Horrific Deafness and Aphasia, Unable to Process or Understand or Hear Words

Discussion in 'Introduce Yourself' started by physics13, Apr 18, 2015.

tinnitus forum
    1. physics13
      In pain

      physics13 Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      antibiotics
      Hi, I am terribly damaged after taking ampicillin and roxithromycin, doxycycline, tinidazole, metronidazole and rocephin and gentamicin.

      I am a professor and my LIFE IS DESTROYED by DEAFNESS and aphasia and inability to hear or concentrate on words or process words or even hear them.

      As a last desperate attempt I went to the ER and got 60mg of prednisone and valcyte. I began taking higher doses of NAC, glutathione, vitamin E 4g day and potassium to reduce the levels of toxic antibiotics and free radicals in my ears and body. I'm thinking of starting to take florinef to increase aldosterone and drinking water.
      The only problem is now my ENT won't give me any more medication and I'm on my last 2 days of prednisone. I've begun wearing clay ear plugs wherever I go and will never take another antibiotic

      I notice after taking the prednisone I have some ear pain and tinnitus so I think it might be working somehow. The ampicillin really shot and destroyed my ears.

      I don't know if I should try a higher 160mg/day dose of prednisone but I can't even find a doctor to give it to me. I'm desperately trying to get tympanic injections but my doctors are impossible. on top of it all I have severe breathing problems and am on a ventilator and oxygen
       
      • Hug Hug x 1
    2. 1MW
      No Mood

      1MW Member

      Cause of Tinnitus:
      ssnhl
      ampicillin not is very safe but gentamycin (highly ototoxic) roxithromycin, doxycycline, tinidazole, metronidazole yes.
      Your doctor is fool a newer antibiotic like tygecycline (costs a lot) will have done the job without deaffness.
      Have you mrsa bacteria ? What bacteria you have ?
       
    3. Brianna
      No Mood

      Brianna Member Benefactor

      Location:
      US, NC (the progressive part :) )!
      Tinnitus Since:
      10/2011
      Cause of Tinnitus:
      No clue - too many causes.
      As a professor with the maladies you've identified, I understand how you can say your life is destroyed. I'm really sorry about what you're going through. I have my own issues and cannot imagine what it's like to be in your shoes.

      Doctors in the US are really carefully monitoring how much of a given prescription they can write. I have a friend, who without using prednisone, falls into anxiety and depression and she's terribly skinny but prednisone kills her taste buds. Her doctor limits the amount she can have. It's not unusual here these days. I'm going to see her later and ask her what dose she was on. I think it's exponentially lower but I'll find out.

      The tymphanic membrane injections are of what, please? Also, what level of dB sound do your clay earplugs block?

      There are numerous people on this forum who can address the issues you have. I only know that antibiotics come with varying side-effects.

      Folks, can you please add to this? physics13: I don't think anyone here claims to be a doctor. We can tell you what we've experienced and the results. It doesn't mean you will have the same result and I'm sure you know this already.
       
    4. Kaelon
      Wishful

      Kaelon Member Benefactor Team Tech Team Awareness Team Research

      Location:
      Boston, Mass.
      Tinnitus Since:
      11/2014
      Cause of Tinnitus:
      Muscle Spasms
      @physics13 - When did you have the gentamycin? For ototoxicity caused by gentamycin, there is a 90-day de-cycling period where the body is able to purge itself of any harmful effects, but sadly, in most cases where gentamycin (and vancomycin) cause ototoxicity that persists after 90 days, that damage tends to be permanent. If this all started in 2005, I would be very interested in hearing how you have been coping, what you have been doing, and the assistance you have been receiving. Most boards of medicine in states have certifying requirements around assistance to patients who are injured by ototoxic drugs.
       
    5. Brianna
      No Mood

      Brianna Member Benefactor

      Location:
      US, NC (the progressive part :) )!
      Tinnitus Since:
      10/2011
      Cause of Tinnitus:
      No clue - too many causes.
      Just returned from visiting my friend. I know some physicians are changes to lower doses for women now. Prior to recent years, amounts prescribed were for men, which was really stupid. At her peak times, she took 10 mg/day for a brief period of time and titrated down to 5 mg then got off.

      60 mg may work for you and it appears high.

      Good luck.
       
