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Labyrinthitis - "brain shifts"??

Posted , 76 users are following.

~Dragon~
~Dragon~

Okay this is week 5, my first ever experience of vestibular problems. It started in horrendous fashion - I was swimming om my back and suddenly thought I was having a stroke. The most frightening experience of my life, and quite frankly I'm still traumatised by it. Still haven't managed to summon up the courage to go swimming! After an hour or so of assistance at the poolside, my OH picked me up and I went off home to bed. It seemed to clear within a couple of hours so I went out shopping!

Next day I woke in a right state. It felt like I'd drunk 3 bottles of wine and had the hangover to go with it all at the same time! Doc gave me Stemetil and told me was either BPPV or lab. After a few days of awfulness, I finally realised I felt better if I moved around more - I suppose the start of the compensation process. I didn't feel I had hearing loss but did have the fullness feeling in both ears. I also felt more comfortable sleeping on my right side, and in fact had a further spinning episode just after I had laid down on my left side, so avoided doing so.

I then wondered if it was BPPV rather than lab and pestered my doc to do the Epley. They didn't do it, had to be referred to physio, six week wait, went private!! Wonderful vestibular physio performed the Dix-Halpike and confirmed I didn't have BPPV and didn't need the Epley. Why on earth my doc couldn't do that I don't know! She gave me lots of advice about the condition and showed me some exercises to aid compensation. Since then I'd felt a lot better, apart from having what I describe as brain or head shifts, and lots of pressure in my head especially when I'm tired.

Sadly, since a few days ago, I appear to now be getting worse again. Have actually had some dizzy spells laying down in bed - they had gone completely and I was feeling practically 100%. Is this what I am to expect now? Does anyone else have the strange head sensations that I described? Could I have Vestibular Neuritis rather than Labyrinthitis? When do I go back to my doc - I already feel that she dreads seeing me - have so much else going wrong at the moment! Could the stress I'm suffering because of my health problems be hampering my recovery? So many questions!! Would love to hear from anyone who's story is similar to mine biggrin. MTIA!

7 likes, 134 replies

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  • kelly03138
    kelly03138 ~Dragon~

    Posted

    Hi, i had the same exact thing ive read most of the comments here. Mine started a year ago around thanksgiving i felt really weak and tired, i was actually pregnant ay the time and didnt know it. But it started out with ne being weak then i would get dizzy and lightheaded felt like the world was spinning but at the sane time felt like i was gonna pass out.. Ive been dizzy every single day all day everyday 24 hours a day for a year and a few months now ive been to ent doctors and everything ive had blood test, mris, ct scans everything. Im still waiting on the results for the ct scan. I have days where km slightly dizzy and i habe days where i just wanna curl uo in a ball and cry cause its so bad i have anxiety really bad so if i get dozzy and feel like im spinning thats it for ne my heart will start pounding anf there goes a full blown anxiety attack i hate it so much cause i have 4/kids one being 7 months old my oldest being 6 and it kills me cause i cant even play with my kids the way i want to because im so dizzy and tired all the time all i want to do is just stay in the bed and not doanything.i mean i still have to force myself to get up and do stuff thats because of my kids if i didnt have kids then i would probably stay in the bed 24/7.. I just want this to go away i was fine and normal a year agi idk what happened i just want my life back i want to spend more time with my kids and play with ghem like i used to and i cant do that bc im so dizzy my OH always tells me everything is gonna be okay and ties to help me through it but it doesnt help. I just want relief from the dizziness and anxiety
    • crest
      crest kelly03138

