Saturday, June 2, 2012

Ongoing battle with depression and Meniere’s


The emotional aspects of Meniere’s disease is something that I have touched upon in several posts over the years, mainly because it is an important issue and one that has been a real problem for me. Stress, anxiety and depression are common and understandable with anyone who has experienced this terrible disorder.  Even today I still have an ongoing battle with depression.

Depression has been a problem for me for many years, way before Meniere’s disease entered my life. Through counseling and medication I thought that I had it under control until a few years ago when I had my first Meniere’s attack.  The fear that came with Meniere’s and the stark reality of how it was going to change my life made the depression much worse. Probably the one thing that it affected me the most was not being able to work. Luckily my social security disability came through which did relieve some of the pressure financially but not completely.

So how am I going to deal with it? I might go back to counseling in the near future, I’m not sure but it is definitely something that I would consider because you have to do whatever you need to get better. 

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40 comments:

  1. Richard in MiamiJune 2, 2012 at 5:41 PM

    Oh, David, I can relate so well. I've been battling depression since the onset of Meniere's and the official diagnosis in October 2011. But I keep thinking of people who have worse afflictions, and even though that may not help all, it does help me put my disease in perspective. I am luck in that my symptoms are not nearly as debilitating as yours, but if I focus on the constant ringing in my ears and the frequent deep humming sound that absolutely envelops my head, causes that fullness and feeling of having cotton stuffed in my ears, and does affect my hearing, I could not just get more depressed, I could go absolutely crazy, I think.

    As for your inablility to work, is it possible to get some ancillary training or be trained in some new line of work that you can do at home despite your Meniere's? It probably would be so uplifting for you if you could feel more productive again, David. What about that?

    Anyway, please do keep that clicheed stiff upper lip and count the blessings that you do have in your life -- and I'm sure there must be some, right? Focus on the affirmative, the positive, not the negative.

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    1. thanks Richard for the kind and instructive words, I really appreciative it.
      Keep in touch
      David

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  2. I am in the same boat, David. Even though I have got my SSD coming in now (theoretically) I wonder what the rest of my life is going to be like. The anxiety and depression haven't really changed, because everything else in my life HAS changed.

    I'm still trying to figure it all out. And for now, I can't afford to go back to therapy.

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    1. I think that the cost of therapy is a big factor about whether I'll go back to it or not.
      David

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    2. Hi Peggy and David,

      I'm rather new here, but I've noticed that you both have already suffered alot due to this disease. I think, even if we are capable of mentally handling the disease ourselves, or at least in some way, it still causes changes around us. And limits us in certain ways.

      I haven't had the chance yet to work, I'm looking for work now, but at the same time I'm afraid that it'll get worse and I will have to stay at home even at this young age, I'm sure there are alot of organisations out there who employ people with a disability, but still.

      I'm also talking to my ex-girlfriend again, we had been together for years, but she got a depression due to childhood problems and it got really bad and she just coudln't handle a relationship anymore. We've been "seperated" for more than a year now and she has been talking a long time about giving it another shot, but i've been keeping her at bay due to this disease. My mind says: "who deserves to be 'stuck' with someone who maybe has to stay at home or can become completely deaf" etc.. I know, not a good way of thinking but..

      Anyways, she says she doesn't care about all that. She's also in her final year i think for graduating to work with people with dissabilities, so in some way she's used to that. She also says that even if the worst case scenario's happen there are always other ways to communicate etc..

      I noticed I just started ranting on about myself there, but my point is that I feel alot better now that I'm honestly talking about my disease to people, I never really saw the point in that untill it got worse. It kinda shut me down socially in some way..

      I really which I could talk to you guys and girls in real life, I think it would be a great day. I've always wanted to visit America (i pressume you live in america). So, when or if i find work or can save up some money, we should have like a BBQ or something :D, I know i'm still a "youngster" but i'm very mature in my mind!

      In the mean time i wish you both the best of luck and hope you can find happyness in every day of your life. And I'm very thankfull for this blog and all your responses!

