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New Here and Pregnant - Looking for Advice

Discussion in 'Your Living Room' started by LadyG07, May 1, 2020.

  1. LadyG07

    LadyG07 New Member

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    May 1, 2020
    Hello All,

    I am not new to reading this forum but I am new to posting. I will provide you a brief history and then I'd love any input you may have. I am currently 34 (almost 35). I had my first vertigo attack in December of 2014 and was diagnosed with MM a few months after (age 29). I should mention the first few years after my diagnosis my symptoms were very minimal. I had maybe 1 or 2 vertigo attacks a year, hearing loss that was not very noticeable (low tones only) and no tinnitus. I naively thought this was how my life would be living with MM. I was living in Florida at the time and had been seen at Tampa bay balance center. I was prescribed low dose antivirals but stopped them as I was not symptomatic and carried on with life normally. I owned my own business, was very active, ran marathons, lifted weights etc... Fast forward to 2018, I had my son in June. At about 34 weeks pregnant I had an attack (first I'd had in about a year) - I slept it off and had my baby shower the next day. All was well. I had some fluctuating ear fullness toward the end of the pregnancy but nothing terrible. About 3 months post partum I woke up with a full ear and ROARING pulsatile tinnitus. We moved to California and I pursued treatment with a local ENT who did a hearing test which showed moderate hearing loss (I question all my hearing tests when my ear is very full as my hearing tends to improve when my ear isn't full). She suggested a steroid injection and put me on a diuretic which I tried because I was so dizzy at the time - positional dizziness specifically. I was not having vertigo. The injection made me feel worse. I then decided to make the drive to House Ear Clinic in Los Angeles a few weeks later where I saw Dr. Dereberry. She discontinued the diuretic and started me on betahistine and did another steroid injection. Again nothing changed and again I was not having vertigo at all - just dizziness. She referred me to her colleague for possibility of vestibular migraines which were subsequently ruled out. It was however concluded that I had a neck issue from his examination. I then pursued physical therapy and it was discovered all my neck lordosis (cervical curve) was gone in my neck. I had a head injury as a child I never considered could be related to my MM. Around this time (spring of 2019) I pursued the Gacek Protocol of Valtrex from another physician. I also added the John of Ohio Protocol. No Change. I contacted Gacek personally and he told me if I wasn't having relief within the time I had taken it, it probably wasn't the solution. I was up to 3grams a day - I did get blood work to ensure safety. I then stopped the antiviral. I then got under care for TMJ and got into a neuromuscular orthotic and began to pursue upper cervical care for my neck. I finally started having windows of relief. There definitely seemed to be a correlation between my jaw, neck and MM symptoms. I have had small little blips of vertigo since but none I would classify as attacks, just little blips of a few seconds which I consider progress. I also had allergy testing - I had a LOT of environmental allergies. However we moved to Atlanta in July 2018 and I will need to get retested for Allergies here. After looking for awhile and exploring several chiropractors to find one who was a good fit and had experience with MM and I found one in December 2019. I am currently pregnant with baby 2 and overall this pregnancy has been great and I have felt really good. My ear pressure has been minimal and hearing has been improved- I have had minimal dizziness and the dizziness I have had has been positional only. I woke up a few weeks ago as I had entered the third trimester with a full ear again and pulsatile tinnitus with my hearing down. Because of Covid my chiropractic care was stopped for a month or so. I got back into care and am not holding any adjustments - I suspect due to pregnancy (relaxin hormone). I am frustrated I was doing so well and now seemed to be back sliding. My ear has been plugged now for 3 weeks no matter what I do. I am in the chiropractor's office 2 to 3 times a week and can't hold an adjustment for more than a day. My diet is good, I take good care of myself but would like some relief. I am hoping this recent flare is simply due to pregnancy as I feel like I've finally made some progress. While I have considered destructive surgery , I don't know if I am a candidate as I can count on 2 hands how many true vertigo attacks I have had in the 6 years I have had this. My biggest complaints are ear fullness and dizziness.

    To summarize I have tried the following treatments with zero success:

    Diuretics
    Low salt diet
    Cutting out Dairy
    Cutting out Gluten
    Gacek Antiviral protocol
    Betahistine (serc)
    Vestibular Migraine Diet
    Steroid intratympanic injection
    John of Ohio

    I have found success with:

    TMJ treatment coupled with chiropractic upper cervical care - however that seems to be stalemated due to pregnancy. I plan to pursue allergy shots once I deliver my baby.

    Any women on here with pregnancy experiences? Thoughts about my history or what to try next?
     
