Sunday, January 2, 2011

Headaches leading to Meniere’s attacks

For the past few weeks I have some intense headaches, so bad in fact that I went to the doctor. I told him that I was under a lot of stress lately and wondered if that was the cause. My blood pressure was okay so I knew it wasn't that I had written a post about headaches caused by blood pressure before. I also knew it wasn’t a sinus headache because of the location of the pain. He wasn't really sure what it was but I believe its stress. The doctor gave me a muscle relaxant to see if that would help. I have taken it for about a week but it hasn't done much good. The thing that is bothering me is that my attacks have been worse, leading me to believe that the headaches are having an adverse effect on my Meniere’s.


In the past I have written about the connection of migraines and Meniere’s disease. Migraines are more than just bad headaches and I don't believe that I have a migraine, right now. The headache I have feels like pressure is pushing down on my head rather than the throbbing pain of a migraine.

Granted it could be just all the stress that I'm under right now. I just don't know. I'll give it another week and see if the headaches go away before I go back to the doctor.

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Thanks

75 comments:

  1. Hi David~
    I have also been having major headaches for the last month or so.
    They graduated to what the Dr. says are "vertiginous migraines",caused by the Meniere's.
    They treated with migraine meds, and it helped, but only the headaches that were on the bad ear side. The other headaches I experience are full head, with some sharp stabby feelings, and electric shock-like feelings. Do you ever get those?
    I met with Dr. Duckert at UW Med Center, and due to the worsening Meniere's not responding to diet or med's after 2 1/2 years, I've decided to have the Endolymphatic Sac Decompression surgery done.
    If anyone has had it, and can let me know what the recovery is like, I'd appreciate it!
    I just can't take much more Meniere's.
    Trying to keep my chin and my hopes up despite it though! You do the same, and I hope this is the year for all of us to get some help with Meniere's! Happy New Year~
    Lauri

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  2. I remember I went through a phase of feeling a lot of pressure in the top of my head, especially when I was out doing things, even just going to the shops. It tended to be better when I could relax at home. I wouldn't say it was headaches as such, and don't think I was having attacks at that time, but we're all different.

    It might just be another one of the changing symptoms of the disease. I've learned that different symptoms don't necessarily mean you're getting worse, they can mean you're getting better. I think it's also possible to not notice when symptoms go away so it's not just a case of more things going wrong!

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  3. I am a 36 year old woman and I was diagnosed with Meniere's in 1995...It has been off and on and it again was diagnosed to me in 2005 by a totally different doctor. (I was in denial I suppose and it was off and on so I had hoped the first diagnoses was incorrect)

    I have turned into a person who can barely ride in a car because of motion sickness, yet I can really only drive during the day because my depth perception is so off....I have 20/20 vision....but the lights and motion make me feel so out of sorts. I am constantly messing with the windows so the pressure will help whatever feeling I'm having at the time! It makes me anxious and then my head hurts, my heart is racing by the time I get home and I'm exhausted like I have been in a near accident!

    I avoid driving at night, but found myself stuck doing it last night coming home from my family holiday get-together. 1hr drive on country roads....then highway. You think the highway will feel better....but its worse with the constant speed and lighting and other cars headlights.

    Anyone experience this?

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  4. Vascular Loop

    Hi David, Im not sure if you will be able to view this post (not quite got the hang of it) but I have found some interesting information thats not been covered on your blog yet. Ok basically I've had the full blown menieres symptoms (unilateral left ear) for just over a year, had various tests done, but something has been bugging me since I last saw an ENT consultant. On my last visit he told me I had an abnormal vessel pressing on my inner ear (which they had failed to tell me before!) but he wouldn't operate as its too close to the brain, and it probably wouldn't cause my symptoms anyway. However, I've done a little research, and found that its something called a vascular Loop which compresses/damages the VIII cranial nerve. I also found some studies, which are quite old (during 1990's) where menieres patients had this Loop and underwent micro-vascular-decompression and vestibular neurectomy, after-which they were vertigo free, tinnitus significantly reduced and in some even hearing improved. I don't know if anybody else knows anything about this, or has information to share on the issue?

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  5. David, I've also noticed more headaches lately, particularly since the laby. I wonder if it's connected in my case to the inflammation the doctor noticed a few weeks ago? I took prednisone for a few days, then went on a steady diet of vallium to suppress my whole system and allow for a "re-set," so to speak, but I can't tell yet if it's helping at all. I'm not getting full-blown vertigo or nausea at present, but will that still be the case when I go off the vallium???

    I remember when I spoke to Dr. Della Santina he mentioned work he has done on migraine-associated vertigo, and I am going to reach out to his assistant for some information he mentioned back then. Perhaps it would be helpful... I am starting to wonder about this myself. Yet I don't have the classic migraine symptoms... just headaches. Sometimes they are pretty bad, but I never have the "aura" or photo-sensitivity. So I'm confused.

    To the woman who mentioned driving, I agree totally. The motion of other cars and the appearance of movement in the scenery really sets me off. I don't drive long distances any more, and I never drive on highways. Riding on highways can be bad, but often I simply close my eyes to get rid of the visual stimuli.

    And to Lauri, who said she can't take much more of this disease, I can only say... I'm right there with you.

    I have a question: Is anyone else suffering from nearly paralyzing depression and fear? I am so confused. I feel like I don't even know who I am any more. Nothing I thought I knew about myself is the same now. And it's getting into every aspect of my life. How the heck do you cope with the emotional wreckage this damned disease creates?