      Delete
  3. I am a 27 year old suffering with Meniere's; diagnosed in 1998. It takes a huge toll on your life. The unexpected dizzy spells are the biggest reason lining up to depression. Another huge factor is that a large majority of people have not heard of Meniere's, therefore they don't quite understand or sympathize. I've learned to live with the tinnitus, it's crazy because I don't really notice it until I'm in an area where it's dead silent. About 30% hearing loss. My dizzy spells vary from the room spinning, to the room slowing shifting to the left, or the room going quickly from upper tiring to lower left. The worst is that stiff post vertigo attack. Where if you turn your head, the room stiffly and slowly turns (delayed and leaves you wanting to puke). Zofran works wonders minus the strong metallic taste once you wake up. My vertigo attacks are 200% allergen induced. I live in Austin where allergies are high and the weather always lies. I drink tons of tea all year, eat tons of salt, and don't take vitamins. I'm fine until April/May and sometimes June. Butttt what REALLY helps me with my attacks is Advil Congestion Relief. Sometimes I'll also take two additional regular Advils to help with the headache. Each person's case is different, and there are times where the vertigo still pops up. But a large majority of time it works. I am SO happy to come across this blog!

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    1. that is interesting about the advil congestion medication, I don't think that i have ever heard about that before. But if it works, it works.

      Now you may want to cut back a little on the salt even if it doesn't help with the meniere's its not good for your health in general.
      thanks for commenting
      stay in touch
      David

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    2. Yea, salt is terrible for you! I am full German and it just runs through my veins. I guess I was just trying to show that not everybody's case is affected by increased salts/caffeine. I feel like a doofus, there's like 4 of my same posts on here. I thought they didn't go through. Feel free to delete the others! Thanks for the quick response!

      Delete
    3. Angela, you are right that salt and caffeine do not affect everyone the same way when it comes to Meniere's. But it's worth trying to reduce your intake to see if it does help. And as David says, cutting back on salt is a good idea for your health even if you don't have Meniere's! :-)

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  4. I am a 27 year old suffering with Meniere's; diagnosed in 1998. It takes a huge toll on your life. The unexpected dizzy spells are the biggest reason lining up to depression. Another huge factor is that a large majority of people have not heard of Meniere's, therefore they don't quite understand or sympathize. I've learned to live with the tinnitus, it's crazy because I don't really notice it until I'm in an area where it's dead silent. About 30% hearing loss. My dizzy spells vary from the room spinning, to the room slowing shifting to the left, or the room going quickly from upper tiring to lower left. The worst is that stiff post vertigo attack. Where if you turn your head, the room stiffly and slowly turns (delayed and leaves you wanting to puke). Zofran works wonders minus the strong metallic taste once you wake up. My vertigo attacks are 200% allergen induced. I live in Austin where allergies are high and the weather always lies. I drink tons of tea all year, eat tons of salt, and don't take vitamins. I'm fine until April/May and sometimes June. Butttt what REALLY helps me with my attacks is Advil Congestion Relief. Sometimes I'll also take two additional regular Advils to help with the headache. Each person's case is different, and there are times where the vertigo still pops up. But a large majority of time it works. I am SO happy to come across this blog!

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  5. I am so happy to come across this blog, and for it to be so recently updated and kept up with. I have had Meniere's for almost 14 years (27 now), and it's been a struggle at times. I went almost 6 years without a single attack. But, the past 3 years have been the worst; especially in the Spring. I live in Austin and the allergies are the worst, and the weather always lies. We need rain! I can go the whole year without a single attack, until late April/May/early June. The rest of the year I'm eating tons of salt, drinking tons of tea, and not taking vitamins. This illness is completely affected by allergens. Is it an auto immune disorder? I have those in my entire family. Is it caused by ear infections that were poorly treated? I had tons as a young child. Or is it caused by a virus? I had chickenpox as a child, so the virus is in me. I can fall within each category. I finally stopped trying to figure out what causes it, and focus on living with it. I have three different types of dizzy spells: A)where the room is spinning out of control, B)where the room is rapidly moving from upper right eye to lower left eye, and finally C)the room has a delayed movement, where I turn my head and the room SLOWLY follows. After this, comes the stiff dizziness. You turn your head, and it feels like you're moving 3838 lbs. Then comes the confused/out of placed feeling. So hard to describe, and so annoying. What helps me is Advil Congestion. I take one and I'll sometimes take 2 regular Advil with it (to help with headache). It works about 85% of the time. I have learned to live with the tinnitus; I actually only truly notice it when I'm in a very quiet spot. This illness sucks, and I wish it would go away. If anything, just take the vertigo. Thanks for your posts!

