SSHL, Tinnitus, Panic Attacks, Intratympanic Injections, HBOT, Borrelia

Discussion in 'Introduce Yourself' started by etn_hopes, Jun 27, 2020.

    1. etn_hopes

      etn_hopes Member Benefactor

      Berlin, Germany
      Tinnitus Since:
      Cause of Tinnitus:

      I'm male, 36, from Berlin, Germany, non-smoker.
      I was super stressed from work over the last 7 years, worked 7 days a week 10-16 hours per day, I didn't give my body and mind enough rest. But that's not everything :)

      Here is how I ended up here:

      In the summer of 2019, I had the feeling of ear pressure for the first time. It was this fullness of ear feeling and it got worse over a couple of weeks.
      Then also my neck got extremely tense, I almost couldn't move my head anymore.

      I went to the ENT. He said everything looks normal, nothing to be found, he send me home. I went to the pharmacy and let them check my blood pressure.
      It was at 195/130, they sent me straight to the doctor, he diagnosed high blood pressure and put me on medication.

      I took medication (ACE inhibitor and Amlodipine) that lowered it to an acceptable level (130/90) within a couple of weeks. The ear pressure subsided and disappeared.

      Later, I realized the HBP must have developed between July 2017 and July 2019, because I have examination reports from before that show a normal blood pressure.

      During the months after that, I reduced my workload and de-stressed.
      I also saw dozens of specialists to figure out the reason for the high blood pressure.

      I am lean, eat healthy, not the typical candidate for HBP, so they were quite surprised to see me with this problem and checked for all kinds of things (tumors, hormones, etc.) Nothing found, except for high renine, which can also come from the ace inhibitors. I did an MRI of the kidneys and they suspected renal artery stenosis. I believed them and did an angiography ("the gold standard") in January 2020 to confirm this with absolute certainty and treat it with a stent / pta.

      Unfortunately, the procedure wasn't done very well.
      The doctor who did it messed it up in my opinion and only looked for the stenosis very close to the aorta but not further back near the kidney itself. The resulting pictures did not confirm nor deny that there is renal artery stenosis.

      After this failed attempt, I was very disappointed and recovered at home from the procedure, knowing I might have to do it again.

      Then COVID hit the world.

      I stayed in my apartment from February to April and took it very seriously because I was on high blood pressure pills etc. I did not leave the house at all during this time. I had a cross-trainer to run on and ordered my food from the supermarket. it was a difficult time, but I thought I did ok considering the chaos and uncertainty that was in the air at that time.

      Now in April 2020, I suddenly feel the ear pressure again.
      I put my mask on and went to the ENT. again nothing to be found. he sent me home.

      then the pressure became worse and worse over the timeframe of 2-3 weeks.
      then, on the left ear, the pressure went away on its own.
      but on the right ear, the pressure mounted up and got worse.
      I had the feeling I could no longer de-pressurize my ear in any way and my head explodes.

      Then, I got fluctuations in my blood pressure with some peaks up to 150/100, something I never had before since I was on the medication.

      I went to the ENT again. Now he diagnosed SSHL on the right ear.
      The audiogram showed I lost the low frequencies below 1kHz.
      He prescribed prednisolone pills.

      I took them, even though I had doubts because of the blood pressure.
      The dose was 100/100/100/75/50/25/12,5 mg.

      On the 4th day, I went to the ENT again. My hearing recovered and was almost back to normal.

      All fine and well... Nope.

      2 days after the last pill, the first of many terrible panic attacks hit.
      I suddenly feel very tired. I have to lie down.
      Then I feel a cold shiver creeping up my back. a feeling like goosebumps sliding up my back and covering my neck, then the backside of my head. then I feel some tingling and numbness on the right side of my lip. It was incredibly scary, I never felt something like that before. I was sure something was very, very wrong, and suspected a stroke or some neurological attack. I screamed, "something is wrong, call an ambulance." I measured my blood pressure. it was at 200/130. I took some nitro spray I had as emergency medication. my whole body was shaking.
      After 15 mins the ambulance arrived. they took me to the hospital.

      There, everything was checked.
      CT of the head, angio CT of the head and neck.
      MRI of the head.
      Result: nothing wrong.
      They sent me home.

      In the evening, my blood pressure was at 120/70.

      The next morning I wake up, my right arm feels like it is still asleep. The right side of my face feels numb. I measure blood pressure. It is at 190/130 again. I take the nitro spay and go straight back to the hospital.
      This time, they take me to the nephrology department. I stay there for a week.
      My blood pressure lowered a bit but was high for the whole week.