      Posted

      Hi Kelly, sorry to hear your story, im dizzy 24/7 too and it started suddenly. all my bloods and mri scan etc all clear. Are you doing any VRT exercises at all? have you been diagnosed all with anything. My local was rubbish and told me it would jsut go away.... im nearly a year now. so i got my doc to refer me to UCL in london. its free under NHS, they specialise in inner ear problems there, they spend 4 hours with you and diagnose you the same day!! mine was diagnosed with MAV, (migraine associated vertigo) i was very surprised at this as i have never had a migraine and dont get full vertigo either im jsut dizzy lightheaaded 24/7, heavy head, tinnitus, mild headache/heavy head. Anyway..... ive jsut started a completely different set of VRT exercises they told me to do and have started one of 3 drugs to try. im on propanolol now 3 days. I cannot stress enough how imoprtant it is you get a sound or even a rough diagnosis so you can go through the options of healing one by one. the consultant in london wasnt 100% sure of my MAV which is why im doign the pills AND the VRT. apparently the "silent" headache i may be having is stopping my brain compensating for the diziness and so when the headache is gone apparently my brain should "reset" to how it was before. im now hopeful as for month i suffered absolutely terrible anxiety. i managed to get that under control myself after a stint on citalopram which made everything worse. i lasted 6 weeks on it with hardly any sleep. so i decided the anxiety was something i jsut didnt need on top of the dizziness. and thankfully i got over it and now jsut deal with the head monster that i have. good luck and ask anything you like. always here. 
  • helen725
    helen725 ~Dragon~

    Posted

    Hello Everyone,

    It's been so long since I've posted and I thought I'd give an update as to how I'm feeling.

    I had been feeling pretty good up until a month ago. I did have neck pain and occasiona dizziness but it wasn't too bad.

    On March 7 I had a really bad flu with a fever (38.7) and a bad wheezing cough that wouldn't go away. I had really thick mucous that was so hard to cough up that my ribs hurt. And then a couple of weeks ago a got a UTI.

    About a week ago I got really bad sinus congestion that hurt so much that I was literally crying. And then last Friday I felt really dizzy and I thought that I was going to faint. My heart started racing and then I got so scared. I had a panic attack which I have not  had for quite some time. I also found it very hard to breathe. After about an hour I felt a little better but I have been getting good panic attacks at least once a day since last Friday. Could it be because my sinus congesting triggered my Labrynthitus?

    I've been taking Gravol which had been helping with my dizziness. I felt better today than I did the other day but I find that I feel more dizzy when I get up abruptly. I also have pressure around my ears.

     

  • dragon1004
    dragon1004 ~Dragon~

    Posted

    Hi all, I am the OP under another account...can't access my original due to some update issue. Anyway, I'm so glad that I started this post and we've all been able to help each other. I'm now over a year since my second episode, and +4 from this original! I don't really have too many symptoms now thankfully 😁

    I do now suffer from something else with similar symptoms and I'm wondering if it might be connected and if any of you can identify?? After years of increasing pain and stiffness I have been diagnosed with Fibromyalgia! Anyone else?? Is it since the lab?? Would be interested to share notes! 😁

  • stephx
    stephx ~Dragon~

    Posted

    I know it's old I'm not too sure what even it is your talking about but since giving birth 5 weeks ago and week after so 4 weeks ago I thought u was having a stroke my arm went numb ect I kept getting odd spinning spells where I felt I was drunk like when you drink too much and sit spinning this then or egress education to constantly feeling this way 4 weeks now I can barely stand ! I realised the more I move about the better it gets but a soon as I relax again it's there and everytime I get up I spin if I get a shower I have to quickly get out I went to doctors who said I have anemia but I've been on the iron for three weeks and no improvement I went to doctors about headaches and told him I want a ct scan he said yes but I may have to wait 6 months 😣 I'm a mum I have three beautiful children one that is 5 weeks old and I feel like I can't give the attention they need as I constantly feel drunk/ hungover at the same time I do get severe head pressure too asif my ears and head is full
  • hipchic12
    hipchic12 ~Dragon~

    Posted

    Hi Dragon,

    Just wondering if you are still suffering from these "brain shifts?"

  • Jaydensdaddy13
    Jaydensdaddy13 ~Dragon~

    Posted

    How are you doing today? your symptoms? If any would really like to know how long they lasted? As I have just recently been diagnosed with labyrinthis. I'm scared to death due to the UNKNOWN. please.. any advice will be greatly appreciated.

  • diannalynn
    diannalynn ~Dragon~

    Posted

    I have been dx with all if them at one point or another which I think is weird. I have been fighting this off for years and it can be terrible!! Supposedly if physio can't fix it then it's viral labyrinthitis. Did you feel dizzy at all when he wipped your around or did your eyes move around?

