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34 yr old looking for answers

Discussion in 'Your Living Room' started by Looking for answers, May 6, 2019.

  1. Looking for answers

    Looking for answers New Member

    May 6, 2019
    Hi all, so I'm new here, found this site and thought I could find some answers. Newly diagnosed with suspected meineres disease after experiacing dizziness and unsteadiness that turned into 3 days of full on vertigo. Went to the ER( which pains me to do as I'm a nurse myself) CT was normal referred to ENT that made diagnoses. Since then vertigo went away( thank God) now dealing with right ear pressure, buzzing in my ear and loss of hearing on effected side, headaches unsteadiness and constantly tired. Currently on high dose of tapering steroids which havent helped as of yet, havent had a drop of caffeine in almost 3 weeks, reduced my salt intake and havent drank alcohol in that time either. I'm completely frustrated with these symptoms that seem to be dragging on and soon to be married with a bachelorette party we re supposed to be flying to Vegas soon. Has anyone flown with this disease? Any tips? And how long do these symptoms last for you? I'm a working nurse and mother of 3 and planning a wedding, I'm completely at a loss of how to get to feeling normal again.Any help is much appreciated
  2. AmyLeigh

    AmyLeigh Member

    Mar 26, 2019
    Hi @Looking for answers - I'm Amy and I'm in the same boat. I'm 35 with two little kids and this frustrating disease. I'm not an expert (no one here claims to be!) but I can tell you that you will figure this out and find something that helps you.

    Quick backstory... I was diagnosed 5 years ago, but only started having bad/consistent vertigo two years ago. My Meniere's comes and goes. Sometimes it's in "remission" for a couple of months, sometimes just a few weeks - I never know. I do know that when I'm good about my diet, seeing the chiropractor, getting enough sleep, avoiding stressors, exercising frequently, and taking my supplements, I get vertigo attacks much less often. The ringing in my ear and the hearing loss is pretty much constant though.

    One treatment doesn't seem to work for everybody (the bad news), but something WILL work for you (the good news) - you just need to find what that is. There are two online books for download at this website: Meniere's Disease Help. Support for Meniere's sufferers - they have helped me sort out my 'causes' and my 'triggers.' I have a much better idea of what I'm dealing with now. I suggest starting there.

    Also, this forum is a great resource. Search for things like JOH regimen (a supplement regimen that has helped many people) - antivirals - upper cervical chiropractor - sac decompression surgery - etc. The database is a good place to start. So many people have shared their stories about what's helped them and something will help you too. Also, post any specific questions you have along the way - people here are friendly and happy to help!

    I know it's scary in the beginning, but you will be ok. You will learn to live a full, happy life like so many other people on this forum, it just might take some time to get your footing. All of these approaches take a while to start to work, so have patience with the process. And in the meantime keep your stress, sodium, alcohol, and caffeine consumption low. You will be ok.
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  3. June-

    June- Well-Known Member

    May 12, 2014
    Try anti virals ie acyclovir, valtrex or famvir. You need a hefty dose for minimum of a month. Works for many certainly not all. If it is inner ear i think you cam probably fly ok. If it is middle ear try a spray decongestant. Of course the ENT will need to do an mri and other tests to rule out other possiblecauses. Stay positive. Good luck.
  4. Kevinb003

    Kevinb003 Member

    May 15, 2014
    Dallas area
    I actually enjoy flying. For whatever reason, I find the pressurization of the cabin comforting to my symptoms. in fact, I hear music better with headphones on flights than anywhere else and get a little sad when flights end. Also +1 to what June said re: antivirals. Best of luck and hope you are feeling better soon.
  5. Dario

    Dario Member

    Apr 30, 2019
    Hi, sorry to hear you are not feeling great. I am also new to this and was officially diagnosed about 3 weeks ago. I've had 3 major attacks over the last 18 months with each happening about 6 months apart. After each attack it generally takes me about 8-10 weeks to get back on track fully but I am still fully functional with some unsteadiness. Since being diagnosed I have been put on Betahistine x 1 (24mg) per day. This seems to help but it's hard to say as I was completely symptom free for about 6 months prior to my last attack on 23 Feb. I have cut down my salt, caffeine and smoking but once again it is pretty hard to say as during my 6 months of being symptom free I drink and ate everything - I guess I didn't know I had MD at the time. I think it really is different for everybody. It's not like a get an attack as soon as I have alcohol or eat a salty meal. Do have a good read of the many stories on here as they really are helpful. I have just received the vitamin B5 & B6 supplements so let's see how that goes.
  6. Clare

    Clare Active Member

    Mar 31, 2018
    I've never had a problem with the actual flying, but found the patterns in the airport carpeting to be stimulating nausea and dizziness. When I had to travel during a period when symptoms were in a flare-up phase, I arranged for wheelchair service to get from check-in to gate, and that helped immensely. Delta had especially good service.

