What is causing these symptoms? Please help.

[cjay87]

I am in desperate need of help. I've been living in my own type of hell for years. I'll try to be as specific as I can without making everything too complicated. I'm a 31 year old female, in good physical shape. I have chronic back pain and I do smoke, but I'm otherwise healthy.  

I have a pain in my neck. It feels like I'm being choked, every minute of every day. It's a tightness, right in the middle, front of my neck- although it started out on my right side.  

Initially, I started waking up in the morning and I'd cough, right after taking a breath. I'd cough up mucus, and attribute it to allergies. That eventually turned into the feeling of mucus in my throat every minute of every day, but I only have this feeling on the right side of my neck—still to this day, I feel as though I can't clear my throat on the right side, no matter how much phlegm I cough up, the feeling remains.

Then, I had a full feeling in my ear. Occasionally, when I'd put a warm washcloth on it or relax enough, water would come out of my ear. The feeling of fullness in my ear has never gone away. I'd get occasional ear ringing, too. From that, I had a pain on my face, below my right eye- on my right cheekbone. (I don't know if this is of importance to get a diagnosis, but it was my major complaint when I initially went to my doctor – second only to the fullness in my ear and headaches.). Progressively, I started getting tension headaches, with a "pulse point" usually in the back of my head; it felt as if someone was hitting me in the back of my head with a baseball bat. I also get headaches in front/all over. As I type this I have an extreme tension headache in the front of my head (forehead).

I'm not quite sure when my neck started bothering me, but everything happened in this order. From there, I would get dazed and confused – I'm assuming from the throbbing pain in my head and the tightness in my neck. It would get so bad that my 20/20 vision would become blurred, and I felt as if I was never thinking clearly.  I'm not exaggerating when I say, the pain in my head is the worst I've ever experienced -- I KNOW something is wrong.

I also remember realizing something was very wrong when I'd be in the car, as I couldn’t keep turning my head to look at what was passing by. If I attempted to, the tightness in my neck and pain in my head would become more severe.

Also, on numerous occasions my face would become red- like a sunburn. It would feel warm to me, I would know my face was red before I'd look in a mirror. I was not nervous or anxious when this would happen— and it wasn't a blushing, it gets a bright red. Exactly like a sunburn. (Again, I'm not sure if this is of importance. I just wanted to add it in because every time this happened, it would be at a time when I was feeling particularly awful.)

I have never improved from any of these symptoms, but I have good days and bad days. Lately, the tightness in my neck is extremely bad. I just can't take it anymore. And as usual, the headaches accompany this tight feeling in my neck.

I've seen my primary doctor a load of times. I waited a long time before seeing him at first, thinking he could help me. Waiting till I couldn't take it any longer didn't serve me well when he didn't know what was wrong, as I was already in my misery. The very first time I met with him, I told him about below my eye, that I can't clear my throat, (pointing to what I'd later learn was my saliva gland), the tightness in my head and neck—and I showed him veins on my left leg because I would get pain there and I thought I was too young for the vericose veins I started getting in the spot that would bother me. Naturally, he sent me for blood work. I had a test done on my legs to check my circulation (my left leg did, in fact, have a minor difference compared to my right). I had a bone scan done-- and when I did, the clinician asked me if I was ever hit below my right eye. (I wasn't, but that's where I'd been having pain). I had x-rays of my sinuses. An MRI, a CT scan. I've been to my primary doctor, a Rheumatologist, an ENT, a Gastrologist, a Chiropractor. I had even gone to the ER on one exceptionally bad day- and I was told they, "couldn't help me". At the time of my ER visit, my neck was so tight that I couldn't turn to look up at the TV in my room, I didn't have the range of motion. I've been given 4 different antibiotics (at different times, of course) and a steriod; nothing helped.  

