Has anyone overcome this condition

Posted , 9 users are following.

Hi,I ve suffering from Labythrinitis for 6 yrs,I was getting better,but had a bad vertigo at teach this year and it's brought the dizziness back this condition has crushed my confidence and I hardly go out.My husband has told me if I don t get better and start living a normal life he is leaving me,we have an 11yr old daughter I am trying so hard to better.I would any advise on how to get over this condition,it's ruined my life.

1 like, 67 replies

Report / Delete

67 Replies

Prev Next
  • Posted

    Hi there

    I know how you feel, got the same it started last September going for an M R I scan next week  I hate being like this being stuck in can't do much 

    My daughter did get very angry with me not being well, as she is 18 years old, but she does understand now, it takes over your life waiting for new meds to help me.

    Report / Delete Reply
    • Posted

      Glad your girl see it for what it is Shar .Hard to explain this unless you have it ,but it can be done ,I explain it like this ,we've all been on a roundabout at some given time ,then that feeling getting off ,but that feeling never stops for us .Now that people should be able to get ,if not get them in local park and try them on roundabout ,then ask if they could cope .No would have to come back at ya .Fudge maybe should try that on her old man .Just a passing thought .id spin that so fast his head would come off ,hey Karma Satisfied 
      Report / Delete Reply
    • Posted

      There are so many of us with the same thing, but finding help out there is hard 

      It's just me and my daughter now he left

      Me, I have more bad days then good days  

      What about you.

      Shar123

      Report / Delete Reply
    • Posted

      That's a really good explanation of the feeling Marlene,I d love spin him around so fast it would make his head hurt lol.i to believe in karma !!!  I ve gone from feeling hurt to feeling mad xx
      Report / Delete Reply
    • Posted

      Shar I've been married 48yrs on St Patricks day ,mu husbands got tinnitus as well 30 yrs  me had it for 18yrs ,but been worse tinnitus after I got illness ,then 3 yrs ago ,this swaying / rocking began ,my husbands not got this ,to which I'm thankful for as he's asthmatic ,he understands far better ,he gets the roundabout ,knows how hard I got dealing with this ,tinnitus and rhinitis going on .It changes the way you go about living your life ,but your still the same person. Just things on health front off track ,( if you can call it that ) I'm here for him and visa versa ,that's married life sickness and in health ,good and bad times .why get married if you can see things through those times .

          Some men aren't cut from the same cloth ,sad to say ,think were old school .

        Start again ,you can ,don't let that one miserable GIT stop you moving forward ,despite what's gone in past ,he's old news .Not worthy .

         Now we've all got to get this problem fixed ,so we need to keep at it pressure on Drs ,ENT's nag ,nag ,and nag even more .Go private if you can raise the cash  all we seem to be doing ,and I mean all is going from one dr to another think Gills done lots of rounds with the medical fraternity out there ,she will tell you that ,she's done the most in that regards on this site ,and doesn't take prisoners in her wake .

         So New year lets get the positives going .go get Drs to listen ,not to pop pills ,in hope this is just going to one day fade away ,we've proved it just doesn't happen .Chin up Shar life will get better,sooner than we hoped for God Willing .

      Report / Delete Reply
  • Posted

    I agree with the ladies.  If you haven't experienced this hell you have no idea as to what it takes to cope with it.  I cannot imagine someone suffering this for years but, from replys from you and others I know that sometimes it doesn't improve and becomes a chronic illiness.  I cannot fathom someone telling someone that they had to get over an illness that you have no control over.  What if you had cancer or a heart condition, could someone just decide to get over it?  If you haven't exeprienced it long term you cannot imagine the daily torment that comes along with it.  Given the choice, all of us would gladly choose not to have experienced this but, as we all know that isn't how this condition works.  We also know that stress contributes to it and I can only imagine the level of stress that this will add for you.

    Those of us that have had it, or are still dealing with it, know what you experience and share concern for your situation.  My thought, you may be better off.  What would it be next time you had an illness? 

