Sunday, March 25, 2012

Ocular migraines and Meniere’s disease

As I have said many times before the best thing about this blog is all the wonderful comments that I receive. The first hand experiences that folks write about is so incredibly important because it shows a side of Meniere’s disease that you hardly ever (never) hear from a doctor.  And what is even more important is that on so much of this brings an understanding of what may work to ease or relieve the problems of this disorder.

This week I received a comment from Peggy on ocular migraines...

Saw my ophthalmologist today, and he confirmed that I do have ocular migraines. We talked about going for another MRI, but since I had ocular migraine symptoms before my first MRI, he doesn't think another one would be revealing, and it's been only three years.
 
Otherwise, he says my eyes are healthy, and since the migraines are pretty rare, I can just treat them by lying down with a cool cloth over my eyes and taking aspirin when I get the symptoms. Medication for the migraines would only make me more dizzy, he thinks. THAT I don't need, LOL!
 

We have talked about migraines before and how there is a connection it and Meniere’s disease.  Vision is another piece of the puzzle with this disorder as well. So it is understandable that ocular migraines could bring about Meniere’s.

I read in Mayoclinic.com that with ocular migraines you might see something like…
  • Flashes of Light
  • Zigzagging patterns
  • Blind spots
  • Shimmering spots or stars
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34 comments:

  1. Yup, those are exactly the visual effects I get. And when I Googled ocular migraines, I found some very interesting computer simulations of what it looks like when you have the aura, and that really sealed the deal for me.

    Fortunately, I don't get them often. Turns out I've had them for decades, but didn't figure it out until last week!

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  2. The thing with migraines is that people can develop them without having menieres ..I believe women in particular can have hormone related Migraines.. (or lack of with the menopause)
    My mother began her migraines with flashes of light, shimmering and nausea in her late 40's but never had menieres..however perhaps thats a connection why I went on to develop it.

    Also I have read on some sites that Aspirin is not good to take with Menieres ..perhaps a paracetamol based painkiller or one specifically for migraines may be of more benefit.

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    1. I have several friends that their migraines affect their vision like you describe and they are bed bound for the attack but they don't have MD.
      I've never had a migraine of any kind (that I'm aware of) and I've had MD for 20+ years and am bilateral and it continues to get worse day by day. I believe it was a virus that got me ...but they don't know. I do know my jugular bulb is high in my ear and sits posterior. Why this happens they don't know. This could have set me up for MD and a virus could have trigger it. Who knows?

      I'm HOPING that menopause will help my symptoms. I'm on board with the hormone connection. I know that doesn't help the men reading this.

      Has there been a study relating migraines of the eyes with defective ears? Perhaps this is a vascular problem.

      My friend says she takes magnesium and b vitamins to help with the migraines.

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    2. It's true that you can have migraines without Meniere's, and vice versa, but it's interesting nonetheless how many people who have Meniere's also have migraines. Plus, there's another known phenomenon known as migraine-associated vertigo. Just about everything in your head is inter-connected.

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  3. Wow, I have MD and get migraines. I have only had one ocular migraine and it really scared me, because I thought there was something wrong with my vision.

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    1. It is a bit scary... the first time I had the ocular migraine, I thought it was a panic attack, and went on believing that for years. It was only very recently that I realized it was actually a migraine.

      And to Mel's comment below, I think there is a genetic link, too. My mother doesn't have Meniere's, but she lost the hearing in one ear at an early age, and she has several balance problems. Recently a physical therapist started testing her for vestibular function. Duh. She got to 85 years old before anyone thought to do this. Sheesh.

      I don't know if anyone in the family has migraines, ocular or otherwise. Might have to check that out. Not that it would help, but it would be mildly interesting.

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  4. I think there is a genetic link ..for instance if one generation has migraines and not MD then the next can get either migraines and/or MD.. (My maternal grandfather had ear problems/deafness ..my mother had migraines and I have MD)
    I believe their could also be an hormonal link .. my first severe attack was after I had taken the contraceptive hormone pill for a couple of weeks and now my GP will not prescribe HRT for menopause as he said it could be a trigger for MD in my good ear.My mothers migraines started with the menopause.

    I had my labrinthectomy before the menopause so I cant say how that would have affected MD.

