1. Get our daily digest email where we email the latest new topics from our Strictly Health forum to keep up with the latest developments! Click here to subscribe.

Is it Meniere's, Cochlear Hydrops, and/or Auto Immune Disease or even a fistula?

Discussion in 'Your Living Room' started by aussieman, May 26, 2018.

  1. aussieman

    aussieman New Member

    1
    0
    1
    May 25, 2018
    :'(

    Hello forum members. I am new to this site.

    In Feb 2018 I woke up with Sudden Sensorineural Hearing Loss in my right ear. Back then it was a low frequency loss with severe distorted hearing - sound coming into my right ear was like inside a hallway with a cheap transistor radio speaker that could not play any bass sounds - just distorted treble. I looked up that it appeared to be a case of Diplacusis Dysharmonica and Hyperacusis sensitivity to high pitched sounds.

    Before all of this happened, the following was going on in my life:
    * Have HPV1 virus detected in blood from more than 13 years ago and no symptoms outbreaks.
    * Have Hashimotos/Hypothyroidism treated with Thyroxine medication for about ten years - a year and a half ago I let the medication lapse for several months until I suffered dizziness and feeling faint. A blood test revealed I was close to being hospitalised according to the doctor so since then back on regular dose and never stopped again
    * Have Gastro Oesophageal Reflux Disease (GERD) - throat ulcer since the year 2000 managed with Nexium (esomeprazole), along with patchy gastritis and a Hiatus Hernia - have an endoscopy every three years as a check-up.
    * Very mild asthma
    * Suffer from chronic Post Traumatic Stress Disorder and Major Depressive Disorder for more than 10 years (now medically retired because of it)
    * In 2012 I had a neck X-Ray showing a slightly tilted upper cervical spine and some scoliosis and spondylotic changes - have been suffering on and off neck pain for years - could be a result of injury to that area.
    * I had a wisdom tooth extracted on bottom right side - was compressed and rotted - about a year ago. But it seemed to heal well and has not caused any other issues.

    About October/November 2017 I had a bout of some type of gastro infection that took a long time to resolve - several weeks and I took anti-bacterial medication which seemed to eventually resolve before Christmas.
    Early January I suffered from more gastro infection and ended up taking anti parasitic medication - possibly Giardia infection which cleared it up eventually.
    This was followed by what I would describe as a very mild throat infection and mild flu symptoms that did not prevent me from exercising.

    For several months I had also been suffering from extreme stress due to several very stressful personal issues.

    For several weeks as a way to try to combat stress and get fit again I was on a very intense health kick - going to the gym 5 times a week and training very hard in both weight lifting and cardio. Was on supplements - creating monohydrate, Branch Chain Amino Acids, L-Carnitine and L-Glutamine. I was also eating well to try to lose body fat and get fit again (for many years I have trained at the gym - except for most of 2017 mostly due to depression and stress).

    The day after a hard gym session of lifting very heavy weights and cardio after I woke up noticing the SSHL. Initially I thought it was just some strange blockage or an ear infection stemming from the sore throat.

    I saw an ENT eight days after the SSHL attack (3 March) - went to a clinic before that but the doctor just gave me amoxicillin and anti-histamine. An audiometry revealed a severe reverse slope hearing loss. He suspected possibly Meniere's Disease. I was also referred and saw two neurotologists.
    The neurotologists also did not rule out Cochlear Hydrops, possibly a peri-lymphatic fistula (caused by strain at the gym) or Auto Immune Ear Disease (later suspected).

    I was put onto Prednisolone steroids 60mg per day. Also Betahistine and B group vitamin.
    I also underwent Hyperbaric Oxygen Therapy (15 x sessions of HBOT)
    I was later given 4 x intratympanic injections of Dexamethasone spaced over 12 days (every 3 days) about three weeks into treatment.

    My symptoms had only slightly improved 2 weeks of Prednisolone by about 10dB in lower frequencies 250Hz to 500hz.

    After being advised I could do exercise again - only moderate after several weeks of bed rest and very limited movement, I went to a park and did light to moderate body weight lifting and cardio for two days. On night of second day I felt increased hyperacusis and diplacusis. The next day I suffered further hearing loss, worsened Hyperacusis and tinnitus. I was told to stop exercising. I was put back onto full Prednisolone because I was at the time only on the intratympanic injections and had tapered off Prednisolone. I was also prescribed 30mg Nicergoline daily.