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    1. I think it's viral too....I've been at this for a very long time. Mine started with a viral flu type sickness many years ago. Now bilateral.

      Seroquel helps me sleep...low dose it's an antihistamine. I think that helps too.

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  6. Definitely not an easy disease to cope with Dave. I was quite depressed when I first became unwell due to the unrelenting and constant symptoms for over 6 months. I try to find the positive in each and every day though sometimes that is not easy considering the majority of my week involves aural fullness, total deafness in my right ear, nausea, constant background vertigo, and now symptoms appear to be starting in my remaining good ear. Counselling is definitely good to help keep things in perspective, as is a good family doctor and antidepressants if required.

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    1. I totally agree with you on having the right attitude when dealing with any illness but sometimes thinks get a little overwhelming.
      But you still have to try !!
      thanks for commenting
      and stay in touch
      david

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    2. Indeed! I can have days in a row where I feel happy and I'm enjoying life and not thinking about my disease at all. Having fun with friends, laughing, doing things.. But I also have days where I'm constantly worrying about everything, I don't even have to feel sick or anything, I could be doing perfectly fine, but just out of nowhere comes all this fear and .. yeah.. One of my good qualities for which i'm thankfull is that I can put things in perspective alot better than most of the people around me can, maybe it's because I'm still young and haven't had it for a very long time that my mental thoughness is still more intact, i don't know.. I've always been a person, trying to help other people with their problems, now I just also have to help myself..

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  7. Whoops, I thought my Google comment didn't go through, so I posted anonymously. Those were both from me!

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  8. I wanted to share my experience with MD. I am being treated by a wonderful naturopathic doctor that has figured out that my MD is autoimmune in nature. I have suffered from GI problems since I was a teenager (am 43 now); who could have possibly thought that MD and IBS could be related!

    So here is what we know about what is happening in my body. I am highly intolerant to gluten and most foods that are gluten related sensitivities (dairy, yeast etc.). Just hang with me here as I explain some of the neurobiology behind this.

    The cerebellum plays a vital role in vestibular system. (The vestibulocerebellum, or flocculonodular lobe of the cerebellum, receives a substantial amount of its input from the vestibular nerve. This is unique since no other portion of the cerebellum receives direct input from a sensory nerve.http://www.dartmouth.edu/~rswenson/NeuroSci/chapter_8B.html ) GABA is a neurotransmitter that is used by all the cells in the cerebellum. (GABA and the GABAA and GABAB receptors play a pivotal role in the coordination of the central vestibular pathways.) (Hang in there coming to the end!) GAD, another neurotransmitter, is the precursor to GABA. The GAD molecule and the gluten molecule are almost identical in structure. When I eat gluten my body attacks the gluten molecules but in the onslaught it also attacks the GAD molecule, which in turn disrupts GABA production which then interferes with my vestibular function. I then take a supplement of GABA and it will correct the vestibular malfunction.

    As long as I stick to a very strict nutritional regimen, I can keep my vertigo from almost none at all to very, very mild attacks. I am happy to share, if anyone is interested in what supplements I take and what lifestyle changes I have made to manage my MD.

    I do not believe that all MD is caused by food/gluten intolerance, but there is a growing body of evidence to support that it is for some people.

    I truly hope that this is helpful.

    Melissa

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    1. Yes, share your supplements for those of us who are gluten,dairy and egg free and still struggling. Severe IBS too...limits most of my food.

      I even follow the Blood Type diet and have only continued to progress to bilateral disease.

      Were you checked for ALL foods or just gluten and dairy? Was this done by blood work?

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    2. Hi Melissa-
      Thanks for your explanation. I too have found that food intolerances are likely the cause/trigger of my Meniere's symptoms (along with a ridiculously-long list of other health issues that I thought were unrelated but have also cleared up with a significant change in diet). I follow a low-lectin & nightshade-free paleo/primal diet and I'm not sure I have ever felt so good physically. I also don't have the anxiety surges that I used to get when I had eaten something that I was reacting to. Also, to address the emotional aspects of Meniere's - and its impact on my life and my ability to work - I found that doing the Mindfulness-Based Stress Reduction program developed by Jon Kabat-Zinn (available on a series of CDs) was initially very helpful. Listening to podcasts related to developing location-independent work helped me when I had to leave work and was looking at applying for LTD. Thank goodness I didn't ultimately need to apply, but as a benefit I now have a more flexible work-life that can accomodate any symptom fluctuation and leaves me the time to do all of the things I need to do to keep myself going in the right direction healthwise.