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    1. Oh, regarding menopause, I've been giving that some thought, and my Meniere's symptoms went ballistic less than a year after I stopped menstruating. However, around the same time, I lost my last full-time job, so it's hard to know whether it was because of menopause or stress or both that the MD symptoms went off the charts.

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    2. ARGH... Peggy and Mel, the news just keeps getting worse. My grandmother and grandfather went nearly deaf (they were in their 80s and 90s), my mom had baseline low tinnitus all her life. Now my dad is practically deaf (he's 89) But I am the only one ever in my family like this and EVERY doc will ask me this question!! I can't imagine that MD can be any worse than it is now. I do know that I'm having hormone issues...because we women just know...I won't go into detail. I don't menstruate because of surgery but I can tell I'm still having my monthly hormone swing. If I get worse when menopause hits, I will need a straight jacket....and THEN I'll start getting migraines.... Question: Where you able to read when you had the ocular migraine? I've had episodes like this when I was pregnant. VERY SCARY...but I was just a crazy pregnant woman when I told my doc about it...and it went away with the pregnancy and never returned.

      Does anyone out there have bilateral MD with mind blowing, debilitating pulsatile tinnitus? Getting my second round of steroid injections next week. Last ditch effort to keep me going and give me some quality of life.

      They won't know why I'm like this until they autopsy my temporal bones. That's helpful.

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    3. Anonymous, I'm sorry you're having such a terrible time. Regarding the ocular migraine, I couldn't read when it was at its peak, but mine subsided after about an hour, and I could do things again. My ophthalmologist said that when I notice the symptoms I should lie down in a darkened room (if I can) and put a cool, damp cloth across my (closed) eyes until the symptoms get better. It's a nice way to meditate, too. :)

      I wish I knew how to help with bilateral MD and such bad tinnitus, but all I can recommend is you talk to your ENT specialist relentlessly, and if you don't get answers there, try another doctor. With MD, you can never say die... even if the doctors shrug, you keep pushing, because only you really care if you get answers, sad to say.

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  5. I have been diagnosed with MD for about 7 years. My acute attacks have been replaced with a constant dizzy feeling and bilateral tinnitus. My neurologist says I have an atypical disease because I have little to no hearing loss and I have elements of Migraine, too. My mom had terrible migraines most of her life and I'm just now considering the family connection. I wanted to let you know of something I am considering for myself. I take Lipitor for high cholesterol and it is recommended that people who take statin cholesterol lowering meds also take the supplement CoQ10. I stopped taking it for a while and recently started again. This time I took a bigger dose than usual, and I noticed I had a very steady clear headed day (most unusual). The next day I repeated it and I still felt better. Now I'm taking about 600mg per day and I have felt better every day. I'm a pharmacist and so I have gone on line to see if there is a connection with CoQ10 and ataxia/ dizziness and there is some information out there. It has been found helpful to decrease ataxia associated with migraines in several studies. CoenzymeQ 10 is a relatively safe medicine that replaces natural CoQ10 in the body. It helps to provide your body with the building blocks needed to produce energy in the cells and stabilize cells. Its also a potent antioxidant that may help prevent heart trouble or perhaps cancer. I would not have thought it made a difference until I increased the dosage to at least 200mg per day. I thought you might want to research for yourselves and consider trying it. The medicine is only absorbed in a lipid environment so take with food. Let me know if you find any improvement. Meanwhile Im still looking for answers. Thanks

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    1. That's very interesting, Gina D. I'm just now starting a new program of controlling my diet and exercise, and taking a collection of dietary supplements, including CoQ10. This is all to lower my cholesterol a little, since the bad numbers are a tad higher than they should be. I'll check back here to let you know if it seems to be helping the Meniere's symptoms.

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    2. Thanks Gina for this information regarding C0Q10. I have taken a statin for 10 years but didn't know about this. I will give it a try!

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    3. David, why the heck can't I just add a comment any more? I have to reply to someone else's comment, and it's not always relevant...

      Anyway, I just wanted to add to this thread that my ocular migraines have taken a turn for the worse.

      This morning I started an ocular migraine while driving, and when I got where I was going, the migraine got worse. My vision was blurred with flashes of light and blind spots, and then I realized that I had aphasia. I was trying to read lyrics from a song, and the words I was singing were all wrong. I knew what I was singing didn't match what was written, but I couldn't fix it. One of the terrifying moments of my life.

