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Fed up with Fullness!!

Discussion in 'Your Living Room' started by Jedirusty, Apr 9, 2019.

  1. Jedirusty

    Jedirusty New Member

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    Apr 8, 2019
    Hi all, So glad I found this page! I've had symptoms going on 10+ years, finally got diagnosed with Meneire's this year. First time the fullness came on 10 years ago they put me on a steroid pack and that brought on shingles due to an immune system reaction. Throughout the years I've had periodic vertigo and what I thought were ear infections fullness, hearing loss, really bad sound sensitivity and bad tinnitus. Found out I lost 30% of my hearing in my right ear. Just listening to people talk can make me fall over sometimes depending on what kind of room i'm in the sound sensitivity is so bad.

    Thankfully the vertigo doesn't occur all the time, maybe once a year at its worst. The thing that I struggle with the most is the sound sensitivity and the fullness. its as though my ear wants to pop but it can't. It feels like its almost on the verge of popping all the time but never does and I can't get any relief. I've been trying the low salt thing for a few weeks now but am finding it sooooooo hard, honestly i have my doubts that it will do any good. has anyone had relief with the diuretic when it comes to fullness?

    My doc says to try the low salt for a month and if no relief to try the diuretic. but I know my body and feel like there's something else wrong. a lot of times i would go to the dr and get antibiotics and the fullness would go away. So far I've had this bout with fullness going on over 6 months and its never lasted this long.

    Also my MRIs show I have a vascular loop surrounding the nerve but my doctor doesn't seem concerned with it. I'm kind of overwhelmed with all the information online here and don't know what to do next. Should I go back and ask to try antibiotics again? continue the low salt thing? supplements? Surgery? The fullness is driving me nuts!! :p
     
  2. redwing1951

    redwing1951 Well-Known Member

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    I can feel for you. The fullness can drive you nuts! Welcome to the forum .You will find a lot of support here. One thing you might want to discuss with your doctor is antiviral medication. Many folks on this board have had great success using them. I am sure they will come along and and answer your questions. I had a different experience with menieres and went the surgical route due to vertigo. You need to get a definite diagnosis. Don't give up hope. There are plenty of recommendations on this board. Don't be afraid to ask questions. Good luck?
     
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  3. Jedirusty

    Jedirusty New Member

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    Apr 8, 2019
    Thanks, I'm excited to look into all the advice i can find here!
     
  4. Pupper

    Pupper Active Member

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    Sucks Jed. I don't know what to tell you. I've got the fullness and hearing my own voice from the inside when I talk, like when you stick your finger in your ear.

    Here's a popular Meniere's learning site:

    Meniere's Disease
     
    • Like Like x 1
  5. AnneT

    AnneT Active Member

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    That blood vessel loop... do you think it’s worth a second opinion? Will they at least monitor it?
     
  6. Jedirusty

    Jedirusty New Member

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    Been to 4 ENTs so far, finally could afford an MRI so the last one sent me to an otologist after seeing the loop but he said he wasn’t concerned, he said lots of people have them and it’s most likely from salt. He went on to say that 80% of the people come in with these symptoms get relief by reducing salt intake. I don’t know what to believe...
     
  7. redwing1951

    redwing1951 Well-Known Member

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    Low salt diet did help early into my menieres diagnosis along with a diuretic. It's certainly worth a try. Today I still stay away from table salt and high salt foods. It affects my tinnitus and also fluid retention.
     
  8. Clare

    Clare Active Member

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    My symptoms are sodium-sensitive, and being careless would invite trouble. During an otherwise steady period, a single slice of pizza had me horizontal the next day. Remember, it's about sodium intake, not just salt. If you read labels, you'll find huge amounts of sodium in most canned tomatoes, beans, and other vegetables. Cheese is an offender, too, as is almost any processed or restaurant food. Goodbye to bacon, sausage, and pickles. However, even when following the low-sodium diet carefully, it seems that some people don't benefit, and studies have been inconclusive.

    If you're up for one more shot at a doctor, try to find a neurotologist -- someone who specializes in conditions that cross between the inner ear and the brain. Meniere's is in that peculiar space, and docs who specialize in ear disorders (ENTs) or brain disorders (neurologists) often don't know much about diagnosing symptoms that cross out of their specialty.

    Good luck, Jed. There are lots of people here who understand what you're going through.
     
  9. Daniel

    Daniel New Member

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    The fullness is easily the most bothersome symptom for me as well. I would really try and manage your sodium as best you can. Many people report a benefit to administering your intake evenly throughout the day, with varying degrees of success, on top of restricting your overall mg intake. Like many things with MM and as you will find on these pages, there isn't one thing that works for everyone. I would consider the diuretic as well. Again, it doesn't work for everyone, but many have reported some benefit from it. It did help with my fullness, but I also had several side effects from them and chose to stop taking.

    I'm fairly new to this forum as well, but I can tell you that it is probably the best resource I have found thus far. I started seeing a NUCCA chiropractor 2 months ago. I started antivirals (valacyclivor) 4-5 weeks ago. I started JOH regimen 10 days ago. I added b vitamin regimen about 10 days ago too. I saw an allergist last week (no allergies to report) and I saw a TMJ dentist yesterday. These are all things that I've picked up on this forum. I've decided to go down the list of anything that makes sense to me that could be a cause and attack them all. This is in addition to seeing one of the top ENTs in New York. His best advice is to learn to live with it. He's a competent physician, but what I've learned thus far is that you have to be your own advocate and physician. There may be no cure, but many people do recover to one degree or another.