    6. physics13
      In pain

      physics13 Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      antibiotics
      Is there a place to get prednisone without a script quickly, I only had 6 days. On pubmed I've read of tympanic injections of dexamethasone perhaps 2 times a week, I think it's my last hope to have any life or be able to work. but what is this feeling of tinnitus and some pain when I take prednisone? I think it means the prednisone is working and saving my remaining ear cells


      based on experimental pubmed studies I'm also taking NAC, glutathione, ubiquinol, vitamin C, vitamin E, potassium and thinking of raising my aldosterone since there are some newer studies that it helps restore hearing. I am never going to take an antibiotic again. There's an article on neurotoxicity of antibiotics that I'll post.
      I have I think it's 20db gel ear plugs, I should get better ones to save my ears from damage.
      with prednisone you have to be careful about blood sugar and developing diabetes, I don't know what the risk is for that
       
    7. Brianna
      No Mood

      Brianna Member Benefactor

      Location:
      US, NC (the progressive part :) )!
      Tinnitus Since:
      10/2011
      Cause of Tinnitus:
      No clue - too many causes.
      You need more in-tune people to answer the first question. Kaelon - are you watching this thread?

      It's all beyond me. I looked at my friend's hands today and part of her chest. Prednisone makes her skin thinner and she's more susceptible to what appears to be bruising but it looks like blood dots @1/2" in diameter.

      You can get 32 dB earplugs: http://www.midwayusa.com/product/281604/remington-p-30-ear-plugs-nrr-32-db-5-pair
      I saw them on Amazon. My focus would be trying to find them from a gun store.

      Ear cells ... you mean cilia? I'll also see what I can find ... then trust ... about the injections into your tympanic membranes.
       
    8. physics13
      In pain

      physics13 Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      antibiotics
      http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2125.2011.03991.x/pdf
      I have HORRIFIC trouble processing speech, pronouncing words, hearing words. My brain cannot focus or concentrate on speech and I can't say simple words like submitted. I think I may have had global aphasia from antibiotics. There are black holes in my hearing and understanding.
      I think it was this toxic gentamicin, ampicillin with tinidazole, doxycyline, roxithromycin. The ENT did some kind of nerve signal probe test in my ears and found problems with the frequencies and hearing loss.

      I started taking 80mg/day of prednisone but it seems there's no hope left for my life. I'm looking into aldosterone for the hearing loss.
      http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2125.2011.03991.x/pdf
      I wrote to Steven Park ENT at Montefiore and he says that I should see a neuro otologist
      Is there anything else that can help?
      I'm trying to get my food stamps back, and continue my work in theology.... I was really hoping to someday go to Europe to study mathematics and hear my friends lecture there
      Jean-Pierre Serre, prix Abel et plus jeune...


      http://www.maneyonline.com/doi/abs/10.1163/1568569042664530
      There is also some evidence that it can improve aphasia:
      http://www.ncbi.nlm.nih.gov/pubmed/10338107

      I'm not sure if I should start taking nerve repair vitamins: zinc, methyl folate, methyl b-12, acetyl l carnitine, pregnenolone, NAC with many grams Vitamin C for detoxing the chemicals, vitamin E for preventing scarring. L-Lysine, L-proline, L-glycine would be good as well for repair.
      http://www.israel21c.org/health/israeli-study-vitamin-e-helps-hearing-loss-recovery/
      http://www.ncbi.nlm.nih.gov/pubmed/10913881

      http://www.tinnitusformula.com/library/aldosterone-for-sudden-hearing-loss/#.VSxpX4ctCbB

      Aldosterone for Sudden Hearing Loss
      Sudden Sensorineural Hearing Loss (SSHL) is defined as the sudden loss of hearing of at least 30 decibels occurring within a three day period. Often SSHL can occur within a few hours, several minutes or even instantaneously. People may notice a loud sound or a “pop” just before hearing disappears. Tinnitus is experienced in 70% and vertigo (dizziness) is experienced in 50%. The intensity of the vertigo often corresponds with the degree of hearing loss.

      sshl_dia.jpg

      About one-third of people with SSHL discover their hearing loss when they wake up in the morning. They go to bed with normal hearing and, in the morning, realize they are deaf in one or both ears. Fortunately, SSHL only affects both ears about 2-4% of the time.

      Previous treatment options included oral steroids, antiviral agents, and various medications. Unfortunately, there is no single treatment that has proven effective in reversing this type of hearing loss.

      Now there is new evidence that a hormone produced by the adrenal glands, aldosterone (al-dos’-te-rone) may play a pivotal role in the prevention and treatment of SSHL and may also be helpful for people with presbycusis (age-related hearing loss).

      Estimates of the overall incidence of SSHL range from 5 to 20 per 100,000 persons per year. There are many known causes of SSHL. These include ototoxic medications, Meniere’s disease, acoustic neuroma, head trauma, circulatory problems in the ear, immunological diseases and viral infections.

