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Cochlear Hydrops or what could this be?

Discussion in 'Your Living Room' started by Steve1987, Jun 28, 2019.

  1. Steve1987

    Steve1987 New Member

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    I'm 32 year old male. I woke up one day in early January with both ears feeling clogged but one ear would have more pressure and feel more clogged than the other all the time. The pressure would change from ear to ear throughout the day. I had severe dizziness in the beginning for about 4 months. This dizziness is 90% gone now. I never had vertigo. I have had a flat hearing loss across all frequencies in the 10-15 db line. Although, I feel as it has been very slowly getting worse for the past 6 months since the pressure started. I have tinnitus 24/7 in my left ear. Bzzzzzzzz constant sound. I have been to many ent doctors and they all say everything is normal and have never been prescribed antiviral medication. I was very active in trying to figure out what's going on up to May. Now the cloggness, pressure and the amount of hearing loss is coming to a point where I can't take it anymore. After a lot of research on my own, I'm coming up with the conclusion that I might have cochlear hydrops. I am seeing my family doctor again tomorrow and would like to know if you think acyclovir is a good antiviral for my symptoms above after 6 months going through this? Also, if there is any other medication I should ask for.
    Thank you in advance!
     
    Last edited: Jun 28, 2019
  2. Irishstu

    Irishstu Member

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    Hi Steve. My symptoms are somewhat comparable to yours and i started on the JOH regime a few weeks ago and I am starting to see progress. Aural pressure has decreased and my hearing has improved. I haven’t started anti virals as of yet but that may be in my future if progress stalls. Valtrex seems to get mentioned a lot on this site but ill let someone on antivirals give further comment. Hope you get relief soon. S.
     
  3. bob_

    bob_ New Member

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    Hey Steve. If you're experiencing some mild hearing loss, tinnitus, pressure, and have had some dizziness... those are all the markers of Meniere's disease. You should find an ENT in your area who's had experience treating Meniere's in the past and see whether they think you're a candidate for that diagnosis.

    Traditional treatments include:
    • Low-salt (<1500mg/day) diet with no alcohol, no caffeine, no chocolate
    • Diuretic (Dyazide is common to start with)
    • A course of prednisone
    • Intratympanic injections (possibly dexamethasone)
    If a doctor determined you had cochlear hydrops or Meniere's, a course of treatment might be to try the diet, with possibly the prednisone or diuretic, to see if it makes a difference. In my case prednisone was the first thing my ENT suggested, followed by the dietary changes and diuretic.

    A few other notes:
    • There are a lot of folks on this forum for whom the traditional treatments haven't worked, but you should be aware of them. They do work for some people.
    • You can always try the diet on your own and see if that leads to a change in your symptoms.
    • It's possible your doctors have an alternative diagnosis in mind. You may want to be sure to tell them that your symptoms are changing day to day; that seems to be part of Meniere's symptoms.
    • If you share your general vicinity, people may be able to recommend doctors with experience.
     
  4. June-

    June- Well-Known Member

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    Acyclovir worked for me although my ch symptoms were somewhat different than yours. If you do take acyclovir, be sure to spread the dose across the whole day because acyclovir does not stay in the symptoms as long as famvir and valtrex. I took 400 mg 5 times a day. Drink water. I assume you have no liver or kidney issues and your dr knows your med history. It was my family dr who prescribed them for me. Do not expect an on off switch, look for gradual improvement with some setbakcs. Good luck!
     
    • Agree Agree x 1
  5. Steve1987

    Steve1987 New Member

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    Jun 22, 2019
    I'm located in Chicago IL. Just saw another family doctor today and explained my situation from the beginning. Did not suggest anything. Just listened and when I asked for a prescription of acyclovir she said this stuff is hard on the kidney. I'm willing to try things at this stage as my condition is getting worse and no one doctor seems to want to help. I haven't seen one small improvement since my symptoms started. How do I get these doctors to take me seriously?
     
  6. June-

    June- Well-Known Member

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    First i do not think, based on what my drs have told me that acyclovir is hard on healthy kidneys. If you have kidney or liver issues, then that is different.

    Tell your doctor in plain language the day to day effect this has on your life. Since it is not a visible disease it is hard even for doctors to know the mental and practical toll it takes.