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  6. Hi Lauri,
    That is interesting about the vertiginous migraines although I don’t think that my headaches are migraines but then again I am not sure.
    Good luck on the surgery, hopefully it will help with the meniere’s attacks and I hope that this year is good for all of us.
    good luck again and let us know how the surgery went.
    David




    Jeff,
    Good point! I agree that changing symptoms doesn’t always mean that you are getting worse. Atlhough I will certainly be happy when the headaches are gone
    Thanks
    David



    Hi,
    Problems with driving from what I understand is different from person to person with meniere’s. Be very careful and don’t push yourself to drive this will only cause stress and make you feel worse.
    Thanks for writing and keep in touch
    David



    Hi Becky,
    I don’t think that I have heard of the ‘vascular loop’ before. It sounds interesting I will have to do some research on it.
    Thanks for information and comment
    stay in touch
    David

    Hi Peggy,
    Depression is a big problem with meniere’s disease. It can turn you into an emotional wreck. If it gets too bad then counseling might be an option.
    Continued good luck with recovering from your surgery Hang in there.
    David

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  7. Hi David~
    I Hope your headaches are easing.
    I'd like to send a shout out to PEGGY~
    Peggy, I too have been having frantic panic type attacks lately; sometimes I feel that if I don't hold on tight to my sanity, that it could slip away. I try to do slow focused breathing through it.
    I don't know who I am anymore either, ( but I miss me) because the person I was and the Meniere's can't function as one and do the things that used to be my daily routine. My life.
    For bad Meniere's sufferers new reality is having to worry daily about whether we think we can safely get from one errand to the other, or even the back of a store to the front and out the door. Can I hold my child safely?
    Am I able to drive today?
    Having to stop a job we loved so now there is a constant overriding worry of how to pay bills..
    Not able to go out with friends because the sound in the restaurant is very loud and distorted and tends to set off a visual and vertigo attack. Bumping into things, droppping things, falling, and dear Lord..the vertigo and tinnitus! (it's so odd that I'm losing my hearing, and yet crave just one hour of silence!)
    For Meniere's people, it serves to reason that anxiety is impossible to avoid.
    But...and this I feel very strongly about...I don't have an "anxiety disorder or mental problem"...I have Meniere's. It's a disease that brings with it great anxiety.
    That's it. Not for the faint of heart.
    This is my new "norm".
    I had to accept and deal with it, then fight back, and also allow myself the occassional serious crying, poor pitiful pearl breakdown,(of course I hide in the bathroom for those) in order to be strong enough to come out the other side and deal with it all over again, praying for good days.
    I relate, Peggy, to the emotions you are having..me too!
    This is a darn scary disease!
    I just keep pushing hope back up to the surface that the next thing tried will work.
    I also feel a truly new appreciation for life and Family through this all, that I took for granted before.
    I am glad I found David's wonderful site...There does not seem to be a Meniere's support group where I live.
    We need and deserve support, just like any other disease.
    Thanks David!
    Hang in there everyone~
    Lauri

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  8. Hi there, I can also relate to what everyone is saying. Im 23 and had this horrible disease for almost 2 years, although Ive had constant symptoms since april 2009. I feel like nobody understands what its like and that my life is over before its even started. I found myself just sobbing this morning, thinking how did I get here, and it doesn't seem 2 minutes ago I was totally fine, and never even heard of menieres. My ENT said it will burn out, but it might take 20 years! So thats just great. I know a few people who also have it, and they seem totally ok now, but they've had it for much longer than me, so maybe it gets better as time goes on. I study pharmacy at university and Im not sure if I will be able to even finish my degree, at times I just want to quit everything. I guess we have to hold on for good times and hope it gets better and they start to find better treatments. I just keep telling myself that there are worse conditions out there.

    Anyway, David heres some links to the vascular Loop (I can't pull up the full article, just the abstract) :

    http://www.ncbi.nlm.nih.gov/pubmed/6660744
    Vascular loop as a cause of vertigo.

    http://www.britannica.com/bps/additionalcontent/18/28095587/VASCULAR-LOOP-AS-A-CAUSE-OF-VERTIGO

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1656475/
    Vestibular Neurectomy and Microvascular Decompression of the Cochlear Nerve in Meniere's Disease

    The last one is very interesting, all patients had control of vertigo!
    I think everybody with menieres should ask whether they have a vascular loop on an MRI and I know there is a surgery for this! Even my useless ENT said it would help the tinnitus! Im definitely going to push for this next time, and Im also thinking about going over to washington eventually and paying privately for treatment! Here in the UK the ENTs (I have seen anyway) are utter crap, and don't have a clue what they're talking about! I definitely think America is the way forward!

    Becky

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  9. Becky,

    See if you can get referred to Mr Burton at Oxford John Radcliffe Hospital, your GP should be able to do it even if you are part of a different NHS trust. I had some consultations with him last year and he definitely knows what he is talking about.

    (Where do you live, maybe we could start our own UK support group?!)

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  10. Thanks everybody for the comments
    David

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  11. Hi Jeff,

    Im from the West Midlands (Stoke-On-Trent). I will book an appointment with my GP and ask for a referral - thankyou. I don't know what to do anymore. I think thats also a good idea, setting up a UK group!

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  12. Becky,

    I'm in London but I do enjoy visiting Birmingham occasionally!

    If you click through from my name to my Blogger profile you'll see a link for my email address (don't want to quote it directly because of spam bots etc.!). Drop me a line and I'll tell you more about the process I went through with Mr Burton.