    For myself, I'd say I'm probably 50% better than I was in December. I was diagnosed in November but December my symptoms had gotten to be the worst. In December, fullness was 10/10, distortion 9/10, tinnitus 6/10, dizziness 5/10. I have diagnosed low tone hearing loss as well and I do not have any vertigo, so technically my diagnosis is cochlear hydrops.

    Today, my fullness is 2/10, distortion 3/10 tinnitus 0/10 and dizziness 1/10. I noticed a slight improvement from my chiro treatments about 3-4 weeks after I started . I noticed some more improvements over the last week to what I attribute from the antivirals. I can;t say for sure how much benefit I'm getting from each. My whole point here is that I have been trending upward, and many people on this forum seem to do the same. So my best advice is to try and obtain as much info as you can. As you said, you know your own body, so do what you think makes sense based on your research for you.
     
  10. Daniel

    Daniel New Member

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    Mar 3, 2019
    The fullness is easily the most bothersome symptom for me as well. I would really try and manage your sodium as best you can. Many people report a benefit to administering your intake evenly throughout the day, with varying degrees of success, on top of restricting your overall mg intake. Like many things with MM and as you will find on these pages, there isn't one thing that works for everyone. I would consider the diuretic as well. Again, it doesn't work for everyone, but many have reported some benefit from it. It did help with my fullness, but I also had several side effects from them and chose to stop taking.

    I'm fairly new to this forum as well, but I can tell you that it is probably the best resource I have found thus far. I started seeing a NUCCA chiropractor 2 months ago. I started antivirals (valacyclivor) 4-5 weeks ago. I started JOH regimen 10 days ago. I added b vitamin regimen about 10 days ago too. I saw an allergist last week (no allergies to report) and I saw a TMJ dentist yesterday. These are all things that I've picked up on this forum. I've decided to go down the list of anything that makes sense to me that could be a cause and attack them all. This is in addition to seeing one of the top ENTs in New York. His best advice is to learn to live with it. He's a competent physician, but what I've learned thus far is that you have to be your own advocate and physician. There may be no cure, but many people do recover to one degree or another.

    For myself, I'd say I'm probably 50% better than I was in December. I was diagnosed in November but December my symptoms had gotten to be the worst. In December, fullness was 10/10, distortion 9/10, tinnitus 6/10, dizziness 5/10. I have diagnosed low tone hearing loss as well and I do not have any vertigo, so technically my diagnosis is cochlear hydrops.

    Today, my fullness is 2/10, distortion 3/10 tinnitus 0/10 and dizziness 1/10. I noticed a slight improvement from my chiro treatments about 3-4 weeks after I started . I noticed some more improvements over the last week to what I attribute from the antivirals. I can;t say for sure how much benefit I'm getting from each. My whole point here is that I have been trending upward, and many people on this forum seem to do the same. So my best advice is to try and obtain as much info as you can. As you said, you know your own body, so do what you think makes sense based on your research for you.
     
  11. June-

    June- Well-Known Member

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    Jedirusty, i didnt have vertigo but i had all the rest. Antivirals and allergy shots helped a lot. The antivirals took care of all the weird stuff like sound messing with your balance, strange echoes, autophony etc. Although i cannot say for sure what antivirals helped and what allergy h lped, i think the allergy shots helped the actual hearing loss. I know you have had this for a long time but i sure would try antivirals and maybe get allergy testing too. Good luck!

    Btw los salt, diuretics, prednisone etc never did a thing for me except make me worse. Eliminating caffeine gave me a marginal benefit.
     
  12. Dnrpn

    Dnrpn Member

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    I totally get it. Although my ent is on the fence about hydrops vs. tensor tympani syndrome, I feel it’s likely hydrops. I have lightheadedness not vertigo . My Family doctor sent me to a Neurologist who sent me for a head angiogram CT which looks specifically at the vascular system in the brain. He said issues within it can sometimes cause similar symptoms. Mine was negative but I think if I were you I’d get further info on that loop vessel. Can you get a referral to a neurologist?
     
  13. Dnrpn

    Dnrpn Member

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    Hi June, could you share what the allergy shots were? I’m really interested in how you were diagnosed with allergy issues and which shots to take. Thanks :)
     
  14. Svines

    Svines Member

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    Pupper, has any doctor ever mentioned the possibility that you have a Patulous eustachian tube?
     
  15. Svines

    Svines Member

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    I am struggling with the fullness too. Has yours gone into remission now?
     
  16. Jedirusty

    Jedirusty New Member

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    Unfortunately no, if anything it has gotten worse.
     
  17. Irishstu

    Irishstu Member

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    I found that the Jon of Ohio Regime with B5 and B6 helped give me some relief to my ear fullness.
     
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  18. Jedirusty

    Jedirusty New Member

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    Apr 8, 2019
    I'm going to have to give it a try... I've been slowly gathering all the supplements, hard to get all at once with a limited budget..
     
  19. wendy

    wendy Member

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    I have also found the JOH and B5/B6 has helped my fullness and balance. It wasn't until I upped the Lysine to 1500 MG and got some die off symptoms (week-long sore throat) that I felt the most relief. I have only been taking the Lysine, lemon bioflavinoids and vinpocetine. And also the B5/6. I just started in May and have been slowly adding in the other supplements.
     
  20. Saera

    Saera Active Member

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    Hi there!! Welcome to the group! I too get fullness and sodium plays a huge part. Caffeine is a major offender for me as well. Maybe give those things a try. No caffeine and under 1500 mg of sodium per day. Evenly spread throughout the day. Don’t binge eat 1500mg at night like I used to do. Lol!!

    I’m doing gentamicin hoping to control vertigo and drop attacks which are my most offensive and dangerous symptoms.
     

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