    Tell them you want to leave no stone unturned before you have to turn to destructive surgery, more risky drugs like steroids that are routinely rxed for this, or diuretics which affect not just the ear but the whole body .... to get relief and that you want to stop the progression of the disease to classic menieres with vertigo. That (if true) what you have already tried.

    Let the doctor know that you know there is no guarantee that this will work for you but you want to find out, that you are asking the dr because you want to work with a doctor so you can approach this safely, that if it is used for shingles, chicken pox, cold sores, surely it might be all right to see if it works for your hearing.

    You might also let slip that you know antivirals are used at the House Ear Clinic (this will mean more to an ENT) and you have talked to numerous people who got relief and some who didnt.
     
    • Agree Agree x 1
  7. bob_

    bob_ New Member

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    Steve,

    You may have better results finding an ENT who has experience treating Meniere's disease and asking them whether they think that diagnosis fits you or whether they think there's something else going on.
     
    • Like Like x 1
    • Agree Agree x 1
  8. wendy

    wendy Member

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    Steve. If you are in the Chicago area, a well known Ménière's disease doctor is in your area. Dr. Timothy Hain. Google him. He has a website with information about dizziness, etc on it.
     
  9. California Sun

    California Sun Active Member

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    I have dealt with this monster for probably longer than most here. On and off from age 17 to the present. I am now 65. My experience has been that some doctors are sympathetic to our plight. Some are not, at all. I don't think there is any way around this except to keep trying different doctors until you find one who does take you seriously. I could tell you plenty of negative stories about how I have been treated by some of these doctors--so much so that I am very wary about seeing any more doctors--especially after the way I was treated by the last doctor I saw. All the other poster, or any of us can do is keep trying.
     
  10. EmilyP

    EmilyP Member

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    My symptoms are similar to yours.
    I went on JOH in late January
    Acyclovir first of February.
    B 5&6 in April .
    It took a good 3 months before a lessening of symptoms especially tinnitus. I think the the B5&6 for me were very helpful.
    I’m 6 months in now and have had 4 consecutive days of very low tinnitus. That is huge.
    All this started August 2018. I found ENT not helpful. This site has done more for me. Good luck
     
  11. EmilyP

    EmilyP Member

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    Hi June, could you tell me where you got the information about spreading out the acyclovir doses. I have been taking it seen first of Feb. 800 mg X3 and have seen an improvement in about the 80% range of my symptoms. Always staying alert for help at all. I also doing JOH and Vit B5&6. Thanks and I hope you are feeling well today
     
  12. June-

    June- Well-Known Member

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    Oddly enough, it was an eye doctor who impressed upon me the importance of spreading out doses with acyclovir. He said that as an eye doctor he deals with these viruses a lot and he preferred valtrex because he did not have confidence that his patients would properly spread the acyclovir out though the day. Valtrex and Famvir dont require that as much. I thought to myself it was very little trouble to take a pill five times a day compared to dealing with the life spoiling symptoms the acyclovir relieved.
     
  13. EmilyP

    EmilyP Member

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    Thank you for this. When I was in the very beginning of this MM mess, my ENT put me on a diuretic with no explanation about the drug at all. It was very strong and started making me sick. My eye doc told me I was on the BIG pill and that was why I was having issues. He prescribed it for patients with glaucoma. I took myself off it shortly after that , found this website at about the same time. I started JOH and antiviral that time as well. Thank you for your good info. This is a battle!
     
    • Like Like x 1
  14. Enigma

    Enigma New Member

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    Jun 18, 2014
    Hi there, I am new to the forum. Been diagnosed with Menieres since 2014 and all along it has been my left ear giving me problem. Tried a lot and for some unknown reason, I have a remission on and off over the years. At the same time in 2014, I was also diagnosed with Hashimoto Thyroidits.
    Just 2 weeks ago since returning from Spain (ingested high sodium diet and stress from minding 2 little ones,) I woke up right ear almost deaf. Totally plugged up with pain, pressure, hyperaccusi, and hearing loss. Put on 40mg prednisolone 4 days, and tapered down to 10mg for 5. When my script ended, the CH came back and now I am back on 20mg a day (10mg does not work for me) I know this is not a long term solution. Ent started me on acyclovir (Zovirax) 1000mg a day which I don’t think it is sufficient. After 2 weeks, does nothing much if U ask me. I also have a history of HSV1 with nasal coldsores. My question is will this CH ever see the end of the tunnel even for a bit :-( it’s so depressing and some days, I find it so hard to go on with my good ear now a bad one. The anxiety of waking up even more deaf if giving me sleep problems as well. I do have acyclovir on standby and plans to increase the dosage to 2400mg a day for a couple of weeks and see if that helps. Also sorting out my neck with the oestheopath and seeing a TCM (I reside in Singapore). Funnily every of my bad flare seem to happen around the same time in June-Aug... I will be extremely nasal when my CH is at worst.
    Thanks for Listening and all sharing will be very much appreciated. Bless
     
