my first set back

Discussion in 'Your Living Room' started by RedBird11, Mar 31, 2014.

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  1. RedBird11

    RedBird11 New Member

    This is my first set back. I didn't realize how emotionally difficult it would be to deal with a set back. I always used to have fullness/ roaring and hearing loss every day with only a few days here and there when it was better. I started staking Lemon Bioflavonoids in September and felt a big improvement almost immediately and it stayed that way for 6 months. I could go days without even thinking about the fact that I have Cochlear Hydrops.

    Unfortunately, I think the fluid retention I have currently from being 9 months pregnant is too much for the Lemon Bios to keep up with because I suddenly have the extreme fullness and roaring, and low freq. hearing loss again. It is driving me crazy and I have been close to having panic attacks over it a few times. Sigh. My ear doctor did warn me that I could have trouble in the third trimester but I was starting to think I would be fine, I made it almost the whole way without a set back! I am really hoping that once my fluid retention goes away (hopefully within a couple weeks after birth) that the Lemon Bios will continue to help and I will go back to how I was feeling so much better for 6 months.

    I am holding onto hope to get me through this.
  2. CarolineJ.

    CarolineJ. New Member

    Hugs RedBird xx

    Sorry that it is so intense ... hoping that the next month goes by quickly. Good luck with the birth :)
  3. RedBird11

    RedBird11 New Member

    Thanks, Caroline. :)

    When I first got CH I went through months of panic attacks and being depressed and then I finally accepted it and learned to live with it. I feel like I am starting all over. I guess I had myself so convinced the Lemon Bios would get me through the pregnancy that I am just taking it hard now that its not. I am back in that "why me" phase.
  4. CarolineJ.

    CarolineJ. New Member

    That's ok RedBird ... we all have those moments :) That alone is a lot but then you add to that the pregnancy hormones and it's a tough mix of things.
  5. John of Ohio

    John of Ohio New Member

    Lemon bioflavonoids, alone, are not likely to bring continuing symptomatic suppression and relief. Yes, they do facilitate drainage of the excess fluids in the hydrops condition. But those fluids are generated --- at an increasing rate, in most cases --- by the inflammation resulting from an active, unsuppressed herpes virus infection of the inner ear.

    Antiherpetic drugs (prescription) such as acyclovir, or over the counter lysine, at proper doses and frequencies, can help suppress the virus.

    Information here:

    --John of Ohio
  6. RedBird11

    RedBird11 New Member

    Thanks, John. I appreciate your response and what you do here for everyone. I only knew of the Lemon Bios because of you, and this message board. So I am grateful. I was planning on adding more components of your regime once the baby is born. I was doing so good on just the LBs alone and didn't want to take too much while pregnant. I am due in 2 weeks so hopefully I can get started soon.
  7. nicmger

    nicmger New Member

    I am so very sorry for your setback. On a positive note, you have made it this far! Better than a lot of people probably thought - even you. I think the most important piece to keep in mind, front of mind, you were doing great. The lemon bios are working for you. So when the baby comes and your fluid retention goes down - just think of how amazing you will feel! You made it through 9 months!!!! You CAN make it thru the next few weeks ;D
  8. angrychicken

    angrychicken New Member

    Hi Redbird -

    Hang in there! You are almost to the point where you can start making medical decisions just for you. Since you have had Bell's palsy and CH, you are almost certainly a viral case - there is a much stronger documented link between the herpes virus and Bell's palsy than there is with vestibular disorders. Dr. Gasek believe's that the route to the vestibular nerve is through the sinuses and the facial nerve.
    Hopefully when the baby is born you will be able to get on AVs and you can certainly start the rest of the JOH.

    Kind Regards,

  9. recentlydizzy

    recentlydizzy New Member

    Not that it is anything like what you are experiencing but my wife had terrible sinus pressure before our little guy was born. She said the second best part of giving birth to him was her sinuses finally started draining.
  10. RedBird11

    RedBird11 New Member

    Thank you all. You guys really know how to help me calm down. I am so happy to have found this place. :)

    As far as the antivirals go, I was fairly confident that I am a viral case specifically because of the Bells Palsy. However I did try Acyclovir for a month over the summer and I didn't have any improvements. But it is my understanding that they need to be taken for longer than a month. I stopped as soon as I got my positive pregnancy test. I am definitely willing to give the AVs another try.
  11. KennedyLane

    KennedyLane New Member

    RedBird, so sorry about your increase in symptoms. Coincidentally, my husband came home tonight and told me about a patient he saw today that he diagnosed with Ramsay Hunt Syndrome. She had Bell's Palsy, vertigo, tinnitus and hearing loss along with blisters on her ear on the symptomatic side. He told me it's caused by Herpes Zoster (from chicken pox virus) and treated with antivirals.
  12. RedBird11

    RedBird11 New Member

    That's really interesting, KennedyLane. I had heard the name Ramsay Hunt Syndrome before but I didn't know that it involved all that stuff or that it could be viral.