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  9. hello melissa
    food intolerences and ibs are an interesting area regarding menieres, could you please expand on the foods you stay away from.
    i am on a gluten/dairy free free diet. i also try to avoid foods with high histamine levels.
    regards
    ali

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  10. At my wits end with MD. I was wondering if anyone ever gets relief from the fullness?
    Its stormy here so the pressure is at its worse & I'm barely recuperated from a bad attack I had last week sure another will occur at any moment but all I can think about right now is my ear feeling like it is going to explode. Its so annoying! I get breaks from the vertigo & tinnitus but the fullness is 24/7 only change is how bad it is.
    If anyone ever gets it to stop please tell me how.

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  11. I got the same thing, altough the fullness seems to be less when there is no vertigo and when the tinnitus is not so loud, but it never really goes away. I also have the feeling it causes distortion in the way my ear receives sound, it doesn't only sound more silent than my good ear but also in another tone or something;

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  12. I forgot to ask, how do you guys and girls live with the fact that you hear very bad or are deaf in one or both ears? Is it like..completely deaf or can you still talk to people, or are you able to understand people using a hearing aid? I seem to have my vertigo under control for a while now so i'm constantly focussing on my hearing loss, and it's driving me crazy.

    I'm thinking about getting another hearing test done, but I already know that the result will be bad and the ENT will probably say that he can't do anything about it.. It's either that or usually when i see my ENT my hearing had recovered almost to normal, but that doesn't seem to be the case now.

    Anyways I'll probably just make an appointment, because my tinnitus has also gone to "pulsating", maybe he can check that out and i suppose it's better to hear that nothing can be done than worrying about the fact if something can be done..

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    1. Hi, Sam. I am almost fully deaf in my left ear, and after a few years I'm coming to take it for granted or take it in stride. I don't think I could say that if it affected both ears this way, but my right ear is pretty good still.

      Do you have trouble mostly in one ear, or in both? It is truly different for everyone, but there are many ways to help compensate for hearing loss. It might not happen to you at all, so don't lose heart yet.

      Some people find relief from hearing aids, and you can try cochlear implants IF you lose hearing in both ears. That's a big "if", though. It might not happen at all.

      If you think your hearing has changed a lot and you are having trouble understanding people, then get your hearing tested again. Otherwise, try not to think about it -- certainly don't worry about it. It won't help, and it will make you feel worse. Besides, the stress could actually make your symptoms worse! Take it as it comes.

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    2. Hi,

      Well, the hearing loss is only in one ear as far as i can tell, I think i am starting to get tinnitus in my good ear too though. I don't know if i have any hearing loss in my good ear, none that i can tell at least, so i suppose the hearing test will have to point that out.

      And my bad ear is getting pretty bad all of a sudden also combined with the pulsating tinnitus. I beginning to get more certain that i have Menière's and not Lermoyez, because my ear isn't recovering anymore. It's just strange that how it got so bad all of a sudden when normally it would just recover, not fully but still pretty good.

      I'm curious about what my ENT is going to say about the pulsating tinnitus though, because I keep reading everywhere that in most cases there is another cause for this to happen and alot of the times this underlying condition can be treated.

      I'm also going to stick to my current ENT for now, because i'll get an appointment there much sooner than if i go to another one.

      I also notice that from time to time i'm browsing the internet looking at organisations for young deaf people. I mean, I'm not deaf (yet?), but I think i just need to know that these boys and girls are still happy, living a good life, having fun with eachother doing things, you know..It makes me feel better, it's some kind of comfort to know that, for when that day maybe comes.

      Most of the time i'm just enjoying life, taking it as it comes like you say, but there just are those kinda days where you can't stop wondering or worrying and you're happy when you can finally go to bed, have a nice sleep and wake up with the sun shining again.

