How did you get your diagnosis

I’m very frustrated. I’ve been sick for 30 years off and on with dizziness. No migraine headaches - pressure and pain in ears and around back of head. Been through a rough 2 months this year - have horrible allergies and menopause to boot. Went to a Neurotologist and he reran all the tests for Meniere’s and now says I don’t have it so he sent me to a neuro and he wants to do a BAER test to rule out the bad stuff even though I had that and an MRI done 3 years ago - that’s okay. But how do they really figure out if you have MAV? Process of elimination? I told him all of my symptoms and he thought there could be an anxiety part to it since I’m taking valium now and all and I have attacks while driving and I think it’s anxiety.

Anyway, I’m afraid of antidepressants big time but maybe there is one out there somewhere that doesn’t have horrible side effects that I can try.

He gave me samples of Cymbalta but I’m really afraid of that one - there are some others I might try but in the mean time I may go talk to a therapist or something for my anxiety and probably depression now that my life has changed a lot in 2 months - can’t go much of anywhere.

I’m just trying to understand MAV and see if I have it - I may not.

Thanks all.

Hi - I just posted my recent diagnosis. I was dianosed with Meniere’s in June 2010. For 3 years my primary symptoms were chronic dizziness, neurological symptoms, hear pain, some hearing loss, and fatigue. I saw 10 doctors, got 7 misdiagnoses, and have taken numerous supplements & medications & treatments. I am an otherwise healthy female, late 50’s, post-menopausal - the doctors tried all the hormones, thyroid, etc. with me as well. I also take allergy meds. All this has been helpful but did NOT knock out the dizziness, etc. In September I started getting horrible headaches, and then I knew something was not right about the Meniere’s diagnosis. My neurologist and also David Buchholz (Heal Your Headache author) say that Meniere’s is too commonly misdiagnosed. Migraine mess with your sinuses, eyesight, hearing, neck, etc. etc. Get to a neurologist, read books, go on the migraine websites and forums. Keep records of your symptoms and how they occur. There’s tons of treatments out there. Let us know!!

Thanks. I just went to a neuro yesterday but he doesn’t really say what he thinks I have - could be MAV or some anxiety disorder but he wants to do a test for the brainstem first then maybe he’ll tell me. Yeah I always thought I had Meniere’s too but now they say I don’t. It’s the meds for MAV that I am not thrilled with. May just start off small. We’ll see. I may go to a therapist that might help too.

Thanks!!!

I am a licensed marriage and family therapist, and I think it’s just plain lazy and cruel when doctors dismiss female patients as having symptoms caused only by anxiety or depression. You may want to look for a female neurologist. Also buy Heal Your Headache (used on Amazon) and it will answer lots of your questions and uncertainty about your symptoms including the huge crossover between sinus, ear, motion sickness, etc. and migraine. My female neurologist did some office balance testing, looked at my previous brain MRI results, read my history, and listened carefully along with a billion questions. I was also hesitant to take preventative meds for migraines but my daughter already takes them and did fine with them. You probably don’t want to check out of your life for 2 more years (I know because I’ve wasted 3 on misdiagnoses and mistreatments). You can improve!!

I apologize… I misread your post… you’ve been ill on & off for 30 years. That’s an incredibly long time. My heart goes out to you! And, it is true that talk therapy can be helpful for life changes and support for medical issues as well. Hope it all goes better soon and they get to the bottom of it all.

Thanks. Yeah don’t know if we have any female neuros here or not but I can look into it. I just wish someone would say yeah I think you have MAV and stuff like that.

I am having menopausal issues galore and I’m sure that is adding to it - horrible fatigue and anxiety and probably depression aned hot flashes; so many things going on.

What kind of meds are you taking to prevent yours - anti Depressants? I don’t know why I’m so scared of those but I need to get over the fear I guess if I ever want to get my life back.

I have a lot of pressure in my ears and in the bone behind there especially today and it’s making me feel really off so I’m not going to drive to the store today and am pretty upset about that.

Up until 8 weeks ago things weren’t that bad.

Yep, menopause can cause or compound so many conditions. Maybe your neuro is trying to be thorough before giving you a diagnosis??? I’ve actually taken antidepressants in the past when I got depressed trying to find out what was wrong with me. The serotonin ones can actually work well for hot flashes, pain, brain fog, etc. in addition to depression. You can take 5-HTP for depression but it won’t do anything for migraines. I just started topamax (an anti-seizure drug) as a migraine preventative. So far so good though I’ll be taking a fairly small amount. My symptoms have already improved some in 3 days. I often get ear pain, fullness and pressure behind or in the ear area. However, these can be (atypical) migraine symptoms and it’s so misleading to us and to doctors unfamiliar with the HUGE number and kinds of migraine symptoms. I was doing relatively well myself until September which is the beginning of fall allergy season. And, you cannot underestimate barometric changes. BUY that book… you’ll be so glad you did. For me, being housebound with the dizziness has always been the absolute worst of all the symptoms.