    The stress and anxiety as a byproduct of meniere's may take from you as much or more than the actual vertigo attacks. Be deliberate to not let the anxiety destroy your life. Try bringing some moderate "vice" -- caffeine, chocolate, alcohol, staying up a little later once in a while, have the occasional slice of bacon or sausage or pizza, etc. -- back into your life one at a time to find which seem to trigger symptoms, so that you are not unnecessarily depriving yourself. Don't let the fear of this disease isolate you from living your life. Your job with this diagnosis is to savor the moments with your family, friends and colleagues as best you can and live life as fully as health permits.

    Steroids did nothing for me, but they reportedly can help some people reduce hearing loss after an attack. Sodium is a clear trigger for me (but not for everyone), so I compensated by 1) learning to grill food to get extra flavor without salt; 2) baking my own bread; 3) canning tomatoes that I grew in my garden; 4) becoming a much better cook with interesting flavorings. My point is not that all those activities work for everyone, but they were what gave me pleasure in counteracting the effects of meniere's while living around it. Over the 19 years I've dealt with it, much has been lost but also some good has been gained. Of course the unpredictable vertigo attacks were wretched; the bigger challenge was to limit the wretchedness to the times of disability and not let it seep into every minute of every day.
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  7. EmilyP

    EmilyP Member

    Jan 6, 2019

    I’ve had success with antiviral, acyclovir 800 mg x 3.
    I do JOH regime & B 5 & 6
    B6 100mg x1
    B5 125 mg x1
    I have had ear fullness, tinnitus & slight imbalance since 8-18. Diagnosed MM in October. Seeing good results since April. It’s frustrating to say the least... hang in there..
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  8. sjw111

    sjw111 Member

    Nov 3, 2016
    Get a full work up with a doc that specializes in MM. This site can help you find one close to you home (sometimes have to travel). Flying no problems for me. Often fly to a MM doc. Remember you are in charge of your own care. Read and study. Start with Dr Hains materials you will find when you Google. He has a treatment flow chart that is very good. Adopt a plan and work the plan. There are ways to stop the attacks if you get to the end of tolerance. They work. Because you cant have a spin attack if the vestibular misinformation to the brain is destroyed. Period. They gave my life back. No need to rock along for years with this. Some people respond to more holistic therapy. They do no harm so ....why not....but dont let that slow you down from traditional care. Life goes on and is rich and full. Keep falling forward. Peace. Sid
  9. y42

    y42 New Member

    Apr 23, 2019
    Hi there,

    I actually just cancelled my international flight because I am scared it will hurt my ears. I've had one bad experience where the pressure difference was not handled well, which gave me a few days of pain and hightened tinnitus. I fly on a regular basis and this happened only once though, but I cancelled this flight because I'm in my longest symptom-period ever. I would have flown if the sympoms were less though.

    My recommendation is not to let your MD influence all the fun things in your life so just take that flight and have fun if your body can handle it. When I fly I make sure to bring my noise cancelling headset (bose cq35) which really helps to block out all the noise that is irritating to me. I really recommend it!
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  10. teesdale

    teesdale Member

    Oct 24, 2014
    Greetings LFA, I have been dealing with this beast since I was 30 and I'm 60 now. I'm going on 2 years of symptom free living with a minor setback in October. In my case Anti-virals seem to be working and the only setbacks I have experienced I can usually tie back to a lack of discipline on taking the 2000mg daily of valacylovir. Like EmilyP above, I am also on JOH and the B5/B6 regimen. I'm not sure of the efficacy of all of them, but I'm too frightened to stop taking any of them.

    I cannot agree more with SJW111 above. You are in charge. The number of symptom-free days you get throughout your life will depend primarily on your diligence in attacking this disease. Document everything. Tell your doctors what you would like to do. If they don't listen then get new doctors.

    This site has been a god-send over the years.

    I wish you all the best!

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