Newly Diagnosed and Desperate!

Discussion in 'Introduce Yourself' started by Dawn71, Sep 6, 2018.

    1. Dawn71

      Dawn71 Member

      Location:
      Ipswich
      Tinnitus Since:
      August 2018
      Cause of Tinnitus:
      unknown
      Hello fellow sufferers

      I am a 71 year old lady who has just been diagnosed with Meniere's Disease and it has really hit me for six. I was happily going along with my life, had been dieting and lost three stone, feeling very pleased with myself and looking forward to our annual trip to Cyprus in October. WHAM!! I awoke one morning with the most horrendous bout of vertigo, nausea, incontinence, the lot. It was so bad that my husband called the paramedics out and a very nice chap said he thought I might have an ear infection and to see my Doctor the next day. The attack lasted 6 hours, during which time I was ok as long as I lay quite still. I did notice at the time that there were strange noises in my ears, but to be honest I didnt pay that much attention.

      Visited the GP the next day and she said she could see a bit of fluid behind my eardrum and advised me to take Ibuprofen to reduce the inflammation. She didnt seem too concerned so I wasnt either. During the next couple of days, the tinnitus started to get steadily worse. It was like a very loud engine running in one ear and a high pitched ringing in the other. I made yet another GP appointment and saw a different doctor. Again she was sympathetic but did not offer any diagnosis nor really any help, just said it would take time to clear. I asked if I could be referred privately to an ENT Consultant and I subsequently made an appointment and saw him three days later. He did a hearing test, said that for my age I had excellent hearing, took my history and pronounced that he thought I had MD. To say I was shocked was an understatement. He prescribed Serc and ordered some balance tests (which to date I have not had) so that he could be sure of his diagnosis but he was 99pc sure he was right.

      Not knowing much about MD I immediately googled everything I could and what I found out truly frightened me. By this time the tinnitus was unbearable, it was with me 24/7.

      Back I went to the GP and this time saw a doctor who obviously doesnt care much for his patients. To quote, 'yes, I agree, I think its Menieres too. Afraid its just something you'll have to live with. Pills? What pille? Think Mr S only gave you those as a placebo, dont bother to take any more, they wont help. I suggest you try to mask the noise and you will eventually get used to it' The whole consultation took around 4 minutes and I came out feeling truly hopeless. Needless to say I am now in the process of changing my surgery in the hope that I can find someone who will at least listen to my problems.

      Since then the tinnitus has fluctuated slightly, some days its louder than others and I have had periods where it has appeared to disappear, only to surface again louder than ever. I am now sleeping upright in a chair as I find lieing down makes it so much worse. I cry, I rage, I have periods of acceptance and periods of why me. I really cannot imagine living what life I have left if this is what I have to look forward to. Life has lost any joy it had, I limp from one day to the next, hoping for a miracle I guess.

      So sorry for feeling so sorry for myself, I realise I have to pull myself out of this trough but its so hard. Dont think my husband understands just how awful I feel, he tries to be sympathetic but I find it difficult to explain things to him. Luckily he doesnt suffer from anything major.

      I really dont know which way to turn, do I visit the GP yet again and ask for drugs which might help to reduce the noise level, do I go down the sleeping pill route (I cant remember the last time I had more than a couple of hours sleep in a night), do I ask to see ENT again and request maskers, is it too early for any of this? I am at my wits end and verging on suicidal at the moment, any help any of you can give me will be greatly appreciated.
       
      • Hug Hug x 7
    2. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Hall of Fame Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      12/2013
    3. billie48
      Sunshine

      billie48 Member Benefactor Ambassador Hall of Fame

      Location:
      Canada
      Tinnitus Since:
      03/2009
      Cause of Tinnitus:
      not sure
      Welcome to the forum. I agree with Deb that @glynis is probably the best person on TT forum about MD as she has dealt with it for some time. So she will give you hands on info on how to deal with this condition. Tinnitus is hard at the beginning but over time things will improve. Give yourself sometime to adjust and harden to this condition. You are still very new with T and can't rule out that you will get better over time. The success stories forum have many people who suffered a lot initially but improve over time. I am one of those people. I was in a mess initially but today I live a normal, happy, productive and absolutely enjoyable life. Check out my success story as I share some helpful strategies. Don't give up and don't despair. Better days will come. Take care. God bless.

      My success story:
      https://www.tinnitustalk.com/thread...w-i-recovered-from-tinnitus-hyperacusis.3148/

       
      • Like Like x 1
    4. AUTHOR
      AUTHOR
      Dawn71

      Dawn71 Member

      Location:
      Ipswich
      Tinnitus Since:
      August 2018
      Cause of Tinnitus:
      unknown
      Tu so much for your reply. I cried as I read your story, how wonderful you have been able to get through the bad times and are now enjoying life again. I would so like to get help from Glynis, I have read her posts and she is an inspiring lady. I am new to this and have no idea how to contact her. Could you let me know please. Again thanks for the reply, it was kind of you.
       