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  13. Hi David~
    I recently heard some people with Meniere's have had positive results taking an anti-viral medication. (acyclovir)
    Have you heard anything about a correlation between a herpes virus and Meniere's Disease?
    Thanks!
    Lauri

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  14. Hi Jeff,

    I can't access your e-mail address for some reason, but mine is: beckylouise.barker@googlemail.com If you could tell me about the process it would be greatly appreciated.

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  15. Lauri,

    L-lysine also acts as a anti-viral. There is a study which shows patients who took 3 tablets a day (of 100mg each) their viral herpes infection responded well. You can buy this from most health food stores. I take 1 tablet a day (1000mg) and my symptoms are much better than last summer. I get short vertigo now every couple of weeks, as opposed to almost daily. I think it takes a few months to get in your system, but its worth a shot.

    Becky

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  16. Becky~
    Thanks for the info!!
    I began taking the 1000mg L-Lysine 3 days ago.
    Figured I just wouldn't mess around and went for the higher dose.
    I have already noticed a slight difference in the "stuffed full of cotton" feeling in my head.
    Hopeful sign!
    How long have you been taking it?
    I'm not sure about side effects...wondering if you can only take it for so long, and then have to back off for awhile?
    Thank you!
    Lauri

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  17. Lauri,

    As far as Im aware you can take it long term, as its a supplement. Ive been taking it for about 4 months now and Ive definitely seen an improvement, wether its the menieres burning out or not, Im not sure (Ive lost most of my hearing on left side). My friend also started taking it, as she suffers from cold sores (also herpes virus) and she's had fewer problems too! The only other thing I was told was to take it on an empty stomach, so it binds to the virus. Next Im going to try Lipoflavaniods, as Ive heard these can be very successful in menieres.

    Becky

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  18. Becky!
    I had alot more dizziness today, and it would feel like I was going into vertigo..but then it would back off. Did you experience that?
    I also just heard about the Lemon Bioflavanoids, and do plan to try them.
    The headaches/migraines lately are killer, so I'm hoping the Lysine and Flavanoids will help there too.
    Good Luck!
    Lauri

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  19. Lauri,

    I definitely do experience that, feeling like Im about to spin, but it doesn't. I used to get it more than I do now, and I've found so far that my attacks are much shorter, and less frequent. I believe that with menieres symptoms they get a lot worse to start with, then things start to improve after while. I know it is extremely difficult, but try to stay positive. Ive got to a point where I do nothing but think about the menieres and I look out for symptoms. My main problem now is the anxiety its created, which I need to try and get out of. Hopefully this will also get better in time. Hope things improve soon for you.
    Becky

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  20. Interesting stuff about L-Lysine... we have that in the house, and I will give it a try. I hope it helps, because I've been feeling more inflammation in the affected ear recently.

    @Lauri - Thank you for saying all that. Meniere's really plays games with your mind. I find I doubt myself all the time, even when someone or something else is to blame for whatever is going wrong. You second-guess everything you do. Dreadful, in every sense of the of the word.

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  21. Hello I'm 41, and I have been told I have a vascular loop. I get the vertigo systems and terrible headaches. Sometimes I feel like I'm going crazy, my mind thinks what it wants to. I drive a school bus so its really hard for me to do my job with this condition. I've never been told I have meniers but after reading your blog I believe that's what I have.

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  22. Hi,
    I would definitely have a doctor check it out.
    thanks for the comment and stay in touch
    David

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  23. Driver65202, Meniere's is a possibility, but a vascular loop can cause many of the same symptoms. Here's a link to what Dr. Timothy Hain has to say about it:

    http://www.dizziness-and-balance.com/disorders/unilat/microvascular.htm

    Are you being treated for it? I assume you saw an ear/nose/throat specialist, since you got a diagnosis of vascular loop, which is not something a general practitioner would tell you.

    If I were you, I would either go back to the doctor who gave you that diagnosis and ask about treatment options, or see another ENT specialist for a second opinion. But as a driver of a school bus, I think you should definitely explore this problem more and see if you can get some help with the symptoms.

    Good luck!

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  24. Yes I have seen an Ent and he couldn't figure out why I had vertigo for seven months, so he sent me for an MRI. I had the MRI done and was told by my ent nothing was wrong I just had migranes, so I went back to my pcp who referred me to a neurologist who also said migranes but I insisted it was more. So finally he looked at my MRI and said I had a loop, but it was no big deal lots of people have them and don't even know. He put me on gabapentin and ibp but it still doesn't help. I feel like I will never be normal again.

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  25. I know the feeling (about never being normal again). Are there other ENTs you could visit? When I was diagnosed with Meniere's, they did an MRI to rule out tumors as a possible cause, too. Nothing there, fortunately.

    There is such a thing as migraine-related vertigo. Dr. Charlie della Santina has done work in this area. In fact, I was in touch with him about getting some information on this sent to me. I'll reach out to his office again and get it sent out, and maybe I can post some of the information here.

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  26. Man, I can relate to so much of what I've heard here. One thing that's jumping out at me is that a few of you have said that Meniere's could get better--that is something I haven't really heard yet. The ENT who diagnosed me basically said it's progressive and incurable. He also suggested I see a neuro-otologist??? not sure if i even wrote that correctly, sorry. Anyway, I never went b/c I have no health insurance and pay out of pocket for everything. I figured why bother, there's nothing they can do. But now my symptoms are getting worse, including those heavy pressure headaches David mentioned in the post. The weird thing is that rather than having the severe vertigo, now I'm just having mild vertigo almost all day and always have pain and/or pressure in my head. Sometimes the pain in my head is so bad it wakes me up out of a sound sleep. I used to get migraines years ago but it's not like that. The pain seems to travel down my neck and I often get the sensation that my throat is closing up. WTH?? It's almost comical. This disease is so crazy. Also, wanted to say to the gals who mentioned depression and anxiety, that I can totally relate to that as well. It's not fun having to give up activities that were once part of my daily routine and makes me feel older than my age (45). I think what this disease needs is a celebrity to come down with it so it will get the recognition and $$ for research needed to really come up with a cure. It's great to hear from others who understand though, so thanks :).