    Two and a half weeks of suffering I had a massive bout of extremely loud tinnitus - so loud it was like a car horn right up against my ear. Extremely frightening and distressing. Thought I was going to go insane and seriously contemplated suicide at that point. All the hearing loss issues, distorted sounds, hyperacusis pain and discomfort and massive anxiety and depression as a result were all getting too much. I had isolated myself to my small room where I live, stopped training, stopped going to a bar that I used to socialise once a week and have a drink with other expats. My life had become totally pathetic and painful.

    Then the next day I had a miraculous recovery of hearing - my right ear felt so good it was almost as good as my left. I could hear bass sounds again. I used YouTube and an Android Hearing Test app that confirmed major improvement. The next couple of days it did deteriorate a bit but an audiometry test revealed a major recovery with just mild loss in the 250Hz to 500Hz range (I wish they tested below from 20Hz to 250Hz as that is where my main losses are and give me hyperacusis problems).

    Since then my hearing has been on a roller coaster with gradual stabilisation. Again, I had been told by my neurotologist to do light exercise - cardio only. I was desperate to do some sort of exercise as I was bedridden 20 hours a day fearing doing anything would trigger an attack but I was noticing severe muscle atrophy with weight loss but increasing belly fat despite eating extremely healthy - low salt, fresh fruit and veggies, lean meat, fish, heaps of vitamins and supplements since the 3 March (Ginkgo Biloba, multi vitamin with magnesium, zinc, ginseng, Alpha Lipoic Acid, N-Acetyl Cysteine, Fish Oil, Taurine, L-Carnitine, L-Arginine. Also, pomegranate extract, crushed fresh garlic, olive oil. Also added Co-Enzyme Q10 for a while)

    After the cardio for two days - again I had a massive deterioration with severe hyperacusis and a day later a massive hearing loss - worse than the original attack. The drop sent low frequencies into profound/deaf levels and higher frequencies also affected.

    I also began to also now experience some vague dizziness when looking up, down or rolling over in bed. The ENT suspected BPPV but not sure 100%. He also thought I had Cochlear Meniere's due to the lack of vertigo.

    About a month after my hearing again recovered after another night before of very loud tinnitus (car horn again). It had not recovered as well as the last time but a vast improvement. An audiometry test confirmed this.

    I had a test by the audiographer for eustachian tube as well as brain stem function which have shown no abnormalities. Neurotologists do not suspect any neuroma. Neurotologist do not suspect it is a fistula causing the hearing loss but did suspect Auto Immune Ear Disease because other than the hearing loss attacks being close to the physical exercise events, it also seemed that when the Prednisolone is tapered off my symptoms worsen as well - a sign of possibly AIED.

    I had blood tests by an immunologist that returned negative but the neurotologist stated that this is just a preliminary test and there is still a possibility I have AIED or Meniere's Disease.

    I also had blood tests revealing high cholesterol and mild liver hepatitis (fatty liver) meaning I have been trying even harder to reduce all fats from my diet, but not exercising out of fear it will trigger an attack.
    I have lost more than 15kg (33lbs) since the SSHL in muscle mass mostly.

    The neurotologist has advised me not to lift weights and only to walk and said there may be a vascular cause. This has extremely frustrated me because the gym has been an integral part of my life for decades and kept me sane, helping me with my depression and self-esteem. It is a double whammy with the hearing loss if I cannot do this ever again.

    Now I have had another recovery - less it seems than last time again and reduced Prednisolone to 20mg per day but have now again began to suffer cluster attacks where my hearing drops and have fullness feeling along with a strong surging tinnitus. If I sleep my ear feels full when I wake up and my hearing is bad until I sit up - I get a loud tinnitus (along with the other tinnitus sounds I get) and my hearing improves but since the last attack my low frequency sounds cannot be heard. I am getting cluster attacks a few times a day now distressing me extremely. There is no let up. I have been told to increase Prednisolone if the attacks worsen for a day or two then try to drop back down to 20mg per day. I am on Betahistine 24mg x 6 tablets per day and a strong B1, B6, B12 tablet as well as Nicergoline 2 x 30mg per day. Still taking Ginkgo and Alpha Lipoic Acid and occasionally add another supplement but is getting too costly. I also take Lorazepam when needed for my anxiety and Clonazepam was prescribed for night time before bed.