      • Hug Hug x 1
    5. John CC
      Pensive

      John CC Member Benefactor

      Location:
      Toronto, Ontario
      Tinnitus Since:
      07/2018
      Cause of Tinnitus:
      Phone ring tone directly in my ear/hearing loss 15% l, 25% r
      Hello Dawn I too am new to tinnitus, not yet 2 months in. I am glad you found this forum as it gave me the hope and the support I needed from a lot of different people who are united by one element, tinnitus. From what I have read and experienced, the first couple of months are very stressful. You find yourself asking what is this, why me, what is next. As I am new to the world of T. I can only give you insight into the stuff I had to learn right at the start. There are others on this forum who can speak with much greater knowledge about hearing and tinnitus, and I agree with comments made above about Glynis, she is wonderful and has a lot of experience. To contact her directly you can start a conversation with her by going up to the top of the home page for tinnitus talk forum and click on the word members. You will see Glynis there and then click on her. A screen will pop up and write in the top empty box with your name on it a message. I have not yet tried this approach, so hopefully it will work. If not, you can also post another new post and I would title it "Searching for Glynis", and I am sure she will reply and you can start talking to her that way. My t can get so loud I hear it over a car engine on the highway, I hear it when I wake up. What gets me through it is the support and wisdom I have received on this forum with many people telling me, after patiently listening to me, as to what was happening to me and what to expect. For me it was that I had some hopeful signs. So far, their advice has been pretty good, and what I needed.

      Everyone knows what you are going through, and you are not alone, you have support at this site. There are others who regularly read, support and answer your questions. Just realize that this site is a world wide site, so if people do not respond right away, it is because they may be on another continent. So when you look for responses and your waiting, give it some time.

      As I suspect, you have already been reading the post in the Introduce Yourself and Support sections. You might also want to read the Success Stories section and realize it can give you some hope. As a thought I would encourage your husband to read this forum as that might give him a better apprecaition for the stress and strain this condition causes, particularly at the start. These section may help both of you gain some insight to the various issues and aspects of tinnitus.

      From what I have started to learn is that loud noise = bad (so at the start listen to your music at a lower volume and movies can be loud so be wary and keep the volume down), head phones = bad, ear protection = good (ear plugs or ear muffs or a combination of), being aware and not letting your guard down, e.g., going into a loud restaurant or coffee shop without ear protection and thinking it will be ok = not good, realizing and having and believing in your future and hope = good. When you go to bed have some music playing in the background, just enough to match your T to help you sleep. I have found on the internet Tinnitus Sound Therapy music, and for me it helped. I listened to different music, some spoke to me, some didn't. I have it on during the day, and at night I take my laptop into my bedroom and play it overnight (some of the sites go for 8 to 10 hours). If you look on the tinnitus talk forum home page, about half way down to the right you will see a bar titled Audio Player. You can click on it to get an idea about the different sounds used in tinnitus sound therapy. It is important, and much easier to say than do, learn to focus your attention from the screeming in your ear. One approach of many could be to shift your focus. It is amazing how it begins to disappear when your attention is elsewhere. Yes, it is easy to say, not always easy to do, but with some practise and focus you can do it. At the start, and for the first couple of months, for some the t. is fairly consistent, for others it can fluctuate a little or a lot. From what I am learning is that it may stay at one volume at the start (for a month or 2) and then it may fluctuate, or it my also fluctuate at the start as well, both can be considered frustrating, but they are not unusual. From what I have learned in a number of cases it does get better, but that is where others can share their greater wisdon on this. This condition appears to be as unique as are finger prints and while people may have similiar stories, they are unique qualities to this. So is you symptons don't fit into other peoples descriptions, it is just the nature of the beast. As I said I am new myself so I focus on the importance of support and hope at this important entry time to the world of T. as I call it. Coffee Girl, Bill B., Fishbone, Micheal L., Glnyis, Greg among others who have a lot of good ideas, and more experience than I do.

      Best of luck and I hope this helps you deal with the world of t., a world no one wants to enter but enter it we have. Remember the start is the hardest and most challenging, but from what I have read there is room for optimism, and that you can once again smile, and enjoy life again.
      John CC
       
    6. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      @Dawn71 ,
      A warm welcome to Tinnitus Talk.

      Sorry It's taken a while get back to you as was not well but went into work but had to come home and could not go in today and still very rough .From a sickness bug and Meniere's attack out of the blue still in bed.

      I have had Menieres 14 +years and will suppport you all I can as I know just what your going through with symptoms.

      Serc/Betahistine will help control the vertigo and will help the sickness but you can add a siickness tablet also.

