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Relapse help

Discussion in 'Your Living Room' started by [email protected], Nov 29, 2018.

  1. I haven’t been here in a while as I’ve been doing really well for nearly a year. A little over a week ago, the weather turned bad and I started having some symptoms that have progressively gotten worse - lightheaded, more hearing loss than normal, horrendous tinnitus, brain fog, noise sensitivity, ear pressure etc. I currently take Famvir and JOH. Go to an upper cervicle chiropractor, wear a mouthpiece for TMJ and take a diuretic. I’m so frustrated I want to cry. Does anyone have any suggestions that maybe I haven’t tried? Thanks!
  2. Mac

    Mac Member

    Oct 23, 2017
    Are you taking 3 Famvir per day? If not - up the dose for a few months. Nothing to lose. No side effects.
  3. bob_

    bob_ New Member

    Oct 21, 2018
    You could try diet modification; I’ve read others on here recommending the AIP diet.
  4. I currently take 2 Famvir a day so I’ll try upping it. What is the AIP diet?
  5. teesdale

    teesdale Member

    Oct 24, 2014
    The AIP diet is a stricter version of the Paleo diet (based on meat, fish, vegetables, nuts and seeds). I have to admit that I did the Whole30 diet (similar to Paleo) and at the end of 30 days, and for months to follow, I felt fantastic. Alas, I fell back into my old eating ways and now I don't feel so good. I believe it is worth a shot.

    Like you, I was symptom-free for 15 months (Jul, 2017 - Oct, 2018) from anti-virals. I started to feel the symptoms you describe for about a week and then bam! A terrible vertigo attack. That was on 13 Oct and I have had very few "good" days since then. In my case, I believe I had absentmindedly dropped below my 2g daily maintenance dose and that may have allowed the virus to regain a foothold. I'm back on 3g daily for the past month and this week was a non-dizzy/non-lightheaded week although the tinnutis is still extremely loud so who knows if it is working.

    I also started on two droppers daily of CBD Hemp Extract oil on Monday so that may be accounting for the non-dizzy week.

    I feel your frustration. I have tried everything (Chiro, Physical Therapy, lo-so, Diuretics, mouthpiece, JOH, A/V's) except surgery. And when I last saw my Oto at Penn Medicine, a surgeon, he told me surgery would probably not help me. He thinks the ear is no longer causing the episodes. He believes after 28 years with the beast my brain can no longer recognize balance. He recommended a PT for vestibular therapy.

    Unfortunately I don't have any answers for you but I just wanted to re-assure you that you are not alone.
  6. Pupper

    Pupper Active Member

    Oct 15, 2016
    Sorry for your recent troubles Tracy. Don't know what to recommend. I mostly just direct/remind people of Dizziness-and-Balance.com. The most comprehensive site for trying to understand our problem.

    Meniere's Disease
  7. Peter rabbit

    Peter rabbit Member

    Nov 23, 2018
    Tracey I'm so sorry to hear of the bad flare up. I really wish I could give some sort of advice that would certainly work. All I can tell you is clean up your diet as far as sodium intake goes. Stay under 2000 mg daily. It is not certain but I can tell it does help some. I do wish it was 100 percent certainly to help. I went 8 months in remission after my first vertigo attack I ever had then it came back with vengeance. I mean I got really bad. I ended up getting a nerve section done on my left ear. Now during that time I was in remission I was not watching my diet as close. I was just taking my diuretic 50mg htz. Just don't lose hope. Keep in mind that this will come to pass. I understand it's hard to think that way. I am learning that I have to try my best to be positive as much as is possible in me to get past this. I am not this disease. I am better than this disease. You can not get in conquer you. You conquer the disease. Find what works for you. This disease seems to be terribly different in all of us menierians. Since then Tracey the disease has gone bilateral. It's not fun because I wake up in the morning and can hardly hear my self talking. It is what it is though. May God bless you Tracey and i pray he keeps you and all of us in the palms of his hands. God is all we can depend upon in my humbled opinion.
  8. June-