    I am in Thailand and due to return to Australia to see specialists - neurotologist, immunologist, upper cervical chiropractor, and anyone else I think can help.

    I am totally despondent and feel like giving up. I have tried to do everything to stop the attacks. I cannot stand the frequent clusters of hearing loss fluctuations, fullness, tinnitus daily. The slight dizziness lasted about a month on and off daily but has stopped. I am isolated, withdrawn, haven't gone out for months, my body looks awful, I feel and look weak. I hate sounds because of the distortions and hyperacusis - despite it not being as bad as before. Talking sounds robotic in my right ear. I lie in bed mostly out of fear of moving that will cause another major attack. Getting to the end of really wanting to live anymore. And the medical costs are punching a huge hole into my retirement - moving back to Australia to get part rebate medical treatments but cost of living there I cannot afford as I cannot work.

    There only seems to be bad news with whatever I have wrong with me. I am so sick of it. Hoping some people will read this long-winded account and relate. Maybe have some suggestions. I am over it.
    :'( :'(
     
  2. June-

    June- Well-Known Member

    1,677
    41
    48
    May 12, 2014
    This story is very similar to my experience, especially the distortion, tinny radio hearing etc. I have cochlear hydrops. Fast forward, antiviral medications acyckovir then famvir removed the distortion and tinnitus. I also regained my low frequency hearing loss. I attribute the hearing improvement to allergy shots. The hearing improvement was very slow and gradual but all but the highest frequency loss came back. You may have that too but not notie as it is outside the usual speech rainge.

    Read on this board about appropriate dosage for antivirals. Dont take them if you have kidney or liver problems but generally they are well tolerated. Ifmyou go with acyclovir be sure to soread itmout across the day in five doses if possible because it does not persist in the system like the other antivirals do. Give it at least a month to see ifmyou get any improvement at all before wuitting them. There is no sudden on/off switch for all symptoms but you will find someth8ng that helps a lot. Be optimistic and patient. The preceding is ifmyou have cochlear hydrops. Of course continue with the workup with your doctors and take precautions they recommend til,this ismsortedmout in case it is a fistula or something else. One more th8ng about cochlear hydrops. It can progress to classic menieres with vertigo. If it responds to antivirals you dodge that bullet too.

    Good luck. Have faith.
     
  3. June-

    June- Well-Known Member

    1,677
    41
    48
    May 12, 2014
    Acyclovir
     
  4. _Desolation_ _Row_

    _Desolation_ _Row_ New Member

    3
    0
    1
    Nov 21, 2020
    I've thought for a long time that the A-I system causes this. Always been a fast healer, but had psoriasis as a kid, and now have arthritis, psoriasis, and Ménière's, and the fact that the gland in the labyrinth that makes the liquid that puts too much pressure in the labyrinth is part of the AUTO-IMMUNE system makes me wonder!
     
  5. Rubygirl

    Rubygirl Member

    38
    13
    8
    Oct 4, 2020
    Hang in there, friend! :)

    First, I notice in your supplement regimen you are taking L-Arginine. Stop this immediately! Arginine is known to encourage viral replication. Since you have a known HPV issue and since increasing evidence shows that Meniere's may have roots in a viral inflammation..... taking this in particular is not helpful. I believe you are probably taking it, along with the L-Carnitine, for muscle gain but for you, this is not the way to go.

    Same if you take protein powders for muscle mass - they are loaded with Arginine too. Same with nuts (if you are munching on almonds as a snack for example).