It was OCT 2016 when I first met with my doctor. In January/February he had given me steriod (I'd tried the antibiotics before that). I'm unsure if it was a side effect or because of stress, but for 2 weeks In FEB 2017 I could barely walk. At the time, I was going to see a Rhuematologist, and I thought it was arthritis. It started in my left leg, where I have the vericose veins and occasion pain- and the feeling made its way to the rest of my body. I felt like the tin man; every joint was stiff. It hurt to move- I couldn't even climb out of the shower without help. Because I thought this was the arthritis I was hearing so much about, I didn't see my doctor at that time. And, thankfully, I haven't had that happen to me again since.

While at my appointment with the ENT, it should probably be noted that when he'd put the magnets they use to my head, on my left-hand side behind my ear, I could feel the vibration- but I couldn't hear a thing. He did use a scope, but he didn't see anything.

I was also able to meet with a chiropractor a few times. He was able to confirm what I could feel—that the muscle tension in the back of my neck was severe. (I believe that this is because the front of my neck is so tight.)

The only thing that I've learned from all these tests and appointments is that I have Raynaud's, and that it's my saliva gland that you can visually see is swollen from looking at my neck. I had also met with a TMJ doctor, who told me I have TMJ, but that it wasn't likely that is why my salivary gland is swollen. (I was given a mouth guard, but my dog got ahold of it so I wasn't able to use it very long. For the short period I could use it, I didn't notice any improvement).

My quality of life has been disintegrating before my very eyes. I've become a homebody and have been feeling detached from reality because of these horrible symptoms. I will also note, I'm not magnifying my symptoms at ALL- throughout this, every time I'd think it honestly couldn't get any worse, it would. I never complain and rarely even acknowledge when something is bothering me. However, in this circumstance, I've even went as far as to contacting the Cleveland Clinic. I am absolutely certain something is undeniably wrong, I just don't know what. I'm open to hear ANY suggestions or diagnostic guesses. I'm willing to do ANYTHING to make this stop. If you have any questions, please, ask. I will absolutely respond if it means someone is hears my cries.  

[specialmom]

Wow, you have been on quite the health journey.  Sorry all of this has happened!  So, a couple of things---  I do admire your stick to it attitude to find out what is going on.  It's unfortunate that it isn't just a straight forward answer and has been so hard.  A couple of things stick out to me.  They may or may not be part of this.  So, inner ear tube dysfunction, the Eustachian tube, can cause some of the things you describe.  I have had this myself.  It's intermittent ringing, pressure, fullness.  Mine flares up and being sick, changing altitude or super stressed moments can trigger it.  Holding my nose and blowing out, which pops my ears (called a reverse ear pop) helps me if I do it over and over.  An ENT taught me to do that.  It's more on one ear than the other.  When it is REALLY bad, I get vertigo too.  My husband has sinus issues. Those run in his forehead, down his cheeks and are such a bigger path than most think of for their sinuses.  He has facial pain with it.  And headaches.  And it can stay clogged for up to 6 months at a time.  He had one surgery.  Then another bout of 6 months of the sinus issue but surgery is no longer an option for him due to missing a small bone in his skull discovered during an MRI.  Surgery is too risky.  He's found that nasal lavage with a netty pot does wonders.  If you haven't tried that, do.  And with regards to neck tension, I relate to you there as well.  I had a car accident in which I heard the wheels squealing behind me and turned my head at the sound, which then made my head go over turned when I was rear ended (totaled my car, was a bad wreck).  My neck was a disaster on one side from that.  I drove a lot for work at that time on long car trips and had stress.  I had such tension and headaches I couldn't tell you.  Things that helped were MASSAGE.  Can't say enough about how that helped me.  I went to a medical massage place and they only worked on my neck.  I learned all sorts of things then as well as I did physical therapy.  Massaging the upper part of your chest helps relieve neck tension.  Right behind your ear can be tight and is a good place to even massage yourself. Stretching is essential.  Ice packs on the area that is tense helps.  And ibuprofen.  

Not sure if any of that helps but wanted to just throw some things out there.  Hope it gets better soon.