    Susan

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  27. SUSAN~
    You are not alone with the pain in the head and down the neck, and the weird feeling in your throat.
    I get that too. I told the Dr., but it was just dismissed as something other than Menieres. That's BS though, because it began only when the Menieres did, so I know it's from Menieres.
    The first ENT I saw told me that it would soon "burn out". He was wrong.
    It never has..just kept getting worse.
    Maybe in 15-20 years it might burn out, which means 15-20 years of intollerable vertigo?! Worthless information then. We need help now.
    Hopefully we can all find something that helps us get through it.

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    Replies
    1. I also have that feeling in my throat. Just had a cat scan done. They called and said I had to see the doctor for my results and treatment. I have had Meniere's for a very long time! In my 20' I would have the spinning and ear infections. 6 years ago it all went bad on a plane ride to Las Vagas! I was just told that I have inverted Migraine's. Do any of you see thing at a tilt, floors not level, car flipping on there sides ect. I think the ENT can't help and they wish we would quit coming for office visit's. They give us all the drugs that keeps us asleep and out here office!

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  28. hello
    my sister recently bought me this cushion called bed of nails "green sun pillow" from
    http://www.bedofnails.org/
    it is actually a cheap way of getting a massage around the neck and head area, i use it twice a week for 20 minutes. been using it for a while, i would reccomend it to realease some tension. (helps with migraines and headaches, hence helping with menieres)
    regards
    ali

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  29. Ali~
    After reading your post, I had to check out the pillow.
    Doesn't it hurt??

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  30. hello lauri
    yes it does hurt, no pain no gain:). it really gets to the pressure points, and you get used to it. so after a while no pain.
    regards
    ali

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  31. I found it unsettling that the site warns you not to use the pillow if you have hemophilia or are taking anti-coagulants. I assume that means the plastic "nails" can actually pierce the skin?

    But from a holistic point of view, the pillow is interesting. I wonder if it would still work if you put a towel between it and your skin?

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  32. hello peggy
    all things is life have scary disclaimers, and you can put a t-shirt between you and the pillow.
    regards
    ali

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  33. Hi all,
    I was told by my GP I have Meniere's,am thankful though that my symptoms aren't as severe as above. I'm wondering if anyone has experienced sound distortion when wearing earphones? (I can't stand using earphones at all but it helps with the tinnitus)However the music sounds very discordant through the earphones, as if it's constantly changing key. Sounds normal without earphones. I've only just admitted to myself that it's me and not the machine.

    Hoping that you all find relief from your symptoms
    Take care
    Fynn

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  34. Hi Flynn~
    I have the distorted hearing that you describe, but I don't need to have anything covering ny ear to hear it.
    I find that I get the distortion the most if I am near loud noise, or many people talking.
    ESPECIALLY restaurants with people talking and dishes clattering. It's terrible. Just a cacophony of sound.

    You take care too!
    Lauri

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  35. Fynn, I get that awful distortion in the ear that is almost dead. The other one is fine. I've been considering getting a really good earplug for the one that's the problem, and when I use a headset, I use only one side. Which means I can't use a headset that does stereo sound. Basically, my hearing has gone "mono". Is yours in both your ears?

    Lauri, restaurants have become a new kind of hell for me. I've ruled out many eateries purely on the basis of how much ambient noise there is, and I've turned into a "little old lady" when it comes to dining out, because I will only go for a late lunch or early dinner. Crowds are the worst thing I face with Meniere's, because of all that NOISE.

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  36. Thanks Peggy and Lauri for your replies. Crowded noisy places are very difficult; I now avoid the staffroom at work and prefer to miss busy social occasions. I have tinnitus in both ears, left one's a waterfall and right one's a lawnmower, but I've become quite used to them both and can usually sleep through them now. I discovered the earphone anomaly when I got the second tinnitus and wearing earphones was the only way I could drown it out. But I would be singing along then realise I was slipping out of key (and I'm not normally tone deaf...!)and notes were sounding flat or sharp -sometimes so discordant it's impossible to listen to. My hearing isn't too bad - I was fitted for a hearing aid but the hearing loss apparently wasn't bad enough as I could hear the mechanism of the hearing aid, worse than the tinnitus! I don't hear low sounds, which unfortunately includes my husband's baritone voice :o)

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  37. LOL! "Waterfall" and "lawnmower" are the best descriptions I've heard yet for tinnitus! I don't mean to belittle your suffering by laughing, by the way, but that really struck me as funny. My tinnitus changes from time to time, and my favorite is when it sounds like one of those windchimes made out of tiny seashells, or like ice cubes cracking and tinkling in a glass of water.

    On the other hand, it's very depressing to think I might lose my sense of pitch. I've been singing with a choir for a few years now, and I so don't want to have to give that up. I'll have to make sure to ask my best friend to let me know when I start to slip. :(

    On that note (pun intended) I have found I do best in the choir if I sit at the far left end of the soprano section so I don't have anyone singing on the side of the "bad" ear. Otherwise, the whole choir sounds out of tune (well, that could be real, actually).