  2. Autumninthefall

    Autumninthefall Active Member

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    Aug 10, 2019
    Welcome LadyGO7
    I’m sorry you’re dealing with this, especially while pregnant. I believe there is some evidence correlating hormone changes with vertigo attacks. You might want to check in the archive to see if it’s mentioned.
    I’m sure you’ve already noticed that most of the information you find online says the typical age of onset is 40+. There are some of us who had a much earlier age at onset, though I don’t know how many, or if any experienced pregnancy after diagnosis.
    Please know the regulars on this forum come here because they are experiencing the worst that Ménière’s has to offer, or they’ve made it through to the other side, and want to encourage everyone else still struggling. Plenty of people are what I call, “one and done.” They only need to post once, symptoms mysteriously disappear and life goes on. Don’t let the posts on here worry you. I hope you’re merely having another blip.
    Since seasonal allergies are actually year round in Georgia, I’d get allergy testing as soon as possible, though I realize you’re in the thick of the outbreak in Atlanta. Going back to what you said regarding destructive treatments, those are truly a last resort. You don’t even want to entertain the idea unless you have no other option. I know doctors usually don’t even consider labyrinthectomy unless you’ve got severe hearing loss in the ear. Also, the destructive treatments all come at a price. You’re vertigo would probably go away(no promises) but you’d definitely have impaired balance. Some on this forum have done really well post destructive surgery, true success stories, but some have significant challenges.
    I am in no way making light of the symptoms you describe, but I promise you that none of us who have had destructive procedures would be considering them yet, based on what you describe. I think there’s still a true possibility that this is a temporary setback for you. Pregnancy is stressful, pandemic is stressful and stress is a recipe for Ménière’s/vertigo attacks! Sending hugs your way, and please let us know if you find something that helps. Hopefully, someone else can offer you pregnancy specific information.
     
  3. Autumninthefall

    Autumninthefall Active Member

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    PS-I’m certain others can offer better advice, but in the meantime, do you meditate? Stress is a huge trigger for me, so I downloaded an audiobook on guided meditation practice. Worked wonders for me. (I’m only unilaterally deaf right now)
     
  4. LadyG07

    LadyG07 New Member

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    May 1, 2020
    Thank you. I sincerely appreciate your kind words. I will definitely keep at it- I have gotten relief as I have gotten back into upper cervical treatment and plan to get allergy tested as soon as possible. We’re you also diagnosed relatively young?

     
  5. beks

    beks New Member

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    Hi LadyG07! I'm sorry to hear you are having issues right now. I do not have advice on how to resolve or improve, but I can share my pregnancy experiences. I was initially diagnosed with hydrops 21 years ago. A few years later, I gave birth to my first child. Five weeks later, I had my first true Meniere's episode with severe vertigo. Because I was breastfeeding, I did not want to take any oral medication. I did do steroid injections in my ear. My hearing bumped back up, and the vertigo subsided. I was stable until I gave birth to my second child two years later. Shortly after she was born, I had my first bilateral Meniere's episode and went on to do steroid injections again. My otoneurologist at the time speculated that the additional fluid needed in the body during pregnancy and then shed postpartum seemed to be a triggering element for me. I was stable again for a few years after our daughter was born. We did not have any other children. I still deal with bilateral disease and progressive hearing loss. I had a gent shot about five years ago to stop the severe vertigo. I hope things improve for you very soon.
     
  6. PleaseNoDizzy

    PleaseNoDizzy Active Member

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    May 12, 2014
    Hang in there. Menieres is so hard. Pregnancy is so hard. And now we have Covid and the associated stress. This is not an easy time!

    I just wanted to chime in and say count me in as another whose menieres got significantly worse post pregnancy. My menieres set in at 37 and I got pregnant with our 3rd child about 4 months later. I was pretty sick with Menieres for the first few months but after I got pregnant, my ears and vertigo all really settled down. It came back moderately bad, after I finished breastfeeding and took quite a while to settle back down again. I agree with the others who mention that the post pregnancy hormones and fluid levels and who knows what else can really throw your ears for a loop. But hang in there because things will find balance again!
     
  7. LadyG07

    LadyG07 New Member

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    May 1, 2020
    Thanks for your response. Should I be scared I’m going to get worse after this baby? I’m already a very anxious person. I’m very afraid. I got bad 3 months after my son but it seemed to be correlated w my neck and how I was nursing. Another thing that is puzzling about my case is that steroid injections made me sicker. If this is an inflammatory response why would I not respond?


     
  8. LadyG07

    LadyG07 New Member

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    May 1, 2020
    thank you so much!

    How long after the birth of your child did you get really bad? I am so scared for post Partum. I don’t know what to do anymore. I have tried all traditional therapies and I don’t respond. I only seem to respond to alternative treatments. I should mention vertigo isn’t my main issue (luckily). My biggest symptoms are dizziness and ear fullness. Full attacks aren’t really happening right now which I’m grateful for.


     
  9. PleaseNoDizzy

    PleaseNoDizzy Active Member

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    Try to relax (I KNOW, easier said than done) and remember we are all different and this disease affects everyone so differently. FWIW, I was still pretty much ok for the duration I was breastfeeding. When he started to wear around 12-15 months, things started creeping back in for my ear. It was mostly fullness and hearing loss for me at that time. It was quite a few years before I was contending with vertigo again.
     