HI iwntjrm,
I just wanted to tell you I was dreadfully afraid of going on meds. I cried and cried and fought tooth and nail…tried everything before I gave in…hypnotherapy, accupuncture, energy healing, supplements, counseling, reading every book, yoga, meditation…you name it,I tried it. I was NOT going to take any meds. I finally got so broken down and wasn’t sleeping for days on end…and I gave in. It’s not that bad…I"ve trialed a bunch of meds, and am currently taking Cymbalta, which wasn’t that hard to start taking…a little Klonapin helped ease into it. NOw getting off may be a different story, but for now, I don’t have any intention any time soon.
My life has been so much better since I started, and even better these past few days. I feel normal…after 20 months of feeling crappy and being afraid and worried and anxious and depressed…and dizzy!!! 24/7…it was terrible.
Counseling can help you cope with this, but chemistry is where the root of the problem is, and sometimes you need some help…the way a diabetic needs insulin…our bodies are just a bit off…I thank God there are meds available to help us…
if there wasn’t…I don’t know how much quality of life i would have…verrrrry little…
good luck!
Kelley

Hi jrm,

Glad to see you here and checking in with the mvertigo crowd. :slight_smile: I reckon you should just give the Cymbalta a go. If it doesn’t pan out after a good go, try Celexa as we chatted about before. Your story reminds me of another girl I knew years ago on another dizzy forum. She was really afraid of meds too – especially ADs. In the end, her doctor gave her Prozac in liquid form. She introduced it ultra slowly under the supervision of the doc and guess what? It worked! She regretted waitng so long to take a drug because it really gave her a life back that she had lost to MAV after suffering for 2 straight years.

If you go with Cymbalta I’m sure Kelley would be happy to give you lots of advice since she’s has lots of experience with it.

Make sure you read the second entry in on the Success Story thread from Colleen. She killed MAV with Cymbalta.

Scott :slight_smile:

JRM
I totally agree with the posts here that are pro-medication. You really do not have anything to lose other than possibly the depression and dizziness. Kelley - I was going to try acupuncture so that’s good to know that maybe it doesn’t work out that well…??? Scott - Prozac actually helped someone with MAV??? Most of the books/experts say that Prozac is vertiginous/dizziness producing. Thoug, obviously, I guess it would depend on a person’s issues, body chemistry, etc. And, Scott thanks for running such a great informative forum.
JRM- You’re in good company here… let us know how you’re doing!!

Gail
(miniandelsa is actually the names of my two adorable long-haired chihuahuas who never get tired of my dizzy spells)

Hi Gail,
Most of this stuff is caused by brain chemical imbalance…so if you’re just suffering from low serotonin, prozac can be a good fix. It is an easier one to get off of as well. I have seen a migraine site wher they mentioned upwards of 80+ drugs that were known to help Migraine…so it seems we could really spend our lives trying to find the right fit. I think that’s where a good doctor comes in handy. Celexa, another SSRI , is touted very highly by Dr. Baloh at UCLA, and several users of it on this site can tell you it’s worked well. Dr. Hain, a prominent MAV speciliast in Chicago, has a great site for his thoughts on different drugs…www.dizziness-and-balance.com. If memory serves me, he said Prozac was not great for migraine, but it’s worth a try.

Kelley

M&E,

— Begin quote from ____

Scott - Prozac actually helped someone with MAV??? Most of the books/experts say that Prozac is vertiginous/dizziness producing.

— End quote

Yup, it turns out that any of the SSRIs can be effective for this junk. It’s more about finding the SSRI that suits the person with MAV more than anything else – that is if an SSRI works for that person’s MAV. For some it doesn’t and they do better on things like an anti-convulsant for example.

I completely agree with you BTW about the way some of these neuros will throw the anxiety curve ball at women suffering chronic dizziness. I mean for 30 years? That’s nonsense. Unfortunately, MAV is really a dx of exclusion and the exclusion process is lifestyle mods followed by a drug/s if necessary. Light sensitivity is generally a dead giveaway that migraine is the culprit for many and not Meniere’s. I don’t get the full blown light problems myself but I hate bright light and prefer a house with dim lighting – candles are the best for me. I should have been born in 1710. :lol:

thanks! yeah i will be talking soon to some doctors for sure. I’m still not super comfortable with the cymbalta the other ones sounds better esp with getting off of them. nice to know Celexa could maybe help.

I’m going for the test on Tuesday and will go from there. I have my primary care and another dr at work so i’m sure someone will help me with meds if the neuro doesn’t want to give me anything else but cymbalta.

I guess i could very well have MaV with all my symptoms. I don’t understand the tremors though i guess that can be part of it.

def can’t handle bright lights or loud noises most of the time but esp when i’m not feeling well. been a really rough two months so i need to do something.

Wish me luck getting over my fear.

30 years!!! My heart goes out to you. I really encourage you to see a specialist in MAV. You did not say where you live but Chicago Dizziness & Hearing Clinic (Dr. Hain, Chuchi & others) is one of the best. I suffered 6 years ( Many Drs., Clinics, tests, etc…) before being referred to them, all it took was one visit and a few additional tests, some correspondence and co-operation with my local neurologist and I have my life back. Meds and lifestyle changes are still a work in progress but WOW what a difference.

Kenny I am in new mexico and supposedly am going to one of the best neuros in town. we don’t have that many doctors. I don’t have anything against him at all - i am just not fond of doctors right now since i haven’t had any luck in 30 years!!! i’ve never been a fan of medicine either since i’m so sensitive.

He will do the BAER test on tuesday to rule out the neuromas and all that which i’m sure will be okay since i had an MRI 3 years ago tht was clean and i think i had this test before too.

i just have to work on the medicine part. He has only had luck with certain antidepressants but my other doctors were willing to try celexa or someting but i know some drs say that helps MaV and others don’t.

someting will work out i’m sure.

my illness has changed over the 30 years used to just be seasonal allergies now it’s everything that bothers me seems like but then menopause can cause worsening of allergies and then there is the unseasonablly warm weather this year

I hope you get your meds figured out Kenny!

chris