    That's a shame about not being able to hear your husband's baritone voice well any more... I would hate to lose the full timber of my husband's baritone. Just as I dread the day when I won't be able to hear birdsong and a cat purring.

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  38. Peg said,
    Just randomly got on this sight and am excited. Am a menieres patient, also thinking about getting the steroid injections, having suffered for a long time. At this point I'm wondering about getting on Disability, I'm 59 and the disease is taking it's toll at work also. I am scared of the injections because of maybe worsening the already horrible tinnitus that I have.

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  39. Hi Peg,
    if the meniere's is making work difficult than you might want to look into disability at 59 it might be easier for you to get. I'm 53 and trying to get on social security disability right now.
    As for the steriod shots I'm not quite sure how that will affect your tinnitus. maybe someone with had the shots will follow up.

    thanks for the comment and keep in touch
    David

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    Replies
    1. It will not help the tinnitus! Mine stayed the same. I did feel that it helped my balance for a while? My eyes used to jump a lot now I just have a lot of pressure be hide them. I have now have migraines?

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  40. I am 36 and have been on disability for Meniere's since I was 28. It did take a while to get, but we didn't know I had Meniere's when I applied. If you have a specialists and the tests done that show you have it, it is quite a bit easier to get. I am having endolyphatic sac decompression on the 16th.

    I have done the gentimiacin injections and I am about 70% better from what I was (which I was not even able to walk by myself at all or read or anything at my worse). I am still disabled by it, but I am now able to go to school full-time and drive and shop in a grocery store! (a big deal comparatively) I am hoping to get some recovery further this treatment. It would be nice to have some more relief on top of this.

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  41. For what it's worth~I have not had the steroid shots, nor the Gent injections, but I will say this. I did have the Sac Decompression operation, (which unfortunately failed) and following that I have had much worse tinnitus. It really ramped up. It's always been 24/7, but it's louder now than before. Sometimes have it in my 'good ear' now too. All this after having the 'bad ear' worked on.
    Interesting. Wonder if there's any correlation?
    I know this doesn't happen to everyone with Menieres though.

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  42. Gentamicin didn't have any effect on my tinnitus at all. It cut down on pressure and balance issues temporarily, but that was about it.

    Regarding disability, I don't think you can file while you are still working. If you were to be fired because of issues having to do with your Meniere's, then you should definitely file for disability.

    But they are very strict. I cannot even work part-time or on a freelance basis during my application process, for fear of disqualifying myself right out of the gate.

    Mind you, I'm not at all sure I CAN work, even part-time, which is why I'm trying to get disability. Once I qualify, I would like to try to find home-based work to supplement the disability payments. But be aware that filing is a very, very long process, and they will NOT make it easy for you.

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  43. I wanted to also say that I suffer greatly from migraines triggered from bright lights. My work has been wonderful by removing most overhead lights around me. But driving at nite and in the early morning was awful. Now my solution may not be for everyone so please take this as a suggestion only. I had a terrible experience one morning, almost hitting another car, because I was blinded by headlights on my way to work. I became terrified to drive when it was not daylight. My husband is a hunter and thought of the tinted glasses that hunters use for shooting - not the tinted sunglasses, but the regular glasses. We went to Gander Mountain that nite and spent 45 minutes trying on all the glasses in the store and looking up at the lights in the ceiling to simulate the lights of an oncoming car. I settled on two colors - my favorite turned out to be an orange color. Now I may look a bit hoaky driving down the road at night but I can see. This cuts the lights so they look more of a yellow-ish/amber color to me, without cutting my depth perception out. But I still use my judgement, if I don't feel safe driving, I am still calling my husband or son to come get me. I can't drive with oodles of lights coming at me so I use my brains about it. But I can drive into work early in the morning now instead of waiting until the sun comes up, or work late if I need to. This has given me some of my freedom back.
    But really, use your own judgement. Just don't let this disease keep you confined.

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  44. Theresa, that's a great employer you've got there... I can't imagine too many being so understanding. And I like your solution of the hunters' tinted glasses. I also have problems with bright light these days.

    I'm concerned about the link between Meniere's Disease and vision, which no one seems to talk about much. My vision has gone downhill quite a bit in the past two years, just since I developed the worst Meniere's attacks. I now wear prism lenses, so I'm not sure the hunters' glasses will work for me, but I do wear sunglasses over the prism lenses sometimes, when the glare is too much for me.

    I'm glad you've regained some of your freedom. I'm working on mine. :)

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  45. I've had Menieres for almost 20 years and it's gotten much worse in the past few years. Within the past year, I'm now getting the added bonues of a headache (exactly described by someone above as something pushing on the top of my head.) I can't take aspirin, ibuprofen or acetaminophen because of more aggravation with vertigo. Has anyone found a pain reliever that ok?

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    1. Just wanted to note that I've been having more headaches in the year or so since my labyrinthectomy surgery, and more recently have identified some other symptoms as ocular migraines.

      Last weekend I had a migraine that turned into aphasia... an inability to communicate. I couldn't read words off a page correctly, even though I recognized them in my thoughts. I would try to correct myself, but couldn't.

      This week I saw a neurologist, who thinks I have complicated migraines (we have to narrow down what type of migraine I have more specifically, as there are several types). She prescribed an anti-seizure medication that she says should help cut down the migraine symptoms. Next week I will have an MRI, a carotid Dopler, and an EEG to try to narrow it all down more.

      The thing I'm wondering now is whether migraines and Meniere's have the same root cause in the brain. My neurologist asked why I never got help before now for the migraines, and I told her it was because I thought the symptoms were all due to Meniere's... they are THAT similar.