      After awhile it cleared up to some extent, but I was so weak I could hardly stand up again. A friend had to drive me home.

      So I guess I'm heading back to the doctor. Anyone have any thoughts on what kind of specialist would deal with this??

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    4. Hi, I recently experienced an ocular migraine which was so scary. My Dr. got me into an Opthamologist the next day to test to make sure it wasn't a detached retina causing symptoms of flashing, zig zag lights, etc. Determined was an ocular migraine. I have had Meniere's since 28 (now 63) so can sympathize with everyone who has it. Been quite a difficult journey at times and I always worked at being brave & tried not let it get me down too much but this past year I do notice more 'sadness' because of the limitations it has caused me. Just doesn't see fair but then have to tell myself at least it isn't a terminal illness and I have alot to be thankful for. Wishing all of you well.

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    5. I saw a neurologist last week for the ocular migraine/aphasia, and she prescribed Topamax, which was NOT fun, so we took me off it after a week. This week, I'm having an MRI, carotid dopplers, and EEG, to make sure it's not something really exciting, like a tumor. Today is the EEG.

      What's strange is I fully expect that we will never figure out why I had this incident of aphasia. Which is very disconcerting. Then again, it would be far more disconcerting if it turns out to be something medically crazy. *sigh*

      Guess I'll wait for the test results and take it from there.

      Good luck with your ocular migraines, Bev. It's not a fun addition to Meniere's, is it? And no... it's not fair.

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  6. Hi Peggy,
    First of all I’m glad that the migraine didn’t cause you to have an accident while driving, I would be real careful with that.
    One of the first sites that I read about ocular migraines suggested that you need to find out what triggers these types of migraines. I know that is easier said than done, because like with menieres disease you don’t always know what starts it. Another site talked about something a prodrome that occurs days or weeks before an attack which can be a sign that an attack is on the way.
    http://www.allaboutvision.com/conditions/ocular-migraine.htm
    On this site they also talk about how your vision changes during an attack and they refer to something called a broken window effect, which is interesting.
    As for a specialist it seems that it all fall under an eye doctor because of what happens to the vision. Hope this helps
    David

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    1. I go to a Migraine specialist in Cincinnati Ohio. I was referred by my Neuro Otologist. He is classified as Primary Care. I go the the University of Cincinnati Physicians who are the top specialists in this area. University of Cincinnati is a teaching hospital and do much research. I hope that is helpful.

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    2. Thanks, David. I am learning to recognize the prodrome... fortunately, it has symptoms I can spot if I learn to pay attention. I get very cold and am constantly searching for a sweater or blanket, and I am dizzier than usual for a couple of days. I will also check out that link you posted, because I'm in full-on information gathering mode now.

      Tricia, I am calling my neuro otologist this morning to get her recommendation, and I hope she'll give me a referral. Might try my ophthalmologist, too.

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    3. A quick update: I saw a neurologist soon after my last post here, and she sent me to have a brain MRI, EEG, and ultrasound of my carotid arteries, in case the aphasia was actually caused by a TIA (mini-stroke). I just finished the last of those tests and will meet the neurologist next week to review the results and plan our attack.

      And, David, I'm almost afraid to say this and jinx it, but my lawyer called this morning: I think my disability claim has been approved!

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  7. Hi Peggy,
    That would be terrific news!! Hope and pray that your dis. claim is approved!
    Good Luck and let us know
    David

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    1. Thanks... my lawyer was looking up another client's case online when she spotted my name, and the note said "favorable decision." She called the court to see if that meant what she thought it meant, and they confirmed that they have found in my favor. Which would mean I don't have to go before a judge after all.

      We are just holding our breath now in case it turns out to have been a mistake. Usually, the court's clerk would call the lawyer to tell her about this decision, but since it was posted only yesterday, perhaps they just hadn't gotten around to it yet. I'm on pins and needles now. If it's true, it also gives other Meniere's patients applying for disability more reason to hope, I think.

      I keep thinking about Lauri and hoping her situation has improved.

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  8. My case has been sent to the Virtual Screening unit. So it is wait and see for me.
    David

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    1. Does that mean your file is waiting to be reviewed so you can get a decision? I'm not familiar with the process in Georgia. My file was in a big pile waiting for me to get an appointment with a judge, but someone apparently read my file and decided a hearing was unnecessary. I hope the same thing happens for you soon, David.

