The doctors can't figure it out

I've told my doctors and ENT that it feels like I'm "drowning from the inside" just on the left side of my head. It comes with exertion, overheating, and if I look from side to side too much (like when you're out shopping) I feel a warm fluid like feeling on the left side of my head, then my ear gets muffled and it sounds like that ear is underwater. It's very disturbing. I started getting that, then it would only come sporadically. Then I had 5 episodes of sudden deafness I the left ear, and regained my hearing after strong courses of corticosteroids. The ENTs initially thought Meniere's, but the VEMP test and lack of vertigo proved negative. They still don't know the cause. After the last episode of sudden deafness, I have had the fluid issue every day that I try to be active, even just cleaning the apartment can trigger the fluid weirdness. I take antihistamines every 4-6 hours to lessen the severity of it. But it's freaky that the specialists are stumped. They prescribed me a diuretic believing that I must have some problem regulating the fluid in my vestibular system.

In general, have been diagnosed with: IBS-C, migraines, chronic sinusitis, toxic multinodular goiter, sudden deafness, anxiety, depression, OCD, possible UC, TMJ, getting testing for sleep apnea.

4 Replies

oldestnewest
  • I forgot I also have GERD, dyspepsia, hiatus hernia, seborrheic dermatitis, keratosis pilaris, dry skin.

  • I just learned about EPI, endocrine pancreatic insufficiency. It is responsible for chronic sinusitis. The mucous glands are out of whack. It also involves sweat glands are screwed up. Of course due to immune problem from lupus.i guess. I forget some of info I read&ihave to kinda put in my words. But the facts are the facts.

    I am so excited to learn about this immune insufficiency EPI.

    THE MUCUS IS VERY VERY VISCUOUS. VERY DIFFICULT TO GET OUT BECAUSE IT IS SO THICK. THEREFORE CHRONIC SINUSITIS. I CAN NEVER TOTALLY BREATH CLEARly. SICK ALL MY ADULT LIFE . FORGETFULNESS & SPACED OUT,. Foggy.weak .

    I might skip around alot. Just bear w me.

    The sweat gland problem can be verified by the taste of salt on you lips initially. The saltiness is very strong if you taste your arms for example. I express it as Maybe an autoimmune cousin to cystic fibrosis. I put in my words to express clearer in my mind. To help one understand. You of course can go online & lockup this autoimmune disease related to lupus i will call it. The symptoms I can run by u really fast. Really bad smelly excrement due to inability to digest food well. The thick mucus plugs up the pancreatic duct. Mucous is all throughout the body. In this case it is just really really thick & therefore causes big problems throughout. Bulky stool. Fat/oil in the toilet bowl on top of water of course. Feces can also float. Of course if food is not being digested and absorbed it is moving through you really fast. You can eat spinach for example and excrete in a few minutes later.

    Clubbing of fingers or toes. Toes in my case. That is the endsof the finger is bulbous like. More wide at thedistal end of the digit. Like a club. It may not be very obvious. Because that's normal for you. You havealways have these toes. Thought they were fine looking toes. But if you look at them closely. Yep they are wider at the end. Also fingers. My fingers I call are sausage- like fingers or man hands. Not feminine looking fingers but not obvious clubbing. To me. They are the fingers i have always had. They looked ok to me but if you look carefully. Yep there. Might. Be just a bit of clubbing there.lol. especially inthose thumbs? Huh.

    I will skip around . whatever pops into my scattered brain at that moment.

    I am thinking about the genetic part of this problem with our DNA.

    I read of course, this disorder is more prevalent in those peoples from northern Europe. Yes that includes svotland, Ireland. Wales Britain. I did not know about Latvia being that far west etc..look. It up foryour self exactly what comprises northern Europe .i had to. Finland Switzerland etc. Norway .u get the idea

    I also have sjogrens & raynards. That's something I just wanted to let you know. And mild stable SLE. Of course.im having. Trouble remembering all the symptoms at this moment. I ha d started texting early this. Morning on this web site. In trying to get the info out there. My rheumy did not respond when I explained the mucous problem to her. Went said. Nothing there. Come back after rinsing sinuses with neilmed with 2 bottles solution every day for a month , then come back. I have talked about some of these things already earlier. The foul smelling excrement was hard for me to break to you all. But now its out there. Oh I remember now. V

    CONSTIPATION. TO A POINT THAT THE STRAINING CAUSES THE RECTUM

    TO EXTEND OUT. DUE TO STRAINING. I CAN'TTHINK RIGHT NOW WHAT ELSE. AT THIS MOMENT.

    TALK LATER

    ,

    .

    .

    .

  • It could be brain or heart related as well. Have you gotten any CT scans, or x-rays? If not, don't rule them out.

  • I am not medically qualified - but your symptoms are SCREAMING thyroid at me :-)

    The Active Thyroid hormones are required in every cell of the body - over 30 trillion ! Have you been correctly tested and not just the TSH ? You also need the FT4 - FT3 tested for the complete picture and the anti-bodies that attack the thyroid - Anti-TPO and Anti-Tg.

    I would also insist on having the following tested - B12 - VitD - Ferritin - folate - Iron. Docs are happy when in range for all the tests I have mentioned - but WHERE they are in the range is VERY important. One size does not fit all.

    Take a look at Thyroid UK - here on Health Unlocked - where over 30,000 people discuss the difficulty with GP's testing/diagnosing/treating the thyroid correctly.

    When the Thyroid hormones are low - everything in the body begins to go wrong....especially important vitamins like B12 and VitD. Click onto my name to read my edited Profile and health journey. Happy to answer questions.....

    thyroiduk.org.uk/tuk/diagno...

    Am afraid we have to read and learn and take control in order to find wellness..... :-)

You may also like...