      I'm thinking that the same thing that used to make me have Meniere's symptoms is now causing me to have migraines. The dizziness, the nausea, the confusion and exhaustion... it's all so familiar. I know I had/have Meniere's because of the hearing loss. But migraines can also cause tinnitus, which is puzzling.

      I'm glad I finally went to a neurologist, and I wonder if more Meniere's patients should also try this approach? Just a thought...

      Delete
  46. Hi Peggy,
    I think that you are right about the close connection between migraines and meniere's. Over the years I have seen many comments regarding a connection between the two. Maybe by working on the migraine it may lead to a better understanding and possibly a treatment for meniere's.
    I hope you get to feeling better soon I know it has been rough for you lately
    DAvid

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  47. Hi, my name is Linda, I am 50, live in Staffordshire and I have been diagnosed for around 6 years now.
    As a child and into adulthood I had very memorable ear infections and general hearing difficulty. My childhood was marred by sea sickness, rotational vertigo and tinnitus. I recall vividly visiting the park with my sisters where they had fun while I avoided the roundabout and the dreaded ‘witches hat’, sitting quietly on a still swing. Until 6 years ago I thought that everyone could hear a noise when it's 'quiet', because for me that has always been normal. As an adult, I always put my odd dizzy spells down to my low blood pressure but I couldn’t explain the vertigo if playing certain video games, the travel sickness and the stress of noisy places. 6 years ago I had my first major vertigo attack, which left aural fullness and badly affected my hearing for months. Any stress affected me badly and the headaches were/are crushing. I was referred to ENT where they diagnosed bilateral Meniere’s with hyperacusis. When I got home I scanned the internet and it really scared me. I could feel my independence slipping away and I mourned for my old life. Sometimes I still look back, but I find that optimism has been my salvation. So this month has been bad, work is stressing me and I have had migraine type pain over my eyes 3 days this week (which has caused nystagmus) and then I bruised my hip when I failed to negotiate a doorway and almost fell over my new boss. But next week might be a good week.

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    1. Linda, optimism is a very useful trait when you have MD, no doubt about it. And there are many options these days for people who have bilateral MD, to address the hearing issues and even the balance. New devices are in the works, and I keep hoping they will become readily available in our lifetime. It's worth seeing your ENT on a regular basis and doing research to find out what is possible.

      I have trouble navigating around the house, too. I have bruises on my legs from failing to get around the footboard on our bed, which sticks out on either side. I keep thinking I should change that bed frame before it breaks the skin.

      Stay upbeat. It's one of your best weapons in this fight.

      Delete
  48. Hi Linda,
    That is interesting because I also had a lot of problems when I was young with ear aches and motion sickness. At the time we all thought that they would go away in time and they did for a while.
    I also find that my blood pressure plays a part in being light headed and vulnerable to a menieres attack.
    I can also understand how you feel right now, it can be really overwhelming to see your life change with this terrible disorder. But things will get better, you will find out ways to cope with the meniere's attacks and emotional baggage that it dumps on you.
    Keep learning as much as you can about meniere's and stay in touch with us because there is a lot of folks who know what you are going through and that can certainly be a big help.
    Stay in touch and good luck
    David

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  49. Hello Linda
    I am like you from a young age motion sickness was always an issue. I see a correlation between the two.
    In reference to your migraines, go and see a neurologist, i was prescribed propanlol. It has worked wonders for my menieres/migraines.
    Also i know you live north of England but in London there is a dr by the name of dr Palaniappan, he specialises in Neuro-otology.
    He works in the royal national ear nose and throat in kings cross. Try him or ask his secretary does he know of anyone near you. he is the leading dr in England regarding balance.
    Also try diet changes, and recently people have been posting regarding nucca (chiropractic) were they realign your atlas. There are some real interesting grey areas with menieres, read through all the posts and you will find something that may really help you.
    regards
    ali

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  50. Propanolol might not be good for someone who says they have low blood pressure, since the medication is meant to combat hypertension. It could lower BP to dangerous levels. Just a thought...

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  51. Hi David, Linda,and all other readers/contributors;
    Talk about an eye opener! I also had issues as a child with some motion sickness, mostly from amusement park rides, but I couldn't even spin around like most people, I would maybe make it around once before I'm falling over. Even before my first vertigo attack, playing around with my kids, I would have an issue and make excuses for not spinning around with them. WOW! I've also noticed that, for me these days, extra physical exertion can trigger an attack. My EN&T really liked the fact that I walk 2 miles per day, and I try to change up my routes I walk. Just yesterday, as I was walking up a rather long and steep hill, I had an attack. It was one of the more harsh ones I've had since I started the Decadron injections (3 so far). I never correlated easy dizziness as a child or even adult with MD..interesting if there is indeed a connection. Even flying, when the plane was ascending and making a sharp turn, I would get all woozy, and on my only ocean cruise, I get sea sick pulling out of port. Very interesting indeed!

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    1. This IS all really interesting, and I guess I am the exception to the rule. When I was a kid, I loved nothing more than the amusement park rides that made everyone else sick. And I've always been a really good sailor... hardly any seasickness. But all that has changed over the past decade.

      Now, of course, I don't think I would attempt ANY of that. That makes me sad, because I really loved the water, swimming, sailing, and the couple of cruises we took before all this started.