    Now, I cannot comment on a medical diagnosis, nor can I comment on the drugs. But obviously you are very motivated to bring yourself to optimal health. I really hope you will consider:
    • Diet is paramount. You eat very healthy which is great, especially with low salt. But definitely autoimmune diseases (which has been confirmed for you) and generally "weird diseases" and symptoms with no easy solution are often heavily linked to food allergies and sensitivities. If you can afford it, and if you can get one out where you are, see if you can get an IgG Food Sensitivity Test done (also knows as RAST testing or ELISA testing). It is a blood test done by a lab (don't be fooled by something else.) That would give you a lot of clarity. If you are eating food day in and day out that your immune system is reacting to - of course that is going to cause major health issues with the constant inflammation. Gluten (esp. in wheat and barley) is #1, dairy is #2 and soy and eggs show up a lot. Or, if you can't get the test and if you want to go full tilt into this, look into the AIP diet (Auto Immune Protocol) which is essentially an elimination diet. It really sucks but if you start noticing improvement in how you feel then well worth it. Anyway, whatever you can do to start reducing the allergenic foods will only help you in the long run. Also note that GERD is highly related to food allergies/sensitivities too. I know this for a fact for myself.
    • Read in these forums about the John of Ohio regimen. You are already taking some of the supplements in there but biggest one is the L-Lysine if nothing else, but everything in there has merit. This regimen has given many of us relief.
    • It sounds like you have been on antibiotics - you need to take probiotic supplements to rebuild the good bacteria in the gut. High potency ones, every night before bed.
    • Have your DHEA tested by the lab (while you are at it have them check cortisol levels) - years of PTSD will deplete your adrenals. You can get DHEA supplements if low or on the low side of normal. Other adrenal booting supplements do include ginseng but the siberian ginseng variety not really the red/Korean/Asian ginseng variety. Other "adaptogens" for the adrenals you can look into are rhodiola and ashwaganda. I also recommend you get a B-Complex 50 and take two a day with meals (many neurological issues are related to B vitamin deficiencies and there may not be enough in the multi you are taking).
    • I would also suggest adding L-Glutathione to your regimen of supplements. This is a powerful antioxidant that has shown promise in Meniere's as well as many other conditions. I take 100mg, 1-2 times a day.

    I really hope that something in here clicks with you and makes a difference to turn things around as you've suffered way too much for way too long. Sending you love and prayers from Canada!
     
    • Like Like x 1
  6. Rubygirl

    Rubygirl Member

    38
    13
    8
    Oct 4, 2020
    Oh wow! I just noticed that the original post was from 2.5 years ago. Aussieman - what news of your situation? Are you better? Did you get answers? (If you are still on the Forum?)
     
  7. IvanA

    IvanA Member

    326
    24
    18
    Apr 30, 2020
    This user signed up on the same day he wrote this message and did not post anything else on the forum or reconnect. I hope he is well and that he found relief from his situation, but I highly doubt that we will see him here again.
     
  8. JoannefromJersey

    JoannefromJersey New Member

    8
    1
    3
    Jun 24, 2020
    Is there any way to connect or reach out to this man? Don't we sign up to this forum and supply an email?? I don't remember.
    I read this post a while ago and it almost mirrors my own plight. Since two years have gone by, I wonder what his final diagnosis was and how he's coping.
     
  9. Rubygirl

    Rubygirl Member

    38
    13
    8
    Oct 4, 2020
    Well, we are all here to find information that may help improve our lives and free us from the scourge of MD and similar diseases... but many of us are here to find a sense of community as a secondary gain.

    These illnesses are isolating, and cause depression and anxiety (as we all know). But it is good and comforting to know that we are not alone and there are other people around the world who are going through the same thing.... and even better, that many on here care about other people and try to offer whatever help they can. Not for profit, not for recognition - just because they are amazing human beings (John of Ohio being the gold standard).

    I hope that future new members remain a part of this community, including posting updates, so we can all learn and benefit. :)
     
    • Like Like x 1
  10. _Desolation_ _Row_

    _Desolation_ _Row_ New Member

    3
    0
    1
    Nov 21, 2020
    I've thought for a long time that the A-I system causes this. Always been a fast healer, but had psoriasis as a kid, and now have arthritis, psoriasis, and Ménière's, and the fact that the gland in the labyrinth that makes the liquid that puts too much pressure in the labyrinth--including the cochlea and semicircular balance canals--is part of the AUTO-IMMUNE system makes me wonder! I also notice that ads on TV for many psoriasis and arthritis treatments warn that the treatment can cause other conditions to worsen, since the treatment 'turns down' the A-I system. Isn't there a real connection here, not just coincidence?
     

Share This Page