      About one-third of people with unknown cause, or idiopathic, SSHL recover completely without any treatment. Another third recover some or most of their hearing with treatment. The remaining third don’t recover any hearing whether treated or not.

      Prednisone Treatment

      SSHL is considered by most physicians to be an autoimmune disease of the inner ear. According to this rationale, treatment should consist of oral corticosteroids, such as prednisone, which suppress the immune system. Treatment must begin within a few days of the hearing loss to be effective. This is the primary treatment therapy today even though it has not been satisfactorily proven in clinical trials. Prednisone also has a laundry list of side effects, including hypertension, ulcers, diabetes, cataracts, substantial weight gain, interference with healing, and many others.

      Many physicians consider prednisone the “gold standard” for treating SSHL, often citing a 1980 study conducted by W.R. Wilson.1 However, a more recent overview of clinical studies published in the same journal as the Wilson study found that study had not been properly randomized, causing exaggerated results. Also the methodology included varying dosages and the time at which outcome was measured was not specified. Another study, properly randomized, used consistent dosages and standardized outcome results found no statistical difference between prednisone therapy and placebo.2

      Interestingly, another study referenced in the same overview concerned the use of Ginkgo biloba extract for SSHL. German researchers used oral Ginkgo biloba on patients whose hearing loss occurred less than 10 days before they were included in the study. The researchers used two dosages of 24 mg and 240 mg daily and compared the groups in a randomized, double-blind study. They found that large majorities of both groups recovered completely but patients given the larger dose had less risk of not recovering well. They concluded, “A higher dosage of EGb 761 (Ginkgo biloba) appears to speed up and secure the recovery of SSHL patients, with a good chance that they will recover completely, even with little treatment.”3 Premium-grade Ginkgo biloba extract is one of the primary ingredients in Arches Tinnitus Relief Formula. The recommended daily dosage contains 480 mg of ginkgo extract.

      Aldosterone Treatment

      The aldosterone story begins with researchers at Oregon Hearing Research Center (OHSU) in Portland, OR. Doctors Trune, Kempton and Gross began a series of studies in 2001 that continues today. They knew that prednisone was the standard therapy for SSHL but no one knew the mechanism of action (how it works). Since it was known that high doses of prednisone can spill over from their intended purpose and activate aldosterone receptors, they decided to study whether the activation of aldosterone receptors was the mechanism that restored hearing in SSHL patients.

      adrenals.jpg
      Aldosterone is a mineralocorticoid steroid produced by the adrenal glands located next to the kidneys. The primary purpose of aldosterone is to regulate sodium and potassium metabolism in the kidneys. It also increases water retention. This increases blood volume and therefore, increases blood pressure. Aldosterone is necessary to keep blood pressure in a range that the heart can pump it and to regulate electrolytes in the bloodstream.

      The researchers at OHSU wanted to see if prednisone’s activation of aldosterone receptors, as opposed to suppression of the immune system, was actually causing the improvements in hearing when people used prednisone. To test their theory, they used spironolactone, a medication designed to block aldosterone, on autoimmune deafened mice while also giving them the more usual prednisone. They were able to electronically monitor Auditory Brainstem Response (ABR) before, during and after treatment, which provided data on hearing loss. They found that prednisone no longer had any hearing preserving effects. This led them to hypothesize that the real solution to so-called “autoimmune” hearing loss might come from increasing levels of aldosterone and not by suppressing the immune system. 4, 5

      Next they compared the effects of aldosterone and prednisone in animals with autoimmune hearing loss. They found aldosterone to be more effective than prednisone, leading them to conclude that what had been previously believed to be autoimmune hearing loss might not be autoimmune after all, since aldosterone has no immune suppressing effect. 6, 7

      The Story of Tom

      Enter Jonathan V. Wright, MD, of the Tahoma Clinic in Renton, WA. Dr. Wright has been practicing natural and nutritional medicine since 1973 and is the author of several books on nutritional therapy and regular columns in Prevention and Let’s Live magazines. He published an article in the Townsend Letter for Doctors and Patients in January 2007 called “Take control of your hearing loss before it’s too late”. 8

      Dr. Wright had a patient he refers to as “Tom”. Tom experienced unilateral SSHL in his right ear a year previously. This was long past the time SSHL can be successfully treated. Tom had seen two specialists but neither offered any therapy due to the time interval. Dr. Wright was treating Tom for allergies and low testosterone at the time.