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  52. Hi, first time commenting here. My GP suspects I have MD and is sending me to a neurologist to rule out other causes. I had severe ear infections as a baby but never had any motion sickness or other issues until my 20s. And only the past few months have I started having vertigo attacks. While I don't know if I have MD yet (God forbid I have a tumor or something else), I have learned a lot reading this blog and feel comforted already knowing that you all are finding creative ways to cope with the symptoms and to be patient and strong in the face of the disease.

    I wish the author here and all the commenters all the best, and may report back after my doctor's appointment.

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    1. Doctors like to say "When you hear hoofbeats, think horses, not zebras." But you need to rule out the zebras before you can treat for horses, if you know what I mean. It's very, very unlikely that you have a tumor, but they need to check before you can move on to treat whatever you do have going on. Good luck with your appointment, and I'll have my fingers crossed for you.

      I had an MRI, EEG, and carotid ultrasound last week to try to figure out what's causing my migraines and will get the results tomorrow. So I share your anxiety.

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    2. Thanks for your comment. I finally had the MRI and went to an ENT as well, but still waiting to see the neuro again to get the "big picture" diagnosis/talk.

      Anything involving important body parts is anxiety-inducing. I read your comment below and hope that the extensive testing turns up some GOOD answers for you so you can focus on feeling better and not feeling all the stress from the uncertainty. Take care~

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  53. First of all good luck on the MRI I hope there isn't an issue there. I also hope your doctor can give you an answer on what to do about this sudden vertigo.
    Let us know after the doctor's appointment how things are going
    thanks
    David

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    1. My story took some strange twists today.

      First, the disability news is official. The money was in our bank account this morning, and we will be getting benefits going forward.

      But the news on my latest tests isn't all good. The MRI was normal, so structurally my brain is OK. But the EEG showed abnormalities; specifically, I have slow brain waves in my temporal lobes. This can mean lots of things, including epilepsy, so I'm a bit nervous. I'm going back next week for a 48-hour EEG, which entails electrodes all over my scalp attached to a monitor that I wear for two days. Holy freakin' crap.

      So, although some financial relief is in reach, my medical picture continues to get stranger.

      Delete
    2. Update: MRI is (apparently) normal. ENT says it's probably migraine-associated vertigo (aka vestibular migraines). I have a follow-up with the neuro in a few weeks to see what she thinks. So we'll see how it goes.

      I'm still going to keep following this blog, as it's actually very interesting and well-written. :)

      Delete
  54. Hi Peggy,
    Congratulations on the one hand but on the other I'm worried for you. I hope the test doesn't show epilepsy or anything like that. 2 days attached to electrodes and a monitor that sounds really rough.
    Well I am certainly glad about the ssi at least that can give you some relief
    David

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  55. Hopefully, it is only about migraines. I think that's possible, although I'm not sure. But I sure don't like it that something in my brain is "abnormal." Thanks for the kind words.

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  56. Best wishes for you, Peggy.

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  57. Hi everyone, thank you for your advice and discussion since my post. It's good to know that there is such wonderful support here. Peggy, I do hope that everything goes ok for you. I will send you lots of positive thoughts.
    Linda

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  58. Thank you both for the good wishes... I'm sitting here right now with a head full of electrodes, held in place by an elastic net cap and with wires running to a recording device. This will go on for two days (sleeping should be interesting). We'll see what they find when it's all done.

    The more I research, and the more I think about it, the more likely it seems that I have complex migraines. Migraines can cause all the symptoms I've been having, including aphasia and the inability to find vocabulary words I want to use, so I'm crossing my fingers for that outcome.

    And I'm really glad now that I knitted myself some new caps this past winter. They're a perfect fit to hide the electrodes and wires. :)

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  59. Good luck Peggy,I hope all that helps out.
    David

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  60. i have been diagnosed with menieres 6 weeks ago despite having it for over a year.i had the ear drum in my left ear repaired last year and i think its the cause of all this as i was ok before it. and it is comforting and reassuring to read all these posts and realise i`m not imaging some of the symptoms described here. i have to see ent specialist next week and am petrified especially as they have said i may have a small tumor causing it.

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  61. Hi,
    I certainly hope that it isn't a tumor, stay in touch and let us know how you are doing
    good luck
    David

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  62. Hi all,
    Am so glad I found this site/these comments. I, too, have been suffering from Menieres for probably abt 20 yrs. I was diagnosed almost 3 yrs ago (after thinking it was hopeless vertigo, tinnitus, & migraine.) Also, I have seen so many concerts & worked in music venues in the past, I thought I suffered hearing loss from loud music!

    Anyway, I now know that a lot of my headaches are triggered by a Meniere's attack. For years (since my teens) I've gotten headaches, lots of them migraines, but almost all of them w/nausea. From some of your posts, it seems that you all have this 'wonderful' headache symptom, too. I get some headaches that last for about 3-4 days. This is day 3 of a cluster headache that has moved from my right side to my left, & is on its way back again in to my right. Anyway, do you all have headaches that last for several days? Cluster headaches?

    I know the frustration of the constant buzzing, sometimes roaring, the dizziness, & the depression/craziness that comes w/this afflliction...additionally the sheer frustration of limited research of this disease. I have heard the stats to be from anything from 1/1000 to 1/10,000 of people who are affected (my doctor told me it is more like 1/10,000!) Sadly, with this disease reported to be so rare, not much is being done to further awareness & research. One of you said a celebrity should be a spokesperson for this...I think Kristen Chenowith (spelling?) has MD.

