I'm about at my wits end here and now I'm seeking some direction. I'll start off with a little history ...
I have had Tinnitus for about 13 years (am now 31) that was really mild. I was also very healthy but slightly over weight (about 235lbs But I started to diet and am now 175lbs) and have never really needed to go to a doctor. This all changed when I turned 31.
About a year ago I had a head cold that would not relent that turned into a sinus infection that eventually invaded my ears (the doctors think) and my Tinnitus perception increased greatly. I also developed eustachian tube dysfunction and an audiogram showed that I had a mild hearing(-30dB) dip in my low frequency hearing. A CBC didn't show any increased white blood cells and CT scan showed thick mucous blockage and an enlarged cyst in right maxillary sinus cavity. My doctors put me on Flonase (2x per nostril twice a day for over a year now), Singulair (1 x per day), Bactrim, a short course of Prednisone, and eventually performed a Sinuplasty and Septoplasty (which didn't help). My ETD is just as bad as when it started and now my wife can hear a clicking noise coming from my head when I slightly swallow or flex my jaw (I can feel pressure release as well). I also had a follow up hearing test about 6 months later and my mild hearing loss had reversed itself back into the normal hearing range.
I also noticed lots of new worm like eye floaters and doughnut shaped dots in center of my field of vision. There are also numerous darker floaters near the bottom of my eyes when I look up. I also developed a tiny flash in my eyes and some slow moving lightening bolts that stray out my vision. I went to an Ophthalmologist who dilated my eyes and gave me an examination. He said he noticed a “few” floaters but my eyes were healthy otherwise. He then suggested that I get a visual field test (which is next week).
Here is where things get a tad troublesome. Along with the Tinnitus, ETD, floaters and flashes I have now either became aware of or have developed Visual Snow in my eyes which is pretty bad at night and it is the same whether my eyes are open or closed.
Pretty great right? Just wait there's more...
My left leg becomes slightly numb about mid way down my shin and stays that way for days at a time. Sometimes my hips seem to get locked and it takes me a while “to walk it off” and it can be very painful. My arms or legs sometime “jump randomly”.
I took these symptoms to my GP before the visual problems started and he scolded me by saying, “Just because you can make a list of symptoms doesn't mean you should.” My previous GP told me to be “a man about my Tinnitus” when it became much louder” and refused to prescribe me any medicine to help with the stress and panic I was feeling. Medicine I haven't taken before or ever requested from him.
After being told this I now think doctors think I am crazy or that I am making this stuff up.
I'm not - it's very real to me and seems to be progressing slowing and becoming worse. I'm a tad gun shy about going back to a GP as I always end up feeling much worse (mentally) after the visit.
Hi nscott.I am jst putting this idea to you, as yo seem to have a lot of symptoms of IIH or Pseudo Tumor Cerbri. I am not a dr but i do have IIH.
Prior to my headaches really starting, I had what I would call Tinitus, or thought it was. Also blurry vision, silver stars in the front of my vision, floaters. I would also get flashes of white light.
As time passed,and I was ignored by my dr, the syptoms became worse till I ended up in hospital and meet with a neuro.
You should have an eye test, visual field test, slit lamp test and visual accuity test done.You need to make sure that your eyes, their nerves etc, are in fact ok.
IIH/PTC, is a very rare illness and very difficult to diagnoses.
Any problems with your eyes should never be ignored.
Drop me a line if you think I can help/Cath278
Sounds like you should never see those doctors again. “Just because you can make a list of symptoms doesn't mean you should.” makes no sense. You're trying to help yourself for Pete's sake!!! You're supposed to advocate for yourself, because Lord knows a lot of doctors don't. I'd also like to see that other GP walk in your shoes and be "a man about [their] Tinnitus.” There are a lot of people in medicine who can be straight up tools. (Example: https://www.youtube.com/watch?v=gEhhEbaBQkY). Let's not forget that modern medicine still has a LONG way to go. (we still haven't cured the run of the mill every day common cold) Unfortunately, a lot these people don't take this fact to heart and just simply can't bring themselves to say "I don't know what's wrong, and I'm sorry for that"; instead they have to make it seem like something is personally wrong with you.
All I can say is never give up, and I hope you've made progress or found some peace with your issues. Good luck, and please fill us in if you figure anything out as I'm working through something similar.
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