    Report / Delete Reply
    • Posted

      Hi Terry thanks for your kind words,he just thinks I m weak because I ve the anxiety part get a hold of me,I want to get back to some sort of normality but I get very bad panic attacks,mostly in shops because of the lighting and travelling,because I get so travel sick.how do you cope with day to day life? Xx
      Report / Delete Reply
    • Posted

      Hi, I started to get travel sick again after all these years (had as a child, mainly,on buses or back seat of cars, okay in the front!!).  I discovered a homeopathic remedy that,s great called Cocculus, that I take two,of before I go out. Preferably an hour before, but,if I forget just chuck a couple back as I walk out the door to bus stop. Also coca cola, preferably flat, Always carry a bottle with me, it,s good for travel sickness.  I have found that all my little natural things to help me cope with day to day life help me to stay sane!
      Report / Delete Reply
    • Posted

      I doubt that you are weak.  Anxiety is common with this condition as others will attest.  You do have to push yourself to get that behind you as best you can.  I have been on several drugs for the anxiety.  Gabapentin helped me some but, now when I feel panic I take a Xanax.  I know that the benzos slow compensation but, I find it helps me more than any other and I only take it as needed.  Stores drive me crazy so, unless absolutely necessary I avoid them.  Especially, those with high ceilings and large floor space.  I get a feeling of sort of like being in a snow globe.  Spin him around several times at a high speed and he will easily see what we have to deal with.  I am in my 10th month and things are beginning to settle down for me.  The store issue is my greatest challenge and some days just feeling a bit off.  Just got over ther flu so that doesn't help either.  I finally got over motion sickness a couple of months ago.  I took Zofran and an over the counter drug in the US called Nauzene.  The Nauzene helped me more that the Zofran.  I dealt with Agoraphobia for probably 3 months but, found that each day that I pushed myself things began to improve as well.  There are so many degrees of our symptoms that sometimes it is hard to ensure that we are comparing apples to apples with symptoms.  I see from some of your posts that you were working so I can't see the weakness part.  Anyone that can go to work feeling like I know you have felt is a strong person in my book.  One thing that is used widely in the US to treat ongoing dizziness, vertigo, is Intratympanic Steroid Injection.  Guy I know in Louisiana went to a clinic in the US, Shea Clinic, and Dr. Shea told him that that was the only thing that would get rid of ongoing vertigo.  This process gets the steroid directly to the inner ear.  Of course all that, as with anything else, depends on where the damage is and how bad the damage is.  My Otologist has mentioned it for me but, I m still seeing steady improvement from VRT.

      I know that sometimes anxiety sets my symptoms off and sometimes when I have symptoms it makes it worse.  But, with this condition it is understandable where the anxiety comes from.

      I just completed a round of steroids for a virus after getting over the flu and have felt better the last few days.  All in all I feel 90% - 95% back to normal now.  Still have some bad days though.

      As I said earlier, anyone that can find the strength to deal with this everyday has no sign of weakness having seen it from the inner side myself.  What he should be showing you is positive reassurrance.  That in itself is what it takes for you to be able to deal with the anxiety.  

      Report / Delete Reply
    • Posted

      Hi Terry,thanks for your help,I don t work I  can t at the momment.i do take on board that I have to push myself and I am doing just that now the withdrawl from mirtizapine have gone,that floored me for 16 weeks!! I m petrified to try any more anti depressants after my experience,I do take the odd bit of diazapam if I really need it,but I ve read that can hinder recovery.i have read up about the steroid injection it's something I m going to look into a lot more.Now I m back on my feet I ve started taking my dog out for more walks it helps my confidence,I think that's some of my problem now,I fought this for so long my confidence is very low.i had a chest infection a fee weeks ago and had to take steroids and my balance has been quite a bit better.i know I ve got a lot of hard work ahead of me I just hope I don't get another attack that ruins all my hard work like it did last time.Thanks again and I m so pleased you feeling well x
      Report / Delete Reply
    • Posted

      Hi Terry,I m ok thanks,I have been taking my dog out for little walks,to help my confidence.My husband has calmed down and said sorry,he's always a pain around christmas time,thanks to you all for your support.My ears especially my left ear feels  blocked and feels like a lot of pressure,but if I burp it clears for a few seconds then it comes back.i The doctor said my ear is clear.i m feeling quite sick and just a little woozy and very fed up.How are you feeling? 
      Report / Delete Reply
    • Posted

      I have felt fairly well the past couple of weeks. I have the same issue with my left ear, feeling full and often times I can pop it open. Been worse the last couple of weeks after clearing up 2 or 3 months ago. Been taking steroids a couple of weeks and they seem to help me more than anything. The full feeling is probably fluid on your inner ear versus in the middle ear where the ENT can see it. My experience has been when that feeling dissipates the dizzy feeling gets better also. 
      Report / Delete Reply
    • Posted

      same here with my left ear, which is head injury side.  But then i have had a stinking cold, but even without it is my weak side and does all kinds of popping, sqeaking and strange noisessmile
      Report / Delete Reply
    • Posted