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  9. thanks Peggy,
    From what I understand the Virtual Screening unit is a relatively new thing where some cases are reviewed without a hearing. If the decision is negative then it will eventually go to a hearing.
    David

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  10. I have MD (10 years, after moving to Colorado)and recently had what may have been an ocular migraine. So nice to find others similar. My MD was idiopathic with no hearing loss - my otolar. referred me to an allergist who diagnosed an extreme allergy to mold whih has been shown to be a cause of md symptoms. Anyone similar? Antigen therapy has helped, though it's so easy to get off track...

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  11. Hi Lotte,
    I know in the past that others with MD have talked about the connection between allergies and menieres.
    Stay in touch and let us know how the antigen therapy is working
    thanks
    David

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  12. hello
    what is antigen therapy, i googled not much came up
    regards
    ali

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  13. Ali, I think antigen therapy just refers to giving someone shots of a small amount of what they are allergic to so they can build up a resistance and stop reacting to it. Lotte or David, if I'm wrong about that, please let me know?

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  14. Mold, tree pollen, cotton linters, cats, dogs and yeast and fermented foods are allergies I have been diagnosed as having. In fact the doctor who performed the tests at The House Ear Clinic, in L.A. said I had so many allergies it was if my body reacting to living in a foreign environment . The only manifest health issue I have is Bilateral MD. The two are conditions are supposedly related and am urged to move out of the PNWest. I have a connection between digestion and episodes of bad MD days. But the clear picture isn't there yet. I eliminated all the foods for two months and lost 6 pounds but no change in MD symptoms. That was two years ago and I am trying the diet again only including the elimination of high histamine foods as well. Dunno. We shall see. Ive had MD for over 20 years and have only 65% hearing left in one ear only.

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  15. Hi Anonymous,
    I'm in the same boat! Almost 18 years of MD and bilateral. No other allergy symptoms really to speak of. I was shocked with my allergy testing. Many many allergies addressed (food and environmental) and I've done the food elimination with little change and IgG drops. Also have IBS...which is considerably better and I lost 15 pounds. I too am trying to eliminate high histamine foods as well.

    Dyazide is wiping me out but I continue on like a good patient but the fullness is still there.

    I'm getting pretty desperate at this point.
    Did you have steroid injections? Have you been on predisone?

    I feel like no matter what I try or do this just won't let up. I'm a healthy person otherwise. Seems no matter what I eat or do I feel bad. I live in the Midwest. It's no party here either.

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  16. Hi Midwest, Like all of us I have been desperate for about ten years as the hearing in my left ear is gone. The allergy testing was done by a doc who is doing research into BLMD as being related to allergy. She quite famous world wide and seems to have arrested MD in some patients. She wanted me to do allergy shots for 3 to 5 years but it just wasn't possible to keep up. Originally I went to see her after being on a strict Macrobiotic diet and experiencing a restoration of hearing lasting about 2 months that coincided with a flu that emptied my intestines . Really weird, I know. I will never forget it. Extremely high pitch tinnitus through which I began very dramatic improved hearing then the tinnitus subsided but the hearing stayed. Of course I thought I was cured! No hearing aid! Birds singing at sunrise! Bob Dylan not garbled! Good Ol' MD came back but it made me think my problem might be allergies. The doctor is Jennifer Derebery M.D. If you google her you can read some pretty good stuff she and MD patients have written.
    The sudden hearing gain never happened again although I tried to recreate it. However I am not giving up! The most help I have received overall is from chinese herbs with an acupuncture doc. It's not a fix but has calmed the tinnitus considerably and create a great sense of well being in the rough spots. Can't figure out how to get a name so I'll be PacNW. Thanks for writing.

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  17. I am 67 years old. I had migraine with aura beginning at about age 8 until about age 25 when it all went away. At about age 50 the migraine aura returned without headaches. At 55 vertigo attacks set in and through a long process I was diagnosed with Meniere's. The vertigo has stopped for now as of about 2 years ago, but I have migeraine aura at least 5 times per week - sometimes two or three times in a day. Usually lasts about 45 minutes. There has to be a connection.

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