      During one night, the second attack of hearing loss hit my right ear.
      I lost all the frequencies below 1kHz again and developed a horrible loud screaming tinnitus.

      On the blood pressure front, the doctors again check for all kinds of hormones. They again suspect renal artery stenosis, but at the same time, they find that the ultrasound shows blood is flowing to the kidneys. They recommend I do the angiography again. They give me a date one week later to do the procedure.

      I was home for 2 days, then the public health office calls.
      They say that in the hospital department I was in, there are many COVID-19 cases and they suspect I might have it, too, because I was in contact with someone there who has it.
      They said I have to stay at home for 2 weeks and get tested.
      Fortunately, no symptoms developed and the test was negative. I had a lot of luck there.
      But of course, the angiography could not take place, and I still had these terrible panic attacks that hit at least once or twice every day, every time thinking might die. Total fear of death and stroke, for days, and days.

      They were so terrible, especially because at that point I didn't know that these were probably panic attacks. I thought these were TIAs or stokes and I lived in real constant fear of death every day for at least 2 weeks.
      Then slowly, the panic attacks happened less often.

      So there I was, at the beginning of June 2020, over 45 days after the first hearing loss showed up. a total mental wreck.
      Still, I went to another ENT.
      She said there is nothing I can do. She sent me home.
      Another week passed.

      Then one night, the tinnitus got 3x more terrible. It was so loud that night, so screaming loud, that it was impossible to live, to think, to talk, to do anything. I cried uncontrollably and was absolutely desperate and completely destroyed.

      The next day I went to another ENT.
      I told him that it became so bad that I cannot live with it. I asked him for any available options that I could still try. He proposed doing vitamin c infusions.

      I asked him if we could test my blood for possible infections, because I read that this sometimes can produce hearing loss. He took the blood and send it off to the lab.

      Then he gave me the vitamin c infusion.

      I asked him if he could to intratympanic injections of dexamethasone. He said he does not do that but he knows one doctor that does it. I asked for her name and wrote it down.

      I drove straight to her office and talked to her in despair.
      She was unsure if she would take the risk of giving me a cortisone injection when I reacted so badly to the prednisolone pills.

      She told me I have to live with the tinnitus. I told her I could maybe live in some way with tinnitus, but the monster that developed in my ear was of such terrible quality that it was totally impossible to do anything.

      She said she has to talk to a colleague first and would call me to inform me if I could get the injection.

      In the evening she called and said I could have the injection at my own risk.

      The next morning I drove to her office again.
      She did another audiogram, it was even worse than the ones before.
      I got the first injection.

      One day later, the tinnitus was maybe 50% of what it was before the injection.
      It definitely worked. Also, the audiogram showed some minimal improvements.

      Also, in the coming days, I had no panic attack and no blood pressure problems.

      So I got the second injection.
      Again, the tinnitus felt a little bit less intense.

      Unfortunately, the hearing did not improve anymore.
      It probably was far too late for that already.

      Motivated by this success, I tried to find a place offering HBOT treatment.
      The Berlin chamber was closed for non-life-threatening cases because of COVID-19.
      The Leipzig chamber did not pick up the phone.
      The Hannover chamber guy told me that they do not take tinnitus or hearing loss patients and I should forget it, it would not work anyway.
      The Hamburg chamber answered the phone and gave me an appointment only 3 days from my call.

      So I rented an AirBnb in Hamburg and right now I am in Hamburg to do the HBOT treatment. Today I had my 11th session. I plan to do 4 more.
      I have to say so far the HBOT did not really do much for me, but I could not ever live without trying everything I can.

      I also found an ENT ambulance here in a Hamburg hospital that continued with the intratympanic injections. I had injections number 3, 4, 5 here in Hamburg.

      I have to say that with every additional injection I feel less and less improvement, but still, I credit the intratympanic injections with most of the recovery so far. it has made a big difference and I wished I would have done them from the beginning. I seriously think that they should be the first treatment anyone with sudden hearing loss should get.

      The head physician there looked at my audiogram and said I have Meniere's disease.
      But he did not do any other tests except for the Frenzel glasses that showed nothing unusual, so I ignore him until I get a vertigo attack.
      So far I do not have those.
      I do have to say though Cochlear Hydrops would fit my symptoms pretty well.

