out where the swelling is and why. That's my unofficial diagnosis. :) I've had to do a lot of my own searching for medical stuff too and sometimes wonder why I pay doctors when I do their job. I'm a lot better on the heart and autonomic nervous system stuff since that is my condition. But am willing to help do the differential if you want help with sorting it out. I love medical stuff like this (when its not me being sick). :)

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  3. Erin, I hate to say this and I seriously hope I'm wrong but in thinking about how medication is not helping and with some friends experiences to go on - you should rule out a brain tumor. The drip could be brain/spinal fluid. I so hope I'm wrong but on the other hand, let's get it fixed so we can have a healthy Erin to read and read and read....

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  4. Anonymous1:01 AM

    Did you rule out tropical illnesses from you trip abroad? I started reading this when you wrote about applying to Peace Corps and visiting Cambodia. Sounds far fetched but I'd recomend mentioning your travel to any specialists you see.

    Holly

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  5. I would suggest getting to a specialist ASAP and getting to the root of your problem. This could be one of a number of things and self diagnosis is not the answer.. Just sayin'... This is my first visit to your blog.

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