    If you felt dizzy during procedure then you prob do have bpp but after procedure you can undo the treatment if you bend over ect. You have to sleep sitting up for so many days. The reason why your Dr didn't do it - is prob because he isn't trained and can cause you problems. Looks easy and sounds easy but I have found only certain Dr's are good at it. Good luck! And try prescription SERC

  • audrey9497
    audrey9497 ~Dragon~

    Posted

    Hello,

    I am 19 years old and have been suffering from this for a year and a half. I have never met, or even read on the internet anyone experiencing what I am experiencing until now. The blurred vision, dizziness followed by nausea, ringing in the ears, and a heavy feeling in my ears and head. I thought I had cancer this whole time. I have been to the doctor so many times and they say I am fine or they don't know what is wrong. After reading more about this, I am positive this is what I have because it all matches up too perfectly to be anything else. This has taken over me. It is hard to be happy day to day living this way and I am just waiting for the day this gets better. I just gave birth to my first little baby boy and it's killing me not feeling 100% all the time because I want to be able to feel good and be at my best for him. This totally sucks, I am just so happy I have gotten to see others stories and see that I'm not crazy and I'm not the only one out there dealing with those. So thank you all so much for helping me even if it was just a little bit. It all means so much

    • maggie34
      maggie34 audrey9497

      Posted

      Hello Audrey

      ?I first had this nearly 4 years ago and they sent me to a consultant after 6 months. It does make you feel very ill. When they eventually took it seriously, they gave me MRI scans, cameras up my nose etc. Mine turned out to be a bacterial infection, don't worry that is the more unusual one. It is usually a virus or needs investigation anyway. I was sent to a balance nurse and given a set of exercises which i followed pretty seriously. I still do them now perhaps 2 or 3 times a week. No you are definitely not crazy!!!!  And I think you need more help from your GP. It is difficult enough with a new baby although wonderful too and please make a fuss. I play squash and go skiing so you can see how improved I am but I did work at it e.g. I practised on my own on the squash court and picking up balls. Sounds silly now.and Anyway, take care and know you are not the only one

    • Angel_V
      Angel_V audrey9497

      Posted

      Hello, I have BPPV and have had it since July 18th. Been to the ER, GP, Urgent Care and ENT. I originally had a sinus infection that wouldn't go away. I was on antibiotics,steroids, mucinex, flonase and sudafed. Now i'm suffering from anxiety because I got myself so upset over the BPPV. I just started taking celexa and i'm seeing a psychotherapist who seems to think the BPPV and anxiety go hand in hand. Try to relax and it should subside on its own.

    • diannalynn
      diannalynn Angel_V

      Posted

      I don't and never had anxiety issues so I disagree. I think for somebody to tell you its related to anxiety and to relax and your labyrinthitis will subside is crazy. I can understand why some people get anxious after they get it but I don't believe it's causing it. Time for a 2nd opinion.

  • carlosbenson
    carlosbenson ~Dragon~

    Posted

    Hi Dragon

    My symptoms are very similar to yours. I had a episode of vertigo while driving. I thought I was dying. I went to the ER and the Dr said it sounds like vertigo. Went to my family Dr. which was pointless! She prescribed Dramamine which made my heart race at the slightest sound. Worst stuff ever! Finally I went to a ENT Dr and he prescribed me antibiotic, steroid,and viral medication. The first day on the meds I felt terrible pain on the left as side of my head. Riding in a car made me dizzy. Also he sent me to therapy for the eply maneuver. Its 3 1/2 weeks later. AftervI finished the meds I felt about 70%. I still fill fullness in my ear and sometimes it fells like something crawling in my ear. I'm do fell better after leaving therapy some days. At night I can't sleep good because If I position my head a certain way I'll have a crazy feeling in my head. Went back to ENT Dr Friday he said there's nothing else he can do so he referred me to a specialist in Baltimore. This is very frustrating. I do think having these issues causes anxiety so I try to find relaxing activities. Has anyone else found any answers?????

    Frustrated

    Carlos

  • dexterswtsu
    dexterswtsu ~Dragon~

    Posted

    I was really getting scared but after reading some of the problems here I'm doing pretty good, I started out very bad spinning and dizzy, couldn;t get up without holding the wall at night to go use the restroom, but after a week the spinning and balance stopped but I still get dizzy if I tilt my head back to put drops in my eyes and shen I laid in the I get the dizzy flipping sensation for about 3 seconds then it goes away. When I get up out the bed I have to sit on the edge to get my self together, I;m now in week 3.

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