  15. Clare

    Clare Active Member

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    Welcome, Enigma. I hope you find helpful insights here and will continue to share yours. Beyond that, I hope you get through this bad spot quickly and can regain your confidence and ability to sleep.
     
  16. Megan Henry

    Megan Henry Member

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    Hi Steve,

    I have almost exactly the same symptoms as you. I have had this for 6 months. It started with tinnitus, some fullness and within the last 3 months I have been dizzy/off balance every day and the fullness has gotten worse. It's exhausting. The neurotologist I see diagnosed me with 'hydrops' whatever that means. I have no clue. I believe I have cochlear hydrops. I would suggest to see a neurotologist. Take Dr. Gacek's research with you if you choose to do the anti-viral approach. Personally, I wouldn't waste your time on PCPs anymore. I would also recommend you try Betahistine. I got mine from my neurotologist, filed at a compounding pharmacy. It worked wonders for my tinnitus, dizziness and fullness but unfortunately I had an allergic reaction. But bear in mind the Betahistine will only treat the symptoms, not the cause. Have you tried a diuretic? I also had bad reactions to this, but does not mean you will. I have low blood pressure as it is and passed out a few times. Doctors told me to keep taking. Lol! They have very little knowledge on this disease. Seek out a good naturopathic physician in your area as well.
     
  17. Steve1987

    Steve1987 New Member

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    Hey guys,

    It has been a little over nine months since my symptoms started. My ear pressure has decreased alot. The only thing I took up until 1 month ago was turmeric. I started with 1000 mg a day for a week in the beginning and then bump it up to 2000 mg a day. I would take 500 mg in the morning and 500 mg at night, then i took 1000mg in the morning and 1000 mg at night. This seemed to help with the ear pressure and relaxation only. Possibly a little effect on my tinnitus. I do not get dizzy any more. Currently, I would say my hearing is worse. Not sure where this is taking me, but im try my best to keep going. Thank you, guys and i hope and wish the best to everyone dealing with such symptoms that no doctor seems to understand.
     
  18. Megan Henry

    Megan Henry Member

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    Hi June,

    I believe I have cochlear hydrops and it seems to be getting worse every month. I have a month supply of Acyclovir sitting on my desk and I'm scared to take it due to the side effects. I know some people here with awful vertigo attacks probably think I'm being a baby. I want to avoid getting full blown attacks as I'm in the early stages. I have tinnitus and fullness in both ears (way worse on right.) A couple days ago I just developed a low level hum. Oddly it seems the constant rocking sensation is improving. I'm not sure if that's the JOH regimen or what. Anyways, I'm terrified Acyclovir will give me nasty side effects. Did you experience any side effects?
     
  19. EmilyP

    EmilyP Member

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    Hi June, I have been on acyclovir since Jnaury and expereinced no side effects. I take 800 mg a day. It has helped me tremendously. I also have been on JOH regime and B vitamins 5&6. The last 2 weeks I have almost been normal, altho I have mild tinnitis at times. For me this is huge. I have bllod work tis week and am anxious to see how it is. My MD told me that taking long term Acyclvoir would not be harmful. I drink lots and lots of water. I also watch what I eat and drink very closley. I hope this helps and best of luck to you. Emily
     
  20. Pa Cowboy

    Pa Cowboy New Member

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    "I believe I have cochlear hydrops and it seems to be getting worse every month. I have a month supply of Acyclovir sitting on my desk and I'm scared to take it due to the side effects."

    This is not meant to be ugly but you can tell you're not too bad if you're scared to take antivirals.
     

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