    June- Active Member

    May 12, 2014
    If you have allergies, you might have some seasonal problems. Might be worth it to look at your life recently and see if you might have been exposed to an allergen. House cleaning, pine or other plants, well the list is endless, but it is worth a look. Also, have you been ill in any other way. I was told that assaults from thr immune system can come from a great variety of sources including allergies and viruses and in the same way, we can take pressure off the immune system by reducing any of these stress inputs. Be sure to get enough sleep, try to lighten your load physically and emotionally for a little while. Good luck, keep the faith.
  9. AnneT

    AnneT Active Member

    May 14, 2014
    Ugh it's beyond disappointing when the Beast returns. I had a few good years, and thought it was because I'd quit my stressful job. But now this last year has been tough. I also seem to be weather sensitive (Chinook winds, huge barometric changes here in Calgary, Canada). So I take ibuprofen and tylenol in case it is a migraine variant, gravol and either clonazepam or ativan for dysequilibrium and actual vertigo attacks. I have my pack'o'drugs, mint leaves, rubbing alcohol to sniff (has totally prevented puking!) all in one spot. My family knows what to bring me so I can move as little as possible. Sometimes an ice pack on my neck, and heat on my feet, pressing on some acupressure points help.

    I take Magnesium and B2 for migraine prevention and a bunch of other supplements for mood and anxiety. I've been getting neck physio, doing tai chi (when able - youtube taiflow - 5 minutes a day), and trying acupuncture. (The first acupuncturist I went to wasn't much help, but now I'm seeing someone who has helped a fellow Menierian). I'm considering another trial of Serc, +/- JOH. Over the last year I've now experienced the horrors of drop attacks, so may consider Epival (oh but the list of possible side effects! yuck!) or other migraine prevention drugs (tricyclic antidepressants - but they dry my mouth out and then I get dental issues). My blood pressure is too low for diuretics or beta-blockers. I recently bought TheraSpecs, rose-coloured glasses to help cope with flourescent lights. I'm considering getting an ear piercing that's supposed to help migraines and vertigo (google: Tribal Expressions Migraine), that helped a friend with MAV.

    I really don't want to go the surgical road, so I'm trying everything else. I've recently stopped my Remeron (anti-depressant). I've quit alcohol for 2 years, and have switched from coffee to green tea. I'll try to go totally caffeine-free... gradually. I'm low salt.

    It's soooo hard to figure out what triggers, what helps... I'm sure is incredibly multi-factorial because sometimes I can have salt, or stress, and it's not a problem. Other times... sigh.

    The vertigo attacks take me to such a low place, I'm sure there is like a post-seizure lowering of all our happy brain chemicals, beyond just the "this sucks!" Finding some spiritual context and sustenance is vital for me, though I can't understand why anyone needs to suffer. I keep a little notebook to myself, so I remember when it flares up - all of the above, plus to lay low, cancel anything possible, really rest and listen to my body. Mindfulness meditation, prayerful imagination, surrendering to the fact that I can't be 'useful' today help keep the death wish at bay. I tell myself when it's bad that my only job is "to be".

    I hope some of this helps. Keep the suggestions coming.
  10. tmcmahon2

    tmcmahon2 Member

    May 9, 2015
    I feel a bit off for a few days whenever a weather front moves through and temp or humidity changes quickly. That said, my Meniere's seems to be a bit different in that I haven't had any full blown vertigo attacks for awhile now - Maybe the antivirals? - but generally feel off for a day or so when something triggers it. I'll try to walk down the street and, as HST once wrote, "look like I'm the village drunkard in some early Irish novel". :)

    As for other things to try, most people that take antivirals say it takes a few weeks to kick in so you may have to just give that time. Of course, no one knows what causes Meniere's and it's quite possible that it could be a lot of things that end up with the same result. Viral for one person, auto-immune for another, inner ear dysfunction for someone else ...

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