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    3. For what it's worth, Sam, if you lose your hearing or a good portion of it at a very young age, it might be easier for you to adapt and lead a full life than it would be for some of us older folks. ;-)

      It probably makes sense for you to see your ENT about the tinnitus, and while you are at it, you could get your hearing tested to find out exactly where you are. Perhaps that would give you some peace of mind? Or at least a better idea of what's going on.

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    4. Yes, I always get a hearing test before i go in to see the ENT, so he can compare the results. For some "funny" reason my hearing always recovered when i had an appointment, but with all these sudden changes, like going half deaf and getting pulsating tinnitus, I'm curious what he'll have to say.

      I'll probably have to wait a few weeks for an appointment tho' and I'm always scared that they're going to say something like "Yes, if you got here two weeks earlier we could've stopped it" or something like that..

      Yeah, I'll get a better idea, but i'm not sure if it's going to bring me peace of mind hehe, these symptom patterns are just so weird, but i guess that's the disease..

      Kind regards

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  13. Sam and Mrs. Tater,

    Mrs. Tater,
    I take steroids and dyazide to "help" with the fullness. Sometimes during a storm, you just have to wait it out and it gets better.

    Sam,
    I have bilateral disease now and MD for over 17 years. My worst ear is not "deaf" but it is useless as far as word recognition, music etc. A hearing aide did not help me and I don't qualify for an implant and may never. I use an aide for my "good" ear which only has loss of some low tones ....and yes, I can understand as I still have word recognition in that ear. But people still need to speak slower and to my face.

    I now have pulsating tinnitus to in addition to tornado sirens/jets...I have been to many docs. It's barbaric and disabling. I just have to accept and move forward.

    Best of luck in your journey.....

    Does anyone out there take Methotrexate for this?

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  14. Dear Anonymous,

    I've read that with pulsating tinnitus there almost always an underlying condition that can be treated?

    Kind regards

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    1. Hi Sam,

      Yes, if it's not related to Meniere's....so I've been told by 2 neurotologist, from 2 major universities and a radiologist involved in a study of this phenomenon. But this is just my experience. I actually know I have anatomical ear problems (found only in surgery) that can cause me to have pulsating tinnitus in addition to the damage caused to my ears by the Meniere's.

      Don't give up. You don't have diagnosis of Menieres....Correct? Even if you did, I would certainly seek more opinions or even get in a study.

      If you find some good info or some help, please post your experience. I would love to have this go away.

      Delete
    2. Well, I got diagnosed with Lermoyez, because my hearing would always recover, but it isn't recovering anymore now for a while, so I'm pretty sure I have Menière's instead of Lermoyez. I'm going to make an appointment to hear what my ENT has to say.

      I will probably also go see another ENT sometime, but right now it would take months to get an appointment at another ENT so I'm just going to visit my current one.

      The strange thing is that I've never had pulsating tinnitus untill a few weeks ago, it just came out of nowhere, just like my hearing suddenly got bad. I used to have mild tinnitus that got worse when an attack was comming, but then it got all better again. The hearing in my "bad" ear was almost perfect, now i'm like..half deaf..

      So, I'm going to check if this is normal..I know every Menière patient has like a different kind of Menière or at least different symptoms and it'll probably be a guessing game, but I'm going to check what my ENT has to say, if i don't like the answer i'm probably going to get a second opinion.

      Kind regards

      Delete
  15. hello sam
    read these posts, there is a wealth of information about secondary problems, its a process of elimination.
    first you must see a neurologist to make sure its not the brain giving wrong messages.
    from there you should see an neurootologist specialist, but check your diet, neck tension etc. read the posts carefully and you may just find the simplist of solotions.
    you are young sam stop wondering too much in the future, live day to day. i know its hard cause with menieres the future can kinda look bleak. but time will work things out i am sure. also there are many opertions you can have if medicine and lifestyle changes dont work.
    regards
    ali

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    1. Thanks for the advice, I'm already seeing a specialist when it comes to matters of the ear or Menière's. I've already had scans taken at the start, but I might need to get some new ones with this pulsating tinnitus thing.

      I'm watching my food, I'm taking extra vitamins, I exercise, I sleep right. I try to do everything I can, but the symptoms are just so random..Who knows what's working..

      And I appreciate the advice, but it's hard to stop wondering when you're going deaf at the age of 24. And I highly doubt I will ever get an operation, because the succes % right now doesn't seem fairly high. They can't fix your hearing anyway I suppose. They can stop the vertigo, but when your hearing goes, your hearing goes, i guess.