      Six months later, Tom had a serious setback and experienced sudden hearing loss in his left ear, as well. Since it was still widely believed that SSHL was autoimmune in nature, one of his doctors immediately put him on high-dose prednisone (80 mg daily). A month later, Tom reported to Dr. Wright that the prednisone had worked and the hearing in his left hear had returned to its previous level. He had also been able to reduce his dosage of prednisone to 10 mg daily.

      It was Tom who brought to Dr. Wright’s attention the clinical studies discussed above. He also found a paper on using nystatin for candida, the common fungal pathogen in people with SSHL. 9

      Dr. Wright measured Tom’s aldosterone levels and found them to be very low. A first test measured 4.7 micrograms and a second test measured 3.6 micrograms. Normal aldosterone levels range from 6 to 25 micrograms. Dr. Wright decided to try bio-identical aldosterone in Toms’ case, supplemented with nystatin. This was an easy decision because aldosterone is a natural hormone, necessary for life, and bio-identical hormones have no more side effects than the normally produced ones.

      Bio-identical aldosterone is very difficult to obtain in the US so Dr. Wright enlisted the aid of a Canadian compounding pharmacy to supply it. He put Tom on two 125 microgram capsules daily. To monitor the safety of the therapy, Dr. Wright checked Tom’s serum electrolyte levels (potassium, sodium and chloride) monthly. He began taking aldosterone and nystatin as he tapered off the prednisone.

      After a few weeks, Tom had stopped using prednisone entirely. He remained on aldosterone and nystatin and the hearing in his left ear remained normal. He decided to stop taking them at one point but within 10 days his hearing began to fail again. He restarted the aldosterone and his hearing returned to normal.

      Dr. Wright monitored Tom’s aldosterone levels, which increased to 15.8 micrograms after two months and 35 micrograms after 6 months. Since the normal range is between 6 and 25 micrograms, Dr. Wright then lowered Tom’s aldosterone dosage to a single 125 microgram capsule daily. After two years, Tom’s hearing in the left ear remains normal.

      Aldosterone may play a preventive role in age-related hearing loss (presbycusis) as well. In 2005, researchers reported a correlation between low blood levels of aldosterone and hearing loss in older individuals. 10

      In the study, 47 healthy men and women between 58 and 84 years old were given several types of hearing tests in addition to having their aldosterone blood levels measured. Individuals with severe hearing loss had approximately half as much aldosterone as those with normal hearing, a highly significant difference. The researchers concluded “aldosterone hormone may have a protective effect on hearing in old age.”

      Bio-identical aldosterone is very difficult to find in the US even through compounding pharmacies. The FDA has outlawed the use of bio-identical aldosterone even though it is a natural molecule found in everyone’s body. This is highly unusual as the FDA allows other natural hormones to be sold in bio-identical form.

      One possible explanation for this is there is a synthetic analog of aldosterone on the market. The drug is called fludrocortisone, made by Barr Industries under the brand name Florinef. Because fludrocortisone is synthetic, it is treated by the body as an invasive molecule, which induces many of the same side effects that occur with prednisone. It has not been tested for SSHL or presbycusis. This would not be the first time the FDA has banned a natural substance to protect the profits of a pharmaceutical company.

      Aldosterone can be obtained from a Canadian compounding pharmacy with a US doctor’s prescription and can be shipped directly from Canada.

      References

      1. 1 – Wilson WR, Byl FM, Laird N. The efficacy of steroids in the treatment of sudden idiopathic hearing loss. Arch Otolaryngol. 1980; 106: 772-776.
      2. 2 – Conlin AE, Ornes LS. Treatment of Sudden Sensorineural Hearing Loss. Arch Otolaryngol. 2007: 133(6): 573-581.
      3. 3 – Burschka MA, Hassan HA, Reineke T, van Bebber L, Caird DM, Mosges R. Effect of treatment with Ginkgo biloba extract EGb 761 (oral) on unilateral idiopathic sudden hearing loss in a prospective randomized double-blind study of 106 outpatients. Eur Arch Otorhinilaryngol. 2001 Jul; 258(5): 213-9.
      4. 4 – Gross ND, Kempton JB, Trune DR. Spironolactone blocks glucocorticoid mediated hearing preservation in autoimmune mice. Laryngoscope, 2002 Feb; 112(2): 298-303.
      5. 5 – Trune DR, Kempton JB, Aldosterone and prednisone control of cochlear function in MRL/MpJ-Fas(1pr) autoimmune mice. Hear Res. 2001 May; 155(1-2): 9-20.
      6. 6 – Trune DR, Kempton JB, Kessi M. Aldosterone (mineralocorticoid) equivalent to prednisolone (glucocorticoid) in reversing hearing loss in MRL/MpJ-Fas1pr autoimmune mice. Laryngoscope. 2000 Nov: 110(11): 1902-6.
      7. 7 – Trune DR, Kempton JB, Gross ND. Mineralocorticoid receptor mediates glucocorticoid treatment effects in the autoimmune mouse ear. Hear Res. 2006 Feb; 212(1-2): 22-32.
      8. 8 – http://findarticles.com/p/articles/mi_m0ISW/is_282/ai_n19170311.
      9. 9 – Nelson RA. Successful treatment of immune inner ear symptoms with nystatin: Preliminary findings. Available at http://www.mwilliamson.com/hearingloss.htm.
      10. 10 – Tadros SF, Frisina ST, Mapes F, Frisina DR, Frisina RD. Higher serum aldosterone correlates with lower hearing thresholds: A possible protective hormone against presbycusis. Hear Res. 2005 Nov; 209(1-2): 10-8.
      http://www.vanderbilthealth.com/billwilkerson/27939
       
