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Cochlear Hydrops. Help!

Discussion in 'Your Living Room' started by Megan Henry, Oct 5, 2019.

  1. Megan Henry

    Megan Henry Member

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    Hi everyone! My name is Megan. I'm 32 years old and I believe I have cochlear hydrops. I'm seriously struggling with this. I also have a lot of hope I will figure this out! My neurotologist just referred to it as 'hydrops.' I do not get vertigo attacks. I just have constant tinnitus, fluctuating fullness in both ears (mostly right.) I have some hearing loss in my right ear, but I know that if my ear is able to drain properly, my hearing will be back to normal. I feel like I'm unsteady all the time (like I'm rocking or being slightly shoved.) I'm so fortunate I don't get vertigo attacks and I truly sympathize with those of you who do. I'm so sorry you have to go through that. I've seen countless doctors, upper cervical chiropractor, regular chiropractor, naturopathic dr., tried the JOH for several months, tried flonase, diuretics. The only thing that gave me relief was Betahistine. Unfortunately I had an allergic reaction with labored breathing with chest pain. I'm so beyond frustrated and depressed. I religiously eat healthy, exercise 5-7 times per week. I just saw a tmj specialist thinking that may be it because I have bad tension in my jaw, I think I grind and don't know it. I had oral surgery back in 2004 to correct an underbite. I had a car accident back in 2013. Could that be it? I have eczema on my outer ears and have had fungal and viral infections in my outer ears numerous times. My premonition tells me it moved to my inner ear. I just got 400 mg of acyclovir filled today. Pretty hesitant to take it because of my troubles with medication. Can anyone help me out? Let me know what has worked for you. Think I should take the anti virals?? I would love any advice or input.
     
  2. wendy

    wendy Member

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    Megan. When did your symptoms start?
     
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  3. Megan Henry

    Megan Henry Member

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    Hi Wendy. They started in April 2019. It started with some fullness and the tinnitus followed. It started in my right ear and within weeks progressed to my left. My right ear is worse.
     
  4. Megan Henry

    Megan Henry Member

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    I also was getting very slight bloody noses. I have wondered about allergies as well. Never had any allergies before, but from what I understand they can develop. I also wonder if this explains why I had such an adverse reaction to betahistine.
     
  5. wendy

    wendy Member

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    I have read that in a very small segment of patients on betahistine, asthma is exacerbated and chest tightness can occur. Guess you were one of the lucky ones I think since you are in the early stages of this condition, it would be worthwhile to try the antivirals. As you have read, many get worse before they get better on AVs. You said you tried JOH. I find the lemon bioflavinoids really help my ear fullness. Did you try those? Also, have you had allergy testing? I am confused about the fullness being in both ears. Hopefully others will comment and provide you input.
     
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  6. Megan Henry

    Megan Henry Member

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    Have you tried the AV Wendy? I'm concerned it will make my pre-existing depression worse and sorry if this is tmi, but I tend to get constipated on any medication. I just have bad side effects with everything I take. I would love for something to work. That is what I pray for every day.
     
  7. wendy

    wendy Member

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    It looks like diarrhea may be a side effect. I do not see constipation listed. I take JOH and Monolaurin. I am thinking of asking my doctor for a script for AVs. I am unsure about depression, but I thought another member might have mentioned that. Did you search any of the older posts for for information? A lot of people get better and don't come back here.
     
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  8. Megan Henry

    Megan Henry Member

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    I just searched the pats forums for antivirals and depression. It looks like 1 person mentions it. I hope this works. At any rate, I'm going to try it and pray it works.
     
  9. wendy

    wendy Member

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    I saw where one member tapered back the antivirals after being on them for awhile to a lower dose. Good luck and keep us informed.
     
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  10. Megan Henry

    Megan Henry Member

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    I was prescribed 400 mg of acyclovir. I was planning on taking just one a day. Would that even be effective? I see most people take much more than that.
     
  11. wendy

    wendy Member

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    Can anyone more knowledgeable about AVs help Megan with her questions?
     
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  12. Pa Cowboy

    Pa Cowboy New Member

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    Doesn't mean I'm knowledgeable but I'll chime in. 400 mg of acyclovir seems like a small dose to start out on. Some folks like me started with 1000 mg of Valtrex 3 times a day then after about 3 weeks move to 2 a day. Gauge your results at that point.
     
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  13. Bonlyn

    Bonlyn Member

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    Having the pressure is both ears seems like it could be Migraine Associated Vertigo (MAV)..or Vestibular migraine ( as you said you do not have vertigo) Have you considered that? I unfortunately have both..mav and menieres.

    Betahistine has also helped me, sorry you can not take. I do the JOH, but never was able to get correct meds for anti viral, so can not help you there.

    Sorry you have to go through all of this.
     
    Last edited: Oct 6, 2019
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  14. Megan Henry

    Megan Henry Member

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    Also to note... When I try to pop my ears it sounds like there is fluid in there and like they want to pop, but they don't and haven't for 6 months.
     
  15. Megan Henry

    Megan Henry Member

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  16. Megan Henry

    Megan Henry Member

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    Did you have any side effects and did the AV help you?
     
  17. Megan Henry

    Megan Henry Member

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  18. Megan Henry

    Megan Henry Member

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    No, I have not considered MAV. My doctor's never brought that up. Not that surprising. I'm so fed up with doctors. Its crazy how little they know. My vertigo is a constant rocking sensation, sometimes feels like the floor is moving a little and sometimes it feels like I'm being shoved a little. I watch what I eat so well. The rare times I deviate I feel so horrible the next day and my balance and mood is pretty bad.
     
  19. Mac

    Mac Active Member

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    If you are going the anti viral route you need to go all in on dosage.

    3 per day of Valtrex or famvir for several months. It may help. It might not.

    My theory is the younger you are the more likely a virus is the culprit. You are young for MM. I was 28. Most are in 40s/50s when they start.

    You have nothing to lose by trying anti virals. If you are worried about the side effects then your symptoms havent gotten that bad yet : )

    Reach out on PM if you have any questions...get well soon!
     
  20. Bonlyn

    Bonlyn Member

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    Megan, you need to get a copy of the Heal Your Headache book by David Buchholz off of Amazon. You do not need a headache to have vestibular migraine. You can search this forum for hits about MAV... A post a member named Vicky made was very helpful and pointed me to the Buchholz book.

    Also there is a website called the Dizzycook. If you go to her homepage it is her recipes, but if you look at her menu she has some good links and she tells her story.

    Also there is a special migraine diet, you think you are eating healthy and then you find out onions, all citrus fruit, bananas ( just to name a few) can all be terrible triggers for a vestibular migraine. Dizzycook has a list of the foods you should and should not eat.

    I follow the diet strictly plus I do not eat any gluten or sugar, but I am also triggered by barometric pressure and humidity...which stinks...cause obviously can not control.

    Unfortunately I have been to two neurologists with limited experiece with vestibular migraines...the best specialists seem to be in Boston, Baltimore, Minneapolis and California.

    This disorder not only makes you feel terrible but there is no clear cut answer why we have it or what sets it off. Everyone seems to have a different story. So while you are dizzy and feeling poorly you have to read through all the many posts and decide what the best regime is to start first. Which just makes the head Dizzier. But for now the forum seems to have more answers than some of the doctors out there.

    So read some on MAV and then decide...and please let me know what you think. I hope you do not ever get vertigo, but even if you do not, I know the ear pressure and disequilibrium feeling can be debilitating.

    Best to you. Bonnie
     

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