Severe Tinnitus and Swollen Nymph nodes

Posted , 4 users are following.

Hi Guys,

I am desperate to find out what is wrong with my wife, doctors do not seem to know. 

My wife has been ill for around 10 weeks with tonsillitis, severe headaches, bacterial infection in legs. severe tinnitus and very bad swollen lymph nodes in the neck. 

After seeing 3 different GPs twice each over the first 6 weeks I eventually managed to get her referred to the hospital. After spending 12 nights in hospital and been treated for "probably" viral meningitis she was told she could go home. During this time, the doctors tested for every worse case scenario and all were negative. She has had chest x-rays, CT scan and MRI. MRI showed she had a very small lesion on the brain and was told come back in a year for another MRI. 

So, we were told that she needs to visit an ENT specialist but the nearest one is a 2 hours drive away. We were told we would receive a letter in the post for an appointment, this was a week ago now, and still waiting. 

I am now doing my own research, and looking at different possibilities including ear infections, dental issues, eye issues, menieres disease, allergy problem and more. I was wondering if anyone has any advice or have similar issues? Her tinnitus is mostly in one ear but sometimes both, and she says it is so loud that it feel like a plane is landing in her ear. The nymph nodes around her neck and under jaw have been swollen most of this time, they go down for a bit but them come up again. 

Any advice? 

Thanks Phil

P.S I have also posted this in the Glands group as not sure where to post, there seems to be no general group for ENT. 

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  • Posted

    Hi my name is Theresa Devereux I’m 60 years old and I contracted bacterial meningitis may 15,2005. I went into a coma at the hospital. Was misdiagnosed and while in the coma I became deaf and unable to walk or sit.  I also suffer from extreme loud screaming noises in my brain. I recovered some hearing in my right ear bi had a cochlear implant in my left ear but it didn’t end up working so I had it removed in 2010.  I have searched for the past 13 years for help with what they call tinnitus. I had tinnitus before I ever got sick but this is a million times worse.  I went to the Cleveland clinic in Cleveland and was seen by an entire board of doctors.  Their final diagnosis for the noise in my head was from the hearing loss while in the coma. They said my brain was “afraid “ when I became deaf suddenly and that my brain created phantom sound to fill in the silence.  They were able to measure how loud the noises were and they are 130 decibels which is equivalent to having my head inside the engine of a jet airplane.  My hope was the implant would bring sound to the left side of my head and the noises would eventually fade. I have tried and bought every single advertised tinnitus item ever seen on the internet. And none of them have ever worked. I do take Ativan which is an anti anxiety medication and it is the only thing that helps me to be able to survive and cope with the noises.  I did recently go to an Ent in Syracuse New York to readdress the posibility of trying another cochlear implant he said he wouldn’t ever recommend that for me.  But he did tell me about a woman in Ithaca N Y named Carol Bass who has a very successful tinnitus retraining therapy program. My sister who works in the medical field did hear about Carol earlier in my recovery. We didn’t for whatever reason seek her out. But I am now.  I also know that for me coffee with caffeine alcohol chocolate and loud noises all make my tinnitus worse.  My cell number is 315-4041421 if you or your wife would ever like to reach out to me. I know some days I wish I had another person who is also experiencing this would have been a good thing to have had. I can tell you that as much as the second I woke up from the coma and realized I was deaf and also heard within seconds these loud noises,I never thought I could survive or live a normal life with them. But by the grace of god it has been 13 years this May that I have and I have been able to somehow survive with this and be able to live my life. Not like I was prior to meningitis but a new different life post meningitis. Please tell your wife to hang in there. She can survive this and it will get better. God bless praying for your family 
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    • Posted

      Hi Theresa,

      Thank you for your reply and kinds words. 

      We have been told that my wife probably had viral meningitis and it is supposed to be no where near as bad as bacterial meningitis yet my wife is still not well with the tinnitus and swollen lymph nodes in her neck and around jaw line plus back of the neck. She is still waiting for an appointment at the ENT but that is over a week ago now and we can not just go to the ENT unless we have been referred by a doctor (we live in Ireland). 

      From my research, something has to of caused the meningitis in the first place, and the doctors tested my wife for lots different things but could not find what it was that caused it. I am trying to get my wife to be checked by dentist as well in case she has a tooth abscess which could of caused it. 

      My wife says her tinnitus is like a plane landing in her ear, I have heard that it is very difficult to find causes of tinnitus and it is hard to cure. I know when telling doctors about, it just seems to go over their heads and do not seem to care or maybe do not know how to deal with it. 

      Anyway, hopefully she will get to see an ENT specialist next week, and hopefully she can visit dentist if she is up to it as it seems to be worth a try. 

      Thank you very much again for you reply, and take care and God bless you too. 

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    • Posted

      Feel badly for your wife.  I live in Canada and can’t get a referral yet until I have had tinnitus symptoms for another 6 weeks - I have lived with it for a month now.  It is horrible - distracting - especially in quiet times.  Sleeping with TV on now just to distraction myself.

      I had a viral flu early January that has attracted my ears - constant fluid buildup. Doctors think when fluid clears so will tinnitus but cautioned that it may not clear up and for some people perm.  Sure hope not.

      Best wishes to tour wife for a cure and/or way to cope.

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  • Posted

    Phil.  Seeing an ENT is a good idea even though closest one is two hours away.  Once there you might want to ask/request the ENT doctor the following:

    1.  Prescribe Ativan (Lorazepam) which can calm the inner ear that is usually the source of tinnitus.  This is a sedative that will also calm your wife's anxiety about all of this which will also indirectly help improve the symptoms.

    2.  If ENT thinks there is fluid buildup or inflammation in the middle/inner ear, ask about Intratympanic steroid injection that will reduce swelling and help calm ear symptoms.  Make sure ENT has experience doing this procedure.  It's quite benign and done as outpatient in the office.  Experience is important, however.

    Has your wife been on antibiotics for swollen glands?  ENT might think she should be.

    Good luck....please let us know how you and she are doing after the ENT appointment.

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    • Posted

      Thanks that very useful info. I will ask them about it when eventually get to see ENT.

      My has been on loads of antibiotics, she has been told she probably had viral meningitis but also had bacteria infections before that with tonsillitis. But has been ill for over 2mths. She is better than she was tho, and maybe the swollen glands just take time to settle, it is worrying tho. 

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  • Posted

    Hi I almost forgot to mention that there is a current study in the veterans hospital in Syracuse N y. So many veterans and service people also suffer from tinnitus. What the studies focus is on the I forget I think vein in the neck. They have found that injected the nerve of vein with Botox they have had good success with it quitening the veterans tinnitus I asked if I could be a part of the study but it is only offered to veterans or active duty people seek all the help you can dotm leave any stones  unturned d
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