    So, before I keep rambling, just wanted to say thanks for the insightful viewpoints, great info, & best of luck to you all...I can sympathize & empathize. As of now, I don't have insurance, so I can't afford to go see my ENT much, but, by that same token, don't know what he would able to do...my hearing (as of last yr) is about 2/3 of what it used to be. I am learning American sign language as a preparatory precaution...I have a ridiculous worry I'll wake up deaf one day, though I know that's not the case...I do know, however, that I have had friends tell me (who haven't seen me in a while,) that I say "What?" a little more often, & the friends who know about the MD have been wonderfully supportive. My husband is a musician, & the cruel reality is that I have to limit the amount of shows of his that I can see (or hear!) I do have a good set of earplugs I use religiously, but the vertigo is no fun.

    Best of luck to everyone; thanks for letting me post! ~Lin

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    1. Hi Lin,
      I, too, have had MD for over 30 years. It was difficult to diagnose at first (rare) and now I deal with more hearing loss and less vertigo. Though I occasionally only have tinnitus for several days a year, my ears are generally always "full" in that I feel I have just stepped off an aero plane. My recommendation to you is that you keep doing what you are doing and don't let this disease control your life. Certain days I feel terrible with headaches and / or nausea, but, for the most part, I can get on somewhat normally. I, too, have learned sign anguage, and I feel more secure in that I can make the transition from losing my hearing to signing if and when the time comes. I should also mention I am in my 60s and still have a decent amount of hearing. I have only lost about two-thirds of it in the past 30 or do years. The tinnitus can be a drag, but it only happens several times a year. Thankfully, the vertigo is infrequent. My husband, children, and grandchildren will let me know if they think my hearing is going downhill (of course) and they have been supportive. Don't let MD stop you from enjoying music - or any aspect of your life.
      Best wishes to you,
      Liz (UK)

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  63. Hi David,
    I hope this comment get post and get advise's from other members. I am not sure if what I have is call, Meniere's disease or am I going to have brain tumor or cancer here. I have this symptom for almost 10 years now, but I never pay full attention to this until now. I have been checkecd up with one of the ENT, several years back and did the CT-scanned. But he said there's really nothing wrong with my ears. As time past by and several years later, and the symptom is getting worsen and I went back to different ENT and did an MRI exam this time. My doctor doesn't see anything wrong with my ears either, but she said that on my right ear i might going to have a hearing lost. As I told her that each time before my symptom occurred, i get sweat, heart beat fast, having hard time breathing, tension on both shoulder especially my left side and travel through my neck and up to my head like something is pulling it. My eyes are some how get very sensative to light, my left arm get Numbness, i have hard time talking and i can't control my body as it about to loose balance. As a symptom occure, my body was light as I were standing on top of the mountain and look down, as I about to fall and then everything around me start spinning. These are the symptom that I have and some time it last between five to ten minutes, but worst it would last about an hours to two the most. I don't know if this is part of Meniere's disease or not, but yet this is was I been having. After the symptom disapearing, my body get's pale and I feel like vomitting and sometime it get cold. As I get older, I noticed that the symptom get worsen. Sometime, it happen two to three times per day and some day less. At first I thought I was over stress, that's what my psychologist told me that my symptom was the sign of high level of stress. I believed her and I actually took pills to control that, and I also get my self massages each week. Well, that help a little bit but the symptom still coming back. So now my doctor think that the sysmptom might be Meniere's disease, and we just monitoring it. She said that if the symptom still exit by December, she will get me an antibiotic for it. But in the meantime what should I take to control, my dizzy symptom. It hard to function daily as you don't know when the symptom will strike again. I can't drive my self to places anymore, i have to depend on other people. I can't go to school, and each day to go to work my dad have to drive me. But what hurt the most is when your friends think that you are pretending and that it all in my head.

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  64. Anonymous, after reading your symptoms I found myself wondering if you have migraine-associated vertigo. Meniere's is a possibility, too, and if I were you, I would pursue that. You are suffering too much to follow your doctor's advice of "just monitoring it." Try seeing another doctor, and meanwhile get your hearing tested to be sure whether or not you are losing your hearing.

    There are many treatments for Meniere's or other types of vertigo, but your doctors need to narrow it down first and TRY something other than observation. I've never heard of treating Meniere's with antibiotics, except in the case of using gentamicin injected into the ear, which is destructive to your hearing in many cases and not a remedy to jump to right away. Most people try diuretics, low-salt diets, cortico-steroids, or other treatments that are not destructive first.

    I understand about your friends thinking it's all in your head. That happens a lot with Meniere's, because there are no signs of it in your face or body. You *look* normal, so people think you must be feeling OK. That's not how it works with Meniere's, though.

    I would seek another opinion with a different doctor who is well-versed in Meniere's Disease. The one you are talking about in your post doesn't sound like she knows much about this problem. You should also consider going to see a neurologist, because some of your symptoms sound like a migraine to me. Keep trying. I know it's difficult, but you're not in this alone.

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  65. Damn and blast. I had another ocular migraine last night, and I had thought I was done with that for awhile. The last cluster was in April, and I've had all these tests that were completely uneventful. The neurologist can't find anything that would give a definitive diagnosis other than what we know from the symptoms. "Complicated migraine." Great.

    But I had just received bad news about a dear friend last night, and was very anxious. Suddenly, the room became much more blurry, and I started seeing lights and dull sparks, and the field of vision was like moving water, wavy and swimming.

    What makes this interesting is I know I had been feeling pretty bad for nearly a week leading up to this. Does anyone have any idea how long a "pro-drome" period can be leading up to a migraine?? I've spent at least a week feeling dizzy and extremely irritable, and my vision was more blurred than usual for several days. Then the stress of a phone call seemed to kick me over the edge into the migraine.

    Ugh.

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