    9. physics13
      In pain

      physics13 Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      antibiotics
      Prednisone is my only hope now to save my remaining ear cells and be able to work and have a normal life. There are side effects like diabetes and bone loss, but I think they can be managed with diet and exercise and possibly metformin

      http://www.amazon.com/Hearos-Ear-Plugs-Xtreme-Protection/dp/B000NP79YM/ref=sr_1_1?ie=UTF8&qid=1429427805&sr=8-1&keywords=ear+plugs
      http://www.amazon.com/Macks-Pillow-...UTF8&qid=1429427805&sr=8-9&keywords=ear+plugs

      the Hearos are rated higher Db than the silicone which mold to your ear
       
    10. Sailboardman
      Frustrated

      Sailboardman Member Benefactor

      Location:
      Florida
      Tinnitus Since:
      04/21/2014
      Cause of Tinnitus:
      Sensorineural hearing loss right ear.
      Prednisone is useless beyond a month of SSHL. Intratympanic injection, also useless beyond the month period.
       
    11. Brianna
      No Mood

      Brianna Member Benefactor

      Location:
      US, NC (the progressive part :) )!
      Tinnitus Since:
      10/2011
      Cause of Tinnitus:
      No clue - too many causes.
      Yes, at 32 Db, they would be rated higher :) and it doesn't surprise me. The molds tend not to be exact from close enough to personal experience. You also would go with something used at a sporting goods or gun store/range. Hearos are there.
       
    12. physics13
      In pain

      physics13 Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      antibiotics
      Actually I had improvement beyond one month of hearing loss. I just wish I had started the HBOT sooner. I'm trying to get more HBOT at a cheap price. I'm so handicapped I can't hear speech or teach english.
      Does anyone know where to get HBOT cheaply?
       
    13. Harold
      Cheerful

      Harold Member

      Tinnitus Since:
      1968
      My Ent checked mt back eye nurves after dialating my eyes.....tells me i have mild early gloucoma.... but said much younger patients show these signs but it does not get worse for maybe 10 years and maybe never.. not to worry ... but i noticed i am changing my eye script like every year a tiny bit stronger , meaning eye sight getting a bit worse every year... so i am having anxiety about that and my sensoneural hearing loss from the vietnam war may be getting a bit worse... my Tinnitus changes from time to time from high spike to low manageable but most days its high pitch and i must redirect my focus away from it by keeping busy or listening to radio with ear buds ....its always something but somehow i manage .. I will tell you that i keep to my heart meds and vitamins in normal range doses and seem to be doing ok on my blood tests.. good diet and walking 2 hours most days when its sunny does help the mind and body....yes a have a walking buddy most of the time.....i wish my wife would do more walking with me , though....anyway i right to you with my issues as they seem to be low level of what you have at a higher level....i will tell you that i will not just try many meds to try helping tinnitus or hearing issues and eye issues that i know will only stay the same ...to many drugs have to many side effects that can as you told us make issues much more worse than is you left things alone and learned to live with it....would rather have low hearing and vision than none at all from overdosing......and by the way i have bad annoying eye floaters as well . and wear sun glasses to get the black floaters neutralized .......where there is a will there seems to be a way.. Hang in there professor and look to decrease meds and maybe let your body get beck to some normal reactions..Maybe your senses will improve off the meds and with more sleep and proper diet .. and have you tried acupressure as this oriental process can work wonders that may surprise you !

      Add to the above accupuncture as well to help your issues.....

      by the way .....what you read on the drugs my work for some people but not for others, and side effects my just effect all drug types you mentioned in your above research findings.
       

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