      One question, have you tried reducing your sodium intake to help eliminate fluid on the inner ear? My Otologist highly recommended that to me and I also take a low dose aspirin every day. My sodium goal each day is 2000mg. One poster a couple of months ago indicated that her doctor prescribed Ecospirin for her, which is a slow release aspirin. I tried the low dose in its place to see if it helped any. Often times my left ear feels full but over the months the every day effect of it comes and goes.
      Report / Delete Reply
    • Posted

      I have just gotten over the flu and a sinus infection. Really impacts this stuff. Went to the ENT yesterday with crackling and popping in my left ear and he said that I had some loose hairs sitting on my eardrum. He got that off and today the crackling is gone.
      Report / Delete Reply
    • Posted

      An instrument he called a "gator". Had a vacuum associated with it. Hurt like hell when he touched the eardrum once while doing it. Don't think it would be something other than a doctor could do if someone did have the issue.
      Report / Delete Reply
    • Posted

      It's very strange that all experience similar things but the doctors just look at you like you re an alien when you explain your symptoms,you d think by now they would have come up wit some solutions to help us.i ve had this problem for 6 years now!! I feel better when I ve  had steroids to treat a chest infection,but the doctor does not believe they can help.Heres hoping one day one of us will find the cure to help us all xx
      Report / Delete Reply
    • Posted

      Thanks Anne,he always get in a mood at christmas time don t ask me why 😊 I ve just reàd that your left ear is your weakness,I wonder how many of us have a problem with our left ear? Xxx
      Report / Delete Reply
    • Posted

      I have always be,I even steroids can help but no doctor will,give youme. These days will they??!!!  they saved my Mum,s life (which I am prone to,telling them!) back years ago whe. She had such bad rheumatic fever (I was around 5 or 6), that she could not walk for 6 months, and this 'new' drug from the U.S. Was tried and she recovered! Funny that eh??  I've had the. Myself for Crohn's and Iritis.  Reckon a private Dr would give them. So may one day fork,out to,see one!!!!
      Report / Delete Reply
    • Posted

      Wow I didn t know steroids were that good,I m pleased they saved your mam.i only get them if I have a bad chest which isn t often,because  I have asthma so the docs give me them.if we were rich and went private I bet we d  be treated differently xx
      Report / Delete Reply
    • Posted

      should only be used,Side effects of oral corticosteroids used for longer than three weeks can include:

      weight gain

      acne – a skin condition that affects most people at some point

      mood changes, such as becoming aggressive, irritable and short tempered with people

      rapid mood swings

      thinning skin which can bruise easily

      muscle weakness

      a combination of fatty deposits that develop in the face (moon face), stretch marks across the body and acne – this is known as Cushing’s syndrome

      weakening of the bones (osteoporosis)

      the onset of diabetes, or worsening of existing diabetes

      high blood pressure

      glaucoma – an eye condition where fluid gathers inside the eye

      cataracts – an eye condition where cloudy patches develop at the front of the eye

      delayed wound healing

      reduced growth in children

      increased risk of infection

      The risk of more serious side effects increases with higher dosages or longer courses of corticosteroids. These side effects should improve if you're able to reduce your dosage. 

       

      Report / Delete Reply
    • Posted

      I was on steroids much longer than 3 weeks when I had Crohn's attacks, (or months) but the last time they were in the form of enemas.  also had to be on them With Iritis for 6 months as my eye wouldn,t respond to drops only.  Luckily I haven,t developed any of the side effects you,mention. MOf course you have to be weaned right down to,the tiniest dose when coming off them, which I was. 
      Report / Delete Reply
    • Posted

      Best course of steroids for inner ear is Intratympanic Injection/Intratympanic Profusion.  Goes directly to the problem.  Another option in the US is through a tube inserted in the tympanic membrane and then 1 drop a day into the ear.  Promising results from what I read.  Oral steroids take longer to get the same results resulting in the side effects listed by Anne.  Take a look online at Shea Ear Clinic.
      Report / Delete Reply
    • Posted

      Oh didn t realize there were so many side effects!! I have heard of the steroid injection that Terry has mentioned,I ve watched the video of the procedure,it does say there are good reports about it xx
      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up