      When I was in Hamburg for over a week, the ENT from Berlin with the lab results called. He received them 3 days after the test, but he called me 10 days after.
      Surprise: I tested positive for Borrelia burgdorferi (IgM) and EBV (IgG).

      The EBV is nothing special, around 95% of the population have this.
      It can be reactivated though when the immune system is suppressed (for example by prednisolone).

      But the Borrelia burgdorferi (IgM positive, IgG negative, Western Blot: p41; Osp17, (VlsE)) could be a real hint.
      I read everything about these things and the lab test.
      I was shocked and hyped at the same time.
      Normally my test result fits a relatively fresh infection, because no IgG antibodies were present. But I did not see a tick bite in the last months and I was inside my apartment since February 2020 because of COVID-19, so if Borrelia is my problem, then I have had this far longer.
      Most likely from a trip to Bali I did in December 2017. Half a year before my high blood pressure and ear pressure first started. I was bitten by a lot of big nasty mosquitoes there.

      Of course, I got antibiotics (Doxycycline). I take 200mg now for 15 days.
      I'm currently on day 10 of Doxycycline.

      One thing that I found is that my blood pressure has lowered tremendously.
      I am now on lower medication and still, I am at 100/70.
      This makes me extremely excited. Maybe the whole damn thing in the last 2 years was caused by Borrelia.

      Well, this is where I am at right now.
      Sitting in another city, diagnosed with borrelia, taking doxy, undertaking HBOT, had 5 intratympanic injections, and my right ear is ringing and humming and everything sounds like a ring modulator effect.

      I am still extremely scared of my whole experience and the fear of imminent death, but at least the panic attacks seem to be gone by now.
      2020 really was terrible so far.

      My advice for anyone with SSHL:
      - Get intratympanic injections as soon as possible
      - Get tested for viral and bacteria infections BEFORE you take high dose prednisolone pills. If you have an infection, or any (maybe unknown) disposition these can mess you up incredibly bad.
      - Don't listen to ENTs, do your own research, demand the treatments actively, they will not tell you and they often times don't know.
      • Hug Hug x 2
    2. ajc

      ajc Member

      Tinnitus Since:
      11/2002; spike 2009; worse 2017-18
      Cause of Tinnitus:
      Loud music - noise damage
      Many people here have got tinnitus or worsened by Doxycycline. Be careful with the drug.

      What a story you had!! Thanks for telling it all.

      The intratympanic steroid injections need to become used widespread.
      • Like Like x 1
    3. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Advocate

      Geelong, Victoria
      Tinnitus Since:
    4. AUTHOR

      etn_hopes Member Benefactor

      Berlin, Germany
      Tinnitus Since:
      Cause of Tinnitus:
      I plan to come back here from time to time to give updates on my progress so that maybe somebody else can learn from my experience or maybe somebody can help me with their knowledge.

      Today I had my 15th and last HBOT session.
      The sessions were 2 hours at 1.4 bar, every day except Sundays. Between blocks of 20 minutes of breathing 100% oxygen, there were short breaks where we were breathing normal air.

      Still, I do not feel a significant effect from the HBOT. Maybe in the next 2 weeks, something still happens. If not, at least I tried.
      I can imagine if I started it right after the hearing loss happened it might have had a bigger effect. I started around 50 days after SSHL was first diagnosed, probably that was already too late.

      The audiogram today still shows the same low-frequency hearing loss, no changes. The thing is not moving anymore.
      The tinnitus is still present 24/7, humming around in the low frequencies, although by now most of the time it is not terrible enough to completely ruin my day. Somehow I can imagine that a life with it is possible and I will try my best to improve it.

      I also finished the antibiotics for potential borreliosis.
      My blood pressure is still much lower than before, I take that as a good sign for now and I am excited if it stays at that level. It is also possible that the HBOT influenced the blood pressure, who knows.

      I now have the following plan to support healing for my ear:
      • I try to get one more intratympanic injection next week (I had 5 already) and see if there is still any effect from it.
      • I will try ginkgo biloba (120mg tablets) for a month.
      • I will go to the physiotherapist regularly (twice per week) to ease my neck and shoulder muscles, they are very tense and I think there is a connection between the tight neck muscles, the ear, and the blood pressure. I will limit the time i stare into my computer screen for the same reason.
      • I will continue the low salt, gluten-free diet I started recently and of course, I will continue with no alcohol, no caffeine.
      • I will pick up running again when I'm back home, at least 30 mins every day.