      Try to reduce salt and you could ask your doctor about adding Cinnarazine 15mg as it can reduce tinnitus due to Menieres.
      I will keep an eye on your posts so I can reply back to you .
      How are you this morning?
      love glynis x
       
      • Hug Hug x 1
    7. AUTHOR
      AUTHOR
      Dawn71

      Dawn71 Member

      Location:
      Ipswich
      Tinnitus Since:
      August 2018
      Cause of Tinnitus:
      unknown
      Oh Glynis, Tu so much for replying. So sorry to hear you are poorly. Hope it improves soon. Bearable this a.m., grand daughter is 8 tomorrow so trying to keep busy with party prep. I have recently re registered so will try to get appt and ask about cinnarazine. Its the not sleeping that really gets to me at present. I am upright in a chair because I find it impossible to sleep flat. I am averaging 2 hours a night and am shattered. Would it be an idea to try sleeping pills or is there anything else you can recommend. I have to get it out of my head that my diagnosis is wrong and this is just going to go away. Have been recommended masking hearing aids, do they help? One of my noises is a low drone so don't know if they would help with that. Do I need to wear earplugs when I leave the house and in company? We are due to go to Cyprus end of September, is that a good idea? So many questions, for which I am sorry. Any help I would be so grateful for.
       
    8. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Hearing aids with maskers or just maskers can help.

      Sleeping tablets can help but for short term.
      I take a low dose Antidepressant for sleep and ok for long term and not adictive like sleeping tablets.

      You could try Melatonin and maybe some soft music .
      About ear protection just use it if around loud sounds that you don't normally hear daily eg Cinema, roadworks ,loud music .
      I'm not sure about flying as I have never been on a plane but other members can answer that one .
      love glynis
       
    9. AUTHOR
      AUTHOR
      Dawn71

      Dawn71 Member

      Location:
      Ipswich
      Tinnitus Since:
      August 2018
      Cause of Tinnitus:
      unknown
      Thank you so much. Will discuss with GP and see what he can do. Do you find the AD helps during the day as well as at night? Am sure someone on the forum will be able to give me some advice re flying. I really would love to be able to have my holiday. Feel better soon. Love Dawn x
       
    10. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      It just helps me sleep better .
      love glynis x
       
    11. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      I would only be concerned about flying if there was an underlying eustachian tube problem that would prevent pressure equalization from being established successfully (via yawning/swallowing/etc).

      I've taken a few planes since my ear troubles and have had no issues, in spite of the fact that I have a prosthesis in lieu of stapes bone in my middle ear.

      If you worry about jet engine noise, you can use ear plugs or - my favorite - noise cancelling headphones (but don't be cheap on those: quality makes a big difference, and they work wonders on airplanes).
       
    12. AUTHOR
      AUTHOR
      Dawn71

      Dawn71 Member

      Location:
      Ipswich
      Tinnitus Since:
      August 2018
      Cause of Tinnitus:
      unknown
      Thank you for the info. Hasn't been suggested I have eustachian tube problem so hoping not. The noise didn't used to bother me but now its anyone's guess. Which earplugs do you recommend? I also need ones that are 'safe' as my husband is a snorer and there's no spare room to escape to on hols. Thanks again for replying. Dawn
       
    13. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      @Dawn71,
      How are you feeling now duck ?
      Hope your granddaughters party went well also.

      love glynis
       
    14. AUTHOR
      AUTHOR
      Dawn71

      Dawn71 Member

      Location:
      Ipswich
      Tinnitus Since:
      August 2018
      Cause of Tinnitus:
      unknown
      Hello Glynis. Party went well thankyou, actually managed to enjoy some of the evening, grandchildren are such a joy. Gave myself a good talking to yesterday and do feel a bit more optimistic. I am still sleeping so badly tho so will try to see my new GP this week for help. Have a hearing test appt with our local hearing clinic tomorrow with the idea of maybe getting maskers. I have read Michael's post in which hecadvises
       
    15. AUTHOR
      AUTHOR
      Dawn71

      Dawn71 Member

      Location:
      Ipswich
      Tinnitus Since:
      August 2018
      Cause of Tinnitus:
      unknown
      Wait and see policy and not to rush into purchasing. What is your opinion. Am also thinking about noise generator and sleep pillow or is it too early for those? Do hope you ate
       
      • Friendly Friendly x 1
    16. AUTHOR
      AUTHOR
      Dawn71

      Dawn71 Member

      Location:
      Ipswich
      Tinnitus Since:
      August 2018
      Cause of Tinnitus:
      unknown
      Sorry, keep pressing wrong button!! Meant to say do hope you are feeling better. Tu so much for keeping an eye on me. Lol Dawned
       
    17. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      @Dawn71,
      Glad your party went well and enjoyed yourself.
      White noise generators can help and duel purpose hearing aids with maskers built in.

      I would go for pillow speakers as are stronger and can be put under any pillow each side of your head.
      The sleep pillow only has a tiny speaker in the middle.
      You can get ones on amazon and the BTA shop sell nice ones too!
      I had one on amazon shaped like a triangle with speaker on each side .

      love glynis
       
    18. AUTHOR
      AUTHOR
      Dawn71

      Dawn71 Member

      Location:
      Ipswich
      Tinnitus Since:
      August 2018
      Cause of Tinnitus:
      unknown
      Once again Tu Glynis for your helpful advice. I will go for the speakers I think. Will see how the hearing test goes before deciding on the maskers. I think if i could sleep better I would feel much better equipped to face the day. Lol Dawn
       
      • Like Like x 1
    19. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      @Dawn71 ,
      Good luck with your hearing test tomorrow,
      let me know how it went.

      love glynis
       
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