      Oh well, if I don't like what my ENT has to say at our next appointment I'm going to get a second opinion.

      Kind regards

      Delete
    2. Sam,
      Please post what they say about the pulsating tinnitus and any additional tests they want you to do. Thanks.

      Delete
  16. I'm a bit worried now tho', because it seems like more than 50% of my hearing is suddenly gone in my "bad" ear. It always got worse when i was getting an attack but then it would improve again, I haven't had a serious attack for a while now but my hearing has gotten way worse. I got an appointment 30th of juli, but I'm a bit afraid that maybe by then they can't do anything about it anymore. For all i know they can't do anything about it now either.

    It's just so strange..and I'm wondering if there are other people who had this sudden loss of hearing? And what did you do? I mean it's a bit of a shock to me since i thought the hearing would get worse bit by bit but not by this much in such a short time..It's been two months since i've seen my ENT and back then my hearing was almost perfect, now i'm almost deaf..

    I suppose i'll just have to wait till next month, i'm just scared now..

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  17. hello sam
    do you have fullness in your ears?
    go and see an allregy/intolerence specialist.
    dont just expect your ear doctor to give you answers, alot are actually clueless regarding the grey areas. they just want scientific facts.
    there could be things in your diet that inflame your ear area. its not about watching what you eat its about understanding what your body likes and does not like.
    ali

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  18. Most of the time i have some sort of fullness yes, sometimes very mild, sometimes very strong, i'll follow that advice, thank you !

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  19. hello everyone - i live in uk and went almost insane with many or all of the symptoms which everyne here dessribes for 5 years before a diagnosos of meniere's. it was a very biter fight to get this diagnosis and be refferred to the correct ent specialist. luckily i had begun seeing a bodypsychotherapist for fibromalgia and it was throgh this that i had the self belief and knowledge of my body to know thta something was defntely up in my ears. my therapisst was the only spport i had and without her i just don;t know what i wold have done.
    knowng what it is has also helped enormously and i cut out salt cafeine (mostly) and arbohydrates.
    for me it seemed t affet every system in mybody. tinnitus, ear fullness so mluch flid gathering around my fae that it impated on my teeth and they would crak in high wnds or spermarket air ocn and eventually fall out or m dentist would pull out remakabley healthy teeth. betahistiine and BFZ (diurtetic helps enormously but barometric pressure at exptreme is a nightmare. low blanket cloud with wind and high clear pressure trigger attacks and also i cannot wear glassess to san or read as attack is immediate and i have to lie down before i fall down and trow up.
    would be really interested to hear if anyone else experienes these things.
    i emain positve for the most part and ontine with thereapy.
    kind regards,
    liz

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  20. I was wondering, as of recently my vertigo attacks seem to have become less or at least that's what I think, but instead of that I now almost always have a constant feeling of being imbalanced. Not in a way that I could fall down any second or anything, but sometimes I just grab hold of something or yeah, hard to describe. Can't really call it a mild vertigo, because nothing is spinning, I just don't feel firm on my feet anymore.

    I was wondering if anyone has had experience with this? What causes it? Does it mean my balance in one ear got damaged badly by the Menière's or that the balance is just completely gone or anything?

    Kind regards

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  21. I wanted to add a comment to this post as I think my experience has been different from most others. The hardest period of the illness (so far) for me was during 2009; it was hard in the sense that that was when the illness was most controlling - frequent small attacks, sensitivity to movement and so on. I felt my life was very limited, when due to the shedding of other responsibilities I should have been enjoying myself.

    However, mentally I felt in great shape, more 'together' and positive than usual. This was surprising to me and I even remember mentioning it to my best friend. I have heard about people who have had serious accidents or life-threatening illnesses feeling elated and I wonder if this was the same thing that was happening to me: something to do with feeling you are surviving/managing, maybe the reward of making a small step in recovery, maybe simply having very clear priorities.

    I should also mention that in general I hold the view that long-term my system is adapting to having Meniere's (or something like it). Yes, it's cyclical and there can be big backward steps, but overall it controls me less than at the beginning. I'm sure this viewpoint helps me deal with things when they do happen, rather than seeing everything as part of an inevitable decline.

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