      • I started taking L-Lysine (2000mg per day) and intend to continue for at least a month. I do that because it is in the John of Ohio Regimen and the reasoning makes sense to me. I do think that an infection of some sort took place in my ear. If it was a virus I don't know, but especially because I do have EBV antibodies and it might be possible that the virus became active again because of the prednisolone. I will also try to get an EBV PCR to rule out an active infection.
      • I am thinking about trying magnesium again, but I am a little afraid because back in May, every time i took it, I suffered bad panic attacks later the same day. I heard from my dad that my grandpa also did not react good to high levels of magnesium. Maybe it is a family thing. I probably better test my blood levels first if there is actually a shortage.
      • I was tested for low vitamin D levels, so I will take 2000ie drops every day and test again in a couple of weeks.
      • I will drink a glass of water with a bit of apple cider vinegar 2-3 times per day. Started it because of some guy in a forum claims it helped him. Doesn't hurt me, so why not.
      • I will take Coenzyme Q-10, just for the fun of it.
      • I will also get bloodwork done for vitamins and minerals to see if anything else is out of balance.

      • These were without doubt the hardest months of my life so far. I am still not 100% ok and I think quite different about what is important in life. I also think about death a lot and how to deal with life from now on. It seems impossible for me to go back to my old life where I didn't worry that much about it. This all goes beyond the means of this forum, but I started to read books and will continue to talk to someone and try to come to terms with these things. Maybe there is even a spiritual side in me I can discover. I just know it cannot be like it was before.

      Further Ideas:
      I might try the Konftec low-level laser, even though I'm very skeptical and it sounds like a ripoff.
      If somebody has one he/she don't needs anymore, I would be willing to buy a used one.
    5. AUTHOR

      etn_hopes Member Benefactor

      Berlin, Germany
      Tinnitus Since:
      Cause of Tinnitus:
      • Like Like x 1
    6. AUTHOR

      etn_hopes Member Benefactor

      Berlin, Germany
      Tinnitus Since:
      Cause of Tinnitus:
      I thought it is time for an update. Unfortunately not a happy one.
      It is now over 7 months since I first experienced SSHL.

      After my hearing was significantly restored in July 2020 - I posted my success story here - I again lost the low frequencies in August, and unfortunately I lost more than before.
      Since then I had 3 instances where I lost more frequencies, got intratympanic injections, regained a bit of what was lost, and then the circle continued with more hearing loss. I currently fight for the 1000 Hz range but it looks like this is going down now as well. Last week was the last time I lost more of my hearing.

      It is still unclear what causes this.
      My ENT just says my inner ear is unstable. Thanks for this wisdom :D
      I had another MRI to check the nerve and brain and they say it looks fine.
      The TMJ specialist says the TMJ looks fine as well and does not think that my hearing loss / tinnitus comes from TMJ.
      The last borrelia test (lymphocyte transformation test) was negative (though western blot still shows positive). That also put doubt into the borrelia-hypothesis.
      Somehow I don't trust any of my docs opinions anymore...

      I don't have vertigo (thank god) but i think it could be cochlear hydrops.
      I tried Betahistine for a week, i did not feel a difference. Maybe I try it again for a longer timeframe or in a higher dose, but i don't have high hopes for this to work.

      I still have Valaciclovir and Doxycycline at home to try, but I am hesitant to take too many different things at one time and those also can have negative side effects.

      It is hard to say this, but somehow I have lost hope that this will get better with the treatments available today. I try to get on with life as best as I can, but it is hard. There are better days and there are terrible days. But the last happy day I can remember is a long time ago. This whole episode left me deeply depressed and so far I cannot enjoy life as I could before. I lost a lot of weight and I feel terrible. I am seeing a therapist but so far that hasn't help much.

      Next week I will get a hearing aid and put all my hope in the medications that are currently developed.
      I hope that there will be a cure in the future and life will get better for me again, and for everyone else on here.
      Unfortunately right now I have no encouraging message to share.
      • Hug Hug x 3
    7. Kendra

      Kendra Member

      Tinnitus Since:
      Cause of Tinnitus:
      SSNHL/ Acoustic Trauma
      You should try a diuretic to see if that would help since it could be cochlear hydrops.
      • Like Like x 1
    8. Croaker

      Croaker Member

      Tinnitus Since:
      Cause of Tinnitus:
      Ebselen (SPI-1005) and Otividex are two drugs off the top of my head that may help if they make it out of trials. Ebselen in particular is available as a research chemical.

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