  10. PleaseNoDizzy

    PleaseNoDizzy Active Member

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    May 12, 2014
    *wean, not wear o_O
     
  11. Gardengal

    Gardengal Member

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    I gave birth this year, in March. I had the worst 6 months leading up to the birth- almost my whole pregnancy. Full on vertigo, constant dizziness, etc, etc. I hadn’t been that bad since before AVs, 5 years ago.
    I was super discouraged and depressed, how would I take care of a newborn like this?
    I am happy to say, I have felt SO much better after delivery. I do breastfeed. Hang in there, perhaps things will get better! Congrats on a new baby, there is nothing like it!
     
  12. LadyG07

    LadyG07 New Member

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    May 1, 2020
    Is there anyway we could chat sometime? Im just feeling really nervous about everything. I have read some of your other posts and I know you've really overcome a lot with MD.
     
  13. PleaseNoDizzy

    PleaseNoDizzy Active Member

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    Absolutely! Message me on here anytime.
     
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  14. Sara

    Sara New Member

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    Nov 15, 2019
    Hi Lady G07

    Thank you for posting. I was reading your story and can actually draw lots of parallels with mine. I was diagnosed with Ménière’s 5 years ago at 34 years old and would only have an attack on an annual basis around the same time each year- September/October time.
    I tried John of Ohio’s regimen but it didn’t seem to help me however I was able to manage a lot of my Ménière’s symptoms through my diet. I avoided caffeine, had a low salt diet and ate healthily. When I did have an attack they were bad and the vertigo would often last for 6 hours at a time. I was often given a pre-warning a few weeks ahead as my hearing would be down and my affected ear (left only) would feel full. This hearing impairment and fullness would tend to last for approximately a month after an attack and despite the attacks being completely debilitating I felt I could cope with them as they were so infrequent.
    In September 2017 I had my typical annual vertigo episode and a month later I discovered I was pregnant. I felt pretty good during my pregnancy. I had mild fullness occasionally but no attacks and I was even hoping that the symptoms may have spontaneously disappeared for good.
    That was until 3 months after giving birth when I experienced an attack like no other. It was also whilst I was out alone with my baby. I ignored the warning signs of the fullness and hearing loss which had developed a week prior and I was left with a severe vertigo attack- 12 hours of vertigo and continuous vomiting. The dizziness then became a frequent almost daily fixture, along with the fullness. I would experience a vertigo attack at least once a month. At this point I was still breastfeeding so had decided against taking any medicine. However, at 7 months post partum I could no longer bear it and I had done some reading about the beneficial effects of antivirals and decided to give them a try. I stopped breastfeeding and took the anvirals but they didn’t help. I also trialled the contraceptive pill as I felt good during my pregnancy and so thought that stimulating the pregnancy hormones may help relieve the symptoms but experienced no benefit. In November 2019 I suffered with a major attack and really felt like ending my life (I know that sounds dramatic but I could not see a way out!) I then discovered this forum which has helped me immensely. I started taking B vitamins and also Magnesium sulphate (As recommended by quite a few people on this site) and a few weeks after taking these I also went to visit a chiropractor with experience of Ménière’s. The next day after my visit I felt a lot better. The fullness had disappeared and the hearing was back. I didn’t know whether to attribute it to the tablets or Chiropractor but I felt good and I continued with both. I stopped going to the chiropractor in Feb as I was travelling a bit for work. A month ago my symptoms reappeared. I found out I am 6 weeks pregnant a few days ago and am wondering whether my symptoms are linked to this? I am continuing to take the B vitamins and Magnesium but I am hoping these are safe in pregnancy- not sure if anyone knows.
    Anyway, this is my story and I am feeling a bit anxious about the next 35 weeks of pregnancy but I really hope I can cope with all of this.
    Wishing you lots of luck too.

     
  15. ErinPumm16

    ErinPumm16 New Member

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    Hi Beks - I had 2 dexamethasone injections 6 years ago and was vertigo free until 2 weeks ago (still had tinnitus and hearing loss but no dizzy spells). I went to my ENT and had another dexamethasone injection 3 days ago but still feel very unbalanced. Do you think the gentamicin injection works better?
     
  16. Autumninthefall

    Autumninthefall Active Member

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    Hi ladies,
    Just stopping by to remind you that you are AMAZING givers of life, and it comes with a hefty, unseen price tag.You pay for this miracle with crazy hormone fluctuations and body changes many say, “no thanks!” to because they know they can’t/don’t want to handle it.
    Is it any wonder you might experience MD flairs during this time? Please remind yourself, every time you look in the mirror if necessary, this ain’t easy.
    Sure, maybe you’ve been through it before, but that also means you’re now juggling MD, pregnancy, possibly working, needs of existing child, and any other family members in the picture. You can juggle so much, but the unfortunate truth is that the one ball that ALWAYS falls is MD.
    Now, you’re body and mind have to do it all over again, but you’re juggling even more. Go easy on them, and consequently yourselves.
    Kindly Meant,
    Autumn
     

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