    I guess I shouldn't be surprised that I am having this set back. At my OB appointment yesterday I found out I gained 7 pounds in one week! Most of it probably in fluid retention. Yikes.
  13. RedBird11

    RedBird11 New Member

    I am having a rough morning, so I thought I would just vent in my thread here. My ear is SO full and roaring today. Ugh. I mean it has been for the past 2 weeks straight but it is bad today and getting to me. I know I overdid it yesterday. We went on a major cleaning rampage last night and I was feeling good! Staying busy I didn't really notice the fullness and roaring. By the time we were done though I looked down and my feet were swelled up like balloons. Yeah. I overdid it. Once I winded down and got into bed I realized my ear was roaring louder than it had been before we started cleaning. I was hoping to have at least slight relief when I woke up this morning but nope. I almost want to call my ear specialist today to ask if there is anything I can do but I am SO close to being done with this pregnancy. I will be 40 weeks on Monday. Most days I am convinced I will be better after the birth and fluid retention goes down, but there are times where I am depressed and doubtful.

    Anyway, I love having a place to come to where I can just type out my thoughts to vent and people understand. Thank you.
  14. Vicki615

    Vicki615 New Member

    Sorry to hear about your setback, I am sure it is very upsetting, but you did great for most of it which is awesome and keep thinking soon you will have a beautiful baby and less symptoms!

    .. would increasing the lemon bioflavonoids be of any help?
  15. angrychicken

    angrychicken New Member

    Hang in there RedBird - you are almost there. You are so brave, forgoing your own treatment for the sake of your unborn child! Any child would be lucky to have you for their mother. Soon your body will return to normal and you will be able to try the rest of the JOH and anti-virals without worrying about your child's health.

    Kind Regards,

  16. RedBird11

    RedBird11 New Member

    Thank you, Vicki. I am definitely planning on increasing the lemon bios but I am going to do that right after the baby is born. I currently take 2 a day and I will add a 3rd to hopefully get myself back on track.

    Colin, you made me cry. But in a good way! Thank you so much for your kind words. Its exactly what I need on a day like today.
  17. vasu

    vasu New Member

    My sentiments exactly as Colin's. Hang in there. The last three days have been miserable for me as well. A HUGE volume of tinnitus that kept changing frequency - up and down in a cycle. Scared that it may be SSNHL, I made an emergency appointment with a local neuroto yesterday evening, and she calmed me down - she said the tinnitus is just a reflection of hearing loss, which is temporary with CH. As hearing comes back, the tinnitus will away. The more you focus on tinnitus the worse it gets and then you focus on it more - vicious cycle. She put me on a steroid burst which she says will bring back the hearing in a few days. She also discussed steroid shots. I know you were wondering about steroid shots before as they may be safer during pregnancy (?). Good luck with everything and praying you feel better soon!
  18. RedBird11

    RedBird11 New Member

    Thanks for all of the encouragement everyone. I broke down this morning and called my ear specialist. I left a message with the nurse for the doctor asking if there is anything I can do, or if I would be better off waiting it out. My ear today is ringing so loud I can barely think straight. (I joked with my husband this morning that it was the baby timer going off because its my due date lol). Anyway, I guess I am kind of hoping to get some encouragement from the doctor... maybe he can convince me he thinks it will get better? I don't know. He had told me back in August to call if it got worse during the third trimester so I at least feel like I have a reason to call.
  19. RedBird11

    RedBird11 New Member

    As usual my doctor was no help. He just wanted me to come in for another hearing test but I told him I didn't want to do that until the baby is born (he originally told me to wait to do a hearing test after the baby is here). But I am happy to say that I woke up Tuesday feeling MUCH better anyway. My hearing is back, the ringing is BARELY noticeable (only in a completely quiet room) and the fullness is basically gone. I am trying my best to fully enjoy this welcome period of relief and try not to worry about when will it hit again. Hopefully it will stay away and I can get started on more of the JOH regimen and I can have an extended period of relief like I had. :) I hope I didn't jinx myself.
  20. vasu

    vasu New Member

    Great to hear about your respite. Hope it stays that way. I am now on day 7 of prednisone and yesterday was my best evening so far - low tinnitus and hearing was better. This morning is a bit worse. For me, mornings always start out worse and then it eases up towards evening. But the crazy tinnitus has not come back in the last 3 days. Hoping it will stay low